SORRY FOLKS…THIS IS A LONG TALE BUT VERY URGENT & PAINFUL PROBLEM!
My bowel isn’t working properly. Worse now since 4 recent consecutive infections.
Severe constipation for months, incontinence nurse suggested Laxido drinks, Quofora self irrigation plus manual removal. Then occasionally I had to rush to the loo with diahorea, often too late!
Biggest problem is NO sensation due to spinal lesions. It means I soil without knowing. This then causes excoriated skin & amonia from urine & faeces sticks to the highly sensitive & very painful skin.
Impacted faeces in upper colon led me to see a Colonic Irrigation specialist. 1st session ok but not brilliant. 2nd time no results. 3rd time only returned the water inserted via a machine (which had auto cut off to prevent over filling.).
I lay on the bed at last Irrigation, silent tears dripping onto the pillow. The highly experienced operator massaged my tummy & said too much nerve damage! She recommended a Colonoscopy under anaesthetic & said no more appts with her until the problem has gone.
Hubby agreed we’ll pay to see a Consultant privately. I rang my GP & he said:- “a Colonoscopy won’t see the nerve damage caused by your PPMS so you need to see a Gastroenterologist”
There are 2 local consultants but I can’t find any info about their MS experience. So now I’m concerned I’ll be going from pillow to post, yet again, and achieve nothing.
Can ANY of you help or advise on seeing a gastro or whatever specialist who CAN deal with spine lesions from ppm s and sort trophy bowel out?
Again, I’m SO Sorry for nattering on & on. Chrissie x
Aww Chrissie I’m sorry I felt the panic in your message it’s my worst nightmare not being able to go. I’m sorry I don’t have any advice there’s always someone on here that will. Take care Love and hugs Michelle and Frazer xx
I would suggest ringing the consultants’ secretaries for advice. The secretaries may not know, but can probably speak to the consultants and find out. And if not, it’s just a wasted phone call, which is a lot cheaper than a wasted appointment. But I suspect they can help.
I’m not PP, but SPMS, but have similar (but different) issues with my bowel.
Essentially it’s severe constipation. So I’ve been doing digital manual stimulation (DRM) for about 6 years. I take Movicol everyday, have tried everything from mini enemas and suppositories to Peristeen. My problem is that my sphincters don’t work. So I can’t have any kind of a bowel movement. And nothing like Peristeen works because the water just doesn’t come out, instead bowel impaction got worse and the water just got stuck. So I reverted to DRM and now I’ve got internal piles and a prolapse. This in turn seeps, giving me a nasty rash all around the anal area. So I’m constantly using nappy rash creams as well as pile cream. I had a sigmoidoscopy (a surgical investigation whereby camera is sent high up the bowel and into the intestines) recently (2 months ago) and the piles and prolapse were simultaneously ‘banded’. They came back. I realised the prolapse was back a few weeks ago, so the band probably lasted a month. But the real seepage and rash has only been back for about 10 days. It’s bloody horrible. And a bit horribly bloody too (the colo-rectal surgeon asked me 'does it sometimes bleed like you’ve ‘been shot’? The answer was yes!)
So I’m now waiting for the date to have a colostomy. I’ve had a lung function test and a meeting with the anaesthetist (apparently when you’re low in mobility they want to make sure they can give you sufficient anaesthetic and still take you off the ventilator afterwards). So now it’s just the operation appointment which should be within the next few weeks.
The colo-rectal surgeon initially suggested to me an option called a PEC tube. Essentially it works like anal irrigation (i.e. Qufora or Peristeen) except they make a hole through your abdomen high up in your intestines through which water is added to wash out all the faeces. So instead of the water being added from the bottom, which sounds like it’s increased your impaction rather than relieve it, it’s added from the top. Basically it wouldn’t work for me because my sphincters won’t open, so adding water from the top or the bottom is irrelevant, it stil won’t come out. But it might be a solution if your sphincters do open, maybe instead of being referred to a gastroenterologist, you need a colo-rectal specialist?
It’s a miserable problem and you have all my sympathy. I used to be quite private and even a bit ‘prissy’ about my bowels. But nowadays, I’ll talk about the problems to anyone. It becomes a necessity with all these types of problem. Right now I can’t wait for the colostomy, I’m looking forward to not having to stick a finger up my bum several times a day, sometimes for no good effect.
Hi Christie I have an appointment with a Stoma nurse next week, after seeing a consultant about my bowel problem, I told her I have been using an Peristeen system for 10 months, but still having to self evacuate my bowels which causes a lot of blood and I have loads of internal piles and I’m very sore,she said my muscles have given up just like my bladder hence the reason I have a SPC, she suggested I would benefit from a Stoma, so she made me an appointment to see the Stoma nurse for next week. So I will see what the next step is, anything is better that what I have now. I hope thing improve for you.