Sorry about spelling not to good but hope you understood

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

The minor surgery to get that stricture taken care of is easy enough. I had it done a few times. You wouldnt want to be awake for it thats for sure, but it did help.

I had a scope recently, and the ***** didn't use any numbing agent when violating me with the camera, and my god that was painful.

Hi and thanks for the information I had sigmoid done last November  was awake don’t like being put under  I take it that the balloon procedure is similar dialation of the structure

rcrossco_1….

My Dr has mentioned a dilation. I’m worried that I won’t have as much control. Did you have any problems with leakage afterwards?

Yikes

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

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!

@Mrs P posted:

rcrossco_1….

My Dr has mentioned a dilation. I’m worried that I won’t have as much control. Did you have any problems with leakage afterwards?

Yikes

Yeah its a little different, but to be honest it probably slowly restricts again over time.

I wouldn't worry, if I had noticed anything really bad I would have remembered it was a very long time ago now!

Thank you rcrossco_1

@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.

You are right, I remembered the name incorrectly. Sometimes I have ordered Empire due to availability. These ones are cheaper than I mentioned but here's a link

https://mendocannabis.ca/en/pr...30x100mg-by-emprise/

@PouchLogic posted:

You are right, I remembered the name incorrectly. Sometimes I have ordered Empire due to availability. These ones are cheaper than I mentioned but here's a link

https://mendocannabis.ca/en/pr...30x100mg-by-emprise/

Thanks!  I will check them out!

I would like to order from them but I don't seem to be able to create an account.

You need to be Canadian and have a doctor's referral as far as I know.

Oh darn.  Everything in the US seems kinda unregulated, weird, and really expensive! 

I can get CBD caps here but they're way overpriced for the 100mg dose.

Some of the companies here are over priced as well. Hopefully you can shop around and find something that works for you. Try 50mg if you can find them at a reasonable price, 100mg was what I was recommended.

@PouchLogic posted:

Some of the companies here are over priced as well. Hopefully you can shop around and find something that works for you. Try 50mg if you can find them at a reasonable price, 100mg was what I was recommended.

That's a good point.  What is your weight if you don't mind me asking?  I'm about 110lb/50kg, so if you're much bigger than me a smaller dose might be more appropriate.

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

100mg is super high.

Modern medicine, for all it's worth, currently recommends an average adult maximum is about 70mg daily.

I ordered up some capsules from CBD Brothers here in the UK, can simply double up to 32mg if I need to, will start off at the lower end of the scale.

I wish the US would federally legalized marijuana like normal countries.  Squeezing the cbd/thc from hemp is expensive and involves creepy chemicals.  The US is so stupid in so many ways.

@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.

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.

@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 thanks for the information I just started on the entiva  infusion treatment have follow up with doctor coming up going to ent ion c oil and see what he has to say right now it feels like I’m married to the toilet 😡

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 👍