Hi, new to the forums.  I am now 56 but was diagnosed with IBS back in around 1991 after a bad burger at a BBQ triggered long term IBS D.  I also have what I call an irritable bladder where I pass small amounts frequently but all tests on bladder have been normal.  My IBS had got a tad better over the years but never 100% and one of the slightly positive reactions from meds used to treat my urinary issues was a slight constipation effect which was a relief after years of several BM per day.  It got to the stage where I incredibly just needed to go once in the morning most days and had a period of months that I considered "normal" albeit with quite large solid stool (apologies).  The only issue I had was a reoccurring problem of Proctalgia fugax, which literally is a pain in the backside!  I had a Sigmoidoscopy in 2019 which confirmed all was well bar some small diverticular.  I also had an endoscopy in 2017 for an unrelated issue which showed no abnormality bar slight inflammation in stomach.  I keep the fugax under control with either paracetamol or sitting in a hot bath as soon as I feel symptoms coming on.

  Back last year however a few issues cropped up.  Every three months or so I would have blood on the toilet paper which would then disappear for a few months and come back again.  To date since that started I have had four FIT tests and all have come back normal.  The GP suggested the issue was internal haemorrhoids so suggested anusol or germolene cream and thankfully no blood for many months now.  However also late last year I was getting bouts of Tenesmus which is for those who don't know an awful feeling of needing to open the bowels even thought nothing is there.  In January I came off one of the urinary tablets and the tenesmus vanished so assumed it must have been the meds as they were a bladder relaxant and assumed they could do the same to the bowel.

However the tenesmus has returned with a vengeance in the last few weeks coupled with a funny stomach feeling, almost like a hunger pang but always there.  All is fine when I wake up and is fine until I go to the toilet.  Then the fun starts and that feeling of needing to go again occurs and the stomach starts feeling "off".  Sometimes I go again and there is a small bowel movement that occurs, sometimes it's only a little mucus (sorry for being graphic) but more often than not nothing.  I also have a lot of gas going on which is still there despite a BM.  I thought it may be my newer urinary med and came off it abruptly but the day after was really bad and I did need to go several times, so I went back on it and whilst having to go often has subsided the feeling (tenesmus) along with this icky stomach is still there.

It's never been this long as it usually just goes away after a couple of weeks.  The really strange thing is that it calms down in the evening and is ok overnight right until that morning BM and the cycle starts again.  Maybe lying down on a recliner rather than sitting on an office chair helps, or watching TV takes your mind off it, no idea!  I have tried buscopan, colpermin, peppermint oil, probiotics, paracetamol, lansoprazole and nothing works.  Before this latest issue I was playing a lot of golf so getting regular exercise.  All recent blood tests were fine bar my blood sugars still a bit high as I am a Type 2 diabetic but they have been higher before and no stomach issues.  It can't be the urinary meds if it carried on this time after coming off them.  Tried booking a GP appointment but nothing until the end of October so wondering if anyone has any ideas on what might work with tenesmus as it's a nightmare at the moment?  I am in the UK.  Thank you and sorry for the long winded post.

I could have written this post!

I have had issues for years and lately the episodes seem to last longer and longer.

i have tried everything form A-Z and nothing really works 

I always blame it on something I have eaten which is ridiculous after all this time 🤣

Like you it starts as soon as I get a bowel movement if I start getting wind after then I know am in for a bad day

i will get the urge I need to go but like you I don’t always 

I sometimes get the pain in backside and assumed it was a pile (have internal piles) that was putting pressure on it and would be relieved when burst

i get occasionally blood but again that is from my internal piles 

my whole life is run by my stomach issues 

i can sometimes go a few weeks even maybe a month with no problems rarely! but it has no pattern 

The only thing I find slows the stomach is amitripline I try to control with that taking half a 10 mil tablet then maybe the same next night but I have to be careful I don’t take too much as this causes constipation 

unfortunately I am 66 and had for 50 years on and off

I am not overweight and eat healthy don’t smoke or drink

dont take any medication except the amitripline if needed

do a lot of walking

hope yours improves until the next time 😳

 

Ps I can’t drink anything fizzy and I don’t eat pickles or gerkins or anything spicy 

 

 

 

 

 

Kaz you have my deepest sympathies.  I too have lived with IBS since I was in my late teens and at times has destroyed my life as you have to plan everything from holidays to work to days out. What job I did was dependant on it and I spent most of my time on the road as I wouldn't be missed if I kept popping out!! 

