Hi, my name is Cindi I had my entire colo removed and a j pouch in 1989,  I have very little rectum left and a stricture. I hv learned to live like this with a pretty positive attitude , however I hv to hv a flexsigmoidoscopy/dialation every 4-6 months plus crohns is present in the beginning of the small bowel. I would be interested in being a part of that study. If interested please contact me (903) 238-7426

I don't think that the people conducting these studies look at discussion boards. If you want to participate in a study, you need to contact them.

 

Jan

I was diagnosed with ulcerative Colitis in 1999 when I was 15 years old. By the time I was 17 I was having flares all the time. At that point in my life I was a marijuana user recreationally.  Then I realized when I was having a flare it was the only thing that would help with my nausea and the pain aside from being in the hospital and getting intravenous narcotics.. Now I'm 30 and I don't use marijuana anymore but I did have great success with it when I was in high school and in my early 20s. It may not work for everyone but it worked for me .

Marijuana definitely helps my pouchitis, but i can only use it sparingly as regular use gives me negative effects of mood swings, memory loss and a lack of drive.

Drone 3 I would love to know how it helps your pouchitis and how often you have to take it to see improvement. Thanks

Hi clouseau, just for context i'm not taking any western medicine, instead i use diet and several alternative methods to manage my pouchitis, one of these is marijuana, but it is not a magical cure by any means and has some serious negatives. So my results are largely dependant on my personal context. If i smoked a joint tonight my gut would be very happy tomorrow, everything will slow down and i would have less frequency and urgency, it would probably last 1 - 2 days at the most.

 

I only use marijuana once a month as it has major effects on the mind and half the battle of living with pouchitis is being strong mentally in order to deal with the hard times.

 

I hope this helps

-d

Hi there,

 

I have had a j-pouch for about a year now, after being diagnosed with FAP ~15 years ago. I appreciate the post from closeau, and what others have shared. I would like to share part of my journey and some additional info.  TL;DR at bottom

 

The last year has been rough, including many painful episodes of intense naseau and pouchitis that i feared were, and appeared to be, becoming chronic. Either that or SIBO, but either way it was extremely painful and depressing and was breaking me down, both physically and emotionally. At wits' end, I even considered having the pouch removed, among other things...

 

Doctors kept wanting to throw drugs at me, and after around 6 months of taking all different types of (some heavy) meds that seemed to just be masking symptoms and causing more problems, i had had enough.

 

I stopped all prescriptions and switched to a strictly cannabis regimen. I have self-medicated with cannabis for 20+ years, but now focus on more CBD (cannabidiol) based medicine. I have been nearly symptom free since; unfortunately it does not cure being a glutton...

 

What it does cure: CBD is primarily non-psychoactive and displays many medicinal properties (anti-inflammatory, anti-carcinogenic, anti-ischemic, anti-nauseau, etc etc), without the negative side effects typically associated with THC dominant cannabis/medicine, as mentioned by some in this thread (memory loss, mood swings, etc).

 

While THC may not be for everyone (studies have shown that high levels of THC may excite the same neuronal pathways associated with bipolar disorder, important to consider if you are having strong/frequent mood swings), CBD based medications have proven safe and effective for patients of all ages and diverse medical needs.

 

Here are some links to get started:

https://en.wikipedia.org/wiki/Cannabidiol       (general info and links)

http://www.projectcbd.org/colitis-crohns-disease     (links to medical journal articles)     

 

TL;DR -  Pouchitis sucks, strong cannabis/THC isn't for everyone. CBD (cannabidiol) might be exactly what you're looking for; its working for me (and many others)!

 

Feel free to message or reply here with any questions or requests for links etc!

 

Thanks, hope this helps,

 

Lance

I'm in the same boat as Lance 619. Except I had my 1st Jpouch surgery 12 years ago when I was 20. I did the handfuls of meds everyday for 5 years before I ended up needing a emergency colonectomy. I did everything the doctors wanted me to do and they still couldn't and can't help me. I occasionally try a new med thats working great for others. But it's never successful for me. So I have chose to manage chronic pouchitis with diet and a healthy knowledge of cannabis strains. Its gotten me farther than the docs have been able too. And they admit it. Unfortunately I'm now dealing with a painful kidney mass on one kidney and another functioning at around 50%. And docs still uncertain of what avenues to take due to the massive amounts of scar tissue and adhesions I've had over the years. The point of that was sometimes everything keeps falling apart. And if you need to eat a cookie to get through it. Well then eat a cookie and laugh about it

 

Good luck everyone

does marijuana just help with the symptoms of pouchitis or does it actually heal the inflammation too?

marijuana will help with the symptoms in general; medicine with cannabidiol (CBD) will actually help heal and protect against inflammation.

 

here's an article from nih about CBD as a novel anti-inflammatory drug: 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2828614/

 

sorry for late reply, was on a road trip for a couple months