Can anyone help? Problematic bowels for years but have managed with Movicol and suppositories but mobility and dexterity very bad now so seriously considering colostomy. Anyone had any experience with this? I have seen surgeon and stoma nurse and been told all relevant info but still I keep going backwards and forwards about decision!! Bad things…Having an open wound in tummy, bags falling off, leaking etc etc. Good things hopefully more convenient and controllable, no getting on/ off loo or sitting on it for one hour every morning etc etc. Anyone with progressive MS has this op done??
Hi, I dont have a colostomy, but I do have a supra pubic catheter coming out of my tum, with a tube for urine collection into a bag.
Now, I do think having a colostomy is a bit trickier. When my spc bypasses now and then, it is inconvenient and a pain, but it is easier to conceal, (as I am a full time wheelchair user) and sort than I imagine a colostomy would be.
You`re right to take a long time deciding, as it will be a bigger operation and aftercare could be more difficult. Of course, I dont know any of this, these are just my thoughts.
On the positive side, yes, what a lovely thought, not having to sit on the loo and wonder if anything is going to happen.
I am doubly incontinent and need pads to catch the spillages! I need movicol daily, but can get too loose as well.
pollsx
This is something that l have been thinking of doing before my mobility gets any worse - and the older l get too.
People l know who have had to have a colostomy - have got on very well with it. Hopefully, it is only necessary once a day - unlike a Supra -pubic catheter that is draining all the time.
Usually the op is reversible - like th SPC.
l have suffered with chronic diarrhoea for most of my life - but since taking lots of vitamin d3 [Dr Coimbra’s Protocol for Auto-immune Diseases] my bowels are being much kinder to me. lrritable Bowel Syndrome IBS. is a auto-immune disease. Also, trying to be gluten-free has made a big difference.
l am sure you will get lots of advice from specialist nurses to help you decide - l certainly would have it done.
Hi, I had an ileostomy about fifteen years ago after major surgery . I managed the bags quite well (sorry if tmi but the stuff from a colostomy is much firmer) and only had one major leak which I have to admit wasn’t pleasant. I’m now rather wishing I hadnt had it reversed now as my bowel problems are getting worse due to MS. I’m having a urostomy done early this year as I can’t self catheterise properly any more (mainly as I also need a kidney transplant). You need to talk to specialist nurses if you can as this is major surgery which even though it can be reversed (again by major surgery) is not something to be undertaken lightly.
Not sure what you mean by “open wound” - the stoma itself always looks pink as it is bowel but everything around it heals to normal skin. It may take time to get the correct bag for you (the stoma can alter in size as it is healing ) but your stoma nurses should be available to help, so I wouldn’t worry too much about them falling off.
It took me a long time to get used to the stoma/bag situation (and I know it will again with the urostomy) but you have to look beyond the initial worries to the easier life afterwards (if that makes sense!). Good luck with whatever you decide.
3 Likes
Yes, none of this is pleasant, or what we would choose to have. But if life with a disability can be made any easier , then we need to give ourselves the chance to find improvements where we can.
Just weigh up the pros and cons , get professional, as well as personal experience advice and study everything well, before making that very important decision
Pollsx
1 Like
Thank you for all of your comments. I already have a suprapubic catheter, have for years…a lifesaver!!! I also already take Vit D3. I am not sure what will be worse, being a two bag lady or spending an hour on the loo every day! Stoma nurses have been very helpful. At the end of the day I’m the only one who can decide. Also we are going on a Med cruise beginning of April and I don’t think I’ve enough time prior to the cruise. Oh dear., decisions…
Oh Wendy, poor you with all this going round and round in your head!
But as an already number 1 bag lady, you know the benefits of that, so can already see the benefits of being a number 2 bag lady!!!
I`m a fan of cruising, having had 2 minis and a 3rd happening in April. They cater so well for my needs as a full time wheelie. Are you the same?
I hire equipment from Mobility at Sea, who deliver an electric profiling bed, pressure care mattress and commode/shower chair to my accessible cabin, then collect it at the end of the cruise. Do you need equipment like this?
It does sound a bit soon to have the op and be recovered enough for your cruise. But I hope you enjoy your holiday and then make the right decision for you about the colostomy.
pollsx
Yes, we’ve cruised a few times now and it is very wheelchair friendly. Personally, we preferred jumping in a car and heading for the continent with a small suitcase but sadly those days are gone!! Yes I tried to hire a profile bed and a standing hoist but they charge the earth!! Do you take a carer with you? I suggested they have a ‘bank’ of carers on board - it’s going in their suggestion box!
yes, I think the holiday is too close now so that makes that decision for now - probably best from insurance point of view too. Decisions decisions…
Hi, yeh I know the equipment hire is costly, but I can’t manage without any of it.
Yes I take a carer with me, again can’t manage without!
I doubt the cruise companies will ever provide carers! Or was that meant tongue in cheek?
