Take a walk in my shoes

by on Saturday, February 13, 2010 22:38
This entry is filed under: Ileostomy

My name is Sara Randall, I’ll be 25 years old next month, and I have been living with an illeostomy bag since September 9, 2009. Obviously my story doesn’t start there. When I was in high school I was energetic, super athletic, always on the go, and to self conscious for my own good. When i first started to notice blood when I would go to the bathroom I was one, to embarrassed and two, way to “tough’ to mention it to my mother. Months went by until I finally told her about it and she took me to the doctor. He had me poop in a dish and he told me, yup theres blood in there. Well being that self conscious teenager I was I refused the colonoscopy saying “No one is stinking anything up my pooper!”  Right around the same time i got my first lovely kidney stone.

After that I continued on like there was nothing wrong. I wasn’t having really any discomfort that I could tell just the blood. I graduated and went on to join the ARMY. I love it, it was my childhood dream to be a soldier! I made it through basic training effortlessly, with the exception of my second kidney stone and became a generator mechanic. After graduation I met my now ex husband. We were married after knowing each other maybe 6 months. He was horrible, enough said on that topic! Once at my unit the bleeding got worse and along with it came stomach discomfort. To make a long story short I had the necessary scopes and no diagnosis could be made. I was medically chaptered out of my dream job.

So with my broken heart and my bloody poop i started a new journey. I left my ex and filled for divorce, I enrolled in school and did a lot of “living it up” for a few good years with no real problems other than some blood here and more there. I didn’t think to much of it. I became more comfortable with the fact that this strange thing was happening and I would joke about it with my close friends.  I continued to get the freaking kidney stones. I turns out the older I get and the more of them I get the bigger they become. In the span of maybe 3 years I had to have 3 lipotripsy procedures to remove some I couldn’t pass. What a pain in the ass that was!!!!

Almost 2 and a half years ago I met my now boyfriend Mike. I was kidney stone free and still bleeding when I would go to the bathroom. A year into our relationship Mike went out to California for a summer internship leaving me in North Carolina. The month he left things started taking a turn for the worst.

With the Army, a failed marriage, countless kidney stones, twice as many moves and job changes, as well as tons of other challenges to boring to get into here, I became this “tough bitch” as my mother calls me. At this time I was a personal trainer, my second dream job. I had been a personal trainer for about 2 years at this point and I was really into eating right and training hard. It was my life and I loved it. I was trying to train so I could eventually do a figure show so I was training harder and eating better than I ever had before. When the bleeding began to get worse I ignored it, I didn’t want to admit that something was going wrong because in my mind that would mean weakness.

About three weeks after the increase in blood the stomach pains and diarrhea started. Still I though I could tough it out and it would pass. I didn’t have health insurance at the time and I sure as hell wasn’t going to wrack up a bunch of medical bills. I went out to visit mike and I didn’t tell him was was going on because I was embarrassed.

A month later I was sicker than ever. I went back out a second time to see Mike and by this time I had told him and my mother about what was going on. When I got back home after my trip  I was in way over my head and I didn’t know it. I just kept plugging away. Walking around as though nothing was going on and I was fine.

Things got so bad that it started affecting my work. At this point I was the general sales manager for this training company and I just couldn’t stay out of the bathroom long enough to do my job. I ended up telling my bosses about what was going on. I still didn’t want to see a doctor because I still didn’t have insurance and because I was scared.

As scared as I was I was still joking and making light about it with my best friends. The best way to cope with it was to joke about it. Things go so bad that I was going through a roll of toilet paper in one night, and just thinking about how much that actually was makes me laugh.

The blood became horrible, and the pain was worse. I had dealt with pain in various forms all my life and this was just the same. Pain. It has always been easy for me to walk around in pain and show no sign of it. Pain to me was just an annoying thing I had always been able to ignore.

It wasn’t until I crapped my pants the first time that I thought ok I need to got to the doctor. I went and had a bunch of tests ran and nothing turned up. I needed to go see a gastro guy because my regular doctor though it could be Crohn’s or UC. Still without insurance I hesitated to go to the specialist.

Things continued to get worse and worse. I was going to the bathroom in my pants at least once a day, my work was really suffering and I was lost. Then about a week and a half before Mike got home I stopped going to the bathroom. Then only thing that would come out blood and a lot of it.

Mike finally came home on august 1 2008 and we moved into our first apartment together the same day. The very next day on the Aug. 2 Mike had to take me to the ER. I still hadn’t gone to the bathroom and I was in the worst kind of pain. I was at the ER for a total of only 2 hours. After telling the ER doc what had been going on he told me that I wasn’t constipated I just didn’t have anything left to poop out because of how long I had diarrhea. An x-ray quickly proved him wrong. He gave me a suppository  while I was there and of course that didn’t work. He sent me home telling me to pick up 2 bottles of citrate magnesium and drink them both. I did and I though I was going to die. Thank God for Mike, he was so great about being there for me.

Four days later we were supposed to fly up to New Hampshire to see Mikes family. I went back and forth trying to decide weather I should go or not and finally figured that I shouldn’t be left alone for that week and went. On flight up there I had an accident in my pants shortly after the flight took off. I was sooooo  pissed at the time and Mike was so calm and so supportive saying ” Don’t worry we’ll get there, get your bag, change your cloths and no one will ever have to know. Its going to be alright.” I would have lost it if it wasn’t for him!

Once we got there his parents were great. I couldn’t do anything except lay around. I felt so horrible and I was so embarrassed. The day before we were to leave I spiked a fever and was by far the worst I had been yet. Mike parents took me to the hospital and after being to told that I may not have made it another night my mother flew in from NY. She was terrified, she had no clue how bad things had really gotten because when I talked to her about it I always would tell her “Mom don’t worry I’m fine.” Even when she was told about my horrible condition by Mikes mother I still tried to tell her I was fine. I am a nut is what I am!

So after 5 or so days in the hospital they thought that I had UC and released me to follow up with my gastro at home. The day after my release my health insurance kicked in! Since I didn’t have a definitive diagnosis i was in the clear with the insurance. No preexisting condition.

I went home and went to a gastro guy in my town. He determined that I had Crohn’s. He put me on a ton of steroids and anti- inflammatory drugs. For a while they seemed to make things better and I was starting to get back to my life a bit. I had dropped about 25 pound over the course of those three months and I was ready to get back in the gym. The day I went back to work I was fired. My boss told me that because I was still not feeling good that I was best we went separate ways. It was BS but I knew that it was for the best. I couldn’t do that kind of work right then. After leaving that job I didn’t work again for almost a year because I was so sick. Sooner than later the meds stopped working and I started to regress. I was brought in for another colonoscopy and it went horrible. I woke up during and was so freaked out I transferred to Duke University Hospital and never went back to that guy.

All this while I was still using crazy amounts of toilet paper and still crapping my pants. The going to the bathroom in my pants was a huge pain in the ass but I still found ways to joke about it. It would happen all the time. In the car, while walking the dogs, when I was out for a run, in a store, anywhere and everywhere. I had to bring spare cloths every where.

Once I got up Duke my new gastro wasn’t convinced that I had Crohn’s but she wasn’t convinced it was UC either. This started the back and forth process. It lasted several months and through several failed drug treatments. The last drug treatment I tried was Remicade, it didn’t work. The next option was to talk to the surgeon. I went and had a cat scan done and it showed that not only was my colon extremely diseased but it was also one big hunk of scar tissue and was no longer working correctly. The final determination was that it would have to be removed. She told me about the surgery, about the bag, and about what to expect. I was terrified and Mike just kept telling me its going to be ok. He would say I had to do this because he didn’t want to see me sick anymore. I went home and got on the internet. Big mistake.

When I called and told my mother what needed to be done we both cried. I couldn’t even think about it without getting sick to my stomach. I was so scared, more scared than I had ever been in my life. A week or so went by and I accepted what needed to be done, schedule the surgery and started to prepare.

The date was about a month and a half away when I got really sick again and the surgery had to be moved up to within the following week. My mom was freaking out. I know I haven’t mentioned her much through all of this but she is my best friend and I would not have gotten through this without this woman! We scheduled her flight and waited. Mikes parents came down and spent time with us before the surgery and stayed for support. My mom flew in the day before and went to pre op with me. Once she saw that I was ok with what was going on she kinda let her fear go.

I had the surgery on Sept.  9 2009, it lasted 5 hours and 45 mins and it went as good as anyone could have asked. She got all the bad parts out and constructed my j pouch. It went so smooth and everyone was pleased with the out come. The recovery on the other hand was a different story. I was in so much pain every day I  couldn’t see the light at the end of the tunnel. My dad and my step mom came down and I could hardly even stand to talk with them it hurt so bad. I never knew such pain! There was one day the pain was so bad that the only memory I have of that day was seeing all these bright colors. My mom told me what had happened when I came back around the net day. She said that it was so bad that I sat up and asked for her cell phone. When she asked why I told her that I needed to call 911 and get some help up here. She said even though she was scared and worried I still made her laugh. She told me hun I think were at 911.

I had a poop bag and it was nasty and weird and I didn’t want it. The first bag change was horrible and it hurt so much I cried.  I was in the hospital for a total of 9 days following the surgery. When I was released I was still hurting but I was better and determined to go home and heal.

