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! (3)
• February 25, 2010 -- Commenter with Questions (13)
• February 13, 2010 -- Take a walk in my shoes (93)
• December 21, 2009 -- Update (6)

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. (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)

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 (93)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)
• November 23, 2008 -- HI EVERYONE! (3)

Over the next 5 years I tried multiple medications, Prednisone, Immuran, Asacol, Lomitil, Rowasa enemas, nothing gave me relief. Also over those 5 years I had a child, though advised not to, and continued working, I run a group home caring for developmentally disabled adults. But pooping my pants in public and paranoia that surrounded being in public and begun to take their toll, I was not the happy person I once was, the UC was controlling my life, as much as I tried not to let it, I had become it’s prisoner.

In June of 2004 I had another Colonoscopy, I had been doing some research and had learned about j-pouches. In my groggy state during the colonoscopy I remember looking on the monitor and seeing my colon, it was a bloody, pus filled ulcerated mess, my insides were rotting inside of me, I told my GI right then and there that it needed to come out. I found a CR surgeon that I liked and scheduled a 3 step, possible 2 step j-pouch surgery for September 24, 2004. I woke up with a total proctocolectomy, rectum and colon removed, no j-pouch formed, my rectal stump (anus) intact, and an end ileostomy…A BAG!

I never went back and had the j-pouch done, as I came to the realization as I lay in Hospital recovering, I was laying in the Hospital recovering, I was not jumping up to use the bathroom. My recovery was not easy, I had some complications, but once I got back on track, I felt my old self, my true self returning. I was able to be the Mother my son deserved and needed, and the Woman my Husband had married in the first place. Yeah, I had a bag hanging from my belly…so what? At least I could sit through a movie, wait in a line, and hold my sleeping child in my arms, things that were not possible for me before.

One of the things that also has helped me on my journey has been my involvement with the UOAA, it started when I heard about the 2005 National Conference to be held in Anaheim, CA. Since Anaheim is only about 90 minutes from our front door, I decided that my Husband and I should attend, it will be good for us I thought, and we would probably never go again.  Well that Conference was a life changer for me, I already was confident and secure with my ostomy, but did feel alone.  Walking into a room with hundreds of other ostomates, and specifically about 75 other Young Adults with ostomies was one of the most empowering moments of my life, and really changed the course of my life, it gave me a new focus.

Since then I have become the Vice President of the Ostomy Association of San Diego, and continue to serve in that position, traveled to Irvine, CA, Chicago, IL and Cleveland, OH twice for UOAA (United Ostomy Associations of America; www.uoaa.org) and YODAA (Young Ostomate and diversion Alliance of America; www.yodaa.org) Conferences, and plan on attending the UOAA’s 2009 National Conference in New Orleans, LA. This past summer I was a volunteer Counselor for Youth Rally (www.rally4youth.org) a Summer camp for kids 11-17 with ostomies, diversions, IBD and bowel and bladder incontinence. I always look forward to spending time with my “second family” the people that I have met along my journey. We all share an instant bond and connection, we have walked similar roads and understand what the other has been though, you won’t find pity, but you will receive support, love and understanding.

Looking back, of course I wish I never got sick and would never want to have an ostomy, but this is the path my life has taken. I choose to find positives and lessons in everything, and make it my mission to reach out to other people helping them find acceptance and happiness with their ostomies just as I have.

I feel that support is very important, when it comes to ostomies you have to seek it out, you would never know another person on the street has an ostomy or diversion, so using the internet and support groups is a wonderful resource and I encourage everyone to learn more, whether at a local support group meeting or online on the wonderful discussions boards available, especially at www.uoaa.org.

As for me, I continue to run the group home, my son, Hendrix just started Kindergarten, and my Husband and I are about to celebrate our 10 year wedding anniversary. I continue to have great adventures and good times, we have traveled, my son and I take Kung-fu, I swim, snorkel, ride my bike and live a happy and active life. My ostomy does not hold me back; it has given me back the life I always wanted.

Hiking with my Family on the Road to Hana

Me, swimming in Maui, HI

These posts might also help out:

• November 23, 2008 -- HI EVERYONE! (3)
• May 11, 2008 -- UC to J-Pouch Surgery (24)
• January 25, 2009 -- Jessalynn (10)
• July 20, 2011 -- 2 Years Post TakeDown (6)

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is yesac87@hotmail.com

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

Casey’s Blog and Photos Here

These posts might also help out:

• December 28, 2008 -- Sarah’s Permanent Ileostomy (8)
• May 11, 2008 -- UC to J-Pouch Surgery (24)
• February 13, 2010 -- Take a walk in my shoes (93)
• February 10, 2010 -- Making Ostomys HOT! (3)

Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.

These posts might also help out:

• January 25, 2009 -- Jessalynn (10)
• December 28, 2008 -- Sarah’s Permanent Ileostomy (8)
• November 23, 2008 -- HI EVERYONE! (3)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)