Strangely about an hour after I posted last night I had a really bad case of Proctalgia fugax, terrible pain.  I took some co-codamol and sat in a hot bath immediately.  After 10 minutes or so the pain subsided and so bizarrely did my off stomach and tenesmus. Nothing out of the ordinary I thought as quite often bizarrely everything settles down in the evening.  This morning I woke and decided to have a Decaf coffee rather than regular and have had the best day I have had for weeks, not 100% but a good 80 or so.  Was it an internal pile that burst suddenly giving relief?  No blood though so not sure if that would be the case.,  Could it have been the decaf coffee, the co-codamol or the fact that I went back onto 5mg of solifecanin although that was late last night so couldn't have affected the miracle recovery yesterday evening and neither could the decaf coffee and that was only this morning.  Co-codamol and solifecanin can cause a bit of constipation so maybe that has helped today, who knows, all I know is bizarrely today I have been ok.  I also saw on this site somewhere that someone had tried colostrum tablets so have purchased some on Amazon and will try those and report back.  Maybe it is something as simple with me as too much caffeine as usually I do drink at least 5 large cups of coffee a day but could it really be that simple?!  I am having a proper cup now just to see what happens.

Edited October 4, 20241 yr by Max68

So sorry to read about the tenesmus and proctalgia fugax. Both kind of miserable.

If you search we've discussed tenesmus before. Mine responds to both 5-ASA suppositories or if really bad, steroid rectal foam.

Unfortunately, you might have a hard time getting a doctor to prescribe either of those unless you have IBD. 🙁

Many thanks Jeffrey, I indeed did a search and saw your posts and yes it seems unlikely that my GP will prescribe those.  However since my last attack of PF as outlined above I haven't been too bad.  I have continued to reverse my coffee habits and only have one cup of regular coffee later in the day.  The rest of the time I drink de-caf.  I also bought some colostrum and my stomach has settled quite well.  Not sure which one is benefitting but will continue and keep fingers crossed.  Seeing GP in a weeks time so will mention all of this as I find it odd how such a painful case of PF could help the stomach and tenesmus. 

 

Just an update.  Spoke with GP today as the tenesmus returned and it seems that both urology meds solifecanin and darifecanin can have this effect.  So I am going to wean myself off with a low dose and then come off it completely and see if that helps.  Timescale of this problem seems to fit.  She is asking me to do another FIT test and then will visit her for a physical exam.  She says there are some new meds available for irritable bladder so hoping in my case anyway that it's the meds that is causing the issue.  Strange because neither lists tenesmus as a side effect and yet here is a doctor basically admitting that it can be one.  So if anyone has tenesmus and also takes a urology med maybe speak with your GP.

Very interesting! I truly hope this brings you some relief.

Just an update for fellow tenesmus sufferers.  It's not the solifecanin and darifecanin creating the issue sadly.  Came off both and there was less of a constipatory effect so ended up visiting the loo a bit more but the tenesmus stayed.  On holiday last week I had three bad days so tried coming off one of my diabetes meds and thought that had done the trick as day after I felt the best in ages.  Two days later though the Tenesmus returned which is so frustrating.  Always seems fine in evening and night time though, that's very strange, no rhyme or reason, hence why I thought it must be a medication.  My FIT Test came back negative in late October with the usual value of 1 ug/g but a week later I had a bit of bleeding one morning so once again the GP wanted me to repeat the test.  She also performed a DRE which was fine bar one inactive Haemorrhoid as she put it.  Completed the test day after returning from holiday and was quite concerned to receive a result of 8 ug/g.  I was a little sore that day and the day after down below so wondering/hoping if it could have been the Haemorrhoid but there was no visible blood when I did the test. All five previous FIT's in the last year and a half have been 1 ug/g.  The GP has noted it down as negative still as apparently the cut off is 10 ug/g but I am at a loss how it can go from 1 ug/g to 8 ug/g in less than a month. 

