Hi all, just an update with a new medication regime that it's possible may help some others with IBS D, although obviously speak with your medical professional before you try any of this.  You may note that my tenesmus situation was possibly caused by my urology med, Solifecanin.  However since thankfully being goven the all clear after a sigmoidoscopy I have been playing around with a few regimes and have come up with one that so far seems to benefit both bladder and bowel.  

I now take 5mg of Solifecanin, 2mg Loperamide and Mebeverine 135mg each morning and again the same just before bed.  Please note that I have other medications that I take not related to my IBS or Bladder bar Mirabegron 50mg which does not have any effect on my IBS.  This new regime seems to give me the benefit of 10mg of Solifecanin but not having the 10mg all at once.  My bladder is far better overnight and I generally have one solid BM in the morning but not difficult to pass.  Some days I may have to go again at some point but the extra constipatory effects of the Solifecanin are far easier to deal with than having 10mg at the same time and it's far more preferable than my old IBS D.  The Tenesmus has settled a lot more now as well.  Sometimes it's there but not as bad as it was.  Touch wood it continues to work but I am more stanbhle now in that area than I have for a long time, so it's possible that Solifecanin may be a drug it's worth talking to your GP about if you suffer with IBS D.  Good luck.

Well I am back as the above regime stopped working and the tenesmus is back.  Was away last week and so a few days before I came off the solifecanin as it got to the case that I thought just living with the IBS would be more prefereable than the tenesmus with the solifecanin.  First couple of days was fine but then the old IBS symptoms came back with cramping, gas and more visits to the loo, culminating in yesterday with several visits after the main one but little to pass each time, but with that dreaded Tenesmus feeling as well, so it can't be the solifecanin that's causing the issue, unless it was what started it all and it now won't go. 

It's so frustrating as the feeling is never there until I have a morning BM then it's hell most of the day until late afternoon when it strangely subsides and in the evenings I am absolutely fine, everything then repeats the next morning.  I was better off on solifecanin because at least that has constipatory effects so prefer tenesmus with less BM rather than Tenesmus with more BM!!  Wondering if it's all to do with the proctalgia fugax I suffer on and off with.  For those that don't know what proctalgia fugax is, it is literally a pain in the backside!!  Had a severe attack on holiday and even the usual two paracetamol didn't work.  Thankfully a hot water filled bidet did the trick but I had to be careful with the family crown jewels! 

I just don't know where to go now because as other sufferers know it literally affects your ability and confidence to go out just in case "the feeling" becomes a real need.  I have had the sigmoidoscopy and was hoping when I got the all clear on that the mind would be at rest but obviously not.  I know there are two internal piles so wonder if it is those that are the cause as the irritation starts immediately after the morning BM but if so why do the effects last so long and why does it disappear late afternoon and be perfectly fine every single evening?!  Thankful for that bit I guess.

Wondering if a daily enema each morning would help as then at least it would hopefully convince my brain that I am empty.  Anyone have any ideas what sort of enema it's worth trying? I would appreciate some advice and if any new ideas have arrived since I last posted in February would also appreciate it.  So frustrating as I really thought coming off solifecanin would solve it and I was willing to live with the overactive bladder rather than the tenesmus.

I'm really sorry that the regiment stopped working. The recurring tenesmus is truly unpleasant. Proctalgia fugax can be so painful. I don't get that very often. When I do it's not more than 30 seconds at a time. It mysteriously disappears just as mysteriously it appears.

I think you should do some research and find a doctor or researcher near you that works specifically with patients who have this. While there are no easy answers to next steps I don't think you need to figure this out on your own.

Thanks Jeffrey appreciate the words.  Saw a GP last week who said I was on too many meds.  I said it was the GP's who kept giving them to me!!  He said to come off mirabegron and mebeverine as the mebeverine anyway contained lactose and suggested I try the FODMAP diet.  First day after starting I felt pretty good but since then it's been miserable with IBS symptoms worse than they were not on the diet.  I went back on the mirabegron as my bladder went to pot again as I was getting up too often in the night. I am speaking to another GP next month and will ask for a referral to a gastro expert, ask for food intolerance tests, and possibly a dietitian as the GP last week just gave me a sheet of the diet and sent me on my way.  The fact that my sigmoidoscopy was clear meant he obviously wasn't too bothered. 

