Chronic rectal tenesmus.

Posted by mmalone1804 @mmalone1804, Aug 24, 2024

I have a chronic debilitating sensation that I need to move my bowels. They cannot find what’s causing this, and there is no treatment for the symptoms. Is there anyone else out there with these symptoms?

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Profile picture for Lisa Lucier, Moderator @lisalucier

@p38 - clarifying that you do not personally have a GI condition and that the "he" you are talking about in your post is your husband? partner? friend?

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Correct.
Also, the messages were supposed to be a reply to mmalone1804 who started the thread. I'm not sure if I replied to them or just added a comment in the thread/ post.
Can you move my post so it replies to them? If they have gotten any relief from the sensation, it would be so welcomed.
I also didn't realize it was not them who asked about tests.
It was you, as a mediator , so I explained way to much to the wrong person and can't delete it.

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Profile picture for p38 @p38

Correct.
Also, the messages were supposed to be a reply to mmalone1804 who started the thread. I'm not sure if I replied to them or just added a comment in the thread/ post.
Can you move my post so it replies to them? If they have gotten any relief from the sensation, it would be so welcomed.
I also didn't realize it was not them who asked about tests.
It was you, as a mediator , so I explained way to much to the wrong person and can't delete it.

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Hi @p38, there's no need to move your post. All replies and comments can be seen by members following this discussion including @mmalone1804. To ensure a specific person sees your message, you can add their username with the @ symbol.

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i too, suffer from this all day everyday and it is so debilitating and isolating..

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It is a symptom of my opiate induced bowel
Dysfunction.

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Yes, I too suffer from this very debilitating symptom. The bentyl they give me for it does nothing except give me horrible dry mouth. I am a retired nurse and I have researched this for weeks on end and I have developed opioid induced bowel dysfunction of which rectal Tenesmus is my worst. I am trying desperately to get off the oxycodone but it's not easy and for some reason the tenesmus is worse.

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Profile picture for ford323 @ford323

I have had tenesmus for a couple of years. They gave me a drug called bentyl which I find to be no help for tenesmus.

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Me too. I find the bentyl to be of no help

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Profile picture for p38 @p38

They still need to be scheduled . He just had one consultation at MD research school hospital. It takes months to get an appointment.
They had a cancelation so we grabbed it. GI consultation with them was last week.

He had colonoscopy at regular GI 2 year ago and they said they saw no inflammation. So they call it ibs. We've been after them for an endoscopy and capsule camera for 9 months. We said I'd pay for the camera capsule if insurance would not pay.
The Dr. Thought he already had an endoscopy. Finally she understood he had not so the flip and camera was ordered.
Then a cancelation happened at research hospital and he'd rather them do it since they will also take samples.
History.
Everything hit at once, bloating, diarrhea, narcolepsy, exhaustion and brain fog.
Ibs had not responded to any food elimination diet. No response to medication. The tenesmus is overwhelming! The worst day was 9 hours on the toilet. Most are 6 hours. Day and night!
He's doing all kinds of supplements.
The brain fog had him like a zombie. I suggested a low histamine and fructose diet in addition to my other so he ate about 6 different foods. He said it took a week to be gone. I saw a difference in 1.5 days.
He had allergists check mast cell actiation ,which came back in speck but if you read up on that it does not mean you don't have it. Histamine clearly made a difference. Not being able to think or respond was worse than the gi stuff.
He can't work nor drive. His life has been going from bed to toilet for over2 years.
He never had digestive issues before nor does it run in his family. Yes, we read people get ibs after a diaherra but what about all the other stuff?
Heck if Mayo or any research wants to him as a patient. Lmk .
We'd love a place that can put all the pieces together.
For now , he's waiting to schedule the flip, then camera and he's been scheduled to check for POTS.
Oh yeah. And his blood pressure is now low.
I hope this info helps someone who may be going thru the same. I pray no one is.

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@p38 Did you find any answers/relief?

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Profile picture for ford323 @ford323

Yes, I too suffer from this very debilitating symptom. The bentyl they give me for it does nothing except give me horrible dry mouth. I am a retired nurse and I have researched this for weeks on end and I have developed opioid induced bowel dysfunction of which rectal Tenesmus is my worst. I am trying desperately to get off the oxycodone but it's not easy and for some reason the tenesmus is worse.

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@ford323 Have you tried using a different opioid? I was on Norco for quite a long time and never had this issue. But, when I switched to oxycodone, it started. It was gradual so I didn’t think it was the cause. But, now I’m wondering, and will be talking to my pm doctor about it.

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