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This past week I have started having painful bowel movements that seem to be affecting other areas. It has steadily gotten worse over the weekend. I have this constant painful area right above and behind my belly button. The bowel movements are incredibly painful and I can feel intense pain in my uterus, bladder near my incision and my j pouch. I feel this sudden urge to get to the bathroom ASAP! When I get to the bathroom and try to go, my rectal area hurts SO bad when I push even the tiniest amount, and I feel like I'm having to really strain hard to push everything out. It also seems like I'm having the same problem with urinating as well. The urgency is there. I feel like I can't hold it and then I feel like I can't get it out at the same time. No blood. I feel somewhat okay right now because I haven't eaten since 8:00 last night. As long as I don't eat, the painful bowel movements are limited and short lived. But even without the painful bowel movements, I still have the constant nagging pain in my upper abdomen. It hurts the most just above and center to my belly button and it feels swollen or distended or something. It is tender and more painful if I slightly press on that area. Also, random quick sharp pain around the lower part of my left ribcage. I have an appointment with my doctor tomorrow, but I'm wondering if this is something more serious and maybe I should get myself to the ER?

UPDATE!: I just started seeing blood from the rectal area. I've had cuffitis before. But this feels like there's something way more than cuffitis going on. I've never had all of these other symptoms with it before. And this time the canasa isn't helping at all :-(

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Thanks Jan. I haven't eaten since Saturday night. Clear liquids yesterday was painful enough. I stuck it out. I'm in my doctor's office at Vanderbilt right now and am waiting on a transport to admitting. Nashville has gone through a sudden population boom recently and rooms are limited so it's probably going to be a long day of waiting but I'm finally in good hands now.
Endi
In the midst of all my venting I forgot my question. I tested negative for cdiff. Is cdiff the only bacteria that causes pouchitis? That's how my doctors made it sound without actually saying it. But that doesn't sound right to me. I think they may have been trying to manipulate me into taking the prednisone. Sorry for the enormous amount of posting here. Thanks, guys for letting me vent a little.
Endi
Most pouchitis is not caused by C. diff, though in very severe cases of pouchitis C. diff is probably a larger fraction.

A short course of prednisone probably won't do any harm, and might calm things down enough to enable you to consider your choices under more relaxed circumstances.

Remember that the goal is (I think) to feel well and live your life fully. It may not happen by the ideal path, but it's still the goal.

I hope you feel better soon!
Scott F
C. diff pouchitis must be treated differently than standard pouchitis (which is an inflammatory reaction to normal bacteria in the gut). The antibiotics we take for regular pouchitis can promote/cause C. diff infections, so they need to be careful about that. More and more antibiotic resistant strains are becoming prevalant.

Pouchitis can also be idiopathic, meaning for no known reason. The assumption is that it might be a new type of IBD, and this is why steroids may be called for when the standard stuff falls flat.

Jan Smiler
Jan Dollar
You guys have really helped put me at ease with all of this. Thank you all SO much! After reading your responses, I was about ready to go through with the steroids and everything. However, I feel like the medical team has actually listened to me. They said they understand my concern with prednisone. The anxiety and depression that it gives me is not what they want for me. So they gave me the option of getting ivir immunoglobulin infusions for the next few days. Much lower risk of side effects. I had gotten myself so worked up with all my crying and praying. And then God, you guys, and my doctors are all telling me that it's going to be ok. I actually feel okay about everything and that it's all going to work out. Thank you for answering my questions and listening to my crazy side and helping me get things into perspective.

By the way, here is the Wikipedia for what treatment they are providing for me:
http://en.m.wikipedia.org/wiki...enous_immunoglobulin
Endi
Last edited by Endi

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