Skip to main content

M,I my name is Steve haven’t posted since 2017 I have had my jpouch for 32 years was  now  was put in in 1992 I have noticed just had sigmoid done Nov of 2023 every year I get checked the exam revealed inflammation of the pouch  been switching  antibiotics now using  mesalamine suppositories 1000 mg I  know it’s a form of pouchitis been dealing with on off for about a year have appointment with gastro doctor this week there was scar tissue noticed in the scope had been under a lot of stress related issues but getting better my question if you have had the pouch in along time these are problems that just happen because your body ages and possible that the formation of the pouch changes replayed would be great👍

Original Post

Replies sorted oldest to newest

Hi,

My pouch is 24 years old. I’ve struggled with pouchitis on and off pretty much the entire time. Some worse than others. Have taken Cipro & Flagyl ( have a reaction to Flagyl and can’t take). Xifaxin worked really well. Then used Budesonide which was great! For awhile. Just started Entyvio last week. We’ll see.

I think my biggest problem now is a stricture at the pouch/rectum connection and overall narrowing of that area.

I wish you all the best

As far for sigmoid examination  did not have any problems with leakage of my pouch  but the Pouchitis didn’t help but the dilation part is all done through out patient from what I understand this procedure they put small balloon at tip of scope it will expand the pouch there will be a little discomfort but as far as I no  no leakage as I stated I am going to see my gastro doctor today I will as him about the leakage on handling the situation will stay incontact hang in there I have been dealing with this situation 30 years on and off

@PouchLogic posted:

CBD oil has been a saving grace for my inflammation. It's the only thing that has changed for me. I take 100mg every day. It's worth a shot if you want to try and can get it. My doctor said I always had mild inflammation and it caused issues but I started with CBD and my doctor was blown away by the difference.

Good luck!

Does 100mg a day not cost a fortune?

What brand are you using?

@PouchLogic posted:

CBD oil has been a saving grace for my inflammation. It's the only thing that has changed for me. I take 100mg every day. It's worth a shot if you want to try and can get it. My doctor said I always had mild inflammation and it caused issues but I started with CBD and my doctor was blown away by the difference.

Good luck!

I am also curious about what CBD oil you use!  I have tried CBD oil by itself but didn't notice a difference with the guts, however, when I try it mixed with THC, it seems more helpful. The THC noticeably slows the guts down and I like to take that at night because I sleep better when the guts are less active. I would love something for the waking hours because, well, THC ain't that great for the work day in the job I do.

The brand I use is Empire, it doesn't cost that much, I am in Canada though, it's about $80 for a month. THC definitely has a more noticeable gut slow down/calming effect. The effect I noticed from taking CBD is not being hospitalized since I started taking the high dose. It's mostly my GI checking my pouch and mentioning how there was no inflammation for the first time. There is less than 5mg THC in the CBD capsules I get.

@PouchLogic posted:

The brand I use is Empire, it doesn't cost that much, I am in Canada though, it's about $80 for a month.... There is less than 5mg THC in the CBD capsules I get.

Hi there!  Can you share a link to the Empire 100mg CBD capsules? I'm finding stuff that says "empire" but not sure if it's what you get. Thank you!! 

I did find one called "Emprise Canada".  That's the closest I came.

Last edited by Sara Marie
@PouchLogic posted:

I weigh around 150lbs right now, if I'm lucky I'll get back to 190 one day.

I have been trying 50mg of CBD each morning for about a week.  It uses MCT oil as a carrier like the Emprise brand.  I got it at a local CBD shop.  I have noticed that I am more energetic during the day and I have not had watery BMs all week.  Could be coincidence or placebo, of course.  I have not had a pouchoscopy yet...not ever!  I got the pouch in 2004.  I'm thinking this is the year.  One person on this site posted that she gets pouchitis every time she has a pouchoscopy.  Wonder if that happens to others?  I can imagine it would be irritating to the tissues.

@rcrossco_1 posted:

When I got scoped, I was actually debating with the consultant right before the procedure whether I should get it or not, as I said I felt generally alright.

Went and did it anyway to see the state of play, flipping pouchitis and inflammation of the cuff!

I wonder how many have inflammation and don't even realise.

I wonder about that too!  Did you end up getting treated for the pouchitis and inflammation, and did it make you feel better?

Hi I’m back after 4 months I recently posted back I do believe in March about my battle with pouchitis. It’s a real pain where you sit obviously, I’ve seen my Gastro doctor since then and he’s basically started me on entiva infusions was on Flagyl and have been onmesalamne 400mg 6 pills per day as I stated in the above from March of this year I had my jpouch out in in 1992 for ulcerated colitis =32 years in the back of my mine I have been thinking about talking to my Gaston doctor about removing the pouch for permanent ileostomy for three months back in the early 90s when I first had this pouch put in I had a bag on for about a month and a half while my insides were healing for the second surgery to connect the small intestines to my rectal area I’ve gone every year for sigmoid last November. I was diagnosed nothing uncommon with pouchitis inflammation of the pouch a little bit of bleeding but nothing that called for the pouch to be removed. It’s just a pain in the ass feeling throbbing down there and we’re just trying to do all the antibiotics that we can at this point. I’m willing to take any information on the removal of the pouch the pros and cons about it. It hasn’t reached the point of where it is useless, but it’s just a nuisance  your information would be much appreciated in this type of situation thanks 👍

Add Reply

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