I am seeing the GP again next week to ask her that exact question.  They usually send you off for a colonoscopy if it's over 10 ug/g so whilst I don't want to question a GP I am wondering if I should push for a colonoscopy even though Ideally I would rather avoid one.  Short term pain for long term gain and all that!  I know tenesmus can be IBS, a Haemorrhoid and several other benign issues, but I have also read it can be a symptom of Colorectal cancer which is what I am now worried about especially as this has been going on now for a good year or so plus she hasn't given me obvious cause for the tenesmus or the intermittent bleeding. 

You've certainly tried many things. Instead of a colonoscopy, why not see if your doctor will order a sigmoidoscopy. That traditionally only looks at the end of your colon up the left side (descending colon). That's really the area you are most interested in. You can do that with or without sedation. Personally, I recommend sedation, but I have had it done with and without sedation.

Thanks for your kind reply Jeffrey. Funnily enough I had one of those back in 2019 re the Proctalgia fugax, and it wasn't too bad as the prep was an enema rather than laxative solution.  I remember that all was clear bar the fact that the consultant half jokingly said that my bowel was 10 years older than I was and I had some small diverticular (not full Diverticulitis) but he wasn't concerned.  I remember I had gas and air and was breathing a bit too much in so may go for sedation this time!! Maybe they have flared up or got worse so maybe that's a good option to look at to start with.  I guess the only worry with a sigmoidoscopy is that is would miss anything that could be going on higher up but as I say it's a starting point as it's been 5 years since the last one.  It's just very baffling.  Why does it start after a BM but is fine later in the day and evening?  It's almost like the BM irritates something then the irritation wears off at some point but it's like one minute bad then next minute fine rather than a slow improvement.  The 8ug FIT test has concerned me though although it's normal as per the guidelines.  I'll run the sigmoidoscopy past the GP and maybe another FIT test as well.  Maybe a sigmoidoscopy will pick up either inflamed diverticular or internal haemorrhoids.  Thank you.

I completely understand the dilemma. I've gone in for a sigmoidoscopy with sedation only to find that I was clear enough for them to do a complete colonoscopy. So, you could go for a sigmoidoscopy and eat light, do the enema and perhaps they will get further. Otherwise, a colonoscopy would have to be ordered and prepped for. If it has been 5 years than the colonoscopy might be the route to take.

Indeed.  Haven't had a colonoscopy since 1990 ish and still have nightmares to this day from the Picolax!  I have visions of accidents the night before in bed or running to the toilet just before the procedure!  That's a good shout on eating light and they may get further with a sigmoidoscopy.  I was staggered to see that in some areas a colonoscopy seems to involve a 5 day prepping process leading up to it.  You would think that after all these years technology would have moved on from such barbaric screening!  

Well, prep's aren't much different than 1990, but you know what to expect. A colonoscopy is still the gold standard of care. If they only do imaging and then see something, you'd require the scope at some point.

29 minutes ago, Jeffrey Roberts said:

Well, prep's aren't much different than 1990, but you know what to expect. A colonoscopy is still the gold standard of care. If they only do imaging and then see something, you'd require the scope at some point.

Yeah you are right. Going to have to request one as this is getting worse, it's starting to creep into evenings now and my appetite has been off last few days and stomach really feels off. Very worrying.

Edited November 25, 20241 yr by Max68

Well a bit of an update.  Came off both my urology meds last Monday evening and felt absolutely terrible on Tuesday, really bad tenesmus upset stomach, feverish, really ill.  Rang the surgery as I had an appt on Wednesday but they couldn't see me any earlier so I went to A&E as I was so rough.  Saw a GP there, not much else they could do, he performed a DRE and checked my stomach and all was clear bar an enlarged prostate that I knew about anyway.  The hospital GP suggested the enlarged prostate "could" cause tenesmus if large enough to affect bowel.  

Saw GP at surgery next day and bizarrely felt a lot better.  She dismissed the enlarge prostate possibility and said that she wasn't concerned at all with the FIT test result of 8ug stating it was perfectly normal.  However she agreed to refer me to the colo-rectal team to get to the bottom of it (pardon the pun).

