UC to J-Pouch Story

Photos: Carter S.

The bag was easy to cover when going out

Dressed with ostomy bag completely concealed

 

UPDATE 8-11-08

 

Hey everybody, I’m Carter. I’m a 22 year old college student at East Carolina University. Mark and Megan have been kind enough to let me use their blogging page to post my experience with my recent J-Pouch surgery…surgeries.

I’ll start by giving you a little bit of the background. I was diagnosed eight years ago when I was 14. I had pancolitis, meaning the entire colon is diseased. Over the next 6 years I would be on a number of different prescription drugs, however, nothing that would put the UC into remission. I was on steroids from day one, and high doses of it. I became steroid dependent. Once the disease seemed to be somewhat under control, I would try to taper off the ‘roids’ but always had the same effect – a flair-up.

Two years ago I moved and started seeing a new doctor. The first thing she wanted to do was to get me off the steroids. I started taking intravenous drugs through the hospital which seemed to be the fix for me. I was able to come completely off the steroids but it wasn’t long before I started having symptoms again. I tried a few other drugs and ended up in the hospital one more time last year. Finally my doctor had me meet with a surgeon at the end of April. I need to say that this year wasn’t the first time the idea of surgery had come up. I think early on my doctors knew that surgery would probably be in my future, but we hadn’t exhausted all the medical possibilities. The next day after meeting with the surgeon I made the decision to go through with it and made an appointment.

I was on the schedule for May 22. The next three weeks went by relatively quickly. I tried to put the surgery in the back of my mind and focus on exams and work. That is very important for anyone who is facing surgery; try not to make things worse by worrying too much. Don’t get me wrong, I was nervous.

Part 1: The Colectomy & J-Pouch  I went in the day before and had a colonoscopy. If you have UC you probably already know what these are like. The next day I had the operation which went really well. It lasted about 6.5 hours but luckily for me it seemed like no time at all. I woke up pretty sore but I wasn’t in excruciating pain. I did have a button I could push for a dose of morphine as often as every 10 minutes if I needed it. I also had the ileostomy which definitely took some getting used to. I didn’t, however, have colitis anymore. I was limited to clear liquids for the next two days, until my bowels woke up, then was put back on a regular diet but was told to “take it easy.” I did pretty well with that and was recovering nicely, so 5 days after the operation I was sent home.

My stoma and scar aprox. 1 week after Part 1

My stoma and scar aprox. 1 week after Part 1

 

The six weeks I had my ileostomy weren’t bad at all. Having the bag was a little weird at first, but I

Fresh bag

Fresh bag

 adjusted pretty quickly. I was able to do pretty much everything I could before. I didn’t go back to work because lifting heavy objects is pretty much what I do all day (I work at Lowe’s) and I only had 6 weeks until I was going to have my takedown operation. Going out wasn’t an issues; I would just tuck the ostomy bag in my pants and my shirt would cover the top. I wasn’t very good about limiting what I ate although I never really had any problems with it. I was warned of food blockages but never had to experience one. The great thing about the bag was that there was no sense of urgency, whatsoever.

Part 2: The Takedown Operation  Six weeks after my first operation (July 3) I was back in for the takedown. I went in the day before for a ‘pouchagram’ just to make sure there weren’t any leaks in the j-pouch. Everything checked out okay so I was cleared for surgery. This operation didn’t last as long, only about 2 or 3 hours. The nice part about this one was there was no preparation for it – I just couldn’t eat after mid-night the night before.

Again, when I woke up from this operation I was sore but nothing too bad. I was given pain medications. The next evening my bowls started waking up. I was passing a little gas and eventually some stool. Two days after the operation I was given regular foods. It was all I could do not to eat everything they brought me, but I really didn’t want to overdo it right off the bat. I did really well with solid food and was sent home 3 full days after the surgery.