I was sent home on a Thursday, Friday I stopped peeing, I went 12 hours without going pee. My mom had to take me to the local ER to be drained. I left with a leg bag and a lot of relief. Saturday we rushed back in the middle of the night to have the leg bag taken off because it was causing me to much  pain and I just couldn’t stand it anymore. They took it out and sent me home. To my relief I could pee again. Sunday I woke up in even more pain. I called the surgeon and she told me that it sounded like a blockage and to get to the ER asap. So I went to my local ER again and the shipped me back up to Duke where I had to stay anther 3 days while the blockage passed.

While all this was going on, I was trying to get used to my new illeostomy bag. It was so hard and so familiar at the same time. For some reason I felt like I had been there done this before. It was strange, like da ja vu or something. Anyways it was nasty and I got poop on my hands a lot. Changing the bag was a pain in the ass. I would take the bag off and the stoma would start shooting poop out all over the place. I Hated it and I never smelled nastier poop before.

I was released and the following day I flew home with my mom to recover leaving Mike at home to take care of our dogs. While in NY I was still having all kinds of issues. First of all the biggest of my incisions had opened up and the area around my stoma separated from my skin and they both stung soooooooo bad. Second I stopped peeing again and had to go to the doctor to get relief. The doctor was great and he arranged a home care nurse to come and help me out. Third I started developing these large bumps on my skin, almost like boils. They were popping up on my but and in my arm pits and they freaking hurt.

I tired two different times to fly back home to Mike, the first time I was just not ready to travel alone so we put it off another 2 weeks. The second time I was ready, doing better than ever and I wanted to go home. The night before I was supposed to leave I had dinner at my dads. After dinner I was on my way to meet up with my best friend Michelle and on the way there I started getting cramps and I though wow…Odd…

I spent a few hours with Michelle and all the while the cramps were getting worse and worse. When I finally left they were so bad I was starting to get worried. It was late when I got to my moms so I didn’t want to wake her, besides I thought it would pass in the night. Well it didn’t and I didn’t sleep at all. In the morning my mom came to check on me and I was crying and balled up in pain. She asked what was wrong and I told her about the pain. She said “What did you do, what did you eat? I let you out of my sight one time and this is what happens.” Oh she was so upset. This was the day I was supposed to leave, supposed to fly home to Mike. Instead I had to go back to the hospital.

My mom took me to the small hospital in the next town over and from there the had to ship me to a bigger better place because x-rays showed 2 adhesions that had formed 2 blockages around my small intestine. Once at this bigger hospital the surgeon rushed in and said I have to operate with in the hour here’s the form sign it so we can go. I, excuse my language, shit my bag. This was nuts and I was freaking out.

They did the surgery, saved my life and made me feel better all in the same day. Later on they found out that the bumps all over me was a wicked staff infection and began treatment immediately. I became super sick all the sudden and had to have 2 blood transfusions and around the clock monitoring. At one point I stopped producing urine and they pumped me full of fluid for 2 days straight. This caused me to balloon up to this scary huge frog legged monster. I was around 110 lbs when I went in and I must have put 30 pound of water on. Thank god someone besides me noticed and told the doctor. They gave me a pill to help shed it off and I quickly did. I turned to my mother and honestly asked if I had stretch marks on my ass. She thought that was so funny, I did not.

Finally I was sent home and I felt so good. I was recovering right and healing fast. A few weeks later I flew back home to be with Mike and my dogs. A few weeks after that I was cleared for work and started working at the golf course I was working at before the surgery. Everything was going so good. I wasn’t sick anymore, I was back at work at back in the gym. The only thing I had to deal with was the dang bag. By the time I got back to NC I had a better handle on the bag and its many bad habits. It was easier to clean and change at this point.

Things have been going pretty good since my return to NC. I have had very few problems with the bag although just dealing with it on a daily basis sucks. I have had the bag leak a few times in the middle of the night making huge messes but thats really the extent of it. I do joke about it a lot because its easier but inside I can’t wait to get ride of it. Having this bag has been the biggest struggle of my life. It consumes my every though and I’m so self conscious of it. I have to try on at least 10 different outfits before I find the one that covers it the best. Showering is not an enjoyable thing anymore not to mention being naked.

I have tried not to let the bag run my life but its hard. A lot of times its easier to just stay at home in my comfy sweat pants then try and get dressed and go deal with people. My current job at the golf course has been great. The people there are really understanding at supportive.

On Feb. 5th I went to have a pouchogram done and found out that I have a leak in my j pouch. I was supposed to have my reconnection surgery this month, now I will have the small surgery to fix the leak instead. This will happen on the 22nd and I will have to wait 3 more months before we can try again.

I was devastated. I wanted to be put back together so bad. It took me a week to get over being upset about it. I have readjusted and found a way to get re-motivated and I’m pressing on. I have been going to the gym 5 time a week and forcing myself to get out and do other things. Mike has been a huge help through all of this and I am lucky to have his support.

I know that things are going to get better and I also know that things can always be worse.

I know that this is long but trust me it could have been much longer, I gave you the short and sweet version. Maybe I’ll get more detailed in later posts but I think that this will do just fine for now.

Thanks for reading, don’t mind the typos and good luck to everyone in this ever growing boat.

Sara

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104 Responses to “Take a walk in my shoes”

  1. avatar

    Elle says:

    February 14th, 2010 at 8:16 am

    Sara, I’ve read your story and the INSPIRATION in it to OVERCOME anything is OOZING in the words! Forget the typos and whatever else there may be, I am proud of you for pressing on. I hope that your BFF Mom and Mike continue to support you in every and all things. I pray that your reconnection surgery this month is a success! Best of Luck!

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    Sara Reply:

    Thanks for reading my story!!!! My reconnection has been put off until maybe may. I found out that I have a leak in my J pouch and have to have it fixed. Bummer! 
    Thanks so much for reading though!
    Sara

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    Mary says:

    February 14th, 2010 at 9:19 am

    Hi Sara, That is serious story. Anyone says that jpoucher’s haven’t been through a lot, I would always disagree. I’m you are on the mend even though you have to wait now for the pouch to stop leaking. Keep us posted and thanks so much for your sharing your inspirational story!

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    Sara Reply:

    Thanks for reading and commenting!!!!

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    lindsey remington (coleman) says:

    February 14th, 2010 at 3:45 pm

    wow sara i had no idea what horrible stuff you’ve been going through. Im glad to see that everything is getting somewhat better for you.. hopefully everything will get back to normal for you soon.

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    Megan Reply:

    Lindsey, it is great you are supporting your friend/family Sara. I am the wife of someone who went through similiar stuff as Sara and it is so important that we always keep in mind that their life will be “normal”, but that it is “normal” for a jpoucher. Jpouchers have maintenance of their health – and may have complications as the years go on. Always feel comfortable to ask Sara how she is doing? How is her jpouch? And always know that although she is no longer sick with her UC disease, she is a person living with a jpouch. My husband’s jpouch is excellent after 2 years, but he did recently have a blockage that caused a setback, and when I say normal that is normal for a jpoucher in that they have “normal maintenance”.

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    Devin Eckert says:

    February 14th, 2010 at 8:00 pm

    I thought I knew most of your story, but until I read this story end to end (and yes I cried) could I really get the impact of what you’ve gone through.  You are the strongest person I’ve ever met! I love you!!!

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    Molly Wagner Reply:

    I am going to agree with Devin, I though I knew most of the story but after reading the details, I cried too:-(. I still can’t get over how someone as healthy as you has to go through all this. I hope your surgery went well to fix the j-pouch. Stay strong girl, we’re all here for you. Love and miss you lots Peckers.

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    Eric says:

    February 14th, 2010 at 8:01 pm

    “So with my broken heart and my bloody poop i started a new journey” Classic! Thanks so much for sharing, and keep us updated. I’m sorry to hear about the results of your pouchogram. I was sewn up a few times just to have to be reopened. So, if you look at the bright side, at least you know ahead of time that something needs to be fixed. Stay strong!

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    jaqi morrow says:

    February 14th, 2010 at 9:47 pm

    Sara i am so sorry about your leak. I think your story is really going to help a lot of people. You have been through more shit (no pun intended) then anyone i know and yet you remain so positive and inspiring. YOU ARE AMAZING!!! I think the da ja vu means something. You are an old beautiful soul that has so much to share. You my friend are a bright light that shines. I am so honored to know you.

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    Michelle says:

    February 15th, 2010 at 3:00 am

    Sara I am so glad that you wrote this and that you didn’t hold back at all. Your words will inspire those who were just as scared as you were! Everything will work out for you, it always does! Even while you were going through all this you still managed to be the bestest friend a girl could ever want! I love you wifey:)

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    Josette Peck says:

    February 15th, 2010 at 5:18 am

    Sara, you are my hero!! Seldom are people so selfless in sharing their story publicly. Your Dad and I are are proud of you and ask God each night to hold you close and help you through all the trials your life holds. Keep your spirits up and always know you are not alone. Love, the wicked Step Mom

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    Cindy Willebrandt says:

    February 15th, 2010 at 8:53 am

    Sara, Wow I knew you were sick through Anne, but my gosh you have been through the ringer. Your very positive attitude, and your determination are amazing. You are a strong girl and I admire you. What an inspiration to other people going through the same thing! Your sense of humor is infectious Sara, things will turn around for you. I will keep you in my prayers. I know what a fighter you are, saw it all those years in sports at BCS. Keep the faith kiddo!!!

