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!