4 days after my \'takedown\'

4 days after my takedown

I realize a lot of this sounds very similar to what Mark went through, but I felt like it would be good to post my story anyhow. I believe for someone who is facing a similar situation it is really nice being able to hear several testimonies from many different people. I was in contact with a couple of people early on, however I didn’t find Mark & Megan’s blog until after my first operation. I plan on using their advice and that of others, especially my doctor, and making a speedy recovery. Right now, I feel really good. I don’t have ulcerative colitis anymore, which is nice to be able to say.

Mark and Megan have given me access to this page on their blog so I will periodically post about my progress…but that’s all for now.

 

 

Today, July 9, has been only 6 days since my takedown. I was told I would be going to the restroom at least around 8 times a day at first. I would say I’ve been going at least 8 times/day but I expect that number will go down once the J-Pouch stretches and I’m a little more used to it, even more so once I start experimenting with Imodium and fiber supplements. I have been getting the infamous ‘butt-burn’ but I’ve been using Balmex Ointment and it has seemed to help. I described it to my brother as, “Imagine the spiciest hot wings you’ve ever eaten, and how your butt felt the next day. Now imagine just putting one of those hot wings directly up your ass.” I didn’t mention it before but being able to joke around with those who are close to you definitely helps cope with some of the worry and aggravation of UC. Anyhow, my stools have been firming up slightly so I imagine the frequency will go down over time. I will say, I’m not so sure I’ll be able to sacrifice some of the foods I love for a little less time on the pot…but I’ll get back to you on that one.

Two weeks after takedown 7-16-08

Alright, so it’s been 2 weeks since my second surgery and theres not much new to tell. The only thing is my ostomy wound; it’s still oozing some pus. I was warned to look out for dark or bloody pus or anything thing that stinks, but this has been the average yellow-white pus. My wound, otherwise looks pretty good; it doesn’t feel hot, and it’s not sore. I am going to call the doctor tomorrow just to make sure.

I’m still using “The Facility” about 8-10 times a day, but I’m starting to get a used to the new plumbing. I try to ‘hold it’ more and more so I can stretch the j-pouch. I’ve built up some confidence and gone out and done things with friends but nothing stenuous. Keep in mind, I said confidence…not cockiness; I’m not going to push my luck too much.

I’d like to throw this piece of info out there for anyone who might be a victim of the familiar ‘dungeon’ in the back of the gas stations across the country…hell, across the world. You know what I’m talking about, the 5’x5′ cell, the dimly lit restroom with a multi-colored toilet seat and a sink you know will only make your hands dirtier if you attempt to wash ’em. When I travel, I’ve found that hotel lobby bathrooms are typically pretty clean. They are used so much less then gas station restrooms. If I can make it, I will always look for a hotel. As an added bonus there is usually a brochure holder by the front door and occasionally free newspapers at the front desk…if you prefer reading material. Just remember, walk in and look like you belong there. If your afraid they’ll say something to you about not being a guest then pretend your talking on the phone and say, “I’m waiting in the lobby, come on down,” or something to that effect.

I realize that in some situations theres no time to be picky, but desperate times call for desperate measures, and believe me…I know. But thats another story to be told some other time. Plus, I’m straying away from this pages original intent.

*Quick note…I called the doctor a couple days ago to ask about my ostomy wound. The nurse on duty said it was completely normal to still be seeing a little pus from the wound. She explained that an ostomy wound isn’t like a normal surgical wound…after all, this is where my stoma was for 6 weeks. I can tell that it is slowly healing up.

 

8-11-08

Ok, so it’s been just over 5 weeks since my takedown operation. I am doing great. I have no regrets and not one time have I thought this was the wrong decision.  I returned to work last Friday – August 1st, but with a 20lbs weight restriction. I have been lifting more than that; I lift with my legs and don’t really strain my stomach muscles so I feel like it’s ok. If you’re reading this mom, sorry…I’m stubborn. I know I mentioned my issue with giving up certain foods in an earlier post, but I’m starting to figure out what foods WILL NOT work for me. One day last week, for lunch, I had some Buffalo Shakers from Arby’s; I paid for it later that evening. A few nights ago I ate a large pizza and was up several times during the night – I think it might have been the pizza sauce. I’ve been able to drink alcohol. All I’ve really had is light beer and it’s not really bothered me. I don’t think I’ll totally give up my favorite foods; but I will definitely have to cut back. Maybe eat them when I don’t have any plans later on.