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    kolby says:

    February 15th, 2010 at 12:59 pm

    wow sara i had no idea and i can definately say that you are a very strong woman. im sorry that this has happened to you . keep your head up and stay strong . hope everything goes the way you want it and you get better. will it ever go away? let me know how things are with you. be good kid

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    Lorrie Knight says:

    February 15th, 2010 at 2:13 pm

    Sara,

    I am a mom of a 9 year old son who will probably have to have his large intestine removed due to ulcerative colitis. I am soo scared. I don’t know what to expect. They say that he will be able to have a J-pouch and that it would be better to do this before he reached puberty. The main reason he is having it done is because he is on so much immunosuppressant and that because of the threat of cancer he would have to have it removed in his 20’s anyway. So I would appreciate any advice I could get. Jake has been having problems since he was 3 years old. Your story reminds me so much of him. He has been pooping blood for years. His record for pooping in one day is 21 times. Reading this also breaks my heart since I knew he had to be in so much pain but not able to vocalize it. Any advice you could give me would be great. I will keep looking at your blog to see how your J-pouch works. I just hope I am making the right decision.

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    Sara Reply:

    Lorrie,
    I’m sorry to hear that Jake is so young and fighting this. Its horrible. I wont lie to you, when I first go this done,looking down at the bag I wished and even said “what did I do, why did I do this to myself.” I hated the bag I was so ashamed and grossed out by myself and the bag. But the bottom line was,  I was sick, really sick and I was unresponsive to any of the drug treatments and I had to have the surgery. Today I am grateful, even though I still hate the bag, that I have it and I am no longer in pain, and I’m no longer sick. The quality of my life has improved in so many ways! I am no doctor and I’m in a totally different place in my life than Jake is but I would have to say that the surgery would be so worth it. I think that it would give him his life back or at least the one he hasn’t known yet. Its a scary scary thing and I know that looking at it your thinking how, how can we go through with it. The end result is way worth it. I don’t know everything there is to know bout this situation but I do know that I am no longer sick and I can get out and enjoy being a young woman again. Jake is young and he will recover quickly, physically and emotionally, and before you know it he’ll be in his twenties living the life you always hoped he would. Talk to your doctors and surgeons and ask tons of questions. Be brave, this to shall pass!    

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    Lorrie Knight Reply:

    Thanks for replying Sara. I think hearing from an adult that having this done has meant a better quality of life does make me feel better. I also know that this would help to eliminate the threat that all these medication have on his body. I just have to have the guts (pardon the pun) to do it. My husband just had a kidney transplant 2 years ago so I feel like I am constantly in a medical crisis. Thanks again I will keep you updated on what we are doing.

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    Megan Reply:

    Hi Lorrie, Oh he is so young to have so much pain and struggle. Unfortunately, UC does not discriminate by age and hits all ages! To help you feel informed about the decision you are making you may want to listen to the two following webcasts. Here are links to two EXCELLENT webcasts on UC and surgery decision. The more info you have, the more informed and secure ya’ll will feel with the decision you make. Empowerment is key in having a healthy surgery and recovery.

    Making the UC surgery decision (interview with a surgeon)
    http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    UC Meds versus Surgery
    http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/

    The webcasts will help you realize that once the meds are tapped the colon is probably at “burn out” where it can no longer repair from drugs. That was Mark’s (my husband) situation and that was when he knew surgery was right for him. And just so you know, Mark has an excellent, happy and healthy life 2 years with his jpouch. He has regained a normal life that UC had taken from him for 7 long years.

    Also, be sure to visit http://www.jpouch.org and post on that discussion board because there are parents of youngin’s over there that can help you.

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    Megan Reply:

    Lorrie, if you want to read how the jpouch works and the process of surgery Mark went through you may benefit from reading through this sites:
    Colectomy:
    http://www.jpouch.net/photos/surgery-1/
    Life with temp ileostomy:
    http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/
    Takedown surgery for jpouch:
    http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/

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    Lorrie Knight Reply:

    Thanks Megan for the resources. I appreciate all the help. I am hoping that because of his age Jake will do well. I will post on what is going on just to get feed back and ideas. Thanks again.

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    Kristen Reply:

    Hi Lorrie, my husband was diagnosed with UC when he was 9, had his colon removed, and had an ileostomy and eventually a j-pouch. It was 30 years ago, so the jpouch surgery was fairly new, but he has never regretted it. Ironically, I was diagnosed with Crohn’s after we had already been married for 6 years, but I have often wished that removing my colon would get rid of my disease. I think you are absolutely making the right decision…..I can imagine how hard it is, though…. our oldest daughter is 9 and I can’t imagine her going through what her dad and I go through (and what Jake has been dealing with for so long). We will keep him (and your family) in our prayers. You’re a good mom……..

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    Lorrie Knight Reply:

    Wow Kristen that is great that your husband is doing well. How did he handle school during all of that? My husband and I are still trying to grasp the whole situation. Jake is actually in remission right now but he is on a large dose of immuno drugs. Also, even in remission when he has a colonoscopy he has inflammation and ulceration. We go back in April to talk about what to do this summer. But thank you so much for responding. Just knowing that someone had this done years ago and went on to have a normal life is an inspiration.

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    Theresa Reply:

    Lorrie,
    My son is 10 years old and had a total colectomy (the removal of his entire colon, a piece of his small intestine and 2/3 of his rectum) five weeks ago, after a four month battle with very aggressive case of Crohn’s. As very difficult as these past few months have been, my son climbed into bed with my husband and I last week, the day before he was to return to school after being out since October28th, and said, ” I’m so glad that I had my colon out! I can live like this, I’m not sure how much longer I could have lived with that pain!” His face, and tone, showed his relief! Initially mildly horrified, he has had very few moments of sadness over the look of his new pretty scared body. He wishes things were different, but has just moved on. For me, I finally have my son back! After almost losing him, this is easy to deal with compared to watching him suffer and be in the hospital for weeks at a time. As difficult as it is, he now has his 10 year old life back– and is happy! Although there is much sadness on my part regarding the future and such, and seeing his little body so scarred, I do not let it dictate our days. My fears were greater that the current reality. What tomorrow looks like? I don’t know. But, unfortunately, this is what it took for my son to become child again. Because our children are young, this, for them, will just be their life as they get older. I think some how it is easier than if they were 15 or so, and more on their own in that teenage vain, world. Oh, they will get there, but will have years of dealing and acceptance to fortify them.

    I am so sorry for your heartache, sadness, disappointment and suffering. Jake, and your entire family will be in my prayers. I believe in miracles! I pray that Jake will be cured!

    Mom to mom–Hugs!!
    Theresa

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    lorrie knight Reply:

    Thanks so much for the post Theresa. I know your situation is very similar to Jake’s. We go to the doctor this week to see what our next step is in trying to get his issues under control. He has been having a lot of joint pains lately which usually means that his colitis is acting up. Does your son have arthritis as well? Jake’s arthritis is caused by his colitis. Thanks again for posting your sons situation. Thinking of your and your family as well.
    Lorrie

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    DEEDEE Reply:

    Lorrie, I am so glad to hear your son is doing better. I disagree with the others who are in favor of the surgery right now. I was diagnosed with UC/Crohns at the age of 13 (1966). I am now 56. From 13 to 31 (1984), I was in and out of the hospital every 2 or 3 years with flare ups and after a round of prednisone and mainteance drugs, would get well. At 31, and without my dr.’s permission or knowledge, I wened myself off of the azulfadine (anti-inflammatory drug), and went into remission FOR 23 YEARS… no drugs and no flare-ups, only some episodes of diarrea…. until 2007, shortly after my my mother died. (By the way, my mother’s colon was removed when she was 32 and she lived with the bag until she died at 77, from complications with blockages, etc.) In 2007, I developed an intestinal abcess and had surgery to drain it. Three months ago, I developed an intestinal fistula, was scheduled for surgery, but it opened itself and drained on its own without having to have the surgery, evidence of how the body can heal itself. I am now considering remicaid treatments, which my Dr. says is used for the healing of Crohns, arthritis, asthma, and prevention of fistulas, which is my objective. My Crohns is kept under control with Lialda, a very fast-acting anti-inflammatory drug. The point I want to make is THINGS CHANGE. There will be medical improvements galore before your son is “in his 20’s”. My mother was encouraged to have the surgery when it was unneccessary. She could have been treated, but back then they didn’t know much about the disease and gave her no other options. I wish there had been the option of the reversible surgery back then. Things are different now and they will continue to improve. My only point is that unless it’s a matter of life or death, this is one operation that shouldn’t be treated as preventative or election surgery. It is LIFE=CHANGING. I saw what my mother went through. She was even suicidal at one time after the surgery. For your son, who is too young to make such a life-changing decision, just make sure you have tried every option, and seen many doctors, and read everything there is on the subject… before you make this decision for him. Drs. are like lawyers, they don’t all think alike or have the same opinions. For all anyone knows, before your son turns 20, there could be a CURE, or even available transplants. We don’t know what the future holds. At least then, he would be old enough to make his own decision. I must end by saying that I do not know the severity of his disease and the solution for him, but I just wanted to share my story and my mother’s story, in hopes that it may help you make a decision. I know how difficult this must be for you. Good luck, Lorrie.

  12. avatar

    Brevin says:

    February 15th, 2010 at 10:11 pm

    Sara Randall, you hardcore mother$%#@er. Congrats, you just became one of the reasons I joined the CCFA Team Challenge and why I keep raising money for our cause.
    You feel that urge to high-five? Yeah, embrace it!

