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distressed with ileostomy

38 replies

FabulousGuineaPig · 18/01/2019 06:27

Haven't slept all night and I'm feeling distressed. I've had an ileostomy since the age of 28 and I'm now 46. It came out of the blue. i'd only been ill for a few weeks not years of colitis like most people. it's a long story. Believed it would only be for less than a year then would have it reversed. Delayed because the op can cause infertility. got no advice Eventually got reversal operation 9 years ago and ended up with a combined vagina and rectum! (fistula after op) 2 major ops to fix. Didn't work been waiting 7 months now for another major op to fix and finally get rid of stoma but surgeon being not hopeful. Can't wear hardly any of my clothes for years. never had a relationship. haven't been in steady work since 2004. get up all night to ampty bag for last 13 years. Exhausted from lack of sleep. Nearly battered the stoma to death tonight. lots of blood. happens often. I'm fed up of everyone saying how its given them their life back and most peoples reversal works fine. Its taken my life away. feel like jumping off a cliff. Help.

OP posts:
newidentiy · 04/02/2019 11:07

Hi I had to reply as I have been to some extent where you are.

I had an emergency illeostomy 6 years ago, I was diagnosed with Crohns very late and was very ill with blockage and perforated bowel so had emergency surgery and woke with a stoma.

I am very fortunate in that I had a successful reversal after nearly a year but that year was the worst year of my life.

I too struggled with hearing people say how their life continued as normal and it was best thing ever for them as that was not my experience at all.

I had constant leaks, my bowel nurse at the hospital was worse than useless and like you could not wear my normal clothes. I also slept every single night sitting up against 7 pillows as if I tried to lie down the bloody thing leaked. I spent, like you, a lot of the night emptying it so was constantly exhausted. I would be screaming with the pain as it stung so bad and was leaking yet again.

I am sure you have lots of tips, etc after so many years of struggling but I will post all of the things I tried anyway just in case any of them are new to you.

You need to eat regularly, little and often as this helps to thicken up the flow. White carbs helped me, all the bad things as we are normally told. White toast and mashed potatoes were my go to foods.

Eat marshmallows and jelly babies as these for some reason also help to thicken flow. Also apple sauce helps, a couple of spoonfuls a day.

I wore like you, one pair of leggings which were comfortable but I tried to buy nice tunic type tops which were long and loose. In the summer long, loose maxi dresses.

I found that there were so many different types of bags available and ways to build the bags up so that there was a better fit. I learned this from the internet and many hours of sobbing in desperation at the crohns helpline. My hospital were absolutely useless.

www.salts.co.uk/ is the company which I switched to for supplies. They were fabulous. A nurse came out several times and spent time talking about my issues and suggesting different options. She showed me that my bags had been the wrong size hole so changed that and we tried different bag options.

There is also a thickener which you can put into the bag which makes it thicker so reduces leaks slightly. It is like a tiny teabag almost and used to put 2 or 3 in. I can't remember what they are called but come in a big white tub.

I know that this probably doesn't help much but I have been where you are now and felt the same and it is a dark and lonely place. I have blocked out so much of that time of my life.

I know it is difficult but please stop hitting the stoma as this will obviously not help. If you hate the look of it there are also covers which you can get, from ebay I think. I had one as like you I couldn't bear to see it and what was in it.

I wish I could do or say something more to help but I know it doesn't help but if there is anything even just talking about it please message me.xx

newidentiy · 04/02/2019 13:02

@FabulousGuineaPig - daft as it seems as well but I always wore a nightie to bed but with really big granny underwear which covered the bag completely and fitted over the top of it, 2 sizes bigger than I normally wear as this seems to hold it in place a bit more.

Kittykat93 · 04/02/2019 15:44

Op - why are you 'beating the stoma'? You're harming yourself and it could be very dangerous.

I'll say it again - you don't have to live like this. There is help available if you want it.

FabulousGuineaPig · 04/02/2019 17:05

Hi. Thanks newindentity for your tips. I just feel so ground down and there never seems to be light at the end of the tunnel. I went back to bed and eventually got a little bit of sleep. But I find it depressing because I've wasted the day. I live on my own and I haven't spoken to anyone for 2 days. I could phone my mum but she won't be interested so I have to cope with this alone as I have done for years.

OP posts:
FabulousGuineaPig · 04/02/2019 17:16

Thanks newidentity for taking the trouble to write out all your tips. In a way it helps to not be the only one who didn't think my hospital were wonderful.

OP posts:
newidentiy · 04/02/2019 17:29

I know it's hard but just try even a little walk up the road even. It will really help you mentally. I set markers like first up and down the garden and then to the house with the nice garden 3 doors up and so on. It really did help to feel like I had achieved something.

What is your next plan of action with regard to a reversal has your consultant discussed.

You can also switch hospitals. I know somebody who lost all confidence in their hospital and in desperation discussed with their gp. He referred her to a different hospital who basically went back to the start with her and this helped.

Do you have any friends who you can talk To? I was lucky I have small family buy very supportive. I had one very good friend who was not squeamish and she had way way too much information from me but didn't seem to mind

BusterGonad · 05/02/2019 04:11

This is so sad to read Fabulous I have no advice but o just want to say that I've read the whole thread and it literally makes me want to cry for you. I have crohns but no bag.
I really think you need to start from the beginning and get a new referral and another hospital. There must be help out there for you but you do need to make it happen.
Have you joined any crohns and colitis help groups on line etc? I really liked the crohns forum as they had invaluable information for me, and it's through them that I realized that I actually had crohns and not a grumbling appendix (like the doctor thought). I know things are bleak for you at the moment but you've got to make the first move to get change, if you keep in doing what you're doing you will only get down into a darker hole.

newidentiy · 05/02/2019 11:49

@FabulousGuineaPig how are you today? Did you manage to get any more sleep?

FabulousGuineaPig · 06/02/2019 14:30

Hi. Thanks Buster gonad. I am trying to get my pouch redone but the hospital I'm trying to get it at is overwhelmed with referrals. It seems all I can do is wait patiently and the odds of it working are low anyway. I am still trying to get along with the stoma but I think it has been particularly hard as it has never really been permanent and also I wasn't ill for a long time , only about a month before I got it and when I got it I was still at an unsettled period in my life which I still am.
I will send you a message newidentity.

OP posts:
LuckyLou7 · 06/02/2019 15:02

@FabulousGuineaPig

I have read the whole thread, and my heart goes out to you.
Please stop taking your grief and anger out on your own body though- punching and slapping your stoma isn't going to help, you know that. Get a notebook and write, write all your anger and fear and resentment down.

Your life isn't at an end because you have a stoma. There is a way forward. Speak to your consultant and your GP about how hopeless and helpless you feel.

BusterGonad · 06/02/2019 15:23

I think Guineapig you need to learn to love yourself again, you sound completely beaten by your illness and I don't blame you, I really don't, I know you have little cash and find clothing doesn't fit you well but I really think you need to get on some forums or blogs and try to look into what others wear with a bag and try to get some kind of style your are happier with. Could you start by trying new make up, then maybe a handbag. Gradually Hopefully you will get more confidence. Thanks

BusterGonad · 06/02/2019 15:28

May I also suggest anti depressants, there is a strong link between stomach issues and depression. They may help to ease your dark cloud x

BusterGonad · 06/02/2019 15:36

I'm in them and I'm not ashamed to admit it.

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