Hi,

I would say welcome to my life, but since it you have the pouch 18 years longer than I do, I guess I am following your footsteps.

I am two years in, and my main complaint in life is butt burn. I’ve tried everything, every ointment, lotion, creme, etc. I take Imodium 3x/day. I use the bidet after almost every BM.

I too suffer from cuffitis and take daily Canasa.

I am curios after 20 years, is there anything that has given you relief? Or even partial relief?

I will never willingly give up the pouch for a bag.  But some days, my mind just wanders and I think I would like to tap out once and for all.

the only thing I have not tried is Fiber, psyllium powder. Some folks here have had great success with it.

I basically have given up the hope for a butt burn free life and have accepted my fate.

I do use prep H cooling gel (generic) after the bidet to calm things down there. I get maybe an hour or two relief.

Sorry to hear ur struggling! The only thing that has helped out some is calmoseptine ointment.  Many others use it too.  Dont try the generic.  Not the same. I order mine thru Amazon.  

Hope u find relief!!!

My pouch, anus, and maybe the connecting part (forgot what it's called..is it rectal cuff?) have been prone to inflammation and irritation ever since I got the pouch in 2004, but I have never resorted to medical intervention (besides yoga, certain dietary restrictions, acupuncture & herbs) because it never seemed drastic enough for what western meds do.  I was more wary of the side-effects and after-effects of going that route, from past experience.  I started really focusing on the health of the gut, researching, experimenting on myself, checking this group, etc., over a year ago and my gut health has improved so much.  Within the last year, I have found a few things that have helped with general health of the anus and gut.  The first is psyllium husk powder.  It has to be fine ground for gentlest effect.  I take a teaspoon before each meal and the output is so much more pleasant.  It has a mucous-like protective effect and makes stools that are more formed and not as frequent, so decreases butt burn.  I have taken aloe internally (juice and gel capsules) and I use the most pure form I can get for everyday topical application.  When things are really intense, I use the gel from the plant (it's the purest form and unlikely to have irritants).  The aloe helps heal and soothe the anus better than anything I have tried when the problem is pain from inflammation & hemorrhoids/fissures. The psyllium keeps the stools from being too liquid, and they are a good consistency for an easy exit.  Another thing I have found that really helps the stool consistency is taking plant enzymes after I eat a meal with protein and/or garlic/onion/other gassy things.  It decreases the liquid and gas. Sometimes, even with all the help, the bowel gets irritated and the stools are more liquid, gassy, and frequent.  Then I use calmoseptine to cool the burn and heal the skin.  When the gut is unhappy in that way, oregano oil capsules seem to really help. I am still experimenting with the oregano and the jury is still out on that.  It's a strong remedy so I'm trying to be cautious and really pay attention. 

Wow this sounds like things i could try! Ive never really gotten to this point of pain/issue n calmoseptine seemed to do me fine. Now tho much worse so I will take ur suggestions n see if that helps. Ive been taking physillium  capsules w out result so will try powder. Another issue I have is ulcerative colitis in the rectal portion of my pouch so that complicates things as well. Anything the gastro doc has given me does not help.  I recently started weight watchers so much more fruits n veges which is probably NOT helping! Do u normally avoids those foods?
Thanks for the advice! Im truly about ready to no longer have this jpouch in my life. These issues are recently invading on every aspect of my life....but i will give ur suggestions a whirl n see what happens!!!!

As far as the weight watchers go, I'd just say cook your fruits and veggies.  They're easier to digest that way.  I don't know if what I have had would be considered UC of that area, but it makes sense because that's all the colon that is left and it's unmedicated.

Check out "Listen to Your Gut" by Jini Patel (the 2012 version) for more information.  Not sure she talks about psyllium because I just got it-I had the 2000 version before.  She does talk about oregano oil for infection, healing from infection, and restoring the intestinal flora. 

Make sure you have a fair amount of water with your psyllium.  : )

Ok Ty!!!

