Hello Mandig

I had butt burn which I defined as extreme irritation of the skin from acidic stool and constant rubbing of toilet paper.  I went to a dermatologist who said he had seen this condition in his elderly nursing home patients and perscribed a compound creme of an antibiotic (MUP), cortisone and aquaphor.   What a relief!  Use daily as needed, also I use aquaphor in between the compund applications also you may consider applying aquaphor an inch or two internally.  

What made all the difference to myself was to liberally apply ilex Protectant Paste.

Although my issue was due to bile acid leaking onto the skin around my Stoma.

Prior to applying ilex; It was the most excruciating pain I'd ever experience; my skin was blistering and oozing, looked like sulphuric acid had been poured over it, felt like it too.

As the output was continuous, it was impossible to clean and apply  creams and potions; at the time and like yourself, I was convinced the bile acid was in between the lotion and my skin, maybe it was.

However, I heavily applied the ilex paste, which achieved instant relieve. It made no difference whether the skin was completely clean before applying the paste.

Within 3 to 4 days, my red raw, oozing and broken skin had completely healed.

As I never wanted to experience such pain and discomfort ever again, as a precaution, I continued to apply the ilex paste around my Stoma.

After takedown, I intially experienced the dreaded butt burn, although my issue was not the traditional diaper like rash.

To relieve my discomfort, I had to apply the ilex paste just to the inside of the anal sphincter, using the tip of my finger.

Whenever I experience the slightest itch, tingle or burning sensation I apply the ilex paste to achieve instant relief.

I can't comment in regard to your stomach cramps, I've never experienced such an issue, so other than  keep informing your consultant, I dont know what else to suggest.

Butt burn is a misnomer a lot of times. Butt burn is a real condition as described by others here. However, there is also what I will term Anal burn - internal burn at the anastomosis (connection of the pouch to anus). And as gross as it sounds - try all of the external remedies you want but if are having Anal burn and you don't get something inside to address the burn there you will not find relief.

Also, I have found acid reducers to be effective in lessening the acidity of my stool - it has brought vast improvement to this issue for me. Of course, PPI's are in the news a lot for correlative studies showing the negative effects they can possibly have (reducing gut acids changes the bacterial composition - which can be positive or negative, PPI's long-term can cause B12 deficiency, and the latest study correlated an increase in dementia risk for those on PPI's long-term). Correlative studies are not controlled experiments and simply show a relationship that may or may not show a cause-effect relationship (none of the other variables are controlled and could be the causative factor). I'll take this risk for a better Quality of Life.

Steve

Ok I'll give a few of your suggestions a try and see what works. Thank you!

Good luck Mandig! I'm with Elmer Fudd on 2 points regarding your butt burn. Have not had that cramping experience so you'll have to find others to help with that. But, long story short- I'm 2 years post takedown, had terrible butt burn for long time though initially was way worse, but use Colestipol to reduce acid in output, along with Walgreens brand Walmucil ( has sucrose but not Aspartane) AND most helpful to heal and maintain comfortable bottom is Ilex paste. It adheres to moist skin and really protects and promotes , allows healing. I now only use at night and will use if going out for long time where I hope to not visit the bathroom frequently. Amazing the turnaround for me, but only available online. I order 4 tubes and a jar at a time and lasts me now 4-6 months. Will also use if I'm going to indulge in spicy food. Good luck! It will get better! Ljz

I couldn"t do without Ilex. It's a lifesaver..been using it about 10 years and counting........

I'm a big fan of Ilex Paste. I have tried just about every remedy that have been suggested, but Ilex is the only one that really helps. Some people complain that it is messy being gooey. I don't care as long as it works. 

My son uses baby wipes instead of toilet paper, and liberally applies Balmex.  This seems to keep it in control.

Man... When I had it there was no relief... Period.  It would subside until the next time I went and at times I was pulling my hair out sitting there.  

I don't have the problem anymore. 

But... No pun intended... It seems that the burn goes with the territory at one level or another.  There are things to calm it but but it seemed while I had my pouch it was there all the time.  No matter how clean I kept myself or no matter what I ate.  It got so bad with me I used lidocaine cream.  And that wouldn't even last.  Just long enough to get some sleep. 

But everyday was different. 

Good luck to you all. 

BB just adds to problems if you are having them. 

I got tired of it.  I did what you and most avoid and got rid of the pouch.  Too much work and too many problems. 

I personally made the right decision.  Others may want to save theirs no matter what and deal with all the meds... Creams... Scopes.. and such. I don't regret trying the pouch.  I probably would have regretted not trying it.    But I look back and I see now that what I have is so much easier to deal with.  It's not bad at all.  I have no pain.  Take no medications and am not running back and forth to the bathroom dreading the burn.  And that BB can take its toll on your mind.  It's terrible. 

Richard. 

Thank you all for your opinions and advice! I really do appreciate it. I apparently have had pouchitis for at least the last 6 months and the doctors did not know enough about my pouch to diagnose me correctly. Now I am waiting another two weeks just to see a doctor for it who still doesn't know squat about it and there is no changing that because where I live there are not very many pouchers. Oh well. This last week between the butt burn hitting me at the worst possible times and all the other issues that go with pouchitis I will have lost my job that I just got. They do not seem to understand how hard it is to live normally with these issues. When I see the new doctor I will be asking to turn in my pouch for another option. I will let them tell me what the best options are and then I will do the research to prepare myself but I can not keep living where I can not even be a chaperone for my daughters class for one morning due to the issues. I really do appreciate everything all of you have said. And to those that are living with the issues because you do not want to give up on the pouch I admire your determination.

I wet the TP with warm water before wiping.  Great to use is

Anhydrous  Lanolin put on up inside and on rash. Buy from your

pharmacist.  Comes in a tube.