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Hi. I just came home from hospital admission for 3 days. I have many issues, but this is with regards to pouchoscopy.  The GI at Mount Sinai in Toronto did the scope and noted inflammation in the pouch in many areas.  Flagyl has worked for many pouchitis episodes before until December when my bowel pattern changed; everything much worse. CT enterography noted 5 cm of thickening in the afferent limb of the pouch, but GI said he didn't note that.

I was given this Cefuroxime 500 mg. Twice a day for 3 months!! I have had 2 pills so far and have pelvic cramping and dark loose stool. The side effect profile reads like a nightmare.

If you have used this medication or have any thoughts on this, please speak freely. I am not happy with the standard of my care.  Thank you.

Gail

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@GEB56 posted:

I was given this Cefuroxime 500 mg. Twice a day for 3 months!!

Gail,

The quote above sounds like you are alarmed at taking an antibiotic for 3 months for pouchitis. How does 25 years of continuous antibiotics sound to you? That's what I did before I went on Remicade. Curiously I never came across or was prescribed Cefuroxime and it sounds to me like SIBO might be suspected. It's worth a shot but long term antibiotic usage will only work with rotation. My rotations happened every 2 weeks but I did take cipro and flagyl in tandem for as long as 6 months. I would not recommend longer than 3 months on any antibiotic. If it doesn't help you are a candidate for Remicade or other biologics. Good luck.

I haven’t seen mention of cefuroxime on this forum previously. I agree with CT that a 3-month course is more typical of SIBO treatment than pouchitis. Have you had pouchitis before? Do you have other reasons to suspect that your case may be unresponsive to more typically used antibiotics for a more typical duration? Antibiotic rotation (in chronic, antibiotic-dependent pouchitis) is desirable, but I think CT overstates the case for it. I’ve been on unrotated antibiotics for 13 years with great efficacy, though I had to add a second one 5 years ago.

Thank you CTBarrister and ScottF.  I have had pouchitis several times, always successfully treated with 7 day course of Flagyl at low dose of 250 mg. b.i.d. My pattern of BMs changed dramatically in October with symptoms over 3 months reminiscent of partial obstruction. Ie.stool stuck around site of old ostomy for many hours; finally and painfully bursting through with small bits of old looking stool passing at a every 15 minutes to an hour for several hours. Exhausting. The process repeats daily with bloat in the 6 month pregnant range. CT enterography showed 5 cm length thickening of ileum at the exact spot I have the stabbing pain near the ostomy site. Pouchoscopy doc 2 days ago said no narrowing there just inflammation. Now there is talk of motility issue with fecal stasis. The small bowel is not supposed to remain full of stool, as you know, so that is another consideration.  I dream of being back to just the odd pouchitis bout so I can get back to cycling, kayaking and swimming. My good exercise routine has been shot for almost 4 months now.  BTW, I am allergic to Cipro. I used Amoxil for a UTI once and it gave a side benefit to the pouch. Thanks again for the info you both provided.

Can't do it Lauren. I have latent TB that cannot be prophylaxed. A trial of Isoniazid led me to serum sickness and a long hospital admission. Therefore, I can never ve a candidate for biologic.  If all of my jpouch issues cannot be resolved, I may need to have an end ileostomy. I will br okay with that if I am out of options. I am tired of my ongoing poor function and quality of life for the last 4 months. I am 64.  Thanks Lauren.

@GEB56 posted:

Can't do it Lauren. I have latent TB that cannot be prophylaxed. A trial of Isoniazid led me to serum sickness and a long hospital admission. Therefore, I can never ve a candidate for biologic.  If all of my jpouch issues cannot be resolved, I may need to have an end ileostomy. I will br okay with that if I am out of options. I am tired of my ongoing poor function and quality of life for the last 4 months. I am 64.  Thanks Lauren.

Wow!!! You look amazing for 64!!!!

I am glad you are open to an ileostomy bag if that is what you need, I am glad you are optimistic! We need more of that in the world. I hope you feel better honey and keep us updated. And you are welcome

Do you ever take NSAIDS like ibuprofin?  I had my j-pouch created in 2006 and had 3 episodes of pouchitis between 2007 and 2009 at which time I stopped all NSAIDS.  I haven't had one episode of pouchitis since then for 12 years between 2009 and now.  I also took probiotics until 2009 and haven't taken them since but I think it more likely the pouchitis went away because of stopping NSAIDS than because of stopping probiotics.

Cefuroxime is a second generation cephalosporin, a broad spectrum antibiotic. While it often is fine for a variety of infections, one of the more serious side effects is C. difficile infection, which can present with the same symptoms as UC. With the symptoms of cramping and dark stools (indicating bleeding higher in the GI tract), I would report this immediately to your doctor. Were you given a cephalosporin in the hospital? Were you tested for C. difficile?

Unfortunately, your history makes you a quite complicated patient. If you have C. difficile cephalosporin is contraindicated and you need either Flagyl or vancomycin. If C. difficile has already been ruled out, then this is even more complicated.

Hope this is sorted out soon!

Jan

Last edited by Jan Dollar
@Daleer posted:

Do you ever take NSAIDS like ibuprofin?  I had my j-pouch created in 2006 and had 3 episodes of pouchitis between 2007 and 2009 at which time I stopped all NSAIDS.  I haven't had one episode of pouchitis since then for 12 years between 2009 and now.  I also took probiotics until 2009 and haven't taken them since but I think it more likely the pouchitis went away because of stopping NSAIDS than because of stopping probiotics.

Some IBD people have even said that NSAIDS have made their UC worse too. NSAIDS have a ton of side effects!

Hi Jan Dollar. Thank you for sending a reply. I was given Cefuroxime in hospital 5 days ago. I was reluctant.  I have taken Flagyl many times with simple pouchitis which worked well. I am far beyond that now. I am allergic to Vancomycin. Today, I wake up with my skin itching and the beginning of hives which I have with other antibiotics and cough worsening. I am crampy and more nauseous with it. My incontinence continues. I am abandoning this drug. (negative Covid a week ago in hospital). I didn't have c. Diff and no diarrhea. On the contrary, I have old looking dark stool pieces. Deep anal pain and cramping. Did I mention CT enterography showed pouch collapse, thickened Blind loop and enlarged lymph nodes? I feel I was sent home in terrible condition. I will contact GI who gave me this drug tomorrow and discuss further. I want surgery! This has been a daily 4 month painful condition. My pouch was great until mid September. I need a doctor (s) who give a damn.

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