Hello, I've been witnessing this somewhat but not all the time, the food has a lot of acid in it, it causes it. I eat bananas before my meal it has help when I want to eat my favorites. I've been 2 months and 5 weeks in my take down, I've ask this question multiple times ,I just receive a suggestion Metamucil was said to help,just before you get5 ready to eat. I will be trying it. Lord knows the burning is real! Best of luck in your healing.keep me posted. Tks take care.

Has your dr considered a bile acid sequestrant (cholestyramine) to reduce acidity of your output?  

Willow, when you write that you’ve “tried every cream available” you make it harder for people (or at least harder for me) to try to help. I’m sure you’ve tried plenty, and I know it’s exhausting to go through them, but you cut off the possibility that you or your doctor have missed a useful one.

So, at the risk of wishing I hadn’t gotten involved, have you tried nifedipine, diltiazem, or nitroglycerin? These are *not* just treatment of the symptoms. I’m assuming that most of the burning is from the fissures you’ve said you have, and these can be very stubborn.

Hello thank you for all the input.

Not sure this will help, but I find spicy foods cause that for me (wings, salsa, pepperoni).  Definitely try to keep the frequency of BM's down.  When it happens to me, I shower, and then put either Neosporin there or Vaseline.  That usually helps soothe, and if there is a cut from going, then it helps heal it quicker (Neosporin).  Toilet paper will help from getting the stuff on your clothes.  I hope you feel better.

Thx. Tried all that stuff. I wish someone could figure out a cause.  Never bothered me before last year

So sorry this has become chronic for you.  It happens to me maybe once every two or three months.  I think I have it narrowed down to eggs.  Anyway...the pain is simply indescribable, but I'll try: it's like a breathing-paralyzing, wide-eyed, out-of-body experience, spinning-through-the-Milky-Way-seeing-stars type of pain.  The bidet helps all of the normal stuff except this. 

I recently found the one thing that has cut the pain to the point where I can breathe again:  5% lidocaine cream in the hemorrhoid department at Walgreen's.  Walgreen's brand.  Around $20 for the tube.  I'm sure any 5% lidocaine cream will help, but I've never found 5% anywhere else.  4% is prevalent, but not 5%.  I haven't inquired, but I suppose my GI doc could prescribe something even stronger if it's available.  Anyway...after bideting and drying, yes, it does need to be applied "inside".  But, it works.

Thanks. I actually just received lidocaine from Amazon, so we’ll see.  Interesting about eggs.  I’ve had my pouch for 11 years, and this issue has been chronic for over a year non stop.

Hello j pouchers, I'm doing so much better no more chronic burning, ever since I've been doing the meta mucil. I have my life back. Thanks to Sara for giving me detail for detail for it to work and for Scott reassuring me that there is no restriction with the meta mucil, I can eat whatever, and no burning with it.  I really pray and hope you can find a cure, I use to do banana before ever meal, now I have the Meta mucil it's much stronger and stop my burning.  Keep the faith and. Eat well.

I am so excited to be a newbie!  I had my j pouch surgery in 2002!  My UC was horrible!  I’m grateful to have my J pouch!  I do however have occasional burning and can’t figure out what causes it but it is very painful!  I am also one that frequents the bathroom at least 30 times a day!  One of the down sides but I was going more with the UC and I can control my pouch much better!  I am so glad I had the surgery and very lucky that I never had pouchitis!  I will definitely try the Metamucil!  Thank you everyone!

I had a video apptwith Dr Shen on Monday.  He thinks my burning is from a narrowing over time (11 years) and the fact that I have lost some muscle from some cells removed.  Anyway, he suggested EGC 400 mg green tea extract from “now”, Probiotic 10, and proshield plus skin protector.  All available on Amazon.  Also suggested hyperbaric oxygen treatments to heal the skin .  Very hard to get insurance to approve.  Of course, no carb, 

low fiber diet.  He’s really the absolute best.  I saw him twice in Cleveland.  

Thank you for the advice!  I will try anything at this point!  I am surprised with the low carb and low fiber diet!  I need to try that too!  I haven’t been able to figure out what foods really aggravate my pouch but it seems like almost everything lately!  Maybe it’s the carbs and fiber!  Very interesting!

@Willow posted:

I had a video apptwith Dr Shen on Monday.  He thinks my burning is from a narrowing over time (11 years) and the fact that I have lost some muscle from some cells removed.  Anyway, he suggested EGC 400 mg green tea extract from “now”, Probiotic 10, and proshield plus skin protector.  All available on Amazon.  Also suggested hyperbaric oxygen treatments to heal the skin .  Very hard to get insurance to approve.  Of course, no carb, 

low fiber diet.  He’s really the absolute best.  I saw him twice in Cleveland.  

 

 

 

 

Hi Im in Cleveland and I was with Shen for 12 years. I have had this intense burning but nothing on scope was ever found by him. He stated that since I have had a redo 5 years ago that the pouch is sewn closer to the anus and this burning is common. I too have tried every cream out there as well as lidocaine 5%, problem with that is it numbs and I have minor leakage issues and that makes it worse for me. He also suggested hyperbaric oxygen therapy for me as well but insurance wont cover and even if they do, tou have to go every day for hours at a time for months.... I work for a living and if I took that much time off I wouldn't have a job and then I wouldn't have insurance at all, so that is NOT an option for me.. I have however found some comfort in Metamucil wafers. I sjust haven't figured out the amount to eat and how much each time , cuz I have had constipation issues from them.  but it defenately helps the burn