This is my first post, I’ve had MS for about 30 years my first attacks were when I was 18/19. The first 10 years it was RR after that it moved to secondary progressive, I’ve now been in a wheelchair full-time for 10 years, I can’t weight bear or use my left arm, my speech can be quite poor several hours a day, sometimes all day.
For over 20 years I’ve been constipated can I say quite badly constipated, my stomach over the years has become huge and the bowel is massive (jungle drums can be played on it) (I’ve had 2 colonoscopys this year, nothing dangerous found other than a very large bowel and a lot and I mean a lot of POO, my wife has been saying for many years, I’m full of S*** and yes I am.
Just recently I had a reinsertion of a suprapubic catherter and removal of bladder stones, I was told it would take 25 mins it took 105 mins. I knew I had bladder stones but I was shown was was crushed and removed, I’m going into the industry for gravel ling peoples drives.
Well after that I had to use the qufora bed based system (anal irrigation) every day and at least 3 times in the morning session. I take 6 laxido sachets per day as well as 2 other constipation medicines.
My repeat prescription list is 25 and over per month. Does anyone else out there with MS have the same kind of problems, I have. I’m getting very disillusioned with all of the potions as I’m only 49 and I feel that I’ve been left behind.
End of rant, that took ages to type with one finger.
Oh my, you are having it rough!
I’ve had an spc for four years and I have to say, I do like it most of the time.
Like you, I’m a full time wheelchair user, with no weight bearing ability or core strength.
I’m very overweight to boot!
My bowels can be badly behaved, but I use movicol and drink gallons of water to keep moving.
A friend of mine and a member here, Ssuue , will be along soon, I’m sure, to tell you about her stomach/ colostomy, which she is very suited with.
I’m glad you’ve joined us, cos we know how difficult life can be.
Hello 80’s fan
I’m the person our Poll meant. If you do a search on the word ‘colostomy’, you can read my story about my bowel problems over the years and my colostomy. If you’re able to have one I’d recommend it if your bowels are as bad as mine were. And it sounds like they perhaps are. And I’m saying if you’re able to have one, because the surgeon has to be satisfied that you can survive the anaesthetic. Because it’s a spinal nerve block that’s required (or it was for me) and I know that when they started to bring me round I had dreadful spasms and my blood pressure dropped. So they have to be sure you can cope with the operation.
I’ve had crappy (!) bowels for years too. And while I’m able to weight bear and do a little bit of walking even, with an FES and a walker (only about 8 metres a few times a day) I’m not by any means able to walk properly.
By no means is MS for sissies.
Welcome to the forum anyway. There’s lots of us about, all with our various problems and differing degrees of disability. So long as you keep your sense of humour you’ll fit in well here.
It’s good to see I’m not alone with these complex problems, but I wish I was so no-one else had them. I can put up with being in a wheelchair, didn’t like not being able to weight bare, loosing the use of the left arm/hand was bad as well and then after the wheelchair. bowel and bladder problems as well as worsening depression/anxiety which I think stems from not being able to do the things I could up-to my mid 20’s.
I was told I wouldn’t be able to have a colostomy as my abdominal wall wouldn’t support the stoma and the operation would be dangerous for me. So it looks like I’m stuck with this huge bowel my waist was a 31 inch (11.5 stone)in my early 30’s now at 49, its around 46-48 (19 stone) and I don’t eat a lot.
The huge bowel puts a lot of pressure on my urethral catheter causing it to block every week, next week they are going to blast some bladder stones and re-insert a suprapubic catheter (I’ve had 4 suprapubic’s done in 5 years after each one fell out. I wonder how long this one lasts for.
Anyway that’s enough about me, tell me more about what you hate about your MS.
What really gets up my nose is constantly having to say “Thank you”.
My catheter just blocked this morning, the district nurses put a new one in, but before that I passed some largish bladder stones. I’m currently having a new urinary catheter every few days. Only 4 days to go until new supra pubic is being refitted and bladder stones (there were loads 6 months ago) are being crushed.
Well catheters are bloody hell. And it sounds like bladder stones are too.
Today I hate my bladder, after having my SPC removed, due to infection after infection, today I am forever bound to the loo as if by an umbilical cord. I can’t keep using self catheters, my urethra feels like it’s being scraped by sandpaper as it is (due to the current UTI. So I’m desperately trying to ‘go’ normally, which my sphincters wouldn’t do before the SPC. So I’m each time squeezing a teaspoonful of wee out.
Bladders are gits. As are catheters. And stones. And bowels. (Sorry to say this, but stomas are not! I’m sorry you can’t have one.)
So really Sue, you are no better for having the spc or not having it…if that makes sense.
Might you go for the appendix attachment then?