Don't get me started on UK medicine and GI problems. Unless you have blood pouring out of you they treat everything as a nuisance when in fact it is ruling your quality of life.

I word of caution about GI doctors, they do not have a great deal of knowledge about food intolerances or anything to do with diet. A registered dietitian that is well versed with the low FODMAP diet will often provide more care and attention. 

So would a dietitian be able to perform the food intolerance tests?  Must confess since I stopped eating pasta the excess wind has improved, as I started having those symptoms in Italy and of cours I ate a lot of pasta there, so that's one thing of note.  

I don't know about the UK, in Canada where I am the family doctor or GI doctor can refer me to a technician for food intolerance testing. Just know that it is not exactly an exact science unless they are looking for specific things like gluten, lactose, etc...

Ok thanks.  I had a coeliac test last year and that was negative.  If they can rule out gluten, lactose, dairy, then that would be a start.  I'll do some research.  Thanks Jeffrey, appreciate it.

i've had pi ibs or 15 years and according to my functional GI doc at UCLA the pelvic floor and rectal nerves are the cause.  She ordered an mri defecography. It showed internal rectal intussusception which is when the rectum turns into a folded sock. The tissue damage from years of multiple daily trips is what causes nerves to start firing out of control specially after having diarrhea type stools. The bile, enzymes, and other components of poorly formed stools do a lot of microscopic nerve damage.  Your Brain is receiving signals to continue pooping. Of course this causes one to strain without stool production and induces even more damage.  It's a vicious cycle and because there's no cure for ibs so many people suffer.  I take non Fat Kefir and the bacteria really help modulate this.  I've tried everything but this helps the most along with insoluble fiber. I also have tried just about everything.  She told me that once in awhile a warm water 500 ml enema before bed time will calm things.  Yes there's no cure but we are left to experiment.  At one time I used cabbage juice and I was symptom free for months until it came back. 

Mynightare -  Thank you for your post.  I find that GP's give up on you once anything "serious" is eliminated.  After my signmoidoscopy was clear the GP just didn't want to know and just sent me a leaflet for the FODMAP diet, although he has referred me to a dietitian and said they may be able to help with food allergy tests.  They also just suggest more fibre but I have tried that before, I want go to the bathroom less, not more!!  Interestingly with FODMAP the one food I found did affect me greatly is pasta.  I noticed cramps and excess wind when we were in Italy and with the FODMAP as I was reintroducing things one night I tried pasta and a rather large cheesy bread, and I felt awful the next day, the stomach was well off.  However, white bread and caffeine don't seem to be an issue, so full gluten intolerant I seem not to be, it's like searching for a needle in a haystack.  I have come off two meds, mirabegron and mebeverine, and now take 5mg of Solifecanin with 2mg Lopermaide in the morning and evening and with their constipatory effects they help, and as now off pasta the cramps and the wind have calmed down.  The tenesmus isn't quite as bad but the problem is without being too graphic on occasion when my head tells me I need the bathroom again not long after already going sometimes there is a lttle bit left and it takes a couple of extra visits to clear, so my head never knows when I am quite done so to speak.  This in turn really messes with your head/gut relationship and leads to panic when you are due to go out.  The only time I seem confident is when a visit produces only a little clear mucus and then my head knows I am done.  It's very difficult to tell yourself you do NOT need to go with tenesmus.  Is non Fat Kefir a drink or tablet form?  I have been trying Actimel but that doesn't really help.  I was considering either hypnotherapy or acupuncture but that could be an expensive mistake.

On 6/16/2025 at 3:13 PM, Mynightare said:

i've had pi ibs or 15 years and according to my functional GI doc at UCLA the pelvic floor and rectal nerves are the cause.  She ordered an mri defecography. It showed internal rectal intussusception which is when the rectum turns into a folded sock. The tissue damage from years of multiple daily trips is what causes nerves to start firing out of control specially after having diarrhea type stools. The bile, enzymes, and other components of poorly formed stools do a lot of microscopic nerve damage.  Your Brain is receiving signals to continue pooping. Of course this causes one to strain without stool production and induces even more damage.  It's a vicious cycle and because there's no cure for ibs so many people suffer.  I take non Fat Kefir and the bacteria really help modulate this.  I've tried everything but this helps the most along with insoluble fiber. I also have tried just about everything.  She told me that once in awhile a warm water 500 ml enema before bed time will calm things.  Yes there's no cure but we are left to experiment.  At one time I used cabbage juice and I was symptom free for months until it came back. 