I have been taking fiber and Imodium and it seems to be helping. I’ve been going to the bathroom about 6-8 times a day; sometimes more depending on what I eat.

I’ve been going out with my friends, and like I said, I returned to work. My confidence is back and I don’t spend every moment I’m away from my apartment worrying about having to run to the bathroom. I do usually have to go at least once at work, but believe me, I ‘Gift-Wrap’ that toilet seat. When I do feel the urge, it’s not sudden; I am able to hold it – sometimes an hour or more.

My overall health is great. I’m not in shape because I’ve not started to exercise, but I’ll start back in a few weeks. I have put on a lot of weight since my surgery – I was down to about 125lbs which was really low for me.

*About my ostomy wound. There was a small spot that wasn’t healing up. When I went in for a follow-up my doctor told me it was a little flesh sticking out; it was no big deal. He put something on it, which I guess, burnt it off – it didn’t hurt. About a week later it was completely healed up. I’ll post some pictures later on. Thanks for reading and thanks for your comments and questions.

The most important thing to remember is to always keep a positive attitude. I realize it can be hard at times, but if you can have a good outlook on things it will make your experience with UC/J-Pouch surgery that much easier.

 

 © 2008 All Rights Reserved

 

 

 

 

37 Responses to “Photos: Carter S.”

  1. mary said

    Hi Carter,

    Thanks for sharing your photos and your story, you seem so positive even though you’ve obviously been through so much. From your photos I can’t tell, but did you have your surgery lapro like Mark, or did you have an open surgery? It looks like you have a vertical scar below your belly button?

    Mary

  2. carter99 said

    Hey Mary,

    I had open surgery. My scar goes from my belly button to my pubic bone. Up until recently I hadn’t heard about lapro surgery, which I’m assuming means minimally invasive?

    Maintaining a positive attitude is one of the best things anybody can do for themselves. Don’t get me wrong, I had my moments, wondering why I’m 16, 18, 21, 22 or whatever and can’t control my bowels. A large part of a UC patients battle is overcoming the mental trials they’ll go through. I was pretty determined not to let colitis ruin my life; but that meant there would be NO discrimination against public restrooms. I do recall more than one occasion when I would feel a slight urge to go, but would push my luck; those occasions could turn a good day horribly bad in a hurry. Accidents happen, but if you can put them behind you, pick your head up and go on with your life, lesson learned (if you feel the urge don’t ignore it), then your doing pretty good.

    Carter

  3. Mary Ellen Santoro said

    Carter,

    I have ulcerative colitis for 3 years now. I am glad that you are doing so well. Unless you have this disease, people don’t realize how limiting it is and how stressfull it can be.

    It is so good to hear positive outcomes with surgery. It is really very scary thinking about going through this. Thanks for sharing your experience.

  4. Tracy said

    Thanks for sharing your story, Carter. My boyfriend has UC, and reading about others who have or had it helps me understand more about it and what his options are.

  5. carter99 said

    Mary Ellen & Tracy,

    I’m glad you can get something out of this. I had trouble finding resources about the disease early on which was a little discouraging, so I’m glad I can contribute something. Look around and see whats out there and hear as many stories as you can.
    There are a lot of options out there to try. There are lots of medications and treatments available. My doctors never said much about dieting; but I’ve heard some people who have had some success with it. Talk with you doctors and learn as much as you can about whats available.

