Living with a Stoma
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New to this site

New to this site

Hi everyone ,

I have just joined health unlocked and here is my profile.

I am a 73 year old male reasonably fit ,play golf on a 16 handicap ,still work a bit (handiman) and fish and shallow depth scuba dive .

I had u.c.which started in 1979 and after 21 years of sometimes dreadful and sometimes in remission I opted for a proctocolectomy with a J pouch resection.

This proved to be very difficult with fecal incontinence every night ,bum crack ,and burnt bum which was very painful (stinging)

My sex life was reduced but with a great partner we were content .

I had experienced a illostomy with a stoma (for 3 months)as part of the j pouch takedown so after long deliberation decided to go for a permanent illostomy with stoma and end all the fecal incontinence.

So we went ahead with the op and named the addition to my body JOEY .This was 2 years ago and like so many have on going mucus and light poo to deal with down the back passage .

I don't have any problems with the Salts bag and ring and change it every 3/4 days ,these are provided free by our district health .

I have read all I can regarding this mucus problem ,consulted with my surgeon,but there seems to be no remedy for this yucky ongoing problem.

I am contemplating IRRIGATION (up the back passage) which I used to do when I had the J pouch ,and wonder if any others have used this method ?

In all my life is OK and I look forward to another 20 years or so of golf ,fishing,gardening and some diving (for scallops)

I has been a revelation to find this site and others including Colostomy UK.org which has extensive information about our problems ,but no answer to leakage .

Good to have this contact

Bobaleno NZ

2 Replies
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Welcome to the site, like you I have been a long term sufferer of UC, first 'reared' its ugly head in the summer of 76 but managed to avoid surgery until April 2016 at age 63. I had been advised that there was a greater than 60% chance of developing an aggressive cancer within the next 5 years so I had a panproctocolectomy with ileostomy which involved removal of the entire colon, rectum and anal canal. I have read in one or two places including this site about people having issues with mucus etc down the back passage and was initially a little confused. Since my surgery I have never have any of the those symptoms, mucus etc and was struggling to understand how this came about for some people. But my ileum has been brought out through my belly to form the ileostomy and all my output goes from the ileum into my bag, no evidence of mucus! Logically the answer is no colon, no rectum, no back passage (all removed and I have been sewn up) so there is no tissue there to create the mucas and no where for it to leak to. The slight mystery remains why do some people have poo, I can understand the mucas being created by the remaining back passage if it has not been removed but I would have expected any poo to be exiting via the ileostomy into the bag.

Having read that so many people having issues with mucas and poo, don't entirely understand why surgeons don't just go for the 'Full Monty' ie removal of the entire colon, rectum and anal canal problem solved! (I think) Not being a medical expert I don't know if there may be some medical reason for not doing it all but from my experience it is the best solution. I had been told that the surgery involved a small risk of loss of sexual function, I suppose poking around in that general area there could be a danger of nicking a nerve etc, but I am delighted to say that didn't affect me. I have only had a couple of issues since surgery, I have developed a parastomal hernia which I understand is quite common and from time to time I develop a bit of a bellyache, could be I hadn't chewed enough. Has your surgeon given you any reason why they didn't go for the full removal?

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Hi Bobaleno

Having had a full rectum and colon removal I've no discharge problem from the rear. I'd read about this issue and had discussed this briefly with the surgeon on the morning prior to my surgery.

If you are in the UK there are a number of different organizations available who will arrange to supply you with appliances, the thing is there is a choice of different products out there that you can try. Samples are a great. There is a free magazine too you can find that relates to our condition. That's a good source of info.

Cheers B

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