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Tenesmus ruined my life...


bulba1000

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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! :(

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Jeffrey Roberts

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?

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  • 1 year later...

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.

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Jeffrey Roberts

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.

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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...

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Jeffrey Roberts

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.

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  • 7 months later...

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 

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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? 

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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.  

 

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  • 6 months later...

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? 

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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...

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  • 3 weeks later...

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? 

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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.

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Jeffrey Roberts
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.

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  • 1 year later...
  • 1 month later...

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.

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  • 4 weeks later...

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. 

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  • 3 months later...

sorry to bump this old post, but maybe...just maybe someone found a solution to this?

my life became a living hell.. no job, anxious and depressed all the time, no friends.. and no solution,, :(

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  • 4 months later...

Hi everyone, and thanks to @bulba1000 for resurfacing his post. I wouldn’t have found it otherwise. It’s heartening to find that I’m not so alone and that there are solutions others have tried that might just work for me.  The medical profession (in the UK and elsewhere, from what I’ve gathered) don’t seem very interested in tenesmus, despite its massive impact on quality of life. I hope my story can help someone, even if it’s more about what hasn’t worked than what has.   

I'm a 59-year-old female and have been diagnosed with diverticular disease and class-4 hemorrhoids following a colonoscopy in April.  But my story started almost three years ago following my 2nd coronavirus vaccination (Moderna,) which coincided with a particularly stressful incident involving my teenage son. 

Overnight, I went from someone who had one blissfully regular and trouble-free BM a day in the morning, not long after breakfast, to someone having around 15 BMs throughout the morning, from as soon as I woke - everyday. Recently, it’s been starting even earlier and means that I wake up, on average, every two hours throughout the night. 

Not long after the tenesmus started, I went to my doctor. At the time, I had no other symptoms apart from fatigue. The doctor didn’t seem unduly concerned, and the stool and blood tests I had done came back completely normal. I searched up any link between the coronavirus vaccine and tenesmus or IBS and came up with a blank. More recently, some links have been confirmed, but there is nothing like enough research being done. 

My tenesmus worsened in the summer of 2023, when I had another stressful period. I developed a kidney infection, went back to the doctor and insisted on seeing a gastro specialist. I was put on a National Health Service (NHS) waiting list. 

In the meantime, I went to see an acupuncturist who pointed out that the inflammation, which resulted in a dull pain and tingling sensation, extended down to my left knee. The acupuncture helped only a little.

The doctors seemed not to know what to recommend for the tenesmus. Finally, I was given dihydrocodeine. Initially, it helped quite a lot as it gave me constipation, and recently, it doesn’t help much. 

By January 2024, my referral to a specialist had still not come through and I returned to badger the doctor. The pain from the inflammation around my abdomen and left leg had also worsened. The only way to expedite my referral was to put me on a health pathway for suspected cancer, which she did. By this time I had also tentatively self-diagnosed the inflammation pain as sciatica but, again, the doctor didn’t seem unduly concerned. I was offered no physical examination for the sciatica and told to fill out a self-referral form. I should point out here that the UK’s NHS is in crisis. The average wait for a  GP appointment is two weeks. For most kinds of specialists, the waiting time is six months…

Things seemed to move a little more quickly when I was put onto the suspected cancer pathway. An initial sigmoidoscopy revealed a polyp, and class-4 haemorrhoids. The polyp was benign but the surgeon recommended a full colonoscopy. No further polyps were found. Satisfied that I was cancer-free, the second surgeon (whom I was not allowed to consult with) diagnosed diverticular disease and hemorrhoids. Afterwards, the nurse told me that my “treatment” recommendation was to eat more fiber, I was then discharged. 

The experience has been depressing to say the least, especially as the doctors, satisfied that I don’t have cancer, have lost interest and I have not even been told how long I need to wait to have the hemorrhoids removed. I don’t even know if this will help the tenesmus, since it’s the tenesmus that’s caused the haemmaroids, and, I suspect, it may also have caused the diverticular disease. It’s a chicken/egg situation. 

I am trying to eat more fiber, drink more water and do some gentle exercises to help with the sciatica, which is worse with gas and BMs. Miraculously, standard painkillers (paracetamol in this country) help with the sciatica but, since I am taking them every 4-6 hours 24/7, the impact on my liver is very worrying. 

Apart from the dihydrocodeine, I’ve been prescribed sleeping pills (Loperamide and Zopiclone) and Amitriptyline. None of them have worked.

Currently, I'm looking into some of remedies suggested in this post: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7674109/

I would love to hear advice or updates - good or bad - from anyone who has posted on this discussion. Apologies for the long post!

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Jeffrey Roberts

Dear Peony, what a miserable story. The healthcare system is broken everywhere as a result of COVID and baby boomers getting older; however, NHS has been especially broken for GI issues for many many years. I don't understand why they don't treat people with IBS or in your case tenesmus, with respect so that you can have a better quality of life.

I reported above that the only treatment that worked for my tenesmus was either 5-ASA suppositories rectally or a steroid foam also rectally. Your meds seem to treat pain and stop the bowel completely ie: loperamide or a combination of both amitriptyline. It boggles my mind why they haven't tried to treat the hemorrhoids with topical steroids which might help your tenesmus.

I am going to a digestive disease medical conference this week and will look for any new ideas for tenesmus. I will report back.

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Dear Jeffrey, thanks so much for your sympathy and good advice. I'm going to ask my doctor about the  5-ASA suppositories and steroid foam when I speak to her on Friday and will report back.

Yes, the NHS is in a terrible state. It's very much a political choice to have it like that. Our government is dragging those of us who don't have the means to go private back to Victorian times. 

Just to elaborate a little on my meds, I specifically requested sleeping pills because getting up 5/6 times during the night was driving me nuts and making my symptoms worse. So the loperamide and Zopiclone were for that rather than the tenesmus, and I didn't continue with either when I discovered they didn't work and I was still waking up for BMs. The only other thing my GP prescribed was a fiber supplement called Fibogel with an antispasmodic. I took that for 10 days and it made me feel bloated and miserable and didn't work. I also suspect my condition has little to do with my diet. It almost feels like in July '21 a switch was pressed somewhere inside me, which caused my blood pressure to rocket and brought on (a permanent state of?) tenesmus. I wonder if there's a connection. 

I'd be very interested to hear if you learn anything useful at the medical conference.  

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Jeffrey Roberts

I also use Zopiclone when I want a good sleep. The fact that you are waking up despite that sleeping aid, makes me think something else must be going on. I hope you get some better help. It's hard to separate from your doctor, but it might be a consideration if you are not being taken seriously.

I'll keep a watch out for you at the medical conference.

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