If it helps, both on and GI are on board with staying on Remicade assuming I ever get to that point. They have both stressed multiple times that a flare is a risk in and of its self. Maybe it would help to talk to a high risk ob if one is available in your area?View Thread
well, I just heard back from the dr's office and the MRE showed some inflammation but not scarring. I'm somehow simultaneously relieved to not be headed towards surgery and yet scared I'll feel crummy forever. I have an apt in 3 weeks, just hoping he has other things to try.View Thread
Hi Everyone, just thought I'd stop by and I actually ended up getting surgery 6 weeks ago and feel great.
Laura, thanks so much for the reply. I'd gotten so frustrated with the drama of being sick that I hadn't check in on the board again and missed your reply.
In the end, you were right, my GI had me do a pill cam just to be sure (the last colonoscopy they couldn't intubate my ileum so they couldn't see anything that way). He was pretty sure that the double dose of remicade would take care of me but since I'm looking to get pregnant he double checked, and sure enough, the pill cam got stuck.
I had a great surgeon, the GI I see is part of an IBD group at a local med school and the surgeon was the one associated with that group. It was certainly not something to be afraid of, it wasn't much worse than a bad flair and I recovered so much faster than I did from the blockage in December. I just lost 5 inches of small bowel, and that included a skip pattern so I guess its weirdly concentrated. (they also took the icv and cecum since it was right up against the icv)
I see my GI on Friday, hopefully this will lead to a good long remission View Thread
Hey everyone. I'm at a crossroads. My big issue right now is just exhaustion but over the years I've gotten these pains and they're just getting worse each time. This last time they didn't go away and I went to the ER and they admitted me for 5 days for a (partial?) blockage. This was the week after remicade, not cool. I'm nearly 35 and I'd like to have a kid but am not in terrific shape. While I was in the hospital, one of the on call drs from the gi practice I was with suggested I go to a IBD specific GI that he knew. It took 3 weeks, but I finally had my apt with him yesterday. The 2 options he suggested were trying 10 mg/kg (I was at 5) for 2 doses and if I had any symptoms, to look at surgery, or the second option was just start looking at surgery. He said his concern is there is probably a decent amount of scar tissue. My instinct is that is the case, mostly bc it just keeps getting worse. I'm normally a very conservative person w medicine but I'm much more interested in what is the best chance in terms of having a healthy pregnancy.
My current thought right now is to go down the surgery route bc I'm afraid that if we do the medicine route and even if it appears that I'm doing ok and I get pregnant that I'll end up with a blockage while pregnant anyway. Best case scenario, I'd be on TPN which is bad enough but abdominal surgery while pregnant terrifies me. Especially since I've had blockage pain happen with no warning. Also, the GI thought there was a good chance I'd miscarried this past summer bc of the Crohn's and I'd rather not go through that again....
sooo, it scares the crap out of me but I guess I'm leaning towards surgery.
anyone have any thoughts or advice? (and if it matters, the surgeon does laproscopic resectioning)View Thread
yeah, its a weird set of emotions, I am really glad I don't need surgery. At the same time, I've also spent much of the last 12 years feeling bad but not getting much better so I'm also fearful that it'll continue like this. I have a new dr though and I'm hopeful he'll have more ideas and suggestions about avoiding the sudden onset blockages
and for what its worth, I was looking at a totally different surgeryView Thread
oh wow Jodi, I'm so sorry you had to go through that. When I was in the hospital I kept thinking "I could have been 7 months pregnant" and it scared the crap out of me, so I was already thinking surgery, and about 1/2 the doc then suggested it (the others said "don't get surgery" - nice to have a consensus )
I do feel pretty good that both the GI and surgeon will check everything they can before going ahead which makes me feel so much better.
I am scared of the diarrhea but I try to keep reminding myself that I'm living on whey shakes and chicken w rice or pasta so its not like things are terrific now
thank you so much for sharing your story, I'm so glad both you and your son are ok!View Thread
Hey Mindy, great to hear from you. I certainly will keep everyone posted. I'm excited about this new Dr and everyone at the office, I hadn't been thrilled with the GI I was seeing previously. Who knows, maybe it'll even make the 5 days in the hospital worth it (since that's what got me the referral )
Yeah, the Dr was only going to wait 4 or 5 months for the remicade to do anything (basically 2 dose cycles) and if that didn't do it, then I'd have to wait the 5-6 months more to do the surgery and recovery before trying. That would put me right before my 36th bday...
I'm getting the highest dose on tuesday but my concerns still exist that I felt great right before the symptoms started in 2010, so what is the say I couldn't feel good now and still have problems.
I was actually just emailing the Dr so I really appreciate the feedback. I basically said that if the scans look like there is a good chance I'll need surgery at some point, lets just do it. it scares me but I think its probably the best bet at this point
I think the fear with the diarrhea is just the unknown but I'm sure I'll adapt what ever happens. I've certainly adapted to plenty over the years.
thanks again for writing, it really helps me come to peace with a decision to just talk it out with peopleView Thread
thanks Hannah, that really helps knowing everything you've gone through. My biggest hesitation/pause/worry at this point is having to deal with diarrhea afterwards. I know its stupid, I have crohn's what do I expect? and the constipation is no picnic either. I guess my plan at this point is to say to the dr that if the test look like it inevitable that I'll need surgery then lets just do it. It'll be a hard call if it comes back unclear, but I guess I'll deal with that then.
I am scheduled to get the higher dose on tuesday just to try to keep me going until we do something. He did say sometimes he'll let people go w/o meds after surgery and scope them freq to watch for biopsy indications of disease return but my hands have been getting stiff and he's concerned that if I did that my joints could get worse I would love to not dose a baby but as he says, there's no indication they are harmed...
anyway, thanks. Hope things are good with youView Thread