ongoing chronic constipation.. ‘opioid bowel & interstitial cystitis… test results!

[Beakybird58]

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

[grumpyold]

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.

Take care. x🫂🫂🫂

[edwangy]

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.

[Beakybird58 in reply to edwangy]

Sorry to hear of your awful troubles. I’m. In Cardiff..

Awaiting transit study next. Are problems do sound v similar. It’s miserable I know 😢

[Hennen]

hi Beakybird58,

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!