following months of waiting I eventually paid to see a private bowel surgeon. Worth every penny.
She organised tests through NHS.
Won’t bore with details- but I have a dysfunctional opioid bowel ( due to severe back problems). A large rectocele & possibly a cystocele
I’m having a transit study… but am allowed my usual analgesia & laxatives.
If it transpires it it’s mostly pelvic related then I shall have ring pessary fitted to ‘hold things up like a tent! If transit study shows it’s my large colon then I’m to take a trial of ‘moventig’ - a opioid nerve blocker to bowels.
Hopefully speeding things up.
Failing all that I shall have to wait on NHS list for a ant& post vag repair. Worst case scenario is a colostomy or at very worst a illeostomy to be carried out… anything to be free of this almost constant gut ache and needing to ‘go’ constantly ( still can only manage with suppositories, enemas and a ton of movivol plus douches several times daily .) it’s all life limiting on top of my daily struggles with my back etc
Seeing gynaecologist 28/8/24 privately ( I’ve saved for all of these appointments. Luckily partner has chipped in too. The pessary itself costs £90… why? Anyway am just 🙏that something works .
shall report back when seen.
oh, snd I have to see an NHS pelvic physio as have dissenergia… so that’s another long wait no doubt.
So sorry for long, seemingly endless story.if anyone has had anything similar I’d love hear from you. Take care x
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Beakybird58
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I'm afraid I have nothing constructive nor helpful to add, but I just wanted to end you a cyber hug because you are having to go through and deal with so much unpleasant stuff.
I have had severe back problems since 1996 so I sympathise with what you are going through. I, too, have had to resort to consulting private physicians due to denials, gaslighting and lack of help from the NHS over my Hashimoto's and macrocytic anaemia, so I'm with you on having to find the money for private help too. A pessary costing £90?! As you say, why???
I hope your NHS appointments arrive soon and that you get the help you so desperately need.
where about in UK are you? I've had similar problems for four years, had 3 ct scans, proctogram colonoscopy all detecting dicerticular disease, rectocele,cystocele, and insusseption which all cause sever pain 24/7, can't sleep, back pain etc etc. Seen 2 surgeons on NHS, neither will entertain surgery even though I've more or less begged them. It seems NHS won't perform surgeries now unless they deem something life threatening, I just keep getting fobbed off despite my test results. I'm now thinking of seeing a private surgeon as NHS don't want to know. I hope you have more luck then I have.
Thanks for replying. I had a transit study also, found to have slow transit, take constella every morning , makes me go the loo but doesn't stop the pain, Let's know how you get on, good luck xx
I don't know, but I was told not to take any medication that would speed up/slow down natural bowel fuction prior to my transit study. Maybe you should stop your opoid meds a couple of days before?
I don’t really have anything helpful to add but I can relate. I have a bad back - severe scoliosis that has progressed significantly since I was a teen. I also have pelvic floor weaknesses. I find that every few weeks I get completely backed up and can’t sleep because of the abdominal pain even though I take Constella/Linzess daily as well as fibre and occasionally Lactulose. I wonder if the back issues are making my IBS-C worse! I wish you good luck in your treatments!
Does opiod bowel mean your bowels are fucked up from taking opiods for back pain? I feel your pain on that count as i have to take codeine for migraines tho thankfully doesn't seem to affect my transit time too much and i am trying to cut down for my gut. That all sounds rather scary though. Hopefully they will fix it.
Re interstitial cystitis, the nhs have no good treatments for this ( a friend had it and took antibiotics for a year to cure). But i read a good paper on this week though the gastro docs will probably be arsey with you if you mention it but it says they can cure some cases of interstitial cystitis with rviafixamim (spelling?) - the SIBO probiotic. I'll find the link...
Yep, my large bowel ie colon has basically come to a halt! I wish I’d been more aware of all the possibilities way back when I started codeine ( don’t take any more, just 2 tramadol a day and occasional oramorph when my back kicks off- which happens if I stand, sit or walk for any length of time! )
They keep telling me to exercise stop all opioids… how can I survive the agony I’m left in? It’s all really getting me down badly.
Thank you for link , I shall have a read.
Why oh why can’t the gastos, urologists and gynaecologists communicate with each other? All these organs are so very close together! The pelvic physio has been the best person I’ve seen through out this process.
Am seeing her again after the pessary fitting , what’s , by some miracle has been bought forward from Xmas Eve to this Friday. Apparently I got put in the wrong in tray!
I hope you manage to cut down/ out the codeine as once it becomes dysfunctional there’s no going back. I may end up with a a colostomy… . Can’t bare to think about that no and am praying the pessary and pelvic floor exercises solve/ help the problem.
The only other option for my back would be a spinal cord stimulator… can’t see that happening anytime soon! Take care x
Have you tried this? I just googled dysfunctional opiod bowel and it says if laxatives dont work then try this: en.wikipedia.org/wiki/Methy...
They shouldn't tell you to stop taking them without offering an alternative. What is the back pain caused by? It seems there is a distinct lack of decent painkillers in our medical system.
I have degenerative disc disease, rescent lumbar scoliosis and severe facet joint issues. Also had my neck fused x 3 ( now fused by 8 vertebrae. So any activity causes me pain- but I trudge on.
I’m trying to reduce my meds, only ever take 2 tramadol a day, plus paracetamol & brufen. I gavtup codiene after years of taking. No withdrawals thank goodness!
The gastro surgeon suggested asking for a spinal cord stimulator… chance would be a fine thing. Haven’t even got an appointment since injections 2 years ago.
I’m tired of fighting with the system!
I tried moventig( v expensive and can only be prescribed by consultant) gave me horrendous lower gut ache.
I'm only taking low doses, could that still happen to me? Maybe i'll ask doctor. Currently I take Together Magnesium at night and i go ok. Even if i forget to take it, i can still go, it just takes longer.
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can you have slow colonic transit and loose stool?
interstitial cystitis 
chronic constipation
Colon transit bowel motility test/study for chronic constipation/ biofeedback therapy/anorectal physiology investigation 
