Skip to main content

Hi guys.  I had the first two of my three j pouch surgeries in a February of 2015. Three weeks ago I finally got the takedown surgery done. Since having the surgery I have been going to the bathroom 20-30 times a day.  My j pouch almost always felt like it wasn't emptying properly and I was running to the bathroom every ten or fifteen minutes for hours. I tried Imodium but it did nothing for my frequency, only thickened things up slightly making it even harder for me to go. There was a lot of straining even when I didn't want to. Consequently I have developed severely painful prolapsed hemrhoids which I had banded in a day surgery a week ago.  They are still causing me constant and extreme pain and in addition I seem to have developed fissures as there is a small amount of blood when I blot. I am using barrier creams, sitz baths, lotimil, and have resorted to trying not to eat as the pain is just so excruciating. I am taking the maximum amount of painkillers I've been prescribed and it's barely touching the pain. Please help.  I am definitely out of my element here and don't know what to do to improve the situation. Any advice warmly welcomed. Thank you so much!!

Original Post

Replies sorted oldest to newest

I am very sorry you are in so much pain! I am going through similar things myself and it is no fun for sure. 

I know this is the "answer" for everything, but have you talked to your doctor about an infection, possibly pouchitis? I was positive that I didn't have that, but the difficultly emptying pouch, some blood, and extreme pain are all symptoms that I had too. I am starting antibiotics now and I think they are starting to help especially with the difficulty emptying my pouch. 

I do hope you can find some relief soon. 

Hello, Haidalyn.

I agree with Avery099. My reversal was in April and I remember my first two weeks were easy going then suddenly I had severe symptoms similar to yours: extreme frequency, pain in the backside, fissures, skin erosion, all of that. I didn't think I had pouchitis and tried to carry on. But it got so bad I told my doctor, and was given a prescription for Cipro. It worked so fast that by the third pill I was almost 95% better. Solid stool between 4 to 6 times a day. Call your doctor.

And you are wise to use the sitz bath for the fissures. Are you using water as hot as you can tolerate?  The heat will bring blood to the area to heal the insides. And your doctor can prescribe an ointment specially for fissures. I use plain old Zincofax and it heals the cuts within a few hours for me. I went through many weeks of ups and downs, and then around the third month things seemed to level out and got better. I hope you feel better soon. It is very, very hard the first few weeks as your small intestine tries to learn how to lead its new life for you. Be gentle to it. If you are afraid to eat, go slowly, try bananas, soft boiled egg, baked sweet potato, tofu, anything soft and easy to digest so that your new j pouch doesn't have to work so hard while it heals from pouchitis (if that is what your doctor determines). Eat like a child, or like someone without teeth! Good luck to you.

Thanks sooo much for responding Avery099 and Winterberry. I sincerely appreciate it. I see my surgeon on Tuesday and I am going to ask her if I could have pouchitis and see if she will try me on Cipro.  Winterberry it is comforting that you have had similar issues and that things finally improved. I've been in such non stop pain and misery I was very scared I'd made a huge mistake. Avery099 I hope you feel better soon too!! 

Wow. You guys were right on the money. I was in such bad shape I couldn't make it to Tuesday for my surgeons appointment so yesterday I went to a walk in clinic and begged the doctor to let me try Cipro on the off chance that I might be suffering from pouchitis. I've had three pills so far and notice a marked improvement in every area. Thanks for the advice. Im still going to my surgeon Tuesday and will follow up with her, but I'm glad I tried the Cipro sooner than later. 

Hello, Haidalyn. 

That is great news about the Cipro. When I had the same symptoms I was in denial because I couldn't believe I could have pouchitis only three weeks after reversal, and was in such desperation I couldn't think straight. Finally I described the symptoms over the phone to my doctor's nurse and was given a prescription for Cipro and Flagyl (but to take only one or the other) over the phone without an appointment because they recognized what it was. It worked immediately. Never again did I wait so long to ask for help. The ostomy nurse actually said it wasn't pouchitis and I believed her (what did I know?) and suffered needlessly before calling my doctor instead. Lesson learned: never suffer, ask for help, and keep asking, at the first sign because your body knows and is trying to tell you something. I hope the Cipro is the answer for you. 

Winterberry I just got back from my surgeon. She had scoped me two weeks ago and I just got the results today. Turns out I have cuffitis and pouchitis. She agreed with the Cipro for pouchitis but wanted to put me on mesalamine for cuffitis. Only problem is I'm allergic to mesalamine, asacol and all the class of 5 ASA drugs. So she has referred me to my gastroenterologist. I can't get in to him till January. My understanding is cuffitis can be tough to treat. I wonder what options I have other than mesalamine?

Yes and no. The fraction that's absorbed systematically will act just like our least favorite life-saving medication. OTOH, 1) a significantly lower dose may work because it's being applied directly to the inflamed area, and 2) budesonide tends to have less systemic absorption than other steroids.

This is a bit like steroid sprays for the nose or the lungs (I use both). Although the full range of awful steroid side-effects is possible, most people experience no such problems. 

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×