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  13. avatar

    Jared Hansen says:

    February 16th, 2010 at 1:54 am

    Sara,

    Great post! When I read this I just had to laugh. We have gone through a lot of the same problems. It’s good to see that after all you have experienced you are able to see the bright side of things. I had a total colectomy on May 20th, 2009 and in just 5 short weeks on June 24th,2009 I had my takedown surgery. Although I am experiencing my first experience with pouchitis….. I have absolutely no regrets and would not hesitate to have the surgery again. You hang in there and in the end you will win this battle.

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  14. avatar

    Cristina says:

    February 16th, 2010 at 11:43 am

    Hi Sara, I am so sorry that you are going through all that. Your post was great and made me laugh.. My name is Cristina, I am 28 years old and went through everything you did about 7 years ago, reading your post brought back some memories. I know it is hard now and super frustrating, but just stay positive and focused. You seem extremely strong, so keep doing what you are doing and you will be okay. Take care of yourself….drink ridiculous amounts of water, even after the takedown surgery!
    I know you don’t know me, but if you have any questions regarding the takedown and what to expect, feel free to email me (e.cristina0681@gmail.com).
    -Cristina

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  15. avatar

    Pam says:

    February 16th, 2010 at 3:16 pm

    Hey Sara,
    First of all I miss you soooooo much!!! I had no idea you were going through all of this. I’ll be praying for you and anytime you want to talk give me a call. Tell Mike I said hello. I am so happy you two are still together and going strong. Mike is a good man for sticking in there with you, but you’re worth it!! Love ya Pam

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  16. avatar

    dianne says:

    February 19th, 2010 at 7:13 am

    I was diagnosed with UC 6 years ago after a two-year stint with C-Diff (a bacteria that I got from either a colonoscopy or anti-biotics). I understand everything you talk about but I am petrified to have my colon removed. I feel like maybe it is better for me to check out…it’s that bad. I have a teenage son who needs me but I know my illness has caused him grief. I don’t know anyone with this condition so I thank you for your information. If anyone can help me I’d surely apprecciate it.

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    Sara Reply:

    Dianne,
       I can understand that your scared, its a freaking scary thing. There are both positive and negatives to having your colon removed. When I first found out I needed to have it done I was really upset and scared but now that its gone, I’m not sick anymore and I feel better than I have in years. Stay strong and talk to your doctors. Everything will be alright. If you have any questions please feel free to ask. I’ll help where I can.

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    dianne Reply:

    Sara, Maybe you can help. I’ve been home from work because of UC for the last 2 months. I can no longer take steroids. The asacol doesn’t seem to be working. The vsl-#3 DS..well, I don’t think that’s working. I’ve been doing the generic for rowasa for 3 weeks now and though it has improved a bit, I’m still prisoner in my own home and the bills are mounting. What scares me most about the jpouch is that it will not work and that I will have had my colon removed for nothing. The gas is so horrific, really. It seems to stem from the stomach area anf then fill my intestines. What happens to the gas problem or does it stay the same. It must be horrible to let the gas out of the bag. My gas is so bad I think I would float away!!! Your answer is important to me because life is no longer worth living like this and I need to make a decision. Thanks so much!

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    Sara Reply:

    Ok girl, first things first, take a big deep breath and then a few more, everything is really going to be ok. When I first go sick, I was out of work for a whole year. I know exactly what your going through. I can tell you that when I was sick, I could not leave the house and if I did I would go to the bathroom in my pants. I can also tell you that I had a ton of gas too. Now I’m going to tell you that since I had the surgery I don’t have any if those problems. I am working full time my stomach doesn’t hurt at all, I don’t poop my pants and I hardly ever have any gas. 
        If I do have gas, yes it does go into the bag but, the bags that they have today have these great filters on them that help release some of the gas from the bag. If for some reason I have more than just a little gas ( which is only natural) and the bag fills up with air a bit, I just go into the bathroom and empty the bag like i would normally do if it were full. If I do have gas its usually at night so it really doesn’t matter all that much anyway. I don’t think that if you have the surgery it would be for nothing. The quality of your life will improve so much you will be happy you made the choice to do it. Its a freaking scary thing to go through but what your going through is even scarier. It sounds like your at the end of the road with this. If I were you, in the same situation, and I was, I would have to go with the surgery. I feel great now, and on top of that I am on no meds!!!!!!!! I hate having the bag but I love my life!!!!!! I love having my life back!!!!!!!! I would do it, you don’t much more to lose. The worst thing that could happen is you would have to go back to work!

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    Mark Reply:

    Dianne, Before I committed to surgery I was scared too. It just didn’t seem possible I could live a normal life without a colon, but then I had to realize I wasn’t living life at all with UC. My entire life had been stripped and controlled by my diseased colon and once I had exhausted all my medicine interventions I knew surgery was right for me. I knew it wouldn’t be an easy journey but I was mentally so ready because I was exhausted being sick and miserable. All I can tell you is that I’m two years out from my jpouch surgery and my life is 100% normal and the only thing I regret is not doing surgery sooner. We don’t have an C-Diff’ers on this site, but I do know the disease because some people over at http://www.jpouch.org deal with it. You should definitely go post over there on the discussion board and see if you can’t find other C-Diff people to talk with. Of course, you are always welcome here too :)

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  17. avatar

    dianne says:

    February 20th, 2010 at 9:43 am

    Thank you….I may take you up on that.

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  18. avatar

    melissa says:

    February 21st, 2010 at 11:07 am

    Wow, your story sounds so familiar. I tried for years to be tough and pretend that all the blood and pain were no big deal. Isn’t it amazing how we learn to cope with things that other people would never put up with. My husband once told me that if a “pin-drop” amount of blood were to appear on his toilet paper he would rush himself to the ER! Ha, silly weakling…I thought to myself. Turns out being tough is probably not always the best answer. I too let it get so bad that I wound up in the hospital. I spent a total of 42 days there the first time, and left with “the bag”. I had no idea what it was, in fact after an emergency surgery I woke up blissfully ignorant when they told me they had removed my colon and given me an illeostomy. It was at least 24 hours before I looked under the covers and discovered what they were talking about! That was April of ’09. I had my second surgery Dec. 4th to create the J-pouch, and I go on Tues. for the take-down. It has been one hell of a long year, I am looking forward to getting rid of the bag, but I would be lying if I said I wasn’t afraid. I too have had many complications, blockages, infections, multiple hospital stays… I think around 60+ days in the last 10 months. I used to pride myself on how fit, and tough I was…and now I can barely keep up with my 10 year old on a hike. I can’t wait to get back in shape and back to a “normal” life. Good luck to you, I hope your take-down happens soon. Contact me if you want to know how mine goes… I would be happy to share stories. I think that is how we all get through this mess. No one seems to know what I am going through like other ostomates and J-pouchers.
    -Melissa
    p.s. I am glad you now have a good support system with your current man Mike, he sounds like a keeper! I don’t know what I would have done this past year without the support of my husband.

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    Sara Reply:

    Oh you lucky bum, take down in 2 days!!!!! I’m so jealous ha ha ha. Really though I hope that everything goes great! I have the leak repair tomorrow and then I have to wait another 3 months to try and get the take down again. Do you have facebook??? If so we def should be pals!!! And yes I wanna hear about everything!!!! Good luck tomorrow and please let me know how it goes, I’ll be thinking about you!!!

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    melissa Reply:

    Sara,

    I have to tell you I have been reading messages on this blog for almost a year now, and this was the first time I had ever felt compelled to write anything about my story, or felt the desire to reach out to someone. I do have facebook and would love to be “friends”! I don’t know how to find people on there…so find me…Melissa Jentzsch. Is that all you need?

    p.s. I have not thought of myself as a lucky “bum” at all this past year!!! Funny choice of words :) I am betting you did that on purpose…

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    Sara Reply:

    I’m going to find you right now!!!!!!

  19. avatar

    melissa says:

    February 24th, 2010 at 5:29 am

    Sara,

    I hope your repair went well. I had the take down yesterday and just wanted to give you some info while it is fresh in my mind….
    So far this is by far the easiest of my surgeries. The pain in much less, and I am already pretty mobile. I was able to get up to pee just hours after the surgery, I did not have a catheter! I haven’t had anything to eat or drink really, just a little apple juice. I have been a little nauseaus but nothing too bad. I am going to start a clear liquid diet today. I will keep you posted how that goes! I would be lying if I said I wasn’t a little scared to start eating and drinking. Putting this new system to work is frightening…so many what if’s, and I think when you have been through all of the things we have all gone through you just know that anything can happen and often does! I will write more later as things progress…I hope you are doing well, and can schedule your hook up soon. Take care, Melissa

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    Sara Reply:

    I am soooo glad that your doing so good!!!! Sorry I haven’t made the connection on facebook yet I haven’t been on here in a few days. My surgery went good but as usual the recovery sucked. My stomach hurt, my butt hurt, and like with all the other surgeries I retained urine. I got home went to sleep for like 5 hours and woke up with a full bladder I couldn’t empty. I had to go to the dang ER and get cathed. They sent me home with a leg bag. The only positive to that situation was I had the poop bag and a pee bag and I could really get the rest I needed ha ha ha. I just laid there. I took it out later in the middle of the night because it hurt and I ended up peeing in the morning. 
    Anyways enough about that crap…. I am amazed that your up and around so fast. They told me that they don’t have to make any new cuts so thats for sure a plus. I can’t wait to hear about how the eating goes. Not having to have a catheter must be wonderful as you now now I have a hatred for them ha ha ha.

