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I need your help, advice, ideas, options, or any thoughts. I would be eternally grateful for anything you can offer. I’m a 61 year-old man. I had the third and final surgery of a Total Proctocolectomy with J-Pouch Reconstruction for Ulcerative Colitis on December 7th, 2020. Five days prior to that surgery, the doctors realized I had a narrowing at the bottom of the J-Pouch, so I had a dilation procedure. The surgeon went ahead with the take-down surgery, and I was then hospitalized from January 1st to the 10th, 2021, with a blockage. During that hospital stay, the dilation procedure was repeated, and since then, I have been having approximately 15-30 bowel movements a day. Every BM feels like I’m pushing out shattered glass and sometimes there’s no stool, just horribly painful gas. Some other “j-pouch veterans” told me this is referred to as “butt burn”. I’ve tried so may different creams and ointments that the doctors are telling me to just use one or two, because I may be doing more damage than good. I’ve tried Aquaphor, A+D, Preparation H Cooling Gel, Preparation H with Lidocaine, Recticare, Resinol, Balmex, Desitin, Calmoseptine, plus a couple that I’m forgetting, and most recently a special ointment that had to be custom made at a “compounding pharmacy.” None of these have helped much, but so far Calmoseptine seems to work the best. The problem is that, of course, usually within 10 minutes of getting off of the toilet, I need to get back on, and each time I have to repeat the whole process of cleaning and reapplying the ointment, which is particularly difficult when I’m having these episodes for 3-4 hours in the middle of the night. I now keep a stool in front of the toilet to lean on, because I get dizzy and sometimes lose, or get close to losing, consciousness during particularly bad episodes, or because I’m too tired and/or weak to immediately get up and get back into bed. Also, I’ve started keeping a cooler of small ice packs next to my bed, so I can apply them to the affected area during those particularly bad episodes, and I bought a bidet attachment that I was able to install under my toilet seat. That helps a little when I’m on the toilet by soothing the area and washing away most of the stool limiting the amount of wiping with dry toilet paper, but it’s temporary relief. This constant and horrendously painful “butt burn” is affecting my sleep, my weight, and my emotional health. I can rarely sleep more 1-2 hours at a time and it’s restless sleep. My weight was 178 before my first surgery. It was 130 before my last surgery, and it’s now 114.

Does anyone have any ideas of any treatments that I might be missing? Has anyone ever tried CBD cream? Has anyone ever tried Botox injections to treat the area? Any ideas what might be causing this horrible gas. I eat a very bland diet. I avoid acidic, gas-producing, spicy, and hard to digest foods. I also avoid most vegetables. It feels like there’s bubbles of gas “popping” into my rectum, and they are horribly painful until I can push them out. I’m also taking a long list of vitamins and supplements, and I try to stay hydrated. I take Oxycodone, Acetaminophen, and medical marijuana for the pain. I’m trying to cut back on the Oxycodone, but the acetaminophen doesn’t help much and the marijuana makes it difficult to function. Help!

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The broken glass description is more commonly associated with anal fissures than the skin irritation of “butt burn.” If in fact anal fissures are the problem (and an aggressive dilation could possibly have caused them) then the treatments tend to be sitz baths, topical treatment with dltiazem, nifedipine, or nitroglycerin cream, Botox injections in stubborn cases, and patience. The stool texture is best if soft but not liquid - fiber consumption (and the oxycodone) will influence this.

None of this directly explains your gas. I can’t tell if it’s a great quantity or just exceptionally painful (or both). Those of us who have had to give up on-the-go farting do have more gas on the toilet than we used to. Is it possible that you’re swallowing a lot of air during your painful episodes? Carbonated beverages, perhaps? Maybe one of those supplements does more than you were expecting? Dramatic gas is sometimes caused by small intestinal bacterial overgrowth (SIBO), generally treated with an antibiotic.

