Hey everyone!

I have a problem with my J-Pouch or rather my sphincter. It's hurting no matter what, if I sit, if I lay down, while having a BM. In waves it's getting worse and hurts more. 

The pain is internal and not external, it feels like the sphincter itself is hurting and not the pouch or some open wound through any cuts or else. It hurts when I contract the sphincter as well.

So, in general it is quite difficult to do anything right now as it hurts when I move wrong or when I sit on it etc. The pain, which is always there, is not that bad but definitely unpleasant. When one of this waves is coming it definitely hurts and is now only unpleasant but painful.

All in all my sphincter feels sore right now. I didn't have these problems before (at least by far not in this extent), so I don't really know what causes this and what I can do against it.  

Other than this problem I don't feel anything wrong, there is no blood etc.

Does anybody have an advise? I would be really happy and thankful!

 

Best regards,

ElSur

 

Original Post

I don't know if it is in spasm or if there is any other problem 

As I said, I've never had to deal with this before and therefore I'm quite clueless.

No, I haven't talked to my doctor yet. The thing is, the one I trust by far the most and has the most knowledge about all this stuff is an assistant medical director at a university clinic, so it's quite hard to get in touch with him. As I don't feel like this is something that can be diagnosed with a scope I don't know how to do it.

I was hoping to get some tips from people who have already had these kind of problems. Not to treat myself only by these advice given here but to have some idea already what could cause this and maybe then try to talk to a doctor. It's better to have some knowledge first.

I just had my takedown 3 weeks ago so this might be useless info to you because apparently everyone gets cramps post takedown. My sphincter is constantly going in and out of very uncomfortable spasms like you describe. So far I have just been breathing through them.

I take Ativan for anxiety sometimes and it seemed to help settle my cramps because that night I got a decent sleep. Looked on web Md and apparently it can be used for muscle spasms...? Idk if this is an option your doctor would consider, pretty addictive drug, but seemed to help my cramps.

Hi, Elsur.

Two weeks after my takedown, I had intense pain in the same area. I could not sit down without flinching, and if I stood up there was a flash of pain. This was accompanied by a sharp shooting pain that went straight up toward my navel, like an arrow into my j pouch. Also the in-and-out feeling of the sphincter. No blood or anything else. During my fifth week appointment, I asked my surgeon and he said it was very likely the tissues were inflamed, not pouchitis inflamed, but inflamed from surgery manipulation and frequent usage of the still sensitive sphincter muscles after so many weeks of an ostomy. He said it would calm down in the coming days and it did on its own. He did not give me any meds for it. It did calm down completely within a couple of weeks. It did not last long. I hope it will be the same for you. 

I consider myself very lucky as I had my j pouch surgeries in 1990 and have only had to see a specialist for help and advice twice in recent years. I have enjoyed pretty good health and I credit regular exercise (swimming and paddling) and smoking cannabis as the two major contributing factors.  I think the drug works very well for our illnesses as it is a powerful relaxant and also reduces pain and inflammation. I began using cannabis about 3 months after release from hospital and have used just about every day since. I have not had much feedback from these forums. Americans  are very lucky to be able to access the drug legally in so many of your States now. In Australia we are not so fortunate. Anyway I have posted as I think it will help the overall movement of food and fluid as it moves through our shortened digestive systems and relieve those cramps and spasms.

I am 6 months post take down . And recently I have started to feel painful spasms in my pouch when there is urge to go . N sometimes it's hard to sit up  . I had fallen very hard 4 days ago . And the discomfort started 2 days after that . I don't know if it's something related to the fall or something otherwise . But I am really scared .i had just moved to a new town so still have to find a doctor here . I contacted my Old doctor , they said if it was from fall then there should be more pain and spasms and it is unclear where it is coming from . I don't know what to do .Any suggestions . ?

I had a severe episode like this last week with pain on a level of 9. It came out of the blue, and would strike like a thunderbolt in the bum several times a day, lasting a week or so. Sometimes I thought I might faint. I researched on the Internet and found the following, which I think explains my temporary issue.

There are a number of terms for muscle-based pain in the rectal area, including levator ani syndrome, levator ani spasm syndrome, proctalgia fugax, chronic pelvic pain syndrome, proctodynia, coccygodynia, pelvic floor dysfunction and pelvic floor myalgia. The root cause of rectal spasm is tension in the pelvic muscles including the levator ani muscle. The levator ani is a broad, thin muscle inside the pelvis that tightens and relaxes to aid in a number of bodily functions, including bowel movements. Levator ani syndrome has been described as “a chronic charlie-horse up inside the pelvis”. Pelvic floor muscle spasms can also cause tightness, burning, and a sensation that the rectum is full. Sometimes the pelvic muscle spasm is caused by a trapped nerve or ligament, or some sort of adhesion or restriction in your pelvis. Levator ani pain tends to be constant and centered in (but not restricted to) the levator ani muscle, while proctalgia fugax pain is a short, stabbing pain in the rectum.

hi, i have been having severe pain in, lets say, but release valve, like im crapping razors, tge pain is mostlt when i go bit still hurts like level 8 even sitting, standing, etc, also left side pain, had pouchoscopy,  had j pouch surg w take down in 2000  have had fistula, c ton, and 7vral abscesses near cton was placed, my new gi said something along the way about having shrinkange is all i can think of 4 words right now  brain fog, like scarring i guess that is closing my, release valve, what r my options 4 "stretching or re opening my release valve? I 😰, sprry 4 the long post.,

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