    Carter

  6. Just wanted to say congrads on the operation and great to see such a positive attitude – IS A BIG HELP IN THE HEALING! I am glad M&M let you use the space here to post for others to read… they are great ppl and ppl I have never met though consider family ( we all are after what we went through)
    I had a jpouch for 6 months (about) before some major issues cause me to go to a end illeo. That being said… I am a State Trooper and wear my 20 – 25 pounds of gear every day, play full check ice hockey, work out, eat what I want and swim almost every day. I think its great for others to see that there ARE a lot of options and the jpouch – which I think has a rate of 95%+ of working – isnt the last step. My life with the bag is better then I could have ever prayed for (I get between 5 – 7 days between changes and havent had a leak in over 1 year.. knock on wood lol) and like to show others that if it goes to the BAG you still can live a normal life.
    Good luck on your quest with the pouch and will check your blog now and then to make sure all is well!
    Good Luck
    Jason

  7. carter99 said

    Jason,

    It’s great to hear a story like yours. Someone who’s so active and who has such a demanding job, yet refuses to let an ileostomy slow them down really is an inspiration. It’s unfortunate that the j-pouch didn’t work out for you but it doesn’t sound like it’s had a negative effect on your life. I enjoy working out also, and I think I mentioned my not-so-restricted diet; I hope to be back to that stuff soon.

    Carter

  8. E. said

    Hey Carter,
    Your scar looks really good. You had an open surgery? Your scar below your belly button in so small, I thought open was such a much bigger incision. It is good to know that open scars can be smallish. Hope you keep healing well.
    Erica

  9. Another UC Wife said

    Hey Carter…..wonderful news. Happy to hear you are doing so well. Keep up that positive attitude!

  10. carter99 said

    E.,

    I’m pretty sure I had open surgery. I know I didn’t have lapro, so I just assumed it was open. I’ll ask my docotor to make sure when I go back for a follow-up on the 23rd. I’m not familiar with other options, if there are any.

    Carter

  11. DAWN said

    hi
    i have had colitis for five years, had bad flare up since sep, i feel so crap. consultant havin one last ditch attempt with humira which was given to me yesterday, i think we will be plannin surgery next week, i am frightened to death but readin stories like yours really helps , i and loads of others i bet really appreciate it thanx
    dawn x

  12. Erin said

    Oh Dawn, I know that CRAP feeling. I’d had a flareup for several months as well before I had my colon taken out. I never did try humira, but I’d had colitis for 8 year with such bad flareups they were worried about cancer for me. I didn’t every want to be on steroids again. I had my reversal almost a month ago (June 18th) and still feel kinda crappy, but I’ve had some complications (NOT related to my intestines though! and I DON’T have colitis anymore!). I’m getting a little more strength everyday. You can get through this, no matter how you choose to do it. Make the right decision for you.

    Erin

  13. mark said

    Hi Dawn,

    I understand your fear, but do try to make peace with the surgery before you have it. If this means taking some more time to decide on surgery (as long as your health isn’t emergency state) then you may need that. Do talk with your family, etc..And I would totally encourage you to join http://www.jpouch.org and share your concerns there, you’ll find great voices on that site. And Erin is right, make the right decision for you. Like Erin says she still isn’t feeling 100%, but she doesn’t have colitis, whereas for me, I haven’t really had any complications and feel excellent. And Carter you can see is doing well after takedown, but what makes him so admirable is how positive he is. Success of this surgery is 1 part surgery, 1 part patient/family positive attitudes.

    Keep us posted on your decision and recovery!
    Mark

  14. carter99 said

    Dawn,

    I’m with Erin and Mark both. Surgery is a big decision, and a scary one at that; but you do need to figure out what is right for you. I hope the Humira will work out for you, but if you do decide surgery try to keep a positive attitude like Mark said. If you can have a good attitude about things it helps those around you have a good attitude, and vice-versa.

    One of my favorite baseball players, Yogi Berra(catcher), once said, “90% of the game is half mental.” It’s funny, but he was saying that your ‘mental game’ is at least as important as the physical side. I think it’s just as true when facing surgery.