    There are a ton of what if’s and I’m thinking, with the more I read, there will always be. Like you said we deal with a lot of them, maybe at some point we’ll stop being surprised when on happens. I doubt it though. Lets just hope that since this is the last major step that all the what if’s are behind you. Fate needs to step in and call the game here. Enough is enough now!

    Ok I looked for you on facebook and there were 2 ladies with your name, I friend requested both so one of you is going to see it and say who the heck is this broad and deny me and the other is going to say this is the girl with the poop bag and accept me! So until that happens, I can’t wait!!!

    Im so glad that your doing good!!!! Your give me hope!!!!

    [Reply]

  20. avatar

    Krystal says:

    February 24th, 2010 at 8:12 am

    Hey Sara – I feel your pain… I suffered for 16+ years with Crohn’s, and unfortunately led to a permanent ileostomy. They had to take everthing from the end of my small intestine so I don’t believe that a j-pouch is in my future. I can relate to the pain, blood, accidents, etc… no fun at all, but like you I kept going… I was in the hospital for 24 days… SOOO not fun, but here I am almost 2 1/2 years later, dealing with this stupid thing, but doing GREAT!! God is good but does work in mysterious ways… I hate that we had to suffer, but you are right, things could have been so much worse… I am thankful for my family and friends as they help me get through it and continue to do so… I hope that all works well with your repair and that you can get your jpouch soon!! Take care!!

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    Sara Reply:

    When ever I used to come to a problem in m life when I was younger my grandma would always tell me “This to shall pass” She was always right, it always did.

    I keep those four word in the front of my mind when things are getting rough and the rough patch always passes. 

    You never know about the future. They may come out with some great new pouch for someone in just your situation. It seems like this is a growing problem and we have to think that there are some smart people working on this!!!!

    Its good to hear that your staying positive!!!! Keep it up!!!! This too shall pass!!!

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  21. avatar

    The wise old lady from Sinclairville says:

    March 16th, 2010 at 10:19 am

    Your story of triumph, strength, and will power are why you’re of my favorite inspirations.
    Keep on Rock’n that determination I love so much, and remember… This is only a test conducted by our friends and wise teachers at Spirit World Productions…. LOL

    “Today’s struggles are only memories in progress”. Kristina M Wiles

    All my love and support!

    [Reply]

  22. avatar

    Theresa says:

    April 15th, 2010 at 9:22 pm

    Sara, I was pretty shocked when I saw your pictures and thought, “Wow, she has a hot body!”
    Your figure, the one you worked hard on, supersedes the ostomy and scars. They really do take a back seat to your attractive shape. You are an inspiration! My 10 year old had his entire colon removed five weeks ago and is finally feeling well. I have my son back! Your pictures give me hope that he too can still have an attractive body even with his ostomy and scars. I’m just glad that he is still here with us!! And he is still beautiful no matter what! But as he gets older, it is nice to know that he can still have some normalcy in the “good body” department. Thank you for that. Thank you for sharing!~
    (feel the need to tell you that I’m not hitting on you–I’m old enough to be your mom– and would be proud to be!)

    Wishing you the best of everything!
    Theresa

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    Sara Reply:

    Theresa,
    Thanks for saying that. I work very hard on being healthy and in-shape. The scars that your son and I and everyone else who have had this done are badges of honor! They show us all that we have been through and what we have accomplished. At first I was worried about how I would feel about the scars but the more I though about it those feelings went away. Its just skin! Besides, they will always be great conversations starters! Once your son is completely comfortable with everything he has gone through, he will most likely want to share his amazing story, and those scars and his journey will inspire everyone he tells!

    [Reply]

  23. avatar

    dianne says:

    April 30th, 2010 at 4:22 pm

    Sarah..You had helped me before and I need your opinion. I guess I am still trying to hol on to my colon but it doesn’t look good. My UC has gotten worse and now seems to be in the entire colon. My new doctor at Mount Sinai Medical Center in New york just put me on hydroxychloroquine. 4 pills a day. I don’t see any information about this medicine and UC. Have you heard of It? If anyone out there can help, please let me know. Thanks for being there…really

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    Sara Reply:

    Dianne, No I haven’t heard of that medication. What did your doctor tell you it would do, what are you to expect with it? If you are so sick, and the UC has spread, why are you trying so bad to keep the thing thats making you sick. If you had it taken out it would be like night and day. You would be put under for surgery sick and wake up healed. Yes the bag sucks but the truth is that if you let the uc get to bad you can compromise your chances of being reconnected. Talk to a surgeon and at least see what your options are. It will be good to know where you stand with it. If you decide to have the surgery I will help talk you through everything and give you lots of encouragement. Please don’t let yourself suffer with this. Its not fair to you or your family! Take your life back girl! What is your email? I will send you my number so we can really talk.

    [Reply]

  24. avatar

    dianne says:

    May 22nd, 2010 at 3:20 pm

    Sarah, My email is pbegonia@optonline.net. Hd my first Remicade infusion thursday. My plan is to try a few more medications, possibly fly back to the mayo clinic for second opinions and if that doesn’t solve any problems…then.. snip, snip! I mean, what else can I do? Enough is enough already. I know you hear this all the time, Sarah, but you are truly remarkable. I live on Long Island but maybe we can meet someday. The number of people you help must be an amazing. I think I’ll email Oprah about you!!!!! You are my little hero. Thank you soooo very much for being such a powerful light in my day!!!!Please, please stay in touch. ianne

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    Sara Reply:

    Dianne,Its been awhile, how is the Remicade going? I have to tell you, my doctor is blaming a lot of my problems on the Remicade. I have had a leak 2 times now and my doctor has told me that she thinks its because of the way the Remicade effects your immune system. At the beginning of all this my surgeon told me that I couldn’t have the take down surgery until I had been off the Remicade for a year. We tried soon…leak (Feb22), we tried again in 3 months (June 8)……leak. May 20 would have been my offical year off Remicade. My surgeon is hopeful that this next attempt at take down will be it. I have testing on sept 3 to find out if I’m leak free. It would be cool to meet up with you some time. I think that there is a lot to be said about strength in numbers. We sick people need all the support and who better to get it from then people who have gone through the same things. We are the only ones who truly know what its like. I hope that your finding relief in the infusions and Ill be thinking about you!!!!

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  25. avatar

    Lorrie Knight says:

    May 22nd, 2010 at 7:43 pm

    Well we took Jake to the surgeon a few weeks ago. He wants to do a few things before we decide about taking our Jake’s colon. First because Jake started having problems at 3 years old he wants to conference with his gastroenterologist and several pathologist at Children’s Hospital. He will present Jake’s case to the pathology conference they have at the hospital. Jake will be having a colonoscopy on June 25th and the surgeon will be in there to review the colonoscopy with Jake’s gastroenterologist. We meet back with the surgeon on July 8th to discuss everything. I really liked his surgeon. He agreed that removing it while Jake is young would be the best option mainly because of the amount of medication Jake is on now. The surgeon did say that they should be able to both procedures through a scope.

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    Sara Reply:

    Lorrie,
    How are things going with Jake? I have been thinking about him and your family. I hope that your getting the answers that you want and that everything is going as good as it can for all of you! Hang in there and remember that this to shall pass!

    [Reply]

  26. avatar

    John says:

    June 5th, 2010 at 9:53 pm

    Hey, Im going through my jpouch surgeries now. Had a leak in March, so we waited till now for the next xray. It shows a leak as well, so now I will have surbery in a week fix that, and then 4 weeks later do another xray.

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    Sara Reply:

    Welp, I found out on the 28th that I have a second leak. Its coming from the connection at my rectal stump. It has disease in it still and after this long, its not going to heal. This Wed. my surgeon is going to go in and remove that part and try to stitch my jpouch right to my anus. Were not sure how its going to go, she told me that I could go into surgery and wake up in an hour and she would have done everything through my bottom or I’ll wake up some time later and she will have had to do major surgery. She also said that chances are its going to be major. 

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    John Reply:

    Pretty crazy. I was tired last night when I read this blog. I just re-read the whole thing. Your story is so so similar to mine. I was super active, and super healthy up until I turned 21. Then my story pretty much follows the same course. i started bleeding for no reason, and I just ignored. I too didnt have insurance, so I pressed on for years and years. Finally around 25 I almost died, and ended up at Harbor UCLA medical center. At that point they diagnosed me with UC. They put me on steroids, blah blah blah. Long story short, I did go in to remission after about 2 years. i was living life good for about 3 years. Then started my 30s, started a flare, and eventually lost my colon. The dates are almost exact to yours. I beleive I had my colon out 2 days after you did. I had mine done in the 3 step process, so I went in Dec 12 for step 2 (j-pouch creation). In march I had a leak in my pouchogram. Just a few weeks ago I still showed a leak in my pouchogram. In about a week Im suppose to have my repair surgery, and then will try again a month later for a takedown.

    Nobody really knows what we go through. In my life I’ve only met one other person with Chrohns, and it was a huge relief to find a person that actually understood.

    I wish you the best of luck. I hope that you wake up 90 minutes after your surgery and all will be right in the world. Ive had tons of set backs too, so I hope that you get a spot of good luck.

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    John Reply:

    Oh yeah, my best friend in the world’s name is Bryan Randall. I doubt theres any relation to you, but interesting none the less.

