Hi all my 11 y/o had his 2nd step making of the J-pouch at the end of November. Since then he has been on and off of Canasa for flare ups in the rectal cuff. He stopped having blood for awhile but has lately started again? I just took him yesterday for a pouch ogram and everything looks leak proof but he had alot of watery bloody fluid from the contrast come up out of his loop ostomy. His GI said to keep him on the Canasa for a few more days and if no improvement he wants to check him for C-diff again? But he has not been on anibiotics? I know C-diff can go dormant but I think he is having a flare up because he is complaining of bad leg pains. Is this all normal and is he going to have to deal with this forever even after takedown? Also what can I give him for the leg pains? I have been giving him Motrin and tylenol but would like something better, I don't like giving him motrin because of him bleeding. Sorry for all the questions but he is Autistic and its hard enough for him to understand. Thanks

Hi there,
My heart goes out to you! I too am a mother of a jpoucher and wanted to chime in on the use of Motrin. I'd suggest not using Motrin because of the risk of GI bleeding. What about Tylenol with Codene or Tramadol? My daughter was recently prescribed Tramadol for a different pain related problem since it doesn't have the adverse bleeding of a NSAID, and is stronger than tylenol. So far, she can take it and get through her classes without too much drowsyness. Her doctor said it's not a narcotic, not an NSAID, and in a class of it's own. Might be worth looking into.

I can't speak to the C-diff issue, but I would also suggest that you look into a good probiotic to help set up healthy intestinal flora. I hope your doctor can get this under control for you soon. If you'd ever like to talk to another Mom, please feel free to PM me.
Elise

Thanks Elise I'm acutally the Dad. But I let mom know everything I find on this great site. I do have liquid Probiotics but his doctor said it won't really do much until after his takedown? I will look into getting him that Tramadol. Does your daughter only get leg pains when she has a flare up?

I just wanted to reinforce the notion of NOT using Motrin for pain at this point. It is not because of the bleeding so much, but because a Cleveland Clinic study showed that people who use NSAIDs for post operative pain (during the early recovery period) had a higher incidence of chronic pouchitis. Tylenol and narcotics, Tramadol, all are OK. However, I think it is important to address the actual cause of the leg pains. If you are talking about cramps, then you need to make sure his electrolytes are OK. If so, then it is probably from inactivity and not stretching enough. This can lead to muscle fatigue and muscle cramps.

There really is no reason he cannot stay on the Canasa full time until the take-down if this keeps him in remission (other than the hassle factor). C. diff can definitely go dormant and reappear when the resistance is low, even without recent antibiotic use.

As far as probiotics go, it is presumed that the bulk of their usefulness is by topical action, so it makes sense that they would not be helpful until after takedown. However, there is some evidence that there is some systemic effect.

Good luck. You have your hands full. Kids are uncommunicative enough without adding autism to the mix. I'll think positive thoughts for you.

Jan

Oops, sorry Dad Yeah, I guess I didn't clarify my thoughts very well...probiotics after takedown...I bow in your general direction Jan
My daughter had one long, unrelenting flare until her colectomy, so I don't have anything to compare flare to flare. Jan is always the voice of knowlege and expertise. Smart water is good for the electrolytes but without the added sugar. I think it tastes like melted snow, ahhh I miss Ohio... sometimes...