I have been dealing with both infections for many years. Usually my treatment is an antibiotic with rectal steroid suppository. The infections go into remission for a few months and then return. This time the infections' progress was very fast and the pain level jumped to a 7 in a matter of days so I am taking an oral steroid as well as Cipro and the suppositories. I rotate antibiotics to avoid antibiotic resistance. Is there anything else I should do? Have any of you taken an oral steroid with your usual treatment? 

Original Post

You might be able to prevent cuffitis flares by using rectal mesalamine (e.g. Canasa suppositories or by enema). It's probably helpful not to think of either of these as infections. Cuffitis especially is just like UC in the small remnant of colon that you have (the "rectal cuff"). Pouchitis seems to be connected to the bacterial mix in the pouch, and antibiotics alter that mix - but it's not an ordinary infection.

Thank you for your reply. Unfortunately, my uc never improved with either oral or rectal mesalamine. I have done everything I could try to keep the bacterial mix in my gut healthy but nothing has worked. Ibd diets and VSL #3 did not work. I tried each diet for a minimum of three months except for following the AIP diet for six months. It worked the best but my family hated it. 

Short chain fatty acid enemas are a venerable treatment for distal (near the anus) colitis. Some people get good results. The ingredients aren't particularly expensive, so (assuming your doc agrees) you would want to shop for a compounding pharmacy that is reasonable.

Also: just because topical mesalamine failed for you with UC doesn't necessarily mean it will fail in cuffitis.

I'm in constant need because I keep getting pouch inflammation or cuff inflammation. Why ? what can I do to prevent this from constantly happening?

I took antibiotics and that did nothing? last time I had this I was admitted and given IV antibiotics and it seemed to work. well this time when I felt the same symptoms of last time. I asked and thought I was crazy for such a request! I did not think so if it worked why not go that route again at an infusion center somewhere?  Anyway is there anything I can do in the meantime? any home remedies that would work?

For awhile I used antibiotics PLUS Budesonide ("designer" oral steroid) to treat pouchitis.  Generally it isn't supposed to be a maintenance drug (although there are trials using budesonide as a maintenance drug for UC going on now), and I always flared when they tried to wean me off it (and they didn't want me on steroid suppositories long term either, due to concerns about thinning tissues).

Ultimately I switched to antibiotics PLUS Immuran and that combo is working well for me.

To be honest, I think my energy level may have taken a slight hit, but I've adjusted. I have 2 kids and work 50 hrs/wk, but I don't let it slow me down. Biggest difference is I used to be able to really push myself and more easily get by on fewer hours of sleep, and Icant really do that to myself anymore.    Like where I used to routinely get by on 6 hrs/night, now, I can do 6 hrs a couple nights/wk, but I need 7-8 on the others to keep up.  I couldn't function well with pouchitis though, so needing more sleep is a reasonable tradeoff for me.

Well I saw Dr. Shen yesterday for a pouch scope. What he found was a small ulcer not in the pouch itself but above. How he wants to treat is IV medication Entyvio. that will treat both infection and ulcer , according to Anne Feldman, according to his nurse practitioner Anne. I hope this works I missed a whole week of work last week and do not want to be replaced!

Thanks had the 1st treatment  on Tuesday. I felt nothing until the next day. I ACTUALLY felt normal the next day and then after that i havent felt very good. Does it take more than 1 treatment? Also was given a list of side effects and the brain damage is so scary!!!  Do you also take any steroids? I did years ago whe i had my stoma and felt fabulous. Ever since i had the jpouch surgery i have been in and out of the hospital. If this treatment doesnt work im really considering going back. My husband feels its not a good choice but he is not the patient although he had been with me every step of the way. Should i mention to Anne and Dr. Shen about the steroids?  By the way they were oral steroids and at that time my weight was up  and mow weigh 96 lbs at the age of 40 so not very happy about that! I just want to live my life pain free. Ya also now on disability can only work like 2 days a week is this truly a life???

JJA, turns out I have a very bad reaction to Imuran, uncontrollable vomitting and a blinding headache so bad that I temporarily lost the vision in my left eye. It was a useful suggestion though. My gi wants me to try humira before trying entyvio. He considers Entyvio the very last solution he recommends before surgery. He is nervous about the viral vulnerability to patients using it. 

 

LJK, 

I was on and off steroids for about 25 years. I suffer from bone density issues because of how long I used it. 

I am very sorry your treatment is not working. Trying all of these drugs feels more like Russian roulette than a treatment plan. I hope you feel better soon.

Subzero-Yikes! That sounds scary-sorry! My docs say my next steps are Humira or Remicade, with Entivyo to follow if/when those don't work. I thought I was facing surgery a few years ago. Now I just keep hoping I have enough time left on immuran and then roll through these biologics once that stops working to buy enough time for something new to come along to keep staving off surgery.  I wish you the best! 

Entyvio can take a while to work but I was lucky after the first infusion. This is my last hope drug but there is no way I’m removing this pouch, no no no more surgeries for me. Don’t worry about brain stuff, not one case has been found. Yeah, I sometimes get a delayed reaction. it’s very strange drug, lol, I do get premeds with solumedrol and benedryl. It has helped with some dizziness and nausea And bone pains I would get. I still got a spell this infusion of extreme tiredness but it seems to be improving. Don’t worry everyone gains some weight on Entyvio so for you that’s good! 2 years for me, I hope it continues until something else comes along. Check out Entyvio warriors of Facebook 

Wow,you have been through the mill! And here i am complaining. I pray we can both get through this"nightmare"  Dr. Shen did want to do another surgery too because of  the angelation of pouch but im terrified! The alternative is going for pouchouchoscopys every 2 months for dialations of the pouch. This does work! Do you have children,work, travel some? These a the things i want in my live and also a succesful career. I need to finish college had to drop out wben this all started when i was 25. I dont think im asking alot but right now im not able to do any of it! It sucks when i see people around me doing these things and i cant. Anyway i feel nausiated today i assume from the Entyvio,hoping it goes away. Thank you so much for responding and telling me your story.i really helps me to keep trying! Looking forward to hear back from you soon. Where do you live? I live in Akron, Ohio��

 

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