I feel relieved, bittersweet, I think. I will miss the money, and some of the work, but it was a horrible environment for me to be in, quite honestly. I loved the people I worked with, but the energy was all stress. When I am completely honest, I just couldn’t do the job because I was too tired a lot of the time when I was there to function mentally. I forget so quickly how much I’ve been through and what my body has to go through to just function every day when I feel well-I work as hard as I can and I see my “old” self come though. However, those days, honestly, kick my ass and I end up having to sleep for 4 days nearly without interruption to recover from it. It’s depressing and frustrating to me that I cannot do certain things that others can, and that’s why I’m really upset. I’m also worried about what my fiance (soon to be husband) and I will do financially, and what I will do about health insurance.
On the other hand, this opens a lot of doors for me. I have more time to help out with CCFA stuff, and to finally make it a priority to find a career, not just a job for a paycheck, that I can do and that I will enjoy.
Life with Crohn’s and a J-pouch is not easy, but I’m glad to have it.

These posts might also help out:

• November 10, 2009 -- Just Dance! (8)
• December 31, 2009 -- The New Year’s Curse (10)
• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• July 15, 2009 -- Don’t Ask, Don’t Tell (12)

Please take about 10 minutes and take this survey designed by professors at the University of Georgia.  In my non-jpouch blogging life, I am an Assistant Professor at University of Georgia and I’m conducting research on the implications of social networking support sites (jpouch.org and jpouch.net) focused on the experiences of those preparing for or who have had jpouch related surgery (including the stages of temp ileo, or permanent ileo’s).  I am working with a team of Ph.D.’s from Social Work and Health Communications on this study.

Click to access survey link here:   Social Support Survey for Jpouchers and Ostomates

My motivation behind this research survey: From my personal experience with Mark and in the early days of using jpouch.org, and then our development of the photo blog here at jpouch.net, I began to realize these support sites are CRUCIAL to the coping and support through this journey.  See, back when Mark was preparing for surgery his ostomy nurse told him not to use online social supports because they were negative and people only went to them to complain.  We obviously disagreed with her and since that day I have wanted to use my Ph.D. and research skills to show the medical field the importance of social network sites for jpouch related needs.   I really want to help the medical field understand how important these sites are to healthy healing so that they will support them optimally.

Thank you so much for your time!

Sincerely,

Megan Lee, Ph.D. (also know as Mark & Megan)

Kimberly Clay, Ph.D.

Jeong Yeob Han, Ph.D.

Margerite Fenwood, M.S. Student

These posts might also help out:

• February 10, 2010 -- Making Ostomys HOT! (2)
• February 25, 2010 -- Commenter with Questions (7)
• February 13, 2010 -- Take a walk in my shoes (41)
• December 21, 2009 -- Update (6)

We have a long comment from Cynthia C. and she has a handful of really great questions for the jpouch community. Would you take a few minutes to read her post and see her questions at the end.

Thanks so much!

Megan & Mark

# Cynthia C. Cynthia C. says: February 23rd, 2010 at 11:52 am

Hello Everyone, My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time. First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done. I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer! It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP. What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill. Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me. Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay. By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!! My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illeostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life. The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird. Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time. Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back. So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not! I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

2)Advice on clothes!

3)What type of bag works best for you?

4)When can I expect to feel normal, with no more pain from surgery?

5)Did any of you have back pain after surgery? My back is killing me!

6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off. Okay, I’ll leave it at that for now.

Sorry this is so long! Thanks! Best, Cindy

These posts might also help out:

• November 10, 2009 -- 6 Months Later: Jaypouchirifical (21)
• November 10, 2009 -- Just Dance! (8)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)
• January 26, 2009 -- Colonoscopy Results & Questions I Won’t Ask The Surgeon (13)

Check our her blog here.

These posts might also help out:

• February 8, 2010 -- A little insight on my insides. (12)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)
• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (5)
• February 25, 2010 -- Commenter with Questions (7)

This is not me in this picture. But it was so ridiculous I couldn't pass it up.

I’m so over this colon. Its like a pair of jeans that I’ve had forever that I refuse to get rid of. They were great and useful, but now they have a ton of holes in them. But for some reason, I’m hesitant to throw them out. Granted throwing out my favorite denim is a tad different than removing my colon, but you know, same principal. With all the problems and discomfort that I get from this dang thing, you’d think that I’d be more than jumping at the bit to get rid of it. But I’m not. I’m not at all. I’m more than pumped about the possibility of getting rid of it and feeling healthy and maybe getting part of my life back, but the road to get there just seems so daunting. It feels endless. Not only does it feel endless but the road has a damn colostomy bag involved with it. The road is gross. The road is filled with potential problems and questions and uncertainty.

Can you tell I like metaphors?

I have been pondering this surgery for a few weeks now and in that time I have talked to a few nurses and asked a few people at various stages in their surgeries a barrage of questions. I’m pretty sure my last Q an A session ended with “Did you wake up with a butt tube?”  So I’m not afraid to ask questions, but am I a little afraid of some of the answers? Affirmative.

