Okay it has a name!! Its called non relaxing pelvic floor dysfunction in IPAA. Does anyone else have knowledge or experience with this and patient to patient--what has helped you?

Thanks

http://www.sciencedirect.com/s...ii/S1542356517302550

What are the symptoms? Is it an increase in urgency?

It feels like something is trying to get out on its own. Cramping for sure and urgency but there is nothing in there to come out really -it's not based on the amount in the pouch but the nerves 

Interesting currently dealing with my worse case of pouchittis and finally feel much better except at night have something similar to this.

It's responded to rectiv ( nitroglycerin) and lidocaine as well as oral Valium. I would see if those work. The Rectiv is crazy expensive but it can also be compounded for less $$. Some doctors like the compounded Valium suppository 

Does it feel like a rectal Charley Horse? That's how it started with me

I started Botox injections and have seen some improvement.  Maybe you’re familiar?, but they can be administered every 3 months.  We’ve had to up the dosage each time because I’ve yet to make It all the way to the 3 month mark without symptoms recurring; so far I’ve had 3 rounds.

I (live in NY and) also consulted a separate doctor regarding a combination of CBD use as well as THC in hopes of addressing the inflammation and also the rectal pain/pressure.  I’m hoping the combination works as my only other options after years of steroid use, antibiotics, etc. would be some of the biologics or, as a very last resort, getting rid of the pouch altogether.

Do you get the Botox from a  surgeon?

Yes, my surgeon who removed my colon and created my j-pouch.

And when we discussed the CBD/THC combination he mentioned that another patient of his was approved because of his chronic back pain and it’s actually worked wonders for his pouchitis.  

Hello to the group,

I'm a first time poster, had my J-Pouch surgeries in 2000 and I've experienced a lot of the standard pouch problems that are noted in this thread as well as others.  6-12 bm's per day, lots of gas, gas often is the reason I need to have a BM as opposed to pouch being full.  I often have low grade pouchitis and have treated with flagyl, cipro and VSl probiotics.  I'm fortunate in general, I have a wonderful life, over the past 20 years I have been able to exercise daily, engage in extreme sports of rock climbing and trail running, I have a wonderful wife and terrific career.  It hasn't been easy as you all know and each of us figures out how to work around the unique challenges of our situations.  My heart and admiration go out to all of you.  

Since June of last year I have been struggling with intermittent constipation which NEVER occurred before.  I was straining to pass stool, to the point where I thought I might pass out, then the rectal cramping, pain continued difficulties with bowel movements got worse.  I was unable to jog because the up and down motion caused way too much pain.  They believe I have levator ani syndrome also known as non-relaxing pelvic floor dysfunction previously mentioned in this thread.  I've had multiple PT sessions, they insert fingers and try to massage the levator muscle and dilate my cuff.  They also insert a bio-feedback device and provide electric stimulation.  I believe it did help to a degree, I recently moved and have not gone in for PT for 2 months or more.  A recent spasm has cropped up and it's the worst yet.  I'm unable to have any BM or even pass gas if in seated position.  I now have to lie on floor of shower with legs up or laying on one side and phsyically massage gas/stool out but it only provides minimal relief.

Has anyone on this thread engaged in a long-term treatment that has provided success and reduced or eliminated the muscle spasms causing this situation?  I have also been on immodium for past 20 years and I'm wondering if that could be exacerbating the situation.   Any guidance or discussion would be welcomed.  I'm also happy to share my experiences or any information about my life with others.

Thank you all in advance!

-Eric 

You need a pelvic floor physical therapist who is knowledgeable with j pouches. I highly recommend nitroglycerin to reduce the rectal pressure. I no longer have this issue thanks to these interventions 

Thank you, I have been prescribed diltiazem ointment which I believe is very similar to nitro ointment yet it doesn't appear to be providing any relief.  Maybe I'm not applying enough or not getting it deep enough.  Were you using suppository or ointment?  I apologize for so many questions.

Thank you

No apologies Its very important to get relief.

I am not sure what that is but I can tell you RECTIV provided immediate relief. I can also say that I used lidocaine cream as well. I think the rectiv.com website might have a coupon. 

For me it was the rectal pressure and straining is the worst thing you can do. It can also be an anal fissure which feels like shards of glass passing through. Its unlikely that its constipation just inability to empty the pouch due to the nerves and the muscles not communicating.

Thank you. I'll continue to do more research, speak to my doctor and update the thread. You're assistance has been so kind, much appreciated

Eric, if you’re still taking the Imodium this is probably a good time to discontinue it for at least a week, to see how things go. I’d also suggest starting the search for a new physical therapist, since that seemed to help you, and stopping may have allowed things to worsen. Good luck!