    I’ll be praying for ya.

    Carter

  15. Megan said

    Dawn,

    If you haven’t already you should check out this short video on making the decision from UC to Jpouch – it is really well done:

    https://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

    Also, there is this longer more indepth webcast with a surgeon regarding the decision for surgery, it is also excellent:

    https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    Take care,
    Megan

  16. Julie Hatten said

    Hello, I found your experience by chance on the web. My 14 year old son had his colon removed this morning (08/08/08). He has an ileostomy and in 6 months to a year he will undergo the takedown as you say. Any advice?

    Concerned mom of UC Child.

    P.S. He has only been under a doctor for about one year now, he was a very progressive case.

  17. mark said

    Hi Julie,

    Sorry to hear about your son having so much health concern so young. The good news is that the surgery should help him live a normal life. I think the biggest thing you all can do for him, is normalize his situation as much as possible. He needs to know 100% that there are other kids like him, they get by, and they lead normal lives. I think that showing him this blog with all the young people (Mark, Carter, Ashley, Stephanie) – all are youngish and in his same situation. He can follow Stephanie’s story, she is headed into surgery Aug 22 and will be documenting it.

    There are great resources for him to access, like https://ucstory.wordpress.com/2008/06/06/another-ucer-tells-their-story/

    It is just really important to CELEBRATE his health now, I recommend a party when he comes, bring friends and family – show his stoma, normalize it….And remember he isn’t sick now, he is on the road to being healthy.

    Megan

  18. carter99 said

    Julie,

    I can’t imagine how overwhelming it is to be going through this surgery at only 14. My best advice is to keep a strong mind. Obviously he will be ‘down’ for a while and wont feel like doing much, but once he gets back his physical strength he should try to keep a positive attitude. The ileostomy is discouraging at first, once I got used to it I got out as much as I could. I think once he recovers from this surgery he will feel so much better, within a week or two. Do what you can to help him keep his spirits up. Keep us all updated on his progress.

    Carter

  19. mark said

    Hey Carter,

    How you doing these days? How is your wound healing up?

    Mark

  20. carter99 said

    I’ve been doing really good. I actually just started writing an update yesterday morning but havent finished it yet. I’ve been working most of the weekend, but I hope to have it posted tomorrow night.

    Carter

  21. Richard said

    Hey Carter,

    Contradulations on your doing so well. I am a 65 year old who has had UC for about 2 years. I am one of those people that has a colon that is totally inflammed, as well as the rectum. luckily there was no cancer or anything. It does mean so much to read stories like yours and Mark and the others on this blog. There is so much fear I have about surgery. I have been on (what seems like) every medication, prednisone, asacol, lialda, aziothioprene, and the latest, corti-foam and canasa suppositories, but still I don’t go into remission.

    I sincerely hope that you continue with your success and well being with your j-pouch, and again, it is so encouraging to read your story.

    Take care and good luck!!

    Richard

  22. Richard said

    Carter, …I almost forgot, I’m on Remicade too. After 4 infusions, I can’t really tell much difference. I guess everyone responds to various meds in different ways. I’ve got that big decision coming up very soon. Anyway, take care. I’ll be posting more on here as time permits.

    Richard

  23. carter99 said

    Richard,

    I used Remicade for a while. I did see some results with it but as you can probably guess, those results didn’t last for me. I have spoken to people who have had only a couple of Remicade treatments and done extremely well. It’s different for everyone; I guess it’s all in how your body responds to that particular medication.
    Do your research and whatever you choose to do, be confident in your decision. Good luck and keep us posted.