Every time my stomach grumbles, I think about chopping old the ‘ol colon. Every time I sit on the toilet. Every time I second guess eating something. Every time I worry about the location of a bathroom. Every time I am humiliated in one way or another by this disease….I know I need this surgery.

Much like many people out there who are in my diseased bowel shoes, the surgery sounds like a god send. It sounds like an answer to all of our problems, aside from one thing. The one thing that makes me and I’m sure others second guess the WHOLE thing. The one thing that makes me consider living like this for the rest of my life because I can’t even fathom it. You know what I’m talking about. I swear I could just not even say it and we’d all be on the same damn page. But for those of you who are reading this with your head cocked to the side in confusion….its the colostomy bag. Yea, that thing. That super gross thing that makes us all feel disgusting and subhuman. It terrifies me. Its ugly, its stuck to you, and its def a damper for intimacy. I mean seriously, I know people get around it, but how? How do you even think about sex with that thing attached to you.

Yea I said it.

I think I’d probably swear off sex for the entirety of stage one of my surgeries. I cannot imagine living like that permanently.

Yea, I said that too.

I’m not one for sugar coating. I still don’t know what I’ll do just yet. You know, through all of this, since the very beginning of diagnosis I have told myself it can’t get any worse. And without fail, every single time, it has gotten worse. I have had the most ridiculous UC journey, that if it wasn’t me, I might point and laugh. (Eh maybe not, but I would probably talk about me behind my back). It almost seems fitting that I go out with a bang. That this redonkulous ride called UC would end with the removal of a large organ and the attachment of a colostomy bag. Everyday, slowly but surely, I’m getting over this…but I’m not gonna like it.

P.S.  I’ve found the overwhelming urge to write about this crap probably more than usual. So I’m gonna do Jpouch double time and update every so often here and more frequently over here:  http://BloodPoopTears.wordpress.com/

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (7)
• December 20, 2009 -- New website for gay people who are affected! (1)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)
• June 6, 2009 -- Let’s just call it … IBD (8)

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

These posts might also help out:

• February 8, 2010 -- A little insight on my insides. (12)
• February 10, 2010 -- Making Ostomys HOT! (2)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (21)
• January 25, 2009 -- Jessalynn (10)

Continuing with the same theme, I’ve been thinking about what I’m going to do to make my 9 months of living with the ostomy easier. I’ve heard a lot about the Phoenix Belt as well as the belts/wraps from OstomySecrets, Stealth Belt, and Ostomy Armor.

Has anyone tried any of these products? Any thoughts/reviews?

Side note: Dennis over at the  ucvlog.com has teamed up with his friend Nadia to collect ostomy supplies to donate to Haiti. If you have unused/new ostomy supplies or any other medical supplies check out this site to learn more about how to donate them to those who need help in Haiti. If you’ve got any questions, feel free to contact Nadia@UCVlog.com.

These posts might also help out:

• March 3, 2010 -- University Research on Jpouch Social Support Sites (7)
• February 13, 2010 -- Take a walk in my shoes (41)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)
• November 23, 2008 -- HI EVERYONE! (1)

After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ‘09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI them told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say  I was a bit conflicted.

I met with Dr. Remzi last Monday in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.

So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.

oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday

p.p.s. I make typos a lot. Deal with it.

These posts might also help out:

• February 13, 2010 -- Take a walk in my shoes (41)
• February 19, 2010 -- Blood, Poop, and Tears (2)
• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (5)
• February 25, 2010 -- Commenter with Questions (7)

These posts might also help out:

• February 15, 2010 -- I’m so over this colon. (12)
• February 10, 2010 -- Making Ostomys HOT! (2)
• June 6, 2009 -- Let’s just call it … IBD (8)
• April 20, 2009 -- Welcome Christine and Ricardo to jpouch.net (2)

I have done volunteer work for the Crohn’s and Colitis Foundation of America for the past six years. My mom told me about CCFA when I was first diagnosed. We joined and I was an inactive member for years (ie: I got the newsletters, paid my dues, but I never got involved.) Part of the reason for that lack of involvement was that I was  so sick, I could barely function, let alone have any extra energy to devote to a charity…even to one that might ultimately help my quality of life.

So here I am today, on the committee to plan the CCFA walk for my Northwest chapter. I’m super-swamped at work, have a full social life, and aside from a minor flare a few weeks ago, I’m doing pretty well health wise. Things on that front are rarely 100% for me, but I am happy and I am thrilled to be able to do something to help others who are suffering now as much as I once was.

For those of you who are able, I urge you to get out and volunteer. If not for CCFA, for another cause close to your heart (or guts).

These posts might also help out:

• June 6, 2009 -- Let’s just call it … IBD (8)
• July 11, 2008 -- CCFA Billboard (0)
• March 15, 2010 -- “You’re Fired.” (9)
• February 19, 2010 -- Blood, Poop, and Tears (2)