Hi everyone. I’m going to try to keep this as short as possible. I would truly appreciate any help or insight. Brief history: I had an IPAA in 2009 for Ulcerative Colitis, with a takedown two months later. Since then, I have had the occasional blockage (1-2 times per year) and I haven’t had pouchitis since 2014. I eat foods high in soluble fibers, lean protein, and healthy fats. I avoid roughage, spicy food, and have never ever had an issue with dairy. 

Occasionally, if I eat something too rough/spicy, I will get painful burning during defecation and throbbing/spastic itching afterward. No abdominal cramping whatsoever. Purely localized to my rectum. I may stabilize once the irritating food clears my system, or I may end up suffering for days to weeks, cycling between burning diarrhea in the afternoon, and normal stools in the morning. (I assume it’s better in the morning because my system has had time to rest, with minimal bathroom visits).

In mid-June of this year, I was in the late stages of my pregnancy. I was hit with one of those bowel issues HARD. Side note, it was around this time that I was diagnosed with obstetric cholestasis, and put on a strong dose of Ursodiol. The bowel symtoms started a few days later, but I’m not sure they are related because as I’ve said, I’ve had this issue before. I was only on the meds for a week. I delivered my baby via C section in early July.  

After the delivery, my bowel movements were very watery, so the symptoms seemed to disappear. As my stool started to firm up again, my symptoms returned. Burning stool, intense throbbing and spastic itching afterward. Stool appeared yellow-ish and soft. It has gotten slightly better and worse over the past 4 months, but the condition is relentless. My body WILL NOT seem to heal. It’s bizarre because by morning, everything seems to be normal. My rectum will feel quite healed. But then it returns with a vengeance in the afternoon.

I saw my GP and a rectal surgeon this week. They both confirmed that I do not have fissures. My GP prescribed Proctodan HC suppositories. It has definitely helped, but my issue is still lingering. I have a scope in 2 weeks.

I am now eating nothing but chicken, fish, white rice and bananas. I’m afraid to eat anything else. I’ve done sitz baths, and coconut oil applications. Rough foods make it worse, but nothing makes it better. This does not feel anything like pouchitis. I have done extensive research on the connection between nursing and poor wound healing, postpartum colitis flare-ups, you name it. I’m trying to make any possible connection but I’ve come up with nothing. It feels like there are a million tiny cuts in my rectum that will not heal. Based on the colour of my stool (yellow) it seems that food is processing things too quickly. This would explain the burning sensation (stomach and bile acids still present). But the truth is, the frequency of my bowel movements has been quite good (5 times a day) since taking the suppositories, so it doesn’t even seem at this point like the food is flying through me. My body just won’t heal!!! 

Please help!!!! Thank you. 

Original Post

Have you stopped the ursodiol? Tried a bidet?

In any case, I’d expect the proctodan  HC to help a lot, hopefully permanently.

Scott F posted:

Have you stopped the ursodiol? Tried a bidet?

In any case, I’d expect the proctodan  HC to help a lot, hopefully permanently.

Hey Scott! Thanks for your reply. I only took the ursodiol for one week at the end of June. I asked my doc if I could go off of it because it can cause stomach upset. my stomach never actually hurt through all of this. It was only ever rectal. But I figured it served it’s purpose and if I didn’t need to continue it, why bother. 

I am on day 6 of the Proctodan HC and there’s no question it’s helping. The post-bowel movement throbbing is gone. I’m having 5-6 BMs a day as opposed to 10-15. However, I still have a burning sensation when food makes its way down to my rectum, and it’s quite itchy afterward. And it feels like the meds made a big difference in the first 24 hours....but it hasn’t continued to improve. It just sort of plateaued. 

Itchiness is sometimes a sign of a fungal infection, which (if you have it) can drive you crazy. Sometimes, though, itchiness is just a variation of pain. If things tend to be damp there (e.g. if you have some leakage) and the itching is external then you could try a topical anti fungal.

You may see some more improvement from the Proctodan - I’d give it more time.

Last edited by Scott F

To Anyone who might read this in the future, I just wanted to give a bit of an update.

Over the past 5 months, I took VSL#3 a couple times. I was pretty convinced i didn’t have pouchitis, so I wasn’t too diligent. 
3 weeks ago I did a stool sample which showed high levels of calprotectin in my stool, indicating inflammation in my system.
A couple days later, I started the steroid suppositories which were helpful for a bit, but after 10 days, didn’t seem to make things much better.
1 week ago I said screw it, and took the max dose of visbiome (at this point I had read about the whole dispute and decided to switch) (4 packets per day) and instantly started feeling better. 5 days later, I had a pouchoscopy, and they found nothing. The doctor told me it was one of the healthiest pouches he’d ever seen. I’m feeling significantly better and even though we didn’t get to actually see what was wrong, my response to the probiotics makes me feel pretty certain it was pouchitis. 
I have dropped down to 2 packets a day, and in a week I will drop to 1. I’m never going off it again. 

Add Reply

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