  27. avatar

    patricia ferraro says:

    June 17th, 2010 at 4:29 am

    hi!! i just had my reversal done may 25 and and now living with my jpouch. recovery is really hard for me but i know in the long run it will be worth it! i have 3 kids and the most supportive husband a wife could ask for. Please e-mail me with any concerns or questions as i would love to talk to someone who is living with the jpouch! thanks ! pat

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  28. avatar

    SSG William P Girard(Bill) says:

    July 21st, 2010 at 2:13 am

    Sara, I have been watching your blog since you sent me the link, I have told you this on facebook, but you truly are an inspiration to so many people. I have passed on this link to many friends and family members. I have even shown it to some of my Soldiers. You are an incredible young lady. When we served at Ft Bragg together, I would have never known you were not well. Your tenacity, vibrance, and shear determination should be an example to everyone. It has been for me. I wish you all the best, stay strong, and know, mine along with many are praying for you.

    Your Grandmothers words, “This too shall Pass”, in my Family it was “Never Quit” I tell my aging self that every morning I wake with some other ache and pain and I hear my dad in my head saying, “don’t let them beat you” They weren’t threats they were motivational statements. Now I wake thinking, and after I say to myself my fathers words…I say “Sara is fighting and helping others, why should I stop?” God Bless you kiddo, and yes…This too shall pass.

    Bill (FOB Warrior, Kirkuk, Iraq)

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  29. avatar

    dianne says:

    July 21st, 2010 at 5:55 pm

    Sara, I have been away from the computer for quite a while now and did not know you were going through this. My thoughts are with you and I pray that you reach a full recovery very quickly. I agree whole-heartedly with the gentleman above..you are special..very special. I tell many people about you but I don’t think they understand ( not having UC.) UC is quite a crazy thing….who even thought about anything like this ever happening. I will come to this website daily to see how you are doing…You’re a great girl and you deserve the best! Dianne

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  30. avatar

    lorrie Knight says:

    July 24th, 2010 at 7:29 pm

    Ok I had posted on her several months regarding my 9 year old son who has ulcerative colitis. We have been to see his surgeon and are just waiting on the time frame the doctor decides to remove his colon. But I have a question for those who have the J-pouch. How many times do you go to the bathroom in a day? His surgeon feels that his surgery would be considered a success if he only goes 6 times a day. Just wondering. Still scared to death that we are having to make such a drastic step in order to make him feel better.

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    Sara Reply:

    Lorrie,
    I still have the bag and I have to  empty it several times a day. It is no where near as many times as I had to go before the surgery. Now after I have the take down, I couldn’t tell you. I have talked to other who have the jpouch and the have to go a few times a day as well. I think that going to the bathroom several times a day and not being sick will be alright with me. Nothing could be worse then it was before. As long as I’m not sick, just pooping again will be A-mazing!

    [Reply]

  31. avatar

    Donna says:

    July 27th, 2010 at 5:10 pm

    Dear Sara, I just read your long, excellent post from February 2010. It is devastating you went through so much, poor baby. I say baby because I was so much older when I was diagnosed with UC. I’m 51 now and just finally had my colectomy with ileostomy. I am worried, what ever happened with your reconstructive surgery? I certainly hope you are ok. I mean, I’m sure you are ok, you are a strong person and if perhaps you ended up staying with the ileostomy, at least you have a good support network. If you can, let us know what happened. honestly, i’m nosing around in these sites and blogs because i will have to make a decision within the next 6 months whether to try for the J-pouch (they could not construct it at same time as my colectomy, i will have a 3-step) or just stay with the ileostomy. it’s on my mind a lot and i am very torn. Bless you, Sara, I sure hope you are doing ok at this point.

    [Reply]

    avatar

    Donna Reply:

    Sara, I just saw your comment from June that says you were having another leak repair, so there is part of the answer to my questions above. Best wishes, woman. I agree with all those people: you are amazing. We are all pulling for you!

    [Reply]

    avatar

    Sara Reply:

    Danna,
    Sorry it took so long to get back to you. I really throw myself into work when I’m not recovering for what ever surgery I just had ha ha. I did have to have another leak fixed on June 8th. What a pain in the but that is. (literally) I’m finding that no matter what type of surgical procedure I have done the recovery is getting worse and worse. I have my next attempt scheduled for Sept. 8th. I have the leak test done on the 3 and Ill know then if I can have the take down! keep your fingers crossed for me!!!! 

    [Reply]

  32. avatar

    Sara says:

    August 15th, 2010 at 2:13 pm

    Dianne,
    Its been awhile, how is the Remicade going? I have to tell you, my doctor is blaming a lot of my problems on the Remicade. I have had a leak 2 times now and my doctor has told me that she thinks its because of the way the Remicade effects your immune system. At the beginning of all this my surgeon told me that I couldn’t have the take down surgery until I had been off the Remicade for a year. We tried soon…leak (Feb22), we tried again in 3 months (June 8)……leak. May 20 would have been my offical year off Remicade. My surgeon is hopeful that this next attempt at take down will be it. I have testing on sept 3 to find out if I’m leak free. It would be cool to meet up with you some time. I think that there is a lot to be said about strength in numbers. We sick people need all the support and who better to get it from then people who have gone through the same things. We are the only ones who truly know what its like. I hope that your finding relief in the infusions and Ill be thinking about you!!!!! 

    [Reply]

  33. avatar

    lorrie knight says:

    August 15th, 2010 at 3:34 pm

    Sara,

    Jake has had a busy summer. We have been meeting with the surgeon several times and his gastroenterologist. Jake had his 9th colonoscopy this Summer. They found pseudopolyps on this scope. The surgeon has been consulting with other surgeons/pathologist on his condition. We meet back with him in Sept. Jake had a bad flare up right after the scope and had to do another round of prednisone. He is much better now though. Thanks so much for asking about him. It has ease my mind reading your blog. Will keep you updated. Hope you are doing well.

    [Reply]

    avatar

    DEEDEE Reply:

    LORRIE, I POSTED THE FOLLOWING IN REPLY TO YOUR FIRST POST SHOWN ABOVE, BEFORE I READ THIS ONE, SO I COPIED IT HERE. PLEASE KEEP ME POSTED ON JAKE’S PROGRESS…………… Lorrie, I am so glad to hear your son is doing better. I disagree with the others who are in favor of the surgery right now. I was diagnosed with UC/Crohns at the age of 13 (1966). I am now 56. From 13 to 31 (1984), I was in and out of the hospital every 2 or 3 years with flare ups and after a round of prednisone and mainteance drugs, would get well. At 31, and without my dr.’s permission or knowledge, I wened myself off of the azulfadine (anti-inflammatory drug), and went into remission FOR 23 YEARS… no drugs and no flare-ups, only some episodes of diarrea…. until 2007, shortly after my my mother died. (By the way, my mother’s colon was removed when she was 32 and she lived with the bag until she died at 77, from complications with blockages, etc.) In 2007, I developed an intestinal abcess and had surgery to drain it. Three months ago, I developed an intestinal fistula, was scheduled for surgery, but it opened itself and drained on its own without having to have the surgery, evidence of how the body can heal itself. I am now considering remicaid treatments, which my Dr. says is used for the healing of Crohns, arthritis, asthma, and prevention of fistulas, which is my objective. My Crohns is kept under control with Lialda, a very fast-acting anti-inflammatory drug. The point I want to make is THINGS CHANGE. There will be medical improvements galore before your son is “in his 20′s”. My mother was encouraged to have the surgery when it was unneccessary. She could have been treated, but back then they didn’t know much about the disease and gave her no other options. I wish there had been the option of the reversible surgery back then. Things are different now and they will continue to improve. My only point is that unless it’s a matter of life or death, this is one operation that shouldn’t be treated as preventative or election surgery. It is LIFE=CHANGING. I saw what my mother went through. She was even suicidal at one time after the surgery. For your son, who is too young to make such a life-changing decision, just make sure you have tried every option, and seen many doctors, and read everything there is on the subject… before you make this decision for him. Drs. are like lawyers, they don’t all think alike or have the same opinions. For all anyone knows, before your son turns 20, there could be a CURE, or even available transplants. We don’t know what the future holds. At least then, he would be old enough to make his own decision. I must end by saying that I do not know the severity of his disease and the solution for him, but I just wanted to share my story and my mother’s story, in hopes that it may help you make a decision. I know how difficult this must be for you. Good luck, Lorrie.

    [Reply]

  34. avatar

    dianne says:

    April 9th, 2011 at 4:33 pm

    Sara, I have not heard from you in a long time. How are you doing? Please let me know. I have been on remicade for about a year and although my UC has improved , the side affects have caused me to stop treatment. Don’t know what the next step is…What a pain in the ass. you still give me strength…Please, please…let me know how you are! Dianne.

    [Reply]

    avatar

    SRa Reply:

    dianne, I’ sorry to hear that the remicade side effects got the best of you. That stuff is pure poison. I hated being on that stuff. So what are your doctors saying about you coming off of it? I’m actually doing really good. I found out last friday that I’m finally getting my revesal. I’m really excited about it. Other than that mike and I got engaged in january, I’m back in school full time. I tried out for the volleyball team at the college I go to and I made the team! I’m the oldest girl on the team by about six years and the only one that has had such crazy health problems. its so much fun! Hang in there girl. Keep on fighting! You know that I am always here if you ever me need anything even if its just to talk, just let me know!!!!!!

