i have had ms since I was 19 and am now 27. I have come to terms with things but my ms is really like a spinal injury and need some advice! I am left with not being able to move my legs which is fine as I am in a wheelchair, I have problems with my bladder but have a suprapubic so it’s fine BUT I have bad bowel issues. I suffer from the normal constipation and impaction which I use to be able to handle as I could transfer onto a toilet. I am unable to do so well I can but not get my pad down and dress up so it results in me now wanting to go out or having accidents!
i am using peristeen but need help from my partner which isn’t ideal and iv run out of ideas. I know when I need to go just can’t unless he’s there so I can transfer on to the loo and help me pull my pad down etc. I’m really contemplating speaking to my dr about a colostomy bag…has anyone got one and if so what’s your experience with it?
This is the relatively unknown and unseen side of the beast. Firstly, see the GP. There is help out there. He or she can explain the options you may have. Contracting MS at 19 is particularly unfair. You could ask about adult social care and get a visit from an OT. I’m sure you know about this already. Because I was referred by paramedics when I was constatly falling over I was fast-tracked-very helpful.
In summary, the whole process needs to be looked at. I’m still able to transfer to the loo due to adaptations and medication has helped. Your husband sounds a real hero.
Strictly speaking, the operation is a colostomy, it basically closes off the part of your intestines that leads to your rectum and the surgeon creates a ‘stoma’ from part of the intestine.
So the bag which adheres to your abdomen is known as a stoma bag. It is much more discrete than a urine collection bag that you have with your SPC.
I have absolutely nothing bad to say about the colostomy. I wish I’d done it a couple of years ago.
Feel free to either post on here or PM me if you want to know anything else about my experience.
Thanks for all your messages. Yeah was pretty hard back then, I was at first year uni and was pretty stressful so that’s life! Social services Ot are involved at the moment and we are looking at a self hoist which I had a week trial with which was amazing!! The only problem is I work full time so it’s all ok hoisting st Home but the major issue is when I’m at work. As I mentioned I’m trying with Peristeen but I need a lot of help and it still leaves me really paranoid and anxious that I’m going to have an accident! I have an appt 2nd October with my consultant so am going to ask about a colostomy bag…people think it might be dramatic but if it’s going to make life better then I think it might be best. As I mentioned I have a supra but was self catheterising for 8 years and I wish igot this sooner lol!! I have another infection at the moment so on two types of antibiotics but this is making my tummy hurt too- never ending lol!! Sue how long did it take u to recover? Also have you had any accidents with the bag? It makes me cringe abit even don’t think I would want to change the stoma bag encase I get it wrong which is stressful! Sorry to go on haha! x
I was in hospital for about 6 days but I’d already talked to my rehab neurologist about going into the neurological rehab unit for a few days after the hospital so I was in there for a couple of weeks as well. That gave me some physio and OT help as well as having visits from the hospital stoma nurses everyday.
Abdominal surgery is always a bit of a problem to get over. But soon after being back home, I was doing my own stoma bag changing etc. So while I rely a lot of my OH, I’m quite self sufficient with regards to B&B.
One of the first times I changed the bag at home was a bit of a Vesuvius moment which required me to yell ‘heeeellpp’, but together OH and me managed. I also had a bit of leakage in the shower one day, which again required a yelled out plea for help. But generally the adhesive is so strong it’s not possible to leak. You need an adhesive remover spray to get the things off, which is a problem I am dealing with as I have a long plane journey to prepare for.
And honestly, nowadays I’m very comfortable with cleaning and changing the bag. Which I am just about to go and do, before I go to bed.