Pollsx
I had a colostomy before I got MS so my perspective may be different. But I can say that life with a colostomy is much more pleasant than life with horrible bowel problems. I have travelled widely and find mobility issues a more daunting barrier than wearing a bag. And don’t worry about it being noticeable, I wear bathing suits with a little ruching and all is fine.
Good luck.
Hi Wendy
I’m having an SPC soon. And am also looking at surgical means of fixing my terrible bowels. There is a bit of me that thinks I don’t care how many bags I have to carry round with me, my world will open up if I’m not ruled by bladder and bowels.
My colorectal surgeon suggested a PEC tube, where they make an opening high up from the abdomen to the bowel and water drains through the bowels into the loo, taking all the faecal matter with it. I wasn’t anticipating this being suggested and didn’t have a clue about it. Once I realised what was involved, and discussed it with the Bowel and Bladder nurse, I realised it would be very unlikely to work for me since Peristeen didn’t work. (The problem is with transit plus stupid sphincters that just don’t work, so a gravity thing might help with the transit but won’t make the sphincter open on cue!) Plus, a PEC tube would still mean an hour sat on the loo!!
So I’m having a sigmoidoscopy in a few weeks and will be then discussing what might work. It seems to me that the only thing that will work is a stoma / some kind of ostomy.
I truly think that for me it’s probably the only thing that will work. But obviously every decision like this is a personal one.
It does seem that maybe you should go on your April cruise, take the next few months to think about it and then arrange to see your colorectal surgeon after the cruise when hopefully you’ll have made a decision one way or the other.
Sue
All these things that we never, ever dreamed would happen to us, are becoming real.
As scary as they seem, they WILL improve our lives.
After the recovery and adjustment periods, let’s celebrate the new lease of life they allow us, like leaving the house and not worrying that we need to get back asap for the loo!
It’s gonna be good.
My SPC taught me that.
With you all the way girls!
Lots of love Pollsx
1 Like
Hello
in mid-February I plan to have a colostomy to pair up with my suprapubic catheter which I’ve had for years but there seems to be no particular MS information of what drawbacks that might be good to know in advance. Maybe it’s the same for everyone who’s facing this decision, stepping into the unknown with elective surgery and not knowing whether it would be good or bad – without getting too philosophical, life has both good and bad elements so I expect a stoma will be the same. It will be great to hear if anyone has any views on this. I am completely fed up with my bowels and it would be great to get rid of or at least reduce the problems. Thanks, Stuart
Stuart - Will your colostomy be reversible ? – lt is something many of us are thinking of having done. Most 'uti’s are caused from bowel accidents - more so for ladies - it is a design fault.
l am so glad l had my supra-pubic cath done - over 20yrs ago. And a colostomy would make me even more independent and able to travel further.
Best of luck Stuart - let us all know how you get on. Everyone l know with one is ‘happy’ with the outcome.
Prevaricating for weeks and weeks about whether I should have a colostomy or not, it’s now been in place for two weeks and there is no doubt in my mind that it was the best thing to do. Life is much easier and, because I cannot look after it myself, my two carers are brilliant. What was all the fuss about! We really do put ourselves through some silly places. Okay, there are teething problems but these are easily overcome. It just makes my limited life so much better. Best wishes to all, Stuart
3 Likes
Thanks for this Stuart, I’m now recovering after my SPC but am planning to have a colostomy later this year. To be honest the sooner the better. In retrospect, I wish I’d done it the other way round because dealing with extremely badly behaved bowels whilst coping with the SPC isn’t easy. And I could’ve lived with an indwelling for a while.
But hooray for you. I’m glad it went well and that you don’t have to deal with the bloody bowels anymore. I know there are things to get used to but I think it’s going to be worth it for me too.
Sue
That`s it, guys and gals. Keep remembering the problems before our spcs and in some cases, a colostomy too.
These things sound horrendous, but when we already live with almost imposible problems, ANYTHING that improves our day to day living, HAS to be worth the initial teething problems.
pollsx
Hi Wendy
Have you tried using Peristeen bowel irrigation system. I am PPMS and have used this for about 8 years now.
mary
I am so thrilled for you Stuart. I am still sitting on the fence! Should I, shouldn’t I? Keep worrying about ‘big bowel op’ as one of the nurses said! I actually had a date of 4/4/17 but have had to turn that down as we are off on holiday 9/4/17 and it wouldn’t have been enough time to recover - was originally hoping to have it done ready for the holiday, so still spending up to an hour on loo every morning at present. I’m using another routine at present, one pack Movincol, two Senna tabs. Two Movicol was too much!!! See how I manage away.
Stuart, I hope your recovery continues well and am thrilled it is making your life better. I will keep you posted on my decision!
Wendy
Mary, yes I tried Peristeen a few years ago now but didn’t get on with it, left me feeling like I wanted to go to the loo all day. Maybe I should have persevered a bit longer. So glad it worked for you.
wendy