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hello,

i have been having a new symptom --intermittent rectal spasms . These seems to follow no noticeable pattern but are quite uncomfortable.

i am wondering if anyone else suffers from these? I am trying nifedipine compounded with lidocaine but nothing has worked so far--nitroglycerin cream or belladonna/opium suppositories. It feels like a Charlie horse cramp in my rectum. Any ideas? I just had a balloon dilation and a pouchoscopy and other than ulcers and a small structure I'm good. Any ideas? 

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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.

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 

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.

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