Strangely symptoms have improved over the week.  I have stayed totally off both urology meds and whilst I have been peeing more, understandably, the tenesmus has been an awful lot better.  Most days have been fine, a little bit this morning, but again fine by evening as per usual.  Difficult to work out when it is your head anyway but the "off" stomach has cleared up, appetite back and BM normal.  This time rather than going back to the meds after 48 hours or so I gave it a good week this time.  Memory suggests the other times I came off the meds the next day was horrendous so I am now wondering if it has been the meds all along and now I have weaned myself off for a week things are getting better each day.  Certainly strange considering I cannot find any such side effect anywhere regarding Solifecanin/Darifecanin and Tenesmus but there again do I have real tenesmus?  It's never been painful rather an incredibly uncomfortable pressure feeling in the rectal area.  

I am obviously hoping it is meds related but I have had false dawns before like the week after a bout of Proctalgia Fugax things subsided for a week then came back but at least things have eased off after that awful Tuesday last week.  I had a phone call today and have a telephone consultation with the colo rectal team at the hospital tomorrow and will outline all symptoms and see what they say.  Hopefully they will check things out anyway.

Spoke with the nurse today and they are arranging a sigmoidoscopy.  Seems possible that my mild diverticula in 2019 may have got worse and could be causing the issue.  That didn't cross my mind.

Good that they are taking this seriously and are exploring further.

Just to finally update.  Had sigmoidoscopy today and all was clear bar two internal haemorrhoids that hopefully are the cause of the issue.  With a bit of luck the reassurance will help with the tenesmus.  Thanks Jeffrey for your help. 

So glad you got seen so quickly. Let's hope that this does it.

It's always my pleasure to help as best I can. ❤️

1 hour ago, Jeffrey Roberts said:

So glad you got seen so quickly. Let's hope that this does it.

It's always my pleasure to help as best I can. ❤️

Again Jeffrey much appreciated.  After some thinking after the advice on how to deal with internal haemorrhoids yesterday it has occurred to me that I may well need to tinker with my medication regime.  As the nurse said "straining" puts pressure on the haemorrhoids and tenesmus of course is the feeling of incomplete evacuation so you sit on the toilet more and strain more, so it becomes a vicious circle.  Whilst the solifenacin and darifenacin urology meds do not have a side effect as tenesmus listed they do have indigestion and constipation as side effects.  So after many years controlling my IBS D with mebeverine and loperamide I was adding another potential constipatory urology med alongside the loperamide.  So whilst the unknown benefit of adding those two medicines together controlled the IBS D better than ever before it possibly went too far the other way creating the constant straining and therefore haemorrhoids and tenesmus.  I don't want my IBS to go back to what it was but at the same time don't want one benefit creating another problem so it will be a fine balancing act.  Maybe one urology med will be enough without the loperamide or just the loperamide and go with the possible botox option for the bladder, although that sounds a bit over adventurous.  Will discuss with GP the way forward.

I worry about straining too when I've up'ed my IBS-D meds, but I personally feel I can live a better life with C than with D. I'm pretty sure I gave myself an inguinal hernia from the straining. It' a very tough balancing act and it's easy for a nurse to say something. It's another to live the life we have every day.

Absolutely. To be honest the benefits of the urology meds were priceless with regard to my IBS, it was just the tenesmus that ruined that. As you say such a delicate balancing act. Just wish they could find what the problem is with IBS. 

I found that an anti-psychotic medication that I was using off-label for chronic vertigo and nausea worked incredibly well for my IBS-D for the year I was on it. The risk of tardive dyskinesia is too high on those meds so I stopped using it.

Treatments bring on other symptoms or side effects. It is definitely a balancing act.

It is indeed.  Sympathies with the vertigo and nausea.  I have suffered with Bilateral Vestibular Hypofunction for many years, which is basically the balance organs in the ears are destroyed, by what I never found out although glandular fever in my teens is a possible culprit.  Was a promising tennis player in my younger days but all that went as I can't balance properly, although I did play football (soccer) for years (albeit not very well!!) and still play golf, which the consultant was impressed with all things considered.   At it's worst the room just spins and I can only lie down, at it's best if I move my head everything moves.  Took years for a diagnosis only finally finding out a few years ago.  That helped actually at least getting a diagnosis, even though it can't be cured.  Fortunately the worst bouts tend to hit every 8 years or so and then it's start again, so anyone with vertigo has my sympathies.  With being partially deaf, the BVH, IBS, Arthritic hips, Type 2 diabetes I certainly think I was towards the back of the queue when the gods were handing out health but millions worse off than me so thankful for small mercies.

Vertigo is the worst.