bulba1000 Posted July 23, 2019 Report Share Posted July 23, 2019 Hello everyone, I'm a 43 y/o ..Male.. with a problem... and it's called tenesmus. started about 13 years ago. after the doctors dismissed it as "ibs" i started taking xanax+seroxat and it almost went away.. 90% off .. i was happy enough with it. 5 years ago, it came back.. and it came back hard! I can't work, have a relationship, or just relax it affected my quality of life to a point i don't care about anything anymore. tried again the xanax+seroxat way, no go, tried almost 15 other psychiatric meds, no relief. got myself checked with numerous tests .. all ok. but that damn feeling.. still there.. poking.. almost a pain.. for the last 5 days, i was very stressed, and i saw a direct connection between the two... could it be IBS related and i'm going in the wrong direction all these years? everything is fine besides this darn muscle group that is super tight ..down there. help! Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted July 23, 2019 Report Share Posted July 23, 2019 Tenesmus is really unpleasant. I've certainly had my share of it. For those unfamiliar, it's a feeling that you have to empty your bowels even when there is nothing to empty. It kind of drives you nuts having to check and worry that passing gas might contain some stool. I have Crohn's colitis (in my colon) as well as IBS. I have only really felt tenesmus when I have some inflammation in and around my rectum. I have used 5-ASA suppositories or enemas to resolve that. It usually works. Occasionally I have to also use a corticosteroid foam. Could you actually have some inflammation and that's causing this problem? Just because you were examined once doesn't mean they actually caught it in the act! It took years to diagnose my Crohn's. Can you see your doctor to perform a sigmoidoscopy when you have the worst bout that you can't tolerate it anymore? Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted November 18, 2020 Author Report Share Posted November 18, 2020 Hi.. Sorry for the -very- late delay in my response, and thank you for your answer.,. I have done numerous tests including full colonoscopy, a video capsule and several MRI's & CT's.. The only thing that they found is very very small inflammation in the ileum, my doc said she wouldn't even treat this minor thing if i wasn't having any symptoms but we tried several treatments including steroids with no effect... nothing is abnormal in all blood tests so they ruled it out. Now I don't know what to do next :( it feels like it's not in the rectum itself but a little more inside.. desperate. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 18, 2020 Report Share Posted November 18, 2020 The ileum is far from the region that you are feeling the tenesmus in, so maybe the steroid didn't really hit the spot. I assume you were on Entocort? Do you think you could convince your doctor to let you try a 5-ASA foam or suppository up your bottom end to see if that helps? You could also try a steroid foam like I used. My doctor also said that there was no visible inflammation, but I still had tenesmus and it did respond to the topical treatment. Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted November 18, 2020 Author Report Share Posted November 18, 2020 She gave me budeson which was horrible in terms of emotional response, then prednisone. is there a specific name for the steroid foam you used? I can try and ask my doc to prescribe me one for a try... thank you again for your answer... Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 18, 2020 Report Share Posted November 18, 2020 Budesonide is the generic name for Entocort. It is a corticosteroid, but taken orally only effects the small intestine and right side of the colon (ascending colon). Prednisone would effect your whole body. If your problem is tenesmus, than you might need something more local to that region. The suppository and enema could be Salofalk, but Pentasa also makes a suppository and enema. Both are composed of 5-ASA. The foam is called cortifoam and it is hydrocortisone, but there are also other brands. Quote Link to comment Share on other sites More sharing options...
