Flaring on remicade fml

After every infusion I've been having little week long flares, they don't really bother me. After my last infusion about a month ago, I've been flaring and it's not stopping. I have not seen any blood since july but I have light urgency and stools are not formed at all. I'm going 2-5 x a day. I should probably start eating healthy again, been slacking in that department. I really don't want to be on prednisone again. When i'm on that nasty stuff I end up needing norcos & xanax too. Colonoscopy is coming soon, maybe she will say surgery and I won't need to deal with this anymore! Hope everyone is good.

" hate to be a broken record, but getting surgery or not is YOUR decision"

No, Cadillac needs the blessing of the pope. In this case, the GI.

lol

Somedude said...
" hate to be a broken record, but getting surgery or not is YOUR decision"

No, Cadillac needs the blessing of the pope. In this case, the GI.

lol

but with benedict stepping down, who will render a verdict?!

haha, surgery is risky. Never base yourself on other's results. Same goes for meds, but you know that.

His result won't mean it will be your result.

What is the solution to our situation then? ....idfk lol

I have had two Remicade infusions so far. A couple days after the first one, I felt a bit better for 5 or 6 days, and then slowly started to feel not so great again. 2 days after my 2nd infusion I felt awful, and found out about a week later I had C Diff. Now that the infection is being treated, I don't feel like my flare symptoms are much better. Not sure what will happen with my 3rd infusion, because of the infection and everything....but I have already spoken with a surgeon and am seriously considering going that route, with an end ileostomy instead of J Pouch.

I have given it A LOT of thought. The past few months have been pure hell, as I'm sure many here are familiar with. I have lost 35 pounds I didn't have to lose, haven't slept for more than 2 hours at once in 3 months. My UC is steroid refractory, so even if I do get into remission, I know that the next flare won't be easy to get under control, and I really don't want to live always wondering when that will happen and how bad it will be. Maybe if I do end up being able to get my next Remicade infusion it will fix everything for now....who knows.

Right now I am in such poor health that the J Pouch would be 3 surgeries....not something I really want to do. 3 times the risk, time off work, recovery....everything. There are more possible long term problems with the pouch, and still going to the bathroom frequently. I have researched spending the rest of my life with a bag, and really think it would be very doable with some adjustment, and more suited to my active lifestyle. I feel like it wouldn't be so bad to have to empty a bag from time to time. Maybe I'm crazy....but that's where I am right now.

I totally understand your point of view, and appreciate someone playing my "devil's advocate"! I think about both options a lot. Maybe my thought process is clouded by just wanting to feel normal again and having it all over and done with as quickly as possible. That is why I'm not rushing into anything.

I have read countless posts and blogs by people who are happy with both the J pouch and the bag. It is one blog in particular that gives me confidence the bag might be more for me. I do a lot of the same activities and really think I could handle it.

http://ostomyoutdoors.com/ (not sure how to make links blue!)

Either way, it IS a lot to think about on both sides. Hopefully I make the right choice or find a medical solution soon. Hopefully we ALL do!!

Somedude, you gotta stop projecting your own indecisiveness onto everyone else. There is a level of pain/poor health that makes the surgery decision *easy* even if you've been sick for less than a year... I definitely hit it.

UCWhat, if you visit an ostomy nurse (ask your surgeon for a referral) they can set you up with a wafer/pouch on your proposed stoma site and fill up the bag with a little water so you can actually wear it around for a few days and kind of see what it feels like. You don't actually need a stoma to be able to wear all the gear.

@Pluot~That is a great idea about wearing a bag for a few days, thanks! I met and spoke with an ostomy nurse at great length after my first surgery consultation. I was impressed that the surgeon offered me the chance to speak with him that soon, and that the hospital has enough of them for one to be readily available to speak with me. I have all of his info and will definitely get in touch and ask about getting a bag. How are you getting along with your bag, and has your cold finally passed?

@Fruitgirl~ Thanks, that is pretty much how I feel. Though there are other things out there I could try, I don't think I'm in any shape healthwise to be experimenting. Besides, I've been through SO much since being diagnosed, I can't imagine doing it all over again for the next flare...and the next...and...etc...

In the meantime, I hope and pray we all find the answers that make us happy and healthy!!