    Carter

  24. Casey said

    Hey Carter, I just wanted to say thanks for posting all these things. Sounds like we’ve been through some of the same stuff. I’ve always felt alone in my situation. I’m a 21 yr old girl and I’ve always been super confident…until i got my illeostomy 10 months ago. Now I’m having it removed in 7 days. I can’t wait to be normal again!
    Keep posting!- Casey

  25. carter99 said

    Casey,

    It’s good to hear you could get something from this page. It isn’t easy being confident with an ileostomy, but I imagine having it for 10 months forced you to adjust? I know your excited to have the ‘pullthrough’ operation. Keep us updated on how things go. I’ll post some updates soon, maybe a week or two; I’ve been pretty busy this semester. Goodluck.

    Carter

  26. Tammy said

    Hi Carter,
    I just wanted to take a brief moment to say Happy Thanksgiving, and to think you so very much for your candor in your postings. I’ve just met a wonderful man who has undergone this procedure, and I was searching for ways to let him know I don’t care. When I say that, it doesn’t mean that I’m indifferent to this situation created in his life, it’s just that it doesn’t make him any less than to me. I applaud you for speaking out and being willing to share your experiences. Thank you oh so very much.

    Tammy

  27. carter99 said

    Hey Tammy,

    I’m glad you liked the page. This is a really great blog site that Mark & Megan have set up. And it has grown extremely well. It was actually my girlfriend at the time who found this site and told me about it. She did her research on UC and the operation; it became clear to me that the fact that I had colitis didn’t bother her at all – that was very comforting. Educate yourself as much as possible, which you’ve obviously been searching the web – I’m sure he can appreciate that. I know I did when friends and family were that enthusiastic about my health. Thanks for your post and check back soon for an update – it’s been almost 5 months since my takedown operation so I guess it’s about time for a progress report.

  28. mark said

    Hi Carter,

    It is great to hear from you and we are so glad to hear you are doing so well! Hopefully school and working isn’t keeping you too busy to have some fun, now that you are healthy and all.

    Take care,
    Mark & megan

  29. marsha said

    Thanks, Carter, so much for all the info..I’m going for the takedown in 5 days. Anxious to get back to work b/c I’m going broke. Also a little discouraged about drinking less-I’m very Irish & love my beer. Oh well…thanks again!

  30. Blair said

    Good stuff Carter, Awesome to see this on the net. Hope all is well with you.

  31. Tara said

    Hey Carter!!

    My name is Tara and I am 8 weeks post-op from having an ileostomy. I was wondering if I could have your email address so I could ask you some questions about your experience?

  32. Jovan said

    Hello Carter,
    I hope you still have access to this blog. I’m 24 years old and been dealing with the leaking problem. I cant do any wlaking without leaking 😦
    I have had 3 surgeries to fix my rectum prolapse and even thouh I dont have the prolapse anymore, my life still sucks due to noy being able to socialice.
    I been seeing the same doctor for 11 years and they have me on biofeedback now but they said that they are thinking about doing a colostomy on me. To be honest with you, Im very scared. Im single and I feel that it will bring down my chances of ever getting married. Who would wanna get married with a guy who has a bag.
    I see that you were able to cope with that. please let me know how you did it? Were u able to take longer walks after you have colostomy?
    Also as tara said if I can have your email address to get in touch with you and ask u some questions
    Yours truly
    Jovan

  33. sheri roubique said

    Carter, I am in nursing school. I am studying right now on this subject and found your story. You are a very brave soul and bless you for sharing your story. You never know who will come across this page and be touched. I wish you all the best in your life. I wish you a beautiful wife and great kids. I wish you years of happiness and grandkids so that your story can be told for generations to come!!

  34. Nicko said

    certainly seem painful?

  35. jeffrey said

    Your a brave man. I am glad you went through with it! It looks painful but probably not as bad! I am glad your doing well!

  36. I was recommended this blog by my cousin. I am not sure whether this post is written by him as nobody else know
    such detailed about my trouble. You’re incredible! Thanks!

  37. Thanks a lot for sharing this with all of us you really recognize what you’re
    speaking about! Bookmarked. Kindly also consult with my site
    =). We can have a hyperlink exchange contract among us

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: