Thank you all. It's just rough, so rough and not having any medical support on how to deal with the daily symptoms is really tough. I'm in a constant cycle of abscessing. It's been a bit easier to handle over the last couple of months especially with almost normal bowels. But I tell you, this last week has been utter hell. I don't know what happened. Was fine, then reaction to Stelara infusion, then almost simultaniously a brutal peri-anal abscess attack, and now flare. Still dealing with side effects of Stelara. I almost had a break down and am very fragile. I know this. I just don't know how it's ever going to get better. It's like I'm being re-tramatized every time.
The RVF is really bugging me. I have no stool coming through (thankfully). But I can feel it. Or it's the irritation of the vulvodynia. I spent yesterday holding myself.
There are so many pressing things to worry about
. When it was "just UC" I was only dealing with d, but fistulas are evil. Pain, drainage, abscessing, pads not to mention no tampons or diva cup.....then I worry my PG will flare. I'm overwhelmed.
However, over the past 3 months I've experienced some good things. The normal bm's helped tremendously. i rationalized everything , that as long as bm's were good, the fistulas would heal and I didn't need an ostomy. I caught up on things at home, went out, planned dates, gardened, walked my dog etc etc. (I even wore white jeans!!) All this while going through withdrawal from oxy. I'm proud of myself for that.
But I'm very tired with limited coping mechanisms and physical support. I'm clearly burnt out and coping with a flare adds to it. (If this is a flare....has certain elements of one).
Barbz---this was my second dose and as noted above it's been crazy and instantaneous happenings. Severe itching, nausea and now headache. (It's been a week). And the fistula issue....
Plucky---I don't have a pouch or ostomy. The CRS wanted me to exhaust all medical options first as my risk of PG is high. I'm also terrified and don't want one. IF that's the case (at least for now) I have to deal with this. Maybe this is just a set back for some strange reason. You're braver than me, although I've certainly done more research, thinking etc. on it. Just not there.....yet.
How long are you giving Stelara?
If Stelara fails I'll have to try AMAT as I've tested positive to MAP twice and can't ignore that may be my way out of this disease.
Thank you all.....I mean it.
PS. the only thing that really helped my RVF was hyperbaric oxygen. I may try and go back to that.
Post Edited (U B Tough) : 7/26/2017 7:01:31 AM (GMT-6)