Could someone please advise, feeling desperate? :(

[1996cat]

Hi,

I’m a 25 year old female and for over 2 years now I have been struggling with IBS-C.

I do have frequent BMs but I don’t feel like I’ve been able to empty completely. I am constantly bloated and in pain from cramps, often high up in my gut (it feels like things are being blocked from passing through properly) and I also feel like my bladder is being pressed on and I’m constantly having to go to the loo. When I do go I feel like my bladder hasn’t emptied completely either. I had a urine test and ultrasound of the bladder which came back normal. I have also had blood and stool tests, which also came back normal. I had a breath test and was told I had mild SIBO and took antibiotics for this but this didn’t help. I later was tried on antibiotics again followed by probiotics, and I’ve also been on mebeverine, buscopan, probably other medications etc which I can’t remember because I’ve lost track of everything I’ve tried. Nothing helps

I was taking laxatives which helped with the pain somewhat but I came off them to take my second course of antibiotics. What followed after a few days was severe pain and cramps - I didn’t sleep in over 48 hours and was crying with the pain. I was put on movicol and within a few days the pain became bearable again but I am still so, so uncomfortable all of the time. I am taking several sachets a day and am wondering if I should soon try taking 8 sachets for 3 days to see if that helps, to try and clear things…

I have suffered a rectal prolapse which the GP didn’t seem too concerned about (he didn’t do an examination though - just looked at a photo I took and confirmed what it was) but I am wondering if this could be contributing to the problem / if I could be suffering from pelvic organ prolapse? My GP hasn’t done any kind of examination.

i have been trying to get a colonoscopy on the NHS for a year but my GP practice always tell me they’ve sent off a referral - but the hospital tell me they never received it I’m chasing them up a lot but I don’t seem to be getting anywhere. I’m not even sure if a colonoscopy will help or what tests i really need. Would I benefit more from an x-ray?

I have tried the FODMAP diet twice and kept a food diary, but no food seems particularly to trigger symptoms. I eat plenty of fibre etc.

I am so exhausted and can’t sleep properly with the discomfort. Can anyone please advise?

[awilso]

Hi, I am sorry to hear about your symptoms, it does sound exhausting, but also very familiar.

I have IBS and get occasional flare ups which are very much like what you are going though right now. I take Prednisone and Iberogast. I also do a course of colonics, this also helps.

I am a gluten free vegan so I also move over to a mono diet of potatoes and cut out all seasonings for a week and this is also soothing. No stimulants like coffee or tea or fizzy drinks, just water and steamed potatoes.

Doing all of that means that I can normally get a full blown episode under control within a week.

I hope you find something in all of that that helps with your situation 🙏🏻

[Oxygen_guy]

My advice is to get back in touch with your GP and ask for another referral to be completed for the Colonoscopy and see if there is a chance of having any other scan that will help with the diagnosis. Just keep taking the laxido or Movicol to help to shift anything that is blocking you up.

[Frasina]

Your colon is possibly pressing on your bladder which is why you are having to pee a lot. As for tests, yes, your GP should be a lot more thorough and personally, I would see a different doctor at your surgery who is more sympathetic to your issues. If the hospital are saying that they have no referral then it is possible that the GP did not send off for one, or you are lost in the system! Either way, you need to be firm with another GP and explain how distressing this now is and it is affecting your day to day life etc.. the other option is to pay to see a gastro person as a one off privately. They have to listen (you get half an hour) so at least they can point you in the right direction and possibly if they also work locally for the NHS they may be able to put forward some tests quicker. Hope this helps.

[diana16]

Hi Cat, this is such a horrible disease and I sympathise so much - I have suffered with it for almost all of my life. I used to take Mebeverine regularly but recently stopped as well as the probiotics and for once my bowels seem to be ok but I have terrible wind! I would suggest asking your doctor for a barium enema as mine showed that I have a tortuous colon, which means it is abnormally long, and this is why I suffer so badly with constipation. I was advised not to get constipated - easier said than done - and so I take Laxido fairly regularly. Don't know if any of this helps

[Riverchick]

Hi cat, Call airs they will find out if your referral was made and if it wasn’t , you can tell Gp you’ve spoken to them and it was never done, if it was done they will chase it up for you.

[Orchid99]

They should put you in for a transit study if you are on so many sachets of movicol, you could have slow transit/colonic inertia, I have been diagnosed with this condition and the pain I get at times is horrendous as well as overflow diarrhoea, I'm on nortriptyline now to try and help but it's not doing much at the minute, I was also told not to get constipated or I could block up so I have to take movicol for the foreseeable future as well as a low fibre diet which does help and I find if I do consume to much fibre I get trouble.