I have ppms and have ‘just got on with it’. Its life and i gotta deal wìth it.
So, why am i here?
Ive been ill recently and MS has seemingly left me much much less able.
For example i havent stood up now for 36hrs and slept in my wheelchair last night (a hotel whosr bed i couldnt get out of and had to be manually lifted to the wheelchair. Rather than repeat it on the last day of holiday break i told my partner to help me get comfy as i was staying where i was.
I haveaurethral cather and have been waitìng for word ofsurgery for a supra pubìc one since Oct2024.
Well (sorry about post length) now imiving in fear of having to get up to poo.
Im thinking stoma. It makes total sense and now I dont know what the heck to do to get one.
Any words of advise or prior experiences are very very welcome.
Hi,
Sorry your life is being occupied by this kind of stuff getting in the way.
I don’t have personal experiences, but…
Have you been in touch with your MS team about this? Treating symptoms is absolutely their role - bowel included. And is there a local continence team where you are?
I came across an interesting video by Prof Anton Emmanuel of University College London Hospital. He’s a consultant on gastro-issues and how they intersect with neurology. You can find him talking about MS bowel problems here. https://www.youtube.com/watch?v=XqiIpmoVQR8 or here https://www.youtube.com/watch?v=ZSqxH4LoS0A.
Perhaps you could ask your GP to refer you to him? Or someone like him? So you get a real expert to take you seriously and explore your options.
Hi Leonòra. I could have wept at your response. Thank you. It means a lot to get advice and help.
I am gòing tò ring gp in the morn and askfor a phone consultation.
I need to tell someone whats ùp and thats their job, after all.
I have talked to MS nurses who referred me to our bladder and bowel service. Wheni rang them i was told ’ we dont do that, you have to ring the hospital ’ when i asked who, they told me urology? With a question mark.
So the balls in my court. I will need a poop in the next couple of days so im armed with the truth that ill need help. Even someone to wipe my bum!
Yes, well I sympathise, having ulcerative colitis. But I don’t (yet) have mobility problems on top of it.
Not good enough to be passed from pillar to post. Too often people progressive MS seem to get dismissed as if, well, nothing we can do, not our probem… it absolutely is. MS is not just DMTs.
Perhaps worth being quite direct with your GP i.e. telling them you’d like referral to a consultant, whether that one in London or more locally. UCLH website for example will have a referral mechanism on it: perhaps give them that sort of link, make it easy for them. You really need to bypass the “not our job” types - hope you find a proactive GP.
You might want to check your rights to patient choice, out-of-area referral if there is nobody good locally - in case you need to point that out too.
Not sure if this is of use or not but I once had pretty bad Covid during which my MS symptoms were much, much worse and I couldn’t walk ( once fell on the floor and could only get back into bed by crawling and hauling myself onto the bed). It took months and months for the MS symptoms to return to something like normal pre Covid levels. Could you be experiencing something similar? Illness does make MS symptoms worse for a while