That's very encouraging that you found someone who could identify this.

Interestingly since I came off mirabegron and mebeverine things have got a lot better.  I also came off Vitamin D supplement just as an experiment as it was summer so plenty of sun but no idea if that also helped.  Also this last two weeks I have been suffering a fair bit with a dry socket after an awful tooth extraction and my stomach, apart from some consitpation, has been absolutely fine, but there again I have been rotating between a lot of nurofen, paracetamol and codeine!  Obviously can't stay on those forever, but maybe the agony from the tooth has made me foget about my stomach!  Who knows!

Bit of an update.  Since the tooth has improved an I came off the painkillers the tenesmus has creeped back.  So it must have been the co-codamol that was helping both the IBS and tenesmus.  Have booked in with a GP to discuss this as am I correct in thinking codeine phosphate can be a "treatment" for IBS-D?  I must say that I coped with the minor constipation on codeine fine and as I say the tenesmus vanished, and it can only have been that drug.  I know it's meant to be addictive but if it is a long term "solution" for IBS-D and tenesmus I certainly wouldn't care.  Anyone else on codeine for their IBS or use it in a combination with Loperamide?

Edited July 9, 20251 yr by Max68

7 hours ago, Max68 said:

am I correct in thinking codeine phosphate can be a "treatment" for IBS-D

A narcotic is not a treatment for IBS-D. It's unfortunately habit forming and dangerous to be on a narcotic longterm for a chronic condition like IBS or tenesmus. I totally get where you are coming from.

Great opportunity to ask your GP if they can recommend a non-habit forming treatment like codeine.

Will do.  Most odd that it works.  Maybe the painkilling properties numb the nerves in the gut or something.  I will certainly discuss to see if they can work it out and offer something similar but without the dangers as you say.

Hi all, thought I would update as I hopefully have had a small miracle with the Tenesmus and thought I would share in case it helps someone else. I tried the Kefir drink for a few weeks but no luck. No luck either with the Fodmap diet. Staying away from pasta though has helped immensely with excess gas. Not really a hardship as I wasn't a big pasta eater anyway but do miss a spaghetti bolognaise. I went a few weeks ago to see yet another GP re the tenesmus. He did the usual probing and suggested I tried Buscopan 10mg. I had tried it before and it hadn't worked but he persuaded me to give it a proper go. About the same time I had grabbed a box of Fybocalm capsules on Amazon. I went away on holiday for two weeks and incredibly rarely had a problem. The tenesmus was a lot better and I was generally having just the one BM per day, incredible with my IBS. No cramping or "off" stomach and I could handle the odd brandy and coke or Pina Colada no problem!

I thought that it was because I was relaxed, no stress, and was convinced the issues would start again when I got home. However it's been three weeks since I returned and the symptoms haven't come back. Not sure if it's the Buscopan, Fybocalm or something else but to have no tenesmus is a wonderful feeling. Fybocalm does look like its safe for long term use but at some stage over the winter I will come off either Fybocalm or Buscopan and see if it's one or the other, or both that's so far doing the trick. Had some false dawns in the past but fingers crossed this continues.

Edited October 2, 2025Oct 2 by Max68

I don't know anything about Fybocalm, but I do know buscopan. I have personally never found that buscopan stops my tenesmus, but it might in some people as it turns down the volume on the nerve that gives you that sensation.

Just an update that the small miracle didn't last particularly long and the tenesmus returned so the buscopan and Fybocalm either didn't work at all and it was something else that provided relief or the body has just got used to the medication. I've now got the added issue of terrible wind that wasn't an issue before. All very depressing it literally affects you life in every single way.

There are two other possibilities that I am going to try. I had some side effects from a diabetes medication Dapagliflozin and was ordered to come off it for a week or two and interestingly the tenesmus subsided so I am going to try and come off it again for a week and see if the tenesmus subsides this time. The other situation was I had another health scare which required tests. For two weeks my mind was totally focused on that and again interestingly the tenesmus subsided. When I got the all clear from this other scare the tenesmus returned. It's clearly a brain/body link in my opinion, so I am considering looking into kinesiology. A friend suggested it as an option. Anyone else gone down this route?