Help anyone!  I burn inside and outside my rectum. I go from diarrhea to difficulty going. Only thing I can use is pepto pills 5times strength. I’ve cut in half, tried 1/4 , every kind of adjustment. Can’t find right dosage. I’m allergic to Imodium. I feel like I’m going to lose it, I mean really. Cry and cry. Can’t walk for the pain. No quality of life. Can’t even go to church, grocery, shopping, you name it. H scoot go to hospital several times a year for dehydration. Somebody, can you help. Please

Hi Linda, I also read your other post and those two a year ago. Nothing seems to have changed since then. You are not being very detailed. Burning especially after a BM is typical for an anal fissure. Have you already had an exam by a proctologist?

I had such a fissure years ago and misunderstood it as pouchitis or cuffitis for months. Cleaning with a strong water jet from a bidet (attachment) or shower after a BM can remove particles that get stuck inside a fissure in the anal canal. If that helps, it is likely to be a fissure.

Spasms can also be caused by cuffitis / pouchitis. Did you have a scope recently or know about inflammation of the pouch?

I’m sorry. Thank you your reply. I’ve had j pouch scopes. No answers. Even went to Cleveland Clinic. They did a scope on me with no anesthesia. It was painful. I’ve always gotten in shower with hand held shower with high pressure and washed off any particles   I used dove soap or baby soap and rinsed real well. I use wipes. I literally used and done all I know and can find out to try. I feel like giving up. Help someone

So your pouch seems to be all right if your gastroenterologist did not find the answer? There was no inflammation mentioned in the scope report?

But during a scope they usually don't look at the anal canal in detail, that is the job of a proctologist. The scope just covers the pouch, rectum cuff and perhaps the end of the small intestine. So I would recommend visiting a proctologist if you didn't already.

For me the pain from the fissure got much better when I did an enema with tap water and had a watery BM afterwards. I did that some nights, because it was mainly at night that the pain would not let me sleep. Obviously the fissure was rinsed by the water flushing out. Have you already tried an enema?

Thanks Steve for posting this info to Linda because I myself had not thought about my issue maybe being a proctologist issue. I go for a sigmoid if my pouch soon so will ask my gastro about this before I decide on ileostomy surgery w a surgeon.  I know i must have an anal fissure so that might be more ofy prob n not the jpouch itself!

Thanks again

Hey there, I am new to the group and upon reading my first posts, it’s as if I had written them myself. So I want to share the self care I do that helps me empty the contents of the pouch a lot easier than straining during a BM. I sit in a sitz bath of warm water and try to soak for as long as I can before the actual  bowel movement. Rinse off using your bidet if you have one or go straight to the shower to rinse off. I hope this helps.

Actually Steve, this is so weird. I did 3 to 4 enemas of warm two nights ago and I actually went all day without hurting. I got back on here tonight and you had left the same instructions. It’s the first da in a year without pain. This group post is such a blessing. Thank you Steve for thinking of me!!

lindaslankard & SteveG

Hi y'all.  Is the enema you used just regular warm water, or is it saline?  I was wondering if saline would be less irritating for the tissues (weak saline, kind of like what people put in the neti pot)?

Thanks!  Glad to year you had some success, Linda!

I only used warm tap water, early on per the surgeon recommendation.

Linda, if the pain goes away when you do an enema this is a clear sign for a fissure. You may use clear water or add a little bit of salt to make it isotonic, there is probably not much difference. People here often recommend to use an empty fleet bottle do do the enema.

But remember that this is only a quick fix to clear the fissure. You are dealing with this issue for such a long time now, that there is scar tissue at the fissure. This won't heal by itself any more most likely. That's why you should visit a proctologist to have the fissure confirmed and decide about further procedure. Mine needed to be fixed by a little ambulant surgery. As you are not dealing with inflammation of the pouch, this should not be a problem. With my chronic inflammation it took more time than usual to heal.

When a fissure does heal, how do you know?  What's the difference between clearing and healing?  I have had them (or maybe painful hemorrhoids?) off and on over the years. 

A fissure gets painful when things get stuck inside (during a BM), for example little undigested peanut pieces. Fissures tend to produce a wrinkle in front of them, toward the outlet. That makes them even more prone to contamination.

If you identify the fissure soon and keep it clean, it can heal. People with a colon and formed stool should keep their output soft, so the anal canal is not stretched too much and the fissure breaks open again. There are also special creams for such fissures.

But if the fissure gets chronic with scar tissue, chances are bad that it heals, at least it can take a long time.