Community Forum

Hello! I was recently advised by my doctor about having a proctocolectomey with an ileanal pouch, I guess it's also called j-pouch.  I have been doing research on the internet and am concerned about wearing an ostomy pouch for 2-3 months between the surgeries.  I know it has to be done, but I was wondering if anyone would mind telling me about their experience.  It is different to read the internet articles and then to have someone the REAL side of a surgery. I would like to know the inconvienences of the ostomy pouch, the pain and discomfort, things like that.  Does it affect your body image?  Is there a special diet afterwards?  What kind of lifestye changes need to be made?  I would appreciate any information anyone would like to share.  If you don't want to share it on the message boards then please feel free to email me.  VBallxChic@aol.com

Thanks,

Amy

 Reply posted for wesson48.

My husband is 32 years old and had his colon removed and has a permanent ileostomy that he has had for six years.  Having this surgery gave him his life back.  No more accidents, running to the bathroom, clothing changes during long car trips.  He as been able to gain weight and muscle and become a strong healthy man.  Living with a permanent bag does have its challenges, but it outweighs the life he had so sick with crohns.  He is able to do anything he wants to do, snowmobile, rock climb, swim, hike, camp, play and coach lacrosse, be a firefighter, you name it, he does it.  I think you need to consider what your life is like, and what you would like it to be.

 Reply posted for wesson48.

Hi! Yes, I'm considering the same surgery (proctocolectomey with an ileanal pouch) for "indeterminant colitis". I was diagnosed in 2002, but none of the meds I've tried have worked for me. I'm a 21 year old female, so body image is obviously of major concern to me. What's it like having the ileostomy? How bad is the scarring? What is it like after the second surgery? I have a lot of trouble with urgency. Is it like that with the j-pouch?

I would be interested to hear people's experiences with this surgery. The surgeon can give me all the facts and stats I ever want to know, but it really helps to hear from those who have been through it. Are you happy with your decision? Do you think it was worth it? Have you had to take meds since? Are you able to do the things you want to? (ie fly on an airplane without having a panic attack about the bathroom situation haha).

Thanks!

 Reply posted for wesson48.

Hmm.

I do understand what you're trying to do. But it's very hard to generalize about how having (J-pouch) surgery will affect any one person. It seems to me there really isn't any one typical emperience for UC or Crohns patients. We all have our own degrees of comfort and acceptance with our disease- trying to use another's experiance as a way of predicting our own pain/discomfort/issues is not very reliable.

That said- I had my surgery after having 2, 2 week hospitalizations to treat persistant bleeding due what was thought to be UC.  The surgery was hard, but I got through it pretty well (v. tired for weeks, took 9wks to get back my energy) and I was young (35) and healthy (I was a runner and rock climber preceeding my flares and surgery) so I came through it with few issues. The ileostomy was manageable. I had some problems with sores that would have probably gone away with practice, but I had my take down surgery at 10 weeks, so didn't get much. My biggest issue regarding the bag were centered around body image (and I'm not at all vain). Getting used to having this thing hanging off of my body for the rest of my days was something I didn't want to contemplate.

The second surgery was such a minor deal that I don't remember anything about it. Getting used to the internal pouch was a bit of a challenge, but again, I got through it. I had some issues with strong gut twinges, which I wrote off to straining the adhesions that form after big gut surgery. I eventually got pretty well, and even ran a half marathon last year, and rediscovered my love of running.

As it turns out, I didn't have UC, but had Crohns instead, and am now contemplating more surgery to remove my internal pouch and give me a permanent ileostomy. Clearly, having a bag for the rest of my days is not the worst thing that could happen to a person, and I'll get through the whole thing one way or another.

 Reply posted for wesson48.

I'm in the same boat as you. I was diagnosed in 1998 after fighting the symptoms on my own for almost 2 years. I had never heard of Colitis. I've been struggling since then. I take Imodium daily just to get through (with the permission of my GI Dr.) I'm on my third GI Dr., and finally found one I really like who seems to really care about how colitis affects my whole life, not just my colon. The problem I'm having is every drug I've been on (Sulfasalazine, Asacol, Lialda, and Rowassa enemas) cause such terrible side effects that I have no "quality of life" as my Dr. puts it. I had a "re-check" colonoscopy yesterday (found possible pre-cancerous biopsies last fall). Dr. wanted to put me on several more medicines, ultimately Remi-something IV. When my wife told him about my side effects (ridiculously stiff neck, chronic headaches, etc.), he kind of nixed the idea of anymore medicinal treatment. He said if he were me, at my age (38) he'd have his colon removed and be "cured" and have a "quality of life". Of course, I want to know what to really expect, ie. how long off work (I'm not independently wealthy, like most) and what effects it has on all aspects of your life months and years down the road. Exercise, diet, sex life, working, recreational activities, etc. It sounds promising, but it's also pretty major, and you can't change your mind once it's done. Good or bad experiences, anyone?