Thanks very much Lauren and Scott for taking the time to respond. You gave me several things to think about. I do take Loperamide every day on a regular basis and I sometimes use wipes, but I was told to be careful that the wipes don't contain any alcohol or chemicals. Scott, you're right about the description being associated with anal fissures. I don't know for sure if I have anal fissures or not. The doctors I've seen so far are reluctant to look inside because I'm so raw and irritated on the outside. and I haven't seen any blood yet. I assume that I'd see some blood if I had anal fissures. Is that correct? I never thought about the dilation possibly causing the anal fissures, but that makes a lot of sense. I'm going to try sitz baths. Do they work differently with a different effect than the bidet attachment? I guess the bidet attachment is only cleaning the outside, but what can get inside to the fissures if they exist? I'm confused about the gas also. It is both extremely painful and a great quantity. I don't drink any carbonated beverages and I stay away from gas-producing foods. I could be swallowing a lot of air. When I'm in severe pain (I call it "having an episode", I'm gasping and screaming (or at least moaning) a lot. I'm going to ask a doctor about the "SIBO" that you mentioned. Is there a test for that or should I just ask to be put on an antibiotic?

Your description sounds much more severe than the usual "butt burn" people experience. I'm 50 and have had my pouch since I was 23 so I have had some of those agonizing experiences, but never repeatedly, for such a duration. I'm concerned this is way more than something you deal with on your own. Are you reluctant to call your doctor and ask for more help? Feeling like you're going to pass out is very dangerous - especially in the night when no one else is up to hear you fall over.

Your weight loss is also severe so please don't be afraid to be a nuisance to your doc and don't be one of those guys who doesn't go to the doc until it is catastrophic!

Sorry I have no direct advice on this except to say it should not feel the way you are describing.

@pzzzzs posted:

Thanks very much Lauren and Scott for taking the time to respond. You gave me several things to think about. I do take Loperamide every day on a regular basis and I sometimes use wipes, but I was told to be careful that the wipes don't contain any alcohol or chemicals. Scott, you're right about the description being associated with anal fissures. I don't know for sure if I have anal fissures or not. The doctors I've seen so far are reluctant to look inside because I'm so raw and irritated on the outside. and I haven't seen any blood yet. I assume that I'd see some blood if I had anal fissures. Is that correct? I never thought about the dilation possibly causing the anal fissures, but that makes a lot of sense. I'm going to try sitz baths. Do they work differently with a different effect than the bidet attachment? I guess the bidet attachment is only cleaning the outside, but what can get inside to the fissures if they exist? I'm confused about the gas also. It is both extremely painful and a great quantity. I don't drink any carbonated beverages and I stay away from gas-producing foods. I could be swallowing a lot of air. When I'm in severe pain (I call it "having an episode", I'm gasping and screaming (or at least moaning) a lot. I'm going to ask a doctor about the "SIBO" that you mentioned. Is there a test for that or should I just ask to be put on an antibiotic?

Your welcome, hope things get better

Anal fissures tend to hurt more than they bleed. The raw outside skin you describe could just be from having 15-30 BMs/day. I think these are probably two separate problems, but it will be hard to get resolution of either one unless you can get the frequency of your trips to the toilet reduced. Your pouch is fairly new - were you given any instructions about trying to delay bathroom trips, gradually holding in a more reasonable quantity of output? This is often called “stretching the pouch.” It should be done gently and gradually, but if your pouch isn’t irritated you should be able to accomplish this.

For the severe external irritation some folks here swear by Ilex Barrier Cream. I’m guessing the one you have from the compounding pharmacy *might* be for internal fissures, but you didn’t say what’s in it. If it’s not for fissures you could ask your doctor about Rectiv. You might need some topical lidocaine applied gradually (along with some patience) to be able to tolerate applying the Rectiv where it needs to go.

You might get some benefit from psyllium fiber, which could help normalize your stool consistency - you’re aiming for pudding/applesauce consistency. It doesn’t sound like the loperamide is doing you much good - it might be worth trying it just at bedtime, to get more sleep.

I hope there are at least one or two ideas here that give you some relief. Don’t change too many things at once or you’ll confuse the heck out of yourself.

Last edited by Scott F

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