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Tenesmus

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Ulcerative Colitis
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Posted 7/9/2023 9:11 PM (GMT 0)
Hi everyone! I have not been on here in a really long time-I hope everyone is doing well. I’ve been on entyvio for a while now and it’s been working great. I do suffer from constipation but I’m used to it I guess and my normal is once a week (which isn’t normal).
Back in January after vacation I developed tenesmus. My doctor said it’s due to traveling and the body needs time to reset. Went to the bathroom so many times all different types of stool each time but it Resolved after a few weeks. Bowels were not normal then but then it kind of normalized. He did flex sig nothing on there. I forgot about it.
A few months later, I traveled again, came back, same story. This time it never resolved. I found a new GI and at that point stool was pencil or just pieces of nothing. He put me on prednisone which helped stool was normal and then did a flex sig which showed nothing. He said this Is not your colitis (weird though because he did the flex sig while on prednisone so wouldn’t it have cleared it up?) anyway I’ve been suffering on and off. Tenesmus is 24/7. Does not go away. I’m always bloated run to the bathroom all the time never done going. The poop is mostly normal looking drop looser. There thank Gd hasn’t been blood or anything else. In midst of all this I saw a proctologist who looked inside too and said I have rectal dyssynergia. So I’m doing pelvic floor therapy. But I need answers because I can’t handle feeling this tenesmus anymore. Could this really all be pelvic floor? I don’t know what else to do. I just want to go back to normal. I’m about to find a fourth GI. Last colonoscopy was a year ago and it was normal. Any advice is greatly appreciated!

Thank you all!
Posted 7/9/2023 10:32 PM (GMT 0)
I hate when they do scopes when I'm on pred. Like, why waste my time, now it looks normal and you don't believe how sick I was off the pred! Sorry, no advice, but a 4th GI consult isn't a bad idea.
Posted 7/10/2023 1:47 AM (GMT 0)
Yep, tenesmus can be Hell. But if you have constipation most of the time something must be irritating your rectum. What is your daily diet like? Do you drink enough water to stay well-hydrated? Lack of soluble fiber in your diet could also cause constipation. If Entyvio is really keeping you in remission from UC, then constipation must be the issue you need to resolve to get rid of tenesmus. If going on Pred for a while eliminated the tenesmus, then it would seem that Entyvio doesn't keep you totally in UC remission. Pelvic floor exercises won't hurt, but their real purpose is to strengthen specific muscles affecting bladder and/or bowel control. (i.e., incontinence issues) I can understand why you feel dissatisfied with the recent doctors' advice. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 7/10/2023 2:10 AM (GMT 0)
I drink so much water and increased my fiber so much. I was so convinced I was flailing but both scopes show otherwise. Constipation would cause tenesmus? And if it really is constipation my stool should be hard and they are soft. I don’t know I’m at a loss. Just 24/7 feeling of needing to poop for months now. No good bowel movement in a long time. Have travel plans this summer but I’m not going like this. It’s very depressing and frustrating to say the least. They say it’s because I don’t have the strength to push out stool so that’s why I’m doing therapy. I don’t know anymore
Posted 7/10/2023 3:16 AM (GMT 0)
I’ve also been prone to constipation too. But now I pretty much am able to have a BM everyday. Do you take a fiber supplement? I always felt like fiber rich food or water didn’t have much effect on me. I have to wait for that muscle movement or urge to have a BM. If I just sit on the stool and try to go it will not happen and even seems to make it worse.

Metamucil has been the game changer for me. I take a heaping tablespoon at night. Then those days that doesn’t even work I take miralax or a stool softener

Have you tried dicyclomine for the tenesmus? That really works for me. I thought someone here said once that using it to calm the spasms actually helps your bowel relax and have a BM? But I don’t know if I got that right or not. Dicyclomine might be something to ask your dr about though.
Posted 7/10/2023 11:19 AM (GMT 0)
I actually have Metamucil pill form and fiber in powder form. It’s just not the same bowel movements as it used to be. Will tenesmus ever go away? I wake up with it, go to sleep with it. It’s so horrible and debilitating. I never had it for this long.
Posted 7/11/2023 10:44 AM (GMT 0)
My tenesmus was HORRIBLE with this last flare of mine. Probably my worst symptom. My butthole was painfully sore as well so the urge to push really irritated me. I got bidets installed in my toilets and stopped rubbing my butt at all. Just cleaned with the bidet and gently patted dry. I asked for rectal meds from my doctor and in the hospital and nobody would prescribe any. They said 30x a day pooping was too severe and they wouldn't have time to work inside. It was eventually the high dose iv steroids that took the tenesmus away but only after a week of being on it. It has been gone since end of April when I got discharged. I am only on Rinvoq now.
Posted 7/12/2023 7:33 PM (GMT 0)
I had tenesmus with this current flare and don’t know/remember if I’ve experienced it before? Usually my Crohn’s flares are pain throughout my abdomen and lots of diarrhea and all the other tmi stuff but the last 2 flares have been different - more Proctitis symptoms with narrowed descending colon and inflammation mainly in the rectum, and instead of a ton of diarrhea I’ve had constipation stool alternating with mucous,etc. So when I tell my dr I’m running to the bathroom 20 times a day most of them are just the gas and mucous/small bits. I was taking canasa suppositories but idk if they helped, the flare got worse. I started taking senna tea at night and that helped, just to get the stool out felt like a bit of relief since my body could just eliminate it and it felt like there was less “signaling” that I had to go.
I’m sorry you are dealing with this, it truly is so all-encompassing and exhausting. I’m on prednisone now, which is the only thing stopping the flare so I def sympathize with you
Posted 7/14/2023 1:56 AM (GMT 0)
Tenesmus is awful. I don't think constipation causes it, at least not in my experience. I would try to seek another opinion if you can.
Posted 7/17/2023 10:34 AM (GMT 0)
Iam sorry you are feeling so poorly. This situation can definitely impact your quality of life.
My son sometimes gets constipated. He experiences something similar to what you mentioned. He keeps going to the bathroom and says very little comes out. Something similar also happened to my father-in-law also when he was constipated. So yeh it appears that constipation can cause tenesmus. But in both cases it resolves over a few days once the constipation got better.
So you definitely need to address the constipation. Check if you have intestinal motility issues. Also, check for celiac; as it can be a symptom of it.
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