    [Reply]

  35. avatar

    Amanda says:

    May 9th, 2011 at 6:35 pm

    I am very sorry to hear that you had to go through all of that. I cannot even imagine how you must have felt. I will keep you in my prayers. I wish you many many blessings in your life.
    Sincerely,
    Amanda

    [Reply]

  36. avatar

    Rhuganir says:

    May 15th, 2011 at 8:38 am

    So you have the ileostomy permanently now? I think you are so lucky to have people in your life that were so understanding especially a your guy Mike.
    Ileostomy since 2004
    Roldana

    [Reply]

  37. avatar

    Rhuganir says:

    May 15th, 2011 at 8:40 am

    Its so hard for me to date even though its been over 5 years for me. Any insight on this would be helpful. You are very stong

    [Reply]

    avatar

    sara Reply:

    my ostomy isn’t perminate, in fact I’m having it finally reserved tomorrow morning. dating is hard. I think that being out right and open about your situation is always the best! if you can lagit all out there and they understand they can figure out if they can deal with it. not every one can and if they can’t then forget them!

    [Reply]

  38. avatar

    Derek says:

    June 23rd, 2011 at 10:56 am

    Hi Sara, How did your reversal go? I’m in the same boat as you with an internal leak and had to go back for repeat gastrograffins (pouchograms?) Got my j-pouch Nov 2009 and have been given a reversal date of 26th July so now starting to get a bit nervous. My leak was never surgically repaired but allowed to heal naturally, there was talk of fitting an endo sponge (google it) but there is no experience with it in the UK so the surgeon was not confident about trying it. Would be nice to hear how you’re getting on now. Rgds Derek

    [Reply]

  39. avatar

    dianne says:

    July 24th, 2011 at 1:24 pm

    Hi Sara. I’m thinking about you and hoping all is well. I know the last time I heard from you everything was great. Someday i would love to meet you; you are an inspiration to me. I’ve been in remission since the remicade but the side affects are getting to me so I’ve decided to stop the treatment. I think I may have made that decision before but got the treatment anyway out of fear of having severe symptoms again. this time is it though. My options are humira or 6mp or ofcourse, surgury. I’m so scared, sarah. I’ve never felt so alone. The only time i talk to people that understand is when I get the remicade infusions. The other patients have been great. I seem to be the only one that has side affects though. When you get the chance, please write, o.k. I’m pretty sad today. I have decisions to make. What scares me about the surgury, besides the obvious, it that it is permanent. If a cure came tomorrow, I would be out of luck. Thanks for listening!!!!

    [Reply]

    avatar

    Sara Reply:

    Dinne,
    Sorry it has taken me so long to get back to you, things have not been going good at all. I had the reversal surgery on may 16th and I lasted about before I sprung a leak. I was rushed back to the hospital and into surgery. I had gross contamination and several infections. The guy the did the surgery wasn’t my regular surgeon and after he cleaned me out he gave me the ostomy back. About a week after that surgery I had to have another surgery because I was still really infected. I ended the summer with 3 major surgeries and over a month in the hospital. I just went up to see my regular surgeon and she dosnet have a clue what this other surgeon did to me. She can’t make sence of anything he has said to her and she can understand the surgery notes. They rant really sure why he gave me the bag back either. I have to go up for a bunch if tests so they can figure out my anatomy is now. She is confident though that she can still reverse the bag.  It’s been a huge mess. I’m trying to pull it together because school is starting up again in 2 aweeks and I play volleyball for them. Practice stars this Monday. Why are they telling you your bag would be for ever? Usually with uc it can be reversed. Try the humara. I have heard good things about it. Listen, I’m going to take a risk here and post my number out in the open. Please, if you ever need to talk call me. We all need people to talk to who understand what were going through. Dealing with these things every day is just way to much. So like I said please feel free to call me. 919-368-6324. I hope that this message finds you feeling a bit better. Stay strong and keep your head up and remember you have people out there who care about you!

    [Reply]

  40. avatar

    Amanda Heath says:

    July 27th, 2011 at 12:30 pm

    Hey There,
        I had the bag last year for only 6 months and I was an absolute mess! I hope everything is good now! I had the reversal done just in December 2010 and for the first while I’d still wake up in the night thinking I had to check it or being cautious about what I ate but when it clicks that it’s really gone, It’s the BEST feeling in the world and you’re thoughts will be your own again! Promise! Good luck hun!

    [Reply]

  41. avatar

    Sunny says:

    August 1st, 2011 at 12:56 pm

    Hey girl, I know exactly everything you’ve been through and are going through. Have you been put back together yet?? I had my takedown almost 6 years ago. To this day I have minor health issues that probably stem from the illness I had (UC), but I would really love to keep in touch. If you have twitter follow me @sunchbunny. If you have facebook add me /sunnymichelle. Much love and peace to you dear.

    [Reply]

  42. avatar

    Donna Corman says:

    August 1st, 2011 at 1:49 pm

    Dear Sara, I am still subscribed here. I can’t tell you how my heart aches as I (nosily) read your post about how messed up things have been since your takedown. Arrgh. I just want you to be well. And I know you want the same. For me to say, “hang in there,” well, that would be beyond lame. So, I’ll just say that I’m sending you caring and healing vibes today, and every day. Donna C., Jackson NJ

    [Reply]

  43. avatar

    dianne says:

    August 6th, 2011 at 5:20 am

    Thank you for getting back to me sara. It’s amazing how half these doctors (or should I say ‘jokers’…to be kind….get out of medical school. But that’s a whole other story. I think you should be the national spokesperson for crohns and coilitis. Really. You are young, beautiful, intelligent, personable, caring and God knows you’ve pretty much been through it all with this disease. I vote sara! You know my thoughts are with you. Thanks for your number, that was very thoughtful and generous. I promise I will only call when absolutely necessary. I have a few friends that mean well but really don’t have a clue. I can no longer explain to them because after I do they come out with something that tells me they just don’t get it. but that’s o.k. I understand. The remicade is out..side effects were killing me. Yesterday, I took the train into manhattan because, believe it or not, I couldn’t get in touch with my doctor. I showed up at his office and said..I need a game plan. The outcome was 6mp until insurance approves humira. Again, I know I say it all the time but I mean it …you’re my angel..one of the 7 people I’ll meet in heaven (if you ever read that book). Once your doctor straightens out the mess the other one caused, you’re due for a long, long stretch of good luck! Seriously, it’s time. I will talk to you soon, sara.

    Dianne

    [Reply]

  44. avatar

    Michelle says:

    October 27th, 2011 at 9:28 pm

    Hi Sara – just found your blog even though my ostomy nurse told me to stay off the internet – ha! I’m having rectal cancer surgery monday and will have an ileostomy or colostomy – thanks so much for sharing your story, it was actually really helpful to me. i hope you are doing well!

    [Reply]

  45. avatar

    James says:

    December 9th, 2011 at 5:58 pm

    Hi Sara,
    I read your story, and your unflinching strength and spirit is a great inspiration. I’m 19 and have had UC for about 2.5 years. I just had my first colonoscopy today (because I kept losing blood even while on medication) and my doctor said my UC is quite bad, and he upped my dose of prednisone and said I may have to go on remicade after a while, and if that doesn’t work I might have to have a colectomy. I am so afraid of this…I wouldn’t have felt so bad if I was 50 or so, but being 19, without a significant other there for support, and also not having good support in general, as I am an introverted person with a few close friends, and a strange family situation, just makes it all so much worse..I really need emotional support, and I’m finding it difficult to talk about. I just need to talk about it really. Is there some way I can contact you in a more private way than just leaving a reply like this? I feel like I have to talk to someone who has gone through all this. I guess I’ve got some nerve – a complete stranger trying to talk about this stuff with you – but I don’t know what else to do..

    Thanks for anything,
    -James

    [Reply]

    avatar

    melissa Reply:

    James,

    Sara and I have been corresponding for several years now.  We first met when I read her post on here.  She and I “chat” often about the ups and downs (mostly downs) of this experience.  All of us with UC have been through so much.  We need each other to lean on, to talk to, and sometimes just vent.  It is always good to know that you are not alone, and having a friend like Sara has helped me in that way.  I’m sure she will be a great support to you, she is a survivor and an all around awesome person!  Just wanted to let you know that there are others that can be there for you too!  I am available if you ever want to talk as well! you can look for me on Facebook and we can chat that way!  Melissa Jentzsch 
    Take care, hang in there….and KEEP FIGHTING!
    ~Melissa

    [Reply]

    avatar

    Sara Reply:

    Hey girl! Thanks for saying all those nice things about me, you rock!!! I found out I’m having another surgery on the fourth. Nt the take down but something eles. I guess something is wrong and it needs to be fixed. I won’t find out until dec 15. This will be surgery number 9! I can’t even believe it. Oh, that stupid Jessica girl was at it again the other day. Man she drives me nuts! Anyways, I’m thinking about you! Hope you’re doing well! Let’s chat soon!!!!
    Sara

    [Reply]

    avatar

    Sara Reply:

    James, of course you can contact me. My email is saramarierandall42@yahoo.com and you can find me on facebook using that email or Sara Marie Randall. I know that what you’re facing is really scary and I will help as much as I can. I have made a few great friends because iPod this blog and having them has helped me in ways you will come to know. Melissa is amazing, just saying. 
    Stay positive James, we are all here for you! You can get through this! Seriously get ahold of me. 
    Sara

    [Reply]

    avatar

    James Reply:

    Thanks a lot for the support you guys! Sorry for the late reply – I definitely will be in contact once I’m done my exams so I actually have time to discuss things haha. Will be in touch soon!

