Ileostomy

Hi NickyP 

I have a colostomy rather than ileostomy but yes, still get the sensation occasionally of needing to go to the loo! It’s like a phantom pain/feeling-people who lose a limb for example may still feel something though the limb isn’t there and I’ve seen lots of others with a stoma experience this too. We still have the memory of how it used to be.  I have also got a urostomy and so don’t have a bladder but still sometimes feel the need to go for a wee in the old way! 

I’ve had my stomas for 3.5 years and still get these feelings but not often. It’s strange but not a concern. I have an end colostomy, so nothing would ever come out of my rectum, but with other types of stoma it is possible to experience mucus or some poo the normal way. 

Best wishes for your chemo starting-I know the chemo tips thread in the bowel group has been updated with lots of useful advice so that might be helpful for you to have a look through. 

Sarah xx

Thank you Sarah x

Hello NickyP,

I experienced the same as you and I was told that it is a common experience. I didn't realise the extent of mucous producing organs in the body and our digestive systems fall within the category. The system couldn't work without it. It is a lot more than a runny nose! I have a loop ileostomy and - following the resection of my rectum - I ended up with a second stoma to terminate the colon because it couldn't be joined up to my rectum again (too much scarring). In principle it sounds quite simple. The ileostomy does all the work, my rectum is redundant and the second stoma acts as an outlet for any small amounts of mucous from my colon that needs somewhere to go. Post-op I had several months of feeling the urge to use the lavatory and in fact the rectal stump continued to produce mucous on its own account. The amount passed was tiny but the sensation of 'needing to go' felt as if everything was back to the old days. The feeling eventually diminished and disappeared but reappears for a couple of days every now and again. Curiously it occurs when I have a runny nose, or after a colonoscopy. I look upon it as a sign that everything is working OK and this is the new normal. Don't forget the exercises for the pelvic muscles once the surgical disturbance has fully recovered (and keep drinking plenty of fluids).

Thank you, it is really worrying when it happens especially as no information was given about this.

thank goodness for all the support on here

dulac I’ve not been made aware of pelvic exercises either !
and when we’re you made aware that you couldn’t have the reversal 

take care x

I discovered the pelvic exercises in one of the booklets I had been given by the hospital. Quite simple.

In fact I have been offered a reversal of the ileostomy on two occasions, by the surgeon, but I declined as I couldn't see the health benefit after putting the team to so much trouble. Also, there is always a risk associated with surgery and I believe "if it ain't broke don't fix it". In addition I took the view that, with a waiting list of around 7 million, the NHS's limited surgical resources would be better spent on saving someone's life. An ileostomy pouch is a small price to pay for being rid of a troublesome tumour. Purely personal reasons I know, but I am happy the way things are (and I am well-past the vanity of youth stage)! When I left hospital the consultant said "go home, eat, drink and take exercise" I do.

That is a great way to look at it all

ive had a few blips with mine but I suppose it’s early days and it will settle, I’m finding the food quite limited being a vegetarian but I’m slowly finding new ideas from the group

thank you again for the advice 

Hi NickyP. Hope you don’t mind me jumping in but the exercises are in pages 24 and 25 of this booklet if it helps?

https://bowelcancerorguk.s3.amazonaws.com/Publications/RegainingBowelControl_BowelCancerUK.pdf

Take care

Karen x

Fab, thanks Karen.