Remicade or J-pouch

notsosicklygirl said...
One of the girls who had surgery recently was supposed to get a j-pouch and found out AFTER surgery that she's not a candidate or she's not healing correctly for the pouch and it may never be an option. Those types of stories scare me a ton. I'd truly hate to live with a bag. I know it's not the end of the world but buying and changing supplies sounds so inconvenient. Again, it's a million times better than active UC...

I didn't opt for surgery until I reached a point where I would be OK with either a j-pouch or a permanent ileostomy. I'm having three steps so if the pathology report on my colon had indicated Crohn's after step 1, that would be it. No j-pouch, perm ileo. I was so sick at the time -- truly believed I was dying -- that it didn't matter to me. Heidi's blog (www.ostomyoutdoors.com) reassured me a lot. I'm not a big outdoorsy girl like her but seeing what she was capable of and how nonchalant she could be about something that seemed so scary meant a lot to me.

Remicade didn't work for me, even a little. The only way I could tell that I was getting Remicade and not pure saline were the migraines I had the day after infusions. Still, I don't regret trying. If I could have had a full or even manageable remission on Remicade I would have taken it and forgotten about surgery. Surgery is hard. When all is said and done I'm going to have about a year of my life (*hopefully*) that revolved around surgery. I'm not saying I'm not having fun and doing productive things in the meantime -- I'm back at work, I see my friends, I exercise, I *eat* -- but ultimately this year is about surgery for me and major things that I want to do have to be put on the backburner or scheduled around my time in the OR and recovering.

One thing that I did not know before my surgery is that if you have pancolitis with any level of inflammation (aside from zero) for many years, eventually a colectomy may be indicated regardless of your symptoms. There's a woman on the j-pouch.org forum whose UC was not super out of control, but because she had pancolitis for 20+ years she ended up with surgery anyhow. I was diagnosed with pancolitis at 25, so although I wish it weren't so, in some ways it's for the best that I was forced into doing my surgery now when I'm pretty healthy. Probably my biggest regret is that it wasn't the right time for me to have a pregnancy and child when I was younger/before I was diagnosed, as fertility declines after surgery and delivery becomes higher risk.

I think it's probably because the colon becomes so f...ed up from healing/ulcering healing/ulcering that it don't work properly anymore.

I think you need to hit remission fast and stay there forever.

Probiotic mentioned his colon looked like a long tube, no groves, nothing.

My first question is typically can I still drink vodka (I have a few martinis on the weekends ; )

I've been on remicade for 2 years, gave me my life back.  I knew that I wanted to try everything b/c if jpouch for some reason did not work or there were complications with the jpouch, I wouldn't second guess, I would know.  Plus I knew I wanted to have children and that would put me 2 years behind where I was.

Best of luck to you, hope you are better soon.  It took me six months to go into remission.  5 steps forward and 3 back, emotionally draining but worth it.

I'm just theorizing, I don't know nothing in medicine. But if something is f''ed up in the body, there is a chance it becomes infected and then toxic. If the colon becomes a crack pipe, it might start producing infections and crap.

On the other hand Old Mike has been at it for 30 years, so I dunno.

I'm a 20 year veteran of the J-Pouch. Had my surgery in July 1994 after 16 year struggle with UC. I wouldn't trade my pouch for anything or the (near) normal life that I have had since surgery. I only have 3-4 BM's a day with loose or soft formed stool. With a new (but unproven) diagnosis of Crohns now, I am so grateful for all the years of good health and second child that I have been blessed with. UC is a miserable disease so any chance that you have to feel better is well worth it. Good luck with whatever decision you make, I've never been sorry about mine.  :) 

Well I tried to go above our GIs head last year and scheduled surgery for my daughter who has steroid dependant pancolitis. Her GI did not feel it was time. It didn't end up happening and though it's quite possibly in her future I'm starting to think that there actually will be a decent treatment for this flipping disease in the next five years or so. Ssi looks very promising in early trials plus the stem cell therapies and the new 'mabs. But I'm not sure if we'll get there. I suppose I would try the meds now and see if you can hold off. If not, surgery is probably going to give you a good outcome (very high success rate for UC).