    [Reply]

  46. avatar

    Donna Corman says:

    December 9th, 2011 at 7:46 pm

    Hi James, Hi Melissa! I too have struggled with years of uncontrolled bleeding. And the prednisone (YUCK) and all the different meds. For what it is worth, eventually, I did have the colectomy. We can talk about what all that means DOWN THE ROAD. right now, it can still happen for you that you go into remission or become controlled. In any case, I thinks it’s typical protocol that they will try you on a series of medication protocols to see what works. I have a friend whose been very well controlled for a year with 6MP (I don’t know if that’s the same as Imuran? I was on Imuran at one point but never 6MP.) I am an older person — was diagnosed when I was about 34. I know, because I have many, many wonderful friend who suffer from UC and Crohns that are your age, it is EXTRA hard for you guys! I wish it would NEVER happen to you young’uns: it’s crappy enough for us old folks, lol. I’m a very motherly person (anyone can tell you!) friend me on facebook if you want Donna Corman. Be good to yourself, kiddo. It’s an extraordinarily frustrating illness but unfortunately we can’t just wish it away. Keep your strength up and try to keep your attitude up; if possible, it’s really kind of important to see a gastro who specializes in UC. Ok, that’s enough out of me! Anyhow, Sara, when you read this: HI!! Donna C.

    [Reply]

  47. avatar

    Lorrie Knight says:

    December 10th, 2011 at 6:39 am

    James,
    My name is Lorrie Knight and my son Jake at the age of 3 was diagnosed with ulcerative colitis. He has been on Imuran for the last few years and have been in and out of remission. He is also on a gluten free diet that has helped to keep him in remission for longer periods of time. You need to research the medication options before your start them and realize you do have the right to say no to them. We have had several doctors to want to put Jake on medication that I felt was inappropriate for a child. You need to be your on advocate. Also, don’t ignore your symptoms and be proactive about them. Jake right know (he is 10) has started to hide when he has a flare up and it takes longer to get him back in remission. Sara is a great source for you to go to. Let us know how you are doing.

    [Reply]

  48. avatar

    brianna says:

    December 21st, 2011 at 8:51 pm

    hi, ive had crohns for only a year and a few months i was diagnosed around aug. 2010 and dec. 10th 2010 i had my surgery. it all started with extremely agonizing pain i mean it would hurt so bad i would scream i one day i was in smithfield NC over at dollar tree walking around and i felt a bunch of POPs in my stomach i shrugged it off but suddenly i fell to my knees in horrible pain. i was rushed to the johnston memorial hospital but the doctor was a QUACK!! he said welp you have an abscess but im sending you home. no antibiotics nothing. and i laid in bed for two days popping pain pill after pain pill and i got up to pee and it was a dark brown so my mother rushed me to the hospital and they did a C-T scan and the doctor came in and told me i needed surgery immediately so they rushed me to pitt memorial hospital in greenvile and i had surgery three days later and was left with two stomas an illeostomy and a colostomy i had them from dec. 10th  to aug 26th.  the first time i had to change them it was horrible it hurt so bad when she took it off. the paste burned. until one nurse had to change my bag and she told me to just put the wafer on a heating pad till it was warm the put the bag on it then stick it to me and it WORKED i stuck so much better i didnt have to change it as often. then my second surgery came it was the worst one yet the surgery it self went great but the healing sucked i formed an abscess right under the incision and it started to drain out which was great because i didnt have to get a drain put it THANK GOD! i hate drains! but its dec. now and i still have one tiny scab that wont heal. :) but i havent had a flare since and i thank god every day for showing me how valuable life truly is and how easily it can be taken from you. and im so thankful for the family and doctors i have in my life. :) and i can only hope for the best for you i know how tough everything can be. 

    [Reply]

  49. avatar

    Donna Corman says:

    December 22nd, 2011 at 7:08 am

    glad you are stable now, Brianna — keep it up! That is quite a story! Stay healthy, hon.

    [Reply]

    avatar

    brianna Reply:

    Thank you so much I try my hardest to watch what I eat and I take all my meds I am almost a year without bags and I couldn’t be more thankful. :)

    [Reply]

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  53. avatar

    Claire says:

    February 26th, 2012 at 12:33 pm

    Sarah you sound and look beautiful, we have all got our stories and scars. You made me teary reading your story, you’ve kicked motivation back into my life, you are a hero! Keep strong and no that others out there share the same. Love Claire

    [Reply]

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  55. avatar

    LaDonna says:

    July 13th, 2012 at 7:52 am

    Thank you so much for your story! I came across it researching the illesotomy bag because my dad who has cancer in his rectum has just been told he has to have this surgery or he will die a slow and painful death. Im very worried for him because im scared this surgery will stop him from living his life like he always has. Thank you for giving me an idea of what this will be like for him! I wish you the best!

    [Reply]

  56. avatar

    Kelly says:

    July 25th, 2012 at 4:08 am

    Sarah, I just found your story on the net. I too have an ileostomy due to complications after a simple procedure. I can totally relate relate to they way you feel about your bag as I too was only supposed to have my bag for 3 months….18 month on and I still have it and after numerous attempts of reversal surgery my internal bits just haven’t healed and I am now stuck with the bag for I don’t know how long. I have good days and I have shit days (literally:)0, but I have the most amazing husband (who for the first 3 months changed my bag because I couldn’t get used to the smell of the poop, you are so right, there is nothing like) and my family and friends have been wonderfully supportive. I am still me, I have just had to adjust to this way of life. This is a quote from Nick Vujicic, he was born without limbs: “The hardships we face provide us with opportunities to discover who we are meant to be and what we can share of our gifts to benefit others”
    Wishing you all the very best Sarah.
    Kelly x

    [Reply]

    avatar

    Gwen Reply:

    Dear Kelly, hello and I too found your story and Sarah’s story while searching for info about pouches. I have an ileostomy, have had it since March 21, suppose to be for only three months. I finally have a take-down surgery date of August 30, can’t wait. I now have a large hernia in the stoma and a proplapse in the small bowel. UCK, thing hurts all the time and is two times the size it was at the beginning. I have named him Berry, since it looks like a large berry of some sort hanging out of the abdomen, lolo. It took me about 3 months to adjust to when to take a shower so he would not poop on me :-). Good luck to you and wish you the very best.

    [Reply]

    avatar

    Kelly Reply:

    Hi Gwen and Berry, I’m soo excited for you!!! I hope all goes well for you and I would be interested to hear how things go for you, would you mind keeping in touch?
    I have an examination this Friday so my Drs can take a look and see what’s happening and plan future treatment, fingers crossed for a reversal!!! I will be thinking of you on the 31st and hoping all goes well xx
    Kelly

    [Reply]

  57. avatar

    Kathy Heapy says:

    October 3rd, 2012 at 5:28 am

    Dear Sara, my heartfelt thanks for sharing your very moving story with us. A dear friend of mine recently underwent rectum cancer surgery and educated me on the illeostomy bag. She went in for her reversal surgery yesterday …. I have since had two clients coming to me with the same condition and I happened upon your story by chance when searching for more information on the subject, hoping that this knowledge would grant me an insight to enable me to treat them with the respect and compassion that they deserve. You a very brave and courageous young lady, and I wish you everything of the best for the future.
    Kind regards,
    Kathy

    [Reply]

  58. avatar

    Phil says:

    November 6th, 2013 at 9:25 pm

    Wow. I am so sorry you had to go through all that. But I have to say, it sounds like you weren’t receiving the best possible care and maybe the doctors you were seeing didn’t understand what was going on. I was diagnosed with severe ulcerative colitis in June of 1997 and had my colon removed and J-pouch construction in June 1999 and spent my senior year of high school with the ileostomy bag. The take down surgery was done a couple weeks after graduation, June 2000. I also suffered horrible kidney stones. I was on prednisone for almost two years and gained over 100 lbs. in ten months. It sounds like you and I went through very similar hell. I did, however, have the extra support of a mother who has Crohn’s and lives with a permanent ileostomy, so that helped immensely. But, I just can’t get over your story of your medical treatment. I went through this ten years before you did and yet it sounds like my doctors and my treatment were lightyears ahead. Again, I question the people who were treating you. I am so sorry it was such an overly traumatic experience for you.

    [Reply]

  59. avatar

    David Leonard says:

    March 30th, 2014 at 10:08 am

    Hi sara i have a bag on my side for 34 years now and i now how it is to get use to it. I am still single for 34 years and if i started dating how would the other person take it that i have a bag on my side so i am scared if i could find some one like me it would be nice i am 50 now and i had this when i was18 and on my birthday in the hospital so that is all i have to say. Davey

    [Reply]

  60. avatar

    dianne says:

    March 31st, 2014 at 4:26 pm

    Dave,  Don’t ever worry about what others will think about you.  Embrace who you are and be confident….Do you really think that if a woman loves a man she is going to turn away because of a col. bag?  If she does that is not the type of partner you want.  By the tone of your letter you sound apologetic.  You need to straighten that out right away.  Again, be strong and confident….The situation is what it is.  Women will see you as you see yourself.   
    Start loving (and liking) yourself…..everything else will fall into place.  

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