When do you say enough is enough??? It has been 20 months since takedown and the butt burn is just as severe as it was initially. It is definitely diet related, but unfortunately it is almost everything that I eat. All fruits except bananas, anything citrus, tomato based, chocolate, any seasoning except salt, coffee... is incredibly painful. I am frustrated, underweight and trying to live a “normal” life. Ha! I have been having 7-10 stools a day which is normal and always have had some incontinence. I have tried lidocaine, all creams humanly possible, but eating any “no” food in even it’s smallest portion is recipe for a miserable 24 hrs. Any advice?
Assuming you’re using the barrier cream correctly (*after* each BM) then it’s way past time to try some other things. The easiest thing to try is tinkering with the pH, using something like Zantac, Prilosec, or even Tums. You’ll know pretty soon if it helps. Another thing worth trying is cholestyramine resin, but that needs a prescription. Has you GI (or surgeon) taken a look? It’s hard to inspect ourselves down there.
I had the same problem among others.
No cream or anything would stop it. Nothing.
It was one of the factors in my removal. Yes. That painful every time I went. Nothing absolutely nothing would stop the feeling of lava coming out everytime. No matter what I ate it was there. I'm not saying you go to the extreme I did. But I will say one thing. I don't miss using that part of my body one bit and I don't regret what I have done. It ruled my life completely. Every day revolved around the bathroom. I was done and am done with that. I have the freedom I want. And no regrets.
Been there. I found mine was the remaining cuff irritation after j-pouch where UC was still present
I went on entyvio and things have improved dramatically. Still have to watch diet but pain is significantly less. Good luck.
I have found nuts to be extremely irritating with butt burn.
Have you been checked for pouchitis? OR a fissure? hemorrhoid?
For me,. it is all related to diet.
I avoid dairy foods, especially anything that has lactate.
I also use calmoseptine. It helps a lot.
After each BM I rinse with water. I discovered this in middle east countries where next to each toilet is a hose for rinsing. Cold water. Afterwards cream
My (once serious) butt burn has eased over the seven or so years. Half year ago I started using toilet paper plugs and that reduced the butt burn to quite little. My transition time is about right. I am on a healthy vegan diet and don't take medication.
I have tried Zantac, nexium and questran. The surgeon looks every time that I go in. He just says that the cuff is raw/irritated and can take 2 yrs to heal and get used to it’s acidic environment. It is definitely diet related. Unfortunately it is anything that has any flavor. I use a bidet at home, wipes at work and calmoseptine. I use nitroglycerin or lidocaine for fissures. It seems the only thing that gives even slight relief is sitting in the hottest water possible. Suggestions are welcome.
I would ask for antibiotic - cipro with flagyl and see how that helps.
If the irritation is at the rectal cuff then it might be cuffitis. UC meds administered locally may be useful - Canasa suppositories or mesalamine enemas.
I struggled for two years after takedown with this problem. Was seriously considering giving it away if I couldn’t have a comfortable life. I found that flagyl or cipro stopped the burn and made me feel normal (reduced the number of motions too). What I discovered was that after a course of antibiotics I would get between 1-3 weeks where I could do without them before the pouch became unsettled again ( and the burn returned intermittently). So I have stuck to a regimen of rotating antibiotics- 10 days cipro, as long as you can without any, then 10 days Flagyl. Been doing this for 4 years and tolerating it well. Not ideal to be on antibiotics a lot of the time but better than being in pain. Maybe give this a try.
Hi, I had the same issue. No matter what I did I could not get rid of the burn. Doctors were not sure what to advise to get rid of it either. What finally worked was Metamucil and/or psyllium husk.
It has been a lifesaver!
I mix half Metamucil and half psyllium husk as I don't like to take too much sugar or aspartame.
I was told that butt burn is due to excessive alkalinity in the stool after removal of the colon. The body either adjusts well or not over time. To treat the problem you must identify the problem. I don’t think it’s diet. It’s likely excessive alkalinity in the stool. Have a pH test done on the stool. Then you will have your answer and can treat accordingly. You gotta remove guessing and speculation from the equation, which is what I am hearing here. Let science tell you what’s going on.
I have problems when I eat nuts. The alkalinity is high followingvingestion of this food group. How would you resolve if there was a desire to continue and eat nuts outside of eliminating completely from diet?
You would take an alkalinity Test without eating nuts. I am not sure all of what is involved but I presume a special diet is given for that test. All I know is my surgeon told me butt burn is due to highly alkaline stool and that the Pouch would adjust alkalinity over time. Mine did. In other cases it doesn’t happen. If nuts increase alkalinity of your stool you can consume something to counteract the alkalinity increase. The trick is to find out what the problem is before addressing the problem.
The problem is acidity. The digestion is acid, and the acidity is normally neutralised in the colon, with calcium. Alcaline forming food (plant products) reduce acidity in the digestion, while animal products increase acidity. After take-down I could not cope with animal products at all and went back to the plant based diet. I ran four trials with animal products and found that the acidity with animal products took one to four days to kick in and took up to two weeks to come back to a level that I could cope with. The ph levels also vary for other reasons. So for us, alcaline forming food should be better, and for me they are. I also avoid acid fruit. I don't eat anything with a ph below six.
Have you tried Ilex cream? I'm having issues too (two years post take down) and I find that ilex cream is the only cream that really helps.
My butt burn is more like an itching/tingling/annoyance that lasts for about a half hour after I go to the bathroom, so it's not as bad as the initial butt burn I had after surgery, but it's still very upsetting to be so distracted by that part of my body for large parts of the day/night.
Even though ilex cream is just a barrier cream without zinc to help with healing, it seems to really help.
Also, I am surprised that very hot water helps you. My gynecologist told me that very hot water will make the nerves more sensitive and that I should keep my baths to warm water. I still use hot water, but not very hot. I also add epsom salt to the bath, which I feel helps. (Could be psychological. Who knows.)
The thing that makes the most difference for me is when the stool is more formed. Eating Metamucil fiber cookies has helped with that.
Where do you get Metamucil fiber cookies?
I get them at CVS or online at Amazon. Look up MetaMucil Fiber wafers. The new chocolate flavor is fabulous. The apple cinnamon is pretty good. They get stuck in your teeth, but are worth it!
I really wish I knew about them when I had my interim ostomy because I couldn't make myself drink the metamucil power.