Forum

possible colostomy

I have been having a lot of bowel problems, and there is now talk of me having a colostomy. I have a referral to see the consultant. I feel really queasy about the thought of coping with it. As I am in a wheelchair my husband may have to help out(I don’t think he realises that yet). He can cope with cleaning up when I have accidents but he is not too good with surgical things. Is there anyone on here who has had this procedure done. I would be grateful for any information from someone who has experienced it, I have been given a leaflet but it’s not the same.

Muriel

I work with people who’ve had colostomies and subseqent stomas. There’s lots of information on managing the stoma afterwards on YouTube.

I’m working with a lady at the moment who had a colostomy due to cancer and is probably 3 - 4 weeks since surgery. She’s coping fabulously well. The stoma nurse is still visiting every 3 days or so to monitor the healing process with the stoma and has prescribed different types of bag on each occasion. There were initial teething problems with getting the most appropriate bag (this is quite a large lady and due to rolls of fat, it was difficult initially (until we had the right bag) to attached the bag firmly and she had some minor leakage - all resolved and fine now!!

The changing process is very quick and easy and everything is supplied by the stoma nurse - our lady was discharged from hospital with a small blue case with everything she’d need inside - bags, disposal bags, sizer (for cutting the hole in the stoma bags), adhestive etc

Any questions please feel free to PM me

Muriel, Sorry to hear this - l did wonder if you had tried the Peristeen system - apart from pwms it is used successfully by wheelchair users [including wheelchair athletes]. l have no control of my bowels - and it was suggested to me to have a colostomy. But as l already have a ‘spc’ l did not want to be a double bag lady. l contacted Coloplast about the Peristeen system and they were very quick at coming and showing me all about it. And it has been the answer. l did use it every day for the first month - then gradually less often - l think it helps retrain the bowels. l know most folk with one only use it 2/3 times a week. lt is all done sat on the loo - takes about 30mins. lt might be worth trying before you go down the line of a colostomy.l think the colostomy is reversible.

All the best Muriel - hate this side of MS - its the worst for us - but invisible to outsiders.

Fx

Hi Muriel, oh I know love, these things just peel away at our self image and confidence.

But I am now considering an spc, and remember how badly I got on with the in-dwelling type.

I have seen here and know others, who have a colostomy bag. It takes some getting used to, but once you have, just imagine the benefits…going out, struggling to get to the loo in time etc.

Thinking of you.

luv Pollx

Hi Campion

I did use the Peristeen for about 6 months but had to give it up due to diverticulitis. This was about 3years ago, we have gone down all the roads possible. As you say Poll I will be able to go out again with less worries. I have a spc as well so that concerned me a bit. The nurse said it can be done keyhole in some cases. When I see the surgeon he will examine me and say which is possible. It’s not like me to get depressed I am usually out and about in my wheelchair.

Muriel

Good for you Muriel, your attitude is admirable!

luv Pollx

Hi Muriel I do feel for you I am about to have a SPC fitted and that was a huge decision for me. Like Poll says you must think of the positives of a colostomy, you will adapt to it just like you have done with your SPC and going out will be far less traumatic for you not having to worry about urgency etc! Thinking of you Linda x

Thanks Linda and Poll

I had my SPC done 6 years ago after having an indwelling catheter which I hated. There are certain parts of your body you don’t want people shoving tubes up, and that is one of them! I now just have a tiny hole below my navel. It was done so quickly, one minute you are having anaesthetic and the next minute you are waking up. I went in one morning and came home the same night. Main thing to do is keep the site clean, I just use baby wipes, and drink plenty of water. I like tap water so I just have a screw top bottle with me all the time. Your urine should be straw colour. I also prefer to have a leg bag because I am in a wheelchair, otherwise you can have a flip flo valve. This means the catheter is fitted onto your leg with a strap and you open the valve up to empty your bladder. We used to go to Steam Rallies so I found it better to have the leg bag then I could sit near a tree and open it discreetly. Better for when you are in the car as well, just carry an empty plastic milk container.

Muriel

Many thanks Muriel. I know what you mean about tubes being shoved in our orifices! I hope my SPC is fitted quickly as you have described. Linda x

Just had a little chuckle wondering how that tree is doing?

luv Pollx

Hope I am not intruding here,I dont know much about these things but just wanted to say my cousin, 62, same age as me, turned up at a family gathering looking a million dollar’s, really she did. Couldn’t believe how fantastic she looked as I knew she had been so ill a few years previous.I can’t remember what the matter was now, but she was in a lot of pain with it. She said it was the best thing she had ever done, she was back working, had a ‘boy friend’ :wink: and felt fabulous. She looked very glamerous and you wouldn’t have known she had had ‘every thing taken away’ as she put it.

Jash