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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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

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.

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.  

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