I have had cuffitis also, it still bothers me sometimes but seems to stay under control with a homeopathic remedy (Ipecac 30 mixed with Merc Sol 6) This is a remedy suggested to me form a practitioner in new york that has around 30 years of experience with homeopathic remedies. Anyone who has ulcerative colitis should try it for at least 2-3 months and see if they benefit from it. I wish I knew about it before my surgeries. Since cuffitis is basically UC in the small remaining piece of colon..It seems to work with cuffitis as well. If fissures are part of the problem, you could get this mixture also (Sulphur 200 mixed with Rathania 200). Homeopathic remedies are gentle on the body and  usually have no side effects so definitely worth a try.  Hope this helps.

Hello, DDS. To help relieve the butt burn, have you used a squirt bottle to clean the area with warm water, and only using toilet paper to gently pat dry? Any kind of wiping, whether it is the best toilet paper or gentlest baby wipe, will hurt your damaged sensitive skin, especially a dozen times a day. A squirt bottle, also called personal bidet, can be bought throug Amazon for around $15 (buy barrier cream at the same time and total enough for free delivery). I could not have survived my early pouch days without a squirt bottle, and just recently installed a bidet on the toilet for around $100.  Using warm water to clean the area and patting dry is a lifesaver. I hope you try the bidet. As far as starting to exercise and being nervous about being too far from home in case you have urgency, try to walk for only 10 minutes from your front door, turn around, and walk back home. That is 20 minutes done!  Or go around the block. You don't need to stray far from home, or join an expensive club, or try to walk three miles a day. Start small and start easy. Walk 10 minutes out, and 10 minutes toward home. Or less if that is better. Do whatever you can today, and let that be enough. In three days you will do much better and maybe you will walk for 25 minutes, and feel more confident about holding and urgency outside the home. You will be close to home so don't worry too much. Even if you have an accident, you will be very close to home. Start out doing small things, gain confidence, and then go big, and have your surgery if you need to. I truly hope you feel better soon. Good luck.

Since you are so miserable, have you considered getting a diverting ileostomy until you can get pouch advancement surgery? It doessound like you need a rest, and an ostomy could give it to you.

Jan

Hi Jan,my surgeon won't do anything until i lose 50pounds. I live in the tip of texas. He's the only surgeon here in the valley. I also have a crappy insurance. Im getting a better one in jan.I just got hired at Subway. I've been looking for a job since last year sick or not i have to work.I dont have my parents to help me they both have passed away.I don't have kids. Or a husband just a brother and sister that have been helping me but it's been a struggle.in the meantime ive been taking online classes to further my education.I'm terrified of trying entyvio. My insurance don't cover it.my gi is getting it for me thru a program.I'm also a mortician but have not been able to get back to work at a funeral home because of my illness.  I'm just taking it one day at a time.

Well, that just sucks! Sorry about this. As for the Entyvio, try to relax about it. I've been on one biologic or another for more than a decade without any side effects. The main thing is the hassle of frequents blood tests and the infusion appointments.

Hopefully it works for you.

Jan

Your story sounds so familiar, except I only suffered a year and a half before I found relief.  2 stage surgery in 2014 and within a week or two of takedown I started dealing with butt burn that felt like cuffitis.  At first I thought it was the normal adjustment period.  Anucourt and canasa did nothing but cause more irritation when used and antibiotics helped a little (probably because they limited inflammation).  I also developed terrible joint pain and was put on enbrel, which got the joint pain under control, but did nothing for the butt burn/cuffitis.  The only saving grace was that I listened to all of the recommendations to get a bidet which helped after I emptied my pouch, but it was like I was passing shards of glass to empty the pouch.

Three months ago, I finally found relief when someone on here recommended cholestyramine powder and I was able to convince my GI doc to prescribe it.  It has been a wonder drug for me.  It is a bile acid sequestrant and I take a scoop every morning to get rid of the hot lava that came out when I would empty my pouch.  I guess you can take a dose with each meal, but for me the butt burn only comes back a little around bedtime and I haven't felt the need to increase the dosage.  One thing that may have played a role is that I had my gallbladder removed in 2012, so I am not saying this will work, but it may help.  I was ready to go back to an ileo and willing to try anything and very lucky that someone else shared there story of success.

Hi DDS,   so sorry you're struggling so with your pouch. Mine isn't great and I still plan my life and my intake around my output. Regarding the burning, I take a medication called Colestipol but may take Jason's advice on the cholestrymine powder because while it helps, I still have acidy output. I suffered a lot with cuffitis for over a year, and used all kind of things but what I think actually helped was using Ilex paste. Typically, I apply this after cleaning up following each BM. I use a "personal bidet" though if I keep my pouch I'll get a real one with really nice hot water! For now I enjoy it with 2-3 refills of warm water from nearby faucet, use Vaseline very generously too, and then apply Ilex paste. I order direct online. Now I use it externally, but when I had cuffitis my GI and wound care nurse thought it okay to put some interanally.  My cuffitis went away. Ilex paste adheres to moist tissue, making it different than the many other products I tried. It really protects tissue from butt burn.  I now use it Daily but alternate with just Vaseline or Calmoseptine  or nothing. I did just 2 months ago had pouch advancement and mucousectomy.  Not sure about results, as I now have fewer stools and less output, but do have some urgency and leakage. Regardless,it saved me. I was on Entyvio and felt it helped but not sure. No down side except $$$$. Now without cuff no point. Maybe it will help your pouchitis. Truly hope so! My new gastro also recommended reducing carbs to reduce my excessive gas. I'm working on that. Good luck to you on job and new insurance and of course getting diversion or whatever else to feel better!

laurie

My cuff is inflamed too I have been on entocourt 3mg and metronidazole 400 a day 60 codine phosphate xyloproct ointment proctosydl of ever were I do at minute I am bad with gas and anus is sore even wen I sit down he pain goes right up my whole tummy is tender wish I could get it sorted help��

I live in Belfast anyone on here from the same place to compare notes 

Hello, barbarkearney. Soon after my reversal, I had the same sharp, shooting pain when I sat down, even if sitting on a soft sofa or bed. It would start at the anal area, probably where the join is, and shoot up toward my stomach. Was very worried about it. I asked my surgeon and he said it was caused by the inflammation from my surgery and also from frequency in those first few days of use. It went away after 10 days or so, can't remember exactly how soon, but I didn't have to take any pain meds for it. It only happened when I sat down. No problems now. I hope it will be the same for you.

Thank you for your input but I've my pouch 20 years now this comes and goes at different times at the moment my flare up is in to its 3 week extra 3 of bedesonide so up to 6 a day 800 of metronidazole now I'm either too solid or too loose can't win still going about 10 -15 times a day night mare glad  not alone.