Post stoma chronic discharge

5 replies
134 subscribers
267 views

Please could anyone offer my brother some advice. Stage 4 bowel cancer who had bouts of diarrhoea every 30 minutes until he developed an obstruction. After the hospital tried a stent which relieved the obstruction but did nothing for the diarrhoea. Eventually they agreed to give him a stoma which essentially worked however he has been left with bloody mucus being produced by the tumour and is back to having to go to the toilet every 45 mins. He has very little sleep now and has only z few months left to live and feels he is unable to enjoy any of his time left as he is tied to the toilet.please, has anyone else experienced this and if so how have you dealt with it? He does wear a pad at night but is woken up with the urge to use the toilet and so does get up to go. He is only 57. Thank you in advance for taking the time to reply and read. He would consider anything, dietary/ supplements or even surgery. So far the cancer nurses answer stoma nurses haven't been able to offer any help. Thanks

Kareno62 15 days ago

Hi King radiator I’m so sorry to hear that your brother is having this extra problem to deal with. Unfortunately the bowel continues to produce mucus even though there is no stool to pass - sone people have it occasionally and are able to sit on the toilet to pass it but others seem to get it to a greater degree. I know I’ve seen posts on the Ileostomy board about it before now but can’t remember seeing any suggestions to prevent it but you could try copying your post onto the board to see?

Ileostomy, colostomy and stoma support

You could also try the Ask the Nurse section? Is his stoma output ok?
community.macmillan.org.uk/.../ask_a_nurse

Sorry I’ve not been much help but I really hope it settles down for your brother when he’s going through so much already

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

King radiator 15 days ago in reply to Kareno62

Thank you so much for your reply. I'll repost on the other board to see if anyone has experienced it and how they have found to deal with it. I'll have a look through too, to see if anyone else has posted about it. Thanks again :)

Dulac 15 days ago

Hello King radiator,

Just questions I am sorry to say, but the answers might prompt a response from others:

Does your brother have an ileostomy or a colostomy?

Does he have a single-use or drainable ostomy pouch?

Does the pouch actually fill up every 45 minutes?

Is his urge to use the lavatory regularly real or imaginary?

Is he able to eat solid food?

Does he drink plenty of water to rehydrate?

Dulac

King radiator 15 days ago in reply to Dulac

Hi, thanks for your reply. It is a colostomy above the tumour. They won't remove the tumour ( he was due to have it out last year but due to mix ups at the hospital it didn't happen and by the time they sorted it out the tumour had grown and he needed more chemo, the tumour kept growing during chemo and he's now been told its inoperable).

Not sure of the correct term but he empties it 3 times a day.

The leakage is coming from the tumour and coming out of his back passage. He is having to deal with that every 45 mins. The stoma itself is working well.

Unfortunately it is real. If he ignores the urge it becomes painful and he will end up with a mess in his pants. This is emotionally the hardest part for him to cope with. Its bloody mucus.

He eats and drinks quite well most of the time and the stoma is working as it is meant to.

I hope this helps and any advice would be gratefully received. He's too tired right now to engage himself right now and unfortunately I am several hundred miles away, but trying to help as best as I can.

Dulac 14 days ago in reply to King radiator

King radiator,

Thanks for that and it makes your brother's condition easier to understand, The stoma seems to be the least of his problems and the rate of emptying is not excessive from what others have said on these pages. I can only hope that a contributor here has the experience and knowledge to suggest a way to alleviate your brother's discomfort and distress. Presumably his GP is aware of his circumstances? I tend to regard GPs as the gateway to other services within the NHS, rather than contacting specialists directly. I agree with Karen's suggestion to contact the Macmillan nurses, particularly as travelling is perhaps an issue also. Someone out there will know the way forward, I am sure.

Best

Dulac