Chronic rectal tenesmus.

Hello @mmalone1804, While you wait for others who have some similar experience, I did a quick search of Connect and found a few members who have mentioned tenesmus in comments in other discussions that you might want to view - https://connect.mayoclinic.org/search/?search=tenesmus.

I found this information that might be helpful if you haven't already seen it.
-- Tenesmus: Symptoms, Causes, Treatments, and More:
https://www.healthline.com/health/tenesmus
Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

I suppose you don't have a rectocle? That can create such a sensation. If my IBS-C acts up (due to stress or eating the wrong foods) the "pouch" that is my rectocle can fill with stool and create such a sensation.
https://www.healthline.com/health/tenesmus#faq

Thank you so much for the additional information.
I’ve been working with a major teaching hospital in Northern California for 3 years, and feel like I’ve gotten excellent treatment. Fortunately, they haven’t given up on me, and continue to try novel treatments, in hopes of finding something helpful. So far, no luck.
I wish I would hear from someone with the same symptoms, or history of symptoms. I can’t be the only one…

Thank you for taking the time to respond. A rectocele has been ruled out.
I’m sorry you have that issue, yet it sounds like you know how to manage your symptoms. It’s so frustrating when you don’t know the cause.
Thank you again for your input.

Yes, although my feeling is prevalent minimally; and I had 6 inches of my bowel removed.

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.

I'm in the same boat. Have you found an answer? They call mine IBS.
Never had issues, hit with diarrhea, given all kinds of antibiotics, It does not respond to any elimination diet which i follow to the T. Does not respond to medications.
It takes 2 to 3 hours sitting on the toilet to get my bowels to empty, little by little.
Exhaustion, brain fog.
Finally going for updated colonoscopy, first endoscopy and then camera capsule on my insistence.
Stool tests ok, etc. What's your story? Does anything help or make it worse.
It's crazy. Have you applied for Mayo?

Hi, @p38, and welcome to Mayo Clinic Connect. Glad you got the clarification with the IBS diagnosis. Sorry to hear your condition is not responding to the elimination diets or medications. Sounds like you've got your hands full with needing to sit on the toilet 2-3 hours at a time along with the exhaustion and brain fog.

Good for you for insisting on what you feel is needed to get to the bottom of your symptoms.

When will you be doing the colonoscopy, endoscopy and then camera capsule?

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.

@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?