fuready Posted June 21, 2021 Report Share Posted June 21, 2021 I was so happy to find this informative conversation. It's very difficult to find this type of discussion coming from real sufferers of this life changing illness. My suffering began in August, 2020 when I began to feel a slight pressure in that region. In September, I had the worst case of diarrhea in my life and after that the sensations of tenesmus began. By November, the situation was becoming unbearable so I went to a colorectal surgeon who, after examining me, found 8 internal hemorrhoids. He was certain that the hemorrhoids were causing the problem so I had a hemorrhoidectomy in December. He was wrong. Seven months after the surgery I am still suffering from tenesmus. In addition, a new element cropped up. I usually have a BM every morning. Now after a BM with no straining, I am exhausted for the entire day. The combination of tenesmus plus the exhaustion pretty much ends my day. I found that on the odd day I don't use the bathroom I feel fine. No tenesmus and no exhaustion. As a result I sometimes deliberately constipate myself with Imodium just to get a little relief. Based on your conversations I'm thinking of trying mesalamine. Once again, i want to thank you guys for discussing this topic 1 Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted June 21, 2021 Author Report Share Posted June 21, 2021 I'm in bed now.. Trying to sleep.. But I can't.. This damn feeling won't leave me. I have never had a day without tenesmus, I wish I had.. Just give me some relief for an hour.. Nothing more.. I hate this life.. I want my old life back.. Did you find anything else that helped you? Any drug or treatment? Quote Link to comment Share on other sites More sharing options...
fuready Posted June 22, 2021 Report Share Posted June 22, 2021 I literally feel your pain. My days are horrible as well, but for some reason I can sleep at night. I've tried a lot of things but nothing has worked. As I said before, constipating myself helps and gives me relief for a day or two but that just might be for my particular case. It's probably not a safe practice but it gives me relief. Another thing that helps a little bit is marijuana. It relaxes me and gets my mind off the pain. It would be great to hear how other people are handling this problem as googling tenesmus offers the same lame/generic advice over and over again. Wish we could get more people on this forum. I'm thinking of trying mesalamine. If I do, I'll keep you informed. My thoughts are with you in trying to cope with this horrible ailment. Quote Link to comment Share on other sites More sharing options...
Nicky Posted December 22, 2021 Report Share Posted December 22, 2021 I have had this problem for over 3 years. I have had a sygmoidoscopy, colonoscopy, rectal biopsy, pelvic floor therapy, 5 sets of hemorrhoid bandings, injections of botox (temporary relief only), tried nifedipine, steroid suppositories, I am being treated by a naturopath; currently taking venixxa for pain and bleeding, seeing an osteopath and am so frustrated. I too feel pain and exhaustion following bms which is temporarily alleviated if I stop having them, which is very difficult because I feel I always have to go. I get some relief from pain killers: Tylenol 500mg or naproxen. What is mesalamine, has anyone tried it? Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted December 25, 2021 Author Report Share Posted December 25, 2021 Hi Nicky, For some reason, my psych gave me concerta, i'm at 54mg, and i feel alot better with it, i guess it is something of mind-gut thing, but still at night i suffer alot, didn't tried mesalamine, but it sounds familiar, i guess i took it at a point. tried everything else you can imagine, is it all in our heads? I'm so depressed lately with it, can't even go out for work no one can understand what i'm going thru (just you guys)...frustrated... Quote Link to comment Share on other sites More sharing options...