Apologies for yet another update but it seems I now have a proactive GP! I went to see her because as you would have seen with my others posts nothing I do seems to work. The tenesmus and stomach discomfort is pretty much permanent now bar strangely clearing up more often than not late afternoon and I am always fine in the evening. My appetite has not been good though and have lost a little weight although that might be down to not eating as much and getting back on the golf course walking four hours when I can although that's not easy with the tenesmus and stomach worries.

First set of bloods she took was a FBC. Nothing untoward bar my diabetes HBA1c has jumped from 59 to 72 over the winter although that's not surprising with the lack of exercise in the cold months. She then ran another set of tests. H. PYLORI FAECAL ANTIGEN came back as negative. Quantitative faecal immunochem test (FIT) came back as 5 ug/g which is apparently considered as normal. My last one back in Nov 2024 was 8ug also considered normal, and the six previous ones were all at 1ug, so whilst not over happy with 5 it is considered normal. Now for the shock. She tested Faecal calprotectin content in the stool. I had never even heard of it but it apparently tests for inflammation in the bowel and was stunned to see a result of 360 ug/g. Normal is 0 - 50 😲 and she has urgently referred me to Gastroenterology. Stupidly I looked at Google and that gives the impression I have a choice of Crohn's, Colitis or possibly even cancer! I did have a sigmoidoscopy in both 2019 and December of 2024 so the last one is just over a year ago and it was as clear as a bell bar two internal haemorrhoids but I can't imagine those flaring up to be the cause, and of course a sigmoidoscopy only looks at part of the bowel. The GP also wants me to wean myself off Lansoprazole as I have been on it for years and apparently that can cause stomach inflammation but surely PPI's wouldn't go that high. I had an endoscopy back in 2017 and they did say there was some mild inflammation in the stomach but didn't take it further or elaborate.

So I suspect the joys (not) of a colonoscopy and endoscopy are the next steps both of which I am terrified of yet at the same time I am sort of glad something has been found as I can't go on with the stomach discomfort and tenesmus. Hoping it's nothing life threatening but it doesn't look like good old old IBS which the doctors have been telling me I have had since 1989!

Edited May 11May 11 by Max68

Well things get weirder! After coming off both Lansoprazole and Metformin things settled a bit stomach wise although have had a bit of rebound heartburn, that in itself landed me in A&E after bad heartburn and a quick call to 111 ended up with 111 sending an ambulance out and tests for a heart attack! 😬 No heart attack found so obviously just heartburn after coming off Lansoprazole although they want to do an echocardiogram after they picked up a possible aortic murmur. It never ends!! Anyway I digress. Stomach isn't perfect, have some bad days still but since coming off the meds reasonable days have outweighed the bad which is some relief. Odd thing is after many years of looser motions with IBS I have now gone a bit the other way to being a bit constipated with harder stools although strangely that makes my stomach and tenesmus feel a bit better., down to coming off the metformin maybe? Who knows.

Anyway this is the confusing bit. I still haven't heard from Gastro but as I was feeling a bit better symptom wise the GP suggested we redid the faecal calprotectin test. Just got the results through on the portal and it has gone down from 360 ug/g at the start of May to 53 today. May's comments were "Refer urgently to digestive diseases." Today's comments under the result are "Treat as IBS or consider non lower-GI disease" although I don't really know what "consider non lower-GI disease" means? Maybe someone can shed a light unless I am stupid!

Obviously pleased it has come down but at the same time baffled. Surely coming off those meds wouldn't cause a drop like that? and obviously concerned now that Gastro won't consider that score with as much urgency and even though things are a bit better I would like to now what is going on.

Just thought I would ask as I have no-one to talk to and it may be a while until I can speak to the GP again.

On 10/4/2024 at 1:33 PM, Max68 said:

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.

Omg 5 cups of coffee?!?!?! 100% that is making your symptoms worse, yes that simple. Stop all caffeine. Ignore the cravings. Forget decaf, that still has caffeine. Forget Black, green, and even white tea they also have caffeine. Drink chamomile tea. Or peppermint. Stop the coffee completely for 2 weeks see how you feel. I am so sure there will be improvement at the very least.

Thanks Dawn. Have tried coming off coffee totally before and it didn't work although it was the Peppermint tea I tried as a replacement for a month instead of coffee. I'll give the chamomile a go. Thank you.