wdad6277 Posted January 14, 2022 Report Share Posted January 14, 2022 I too have this problem. Tenesmus often lasting all day and feeling very uncomfortable. I have ulcerative colitis which i was told caused my IBS-D. I take mesalamine every morning (4 huge pills). I am told it is controlling my ulcerative colitis. I can tell you that it does not control the tenesmus. I am on amitriptyline 25mg once a day and that sort helps i guess. I do have some days where I don't feel it is few and far between. I was told that its mostly physiological and the anti depressant should help break my brain form my gut. I guess if i really think about it them more i have going on in my head the less i feel the issues. But they are still there, so it cant be all physiological. I just want to find something that take it away. I've changed my diet a lot and i guess that helps some. If i eat onions then i am in big trouble within 8 plus hours. Same with any chocolate. I am trying to stick to the LOW FODMAP plan but that is really difficult to do if you are on the go. I guess i feel the best when I am at home on my own time. I seem to feel the worse when I am at work. I like my job and i don't feel stressed out. I am looking at they hypnotherapy but i am very skeptical that it would work. Any thoughts on that? Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted January 14, 2022 Author Report Share Posted January 14, 2022 I've tried hypnotherapy (in 2 different clinics), it was interesting but didn't help me at all. I don't think it has something with something we eat, it's just there.. all the time, making us crazy. amitriptyline made it worse in my case, and we tried other tca's as well but they all made it worse for some reason. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted January 14, 2022 Report Share Posted January 14, 2022 9 hours ago, wdad6277 said: I too have this problem. Tenesmus often lasting all day and feeling very uncomfortable. I have ulcerative colitis which i was told caused my IBS-D. I take mesalamine every morning (4 huge pills). I am told it is controlling my ulcerative colitis. I can tell you that it does not control the tenesmus. I am on amitriptyline 25mg once a day and that sort helps i guess. I do have some days where I don't feel it is few and far between. I was told that its mostly physiological and the anti depressant should help break my brain form my gut. I guess if i really think about it them more i have going on in my head the less i feel the issues. But they are still there, so it cant be all physiological. I just want to find something that take it away. I've changed my diet a lot and i guess that helps some. If i eat onions then i am in big trouble within 8 plus hours. Same with any chocolate. I am trying to stick to the LOW FODMAP plan but that is really difficult to do if you are on the go. I guess i feel the best when I am at home on my own time. I seem to feel the worse when I am at work. I like my job and i don't feel stressed out. I am looking at they hypnotherapy but i am very skeptical that it would work. Any thoughts on that? I have Crohn's disease in my descending colon, in addition to IBS-D. I am using the same treatment as you of mesalamine and amitriptyline and you are right, it just doesn't stop the tenesmus. What I find is to use pentasa or salofalk suppositories (500mg - 1 gram) for about 4-7 days and it seems to stop the tenesmus. Hypnotherapy is also said to be good for pain, but I'm not so sure about the tenesmus. It's usually inflammation and not so much in our heads. Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted January 15, 2022 Author Report Share Posted January 15, 2022 I see so many people suffering from the same exact thing i have, and no one found the answer... frustrating.. Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted June 14 Author Report Share Posted June 14 anyone else have this thing that wont go? Quote Link to comment Share on other sites More sharing options...
GMels Posted July 25 Report Share Posted July 25 This thread has been very informative. I've suffered with this for years but didn't know it had a name. I just thought I was being overly hyper aware of my body and that all I needed to do was to calm down and it would go away. It didn't. I plan on bringing this up with my gastro after I'm past this c-diff infection. 1 Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted August 22 Author Report Share Posted August 22 @GMels how long you had it? i msged u by the way.. Quote Link to comment Share on other sites More sharing options...
Mynightare Posted August 26 Report Share Posted August 26 I've had tenesmus since I was diagnosed with diverticulosis which is over 10 years. I've also developed what my GI calls it as Post infectious IBS. Another GI said he thought I had mild segmental colitis due to diverticulosis. I've had a few bouts of diverticulitis as well as gastroenteritis. My tenesmus is sadly a daily ordeal and begins after I my morning 4 or 5 bowel movements. I've tried oral Lialda and mesalamine enemas and nothing. Have not tried enterocort maybe that's next. My GI wants me to try Desipramine which is TCA. My colorectal surgeon says until I remove my sigmoid the tenesmus won't stop. He says inflammation and infectious bowel diseases are the driving force behind tenesmus. Don't know if anyone has had surgery for UC or Crohns and the tenesmus went away. This is a nightmare disease and no answers exist. It would be great to see if anyone has a fix. I've thought that if they made peppermint suppositories it may help. Quote Link to comment Share on other sites More sharing options...
bulba1000 Posted August 27 Author Report Share Posted August 27 @Mynightare yeah, they gave me doxepine now (also a tca), can you contact me by email? Quote Link to comment Share on other sites More sharing options...
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