Living with a Stoma
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New here -boyfriend had ileostomy 10 weeks ago

Following a flare up of UC (5 years in remission no problems) my boyfriend had an emergency subtotal colectomy and now has an ileostomy. Hadn't had any build up or preparation for this op so all a big shock. Had been in hospital for 2 weeks before operation so had lost a lot of weight and was very ill. Took 2 weeks to recover and be discharged following op.

We are getting used to his stoma and he is doing brilliantly with it and has found a bag that doesn't leak and he is confident with. Biggest problem is with his abdominal wound which is taking a long time to heal and still requires daily dressing and is very painful. The community nursing system doesn't help and on top of dealing with all this is having to negotiate how to ensure he has dressings and someone to help change it.

Slowly putting on weight and doing more but very tired and finding it hard to deal with some days. Ended up back in hospital last week with suspected sepsis but discharged following day.

I would be interested in speaking to anyone in how to support him when he is very low and down.

7 Replies

Main thing is just to be there for him to reassure him how well he is doing and that in time all these niggles will be gone and the wound will have healed. Make sure the stoma nurse is consulted whenever you have a concern they usually give you a number if not get one. As he gains his strength he will gain his confidence too, both in doing things he used to do and dealing with his new considerations in caring for the ileostomy. I get my down days but don't we all I made exercise a corner stone of recovery as I found going outside the house if only for a short walk was important for the mind and physical well being. I am 62 have grade iv metastasised cancer so have had a few operations including the ileostomy and have even been known to run a bit since the bowel operation which was 9 months ago for me. None of us know what each day holds for us but I always set a goal even if its a walk around the block or going to see someone or write something if only memoirs and thoughts. Whatever your boyfriend loves to do reengage him with that! When he starts doubting himself remember how far he has come, remember all the fears and battles he has already been the victor in and be proud, it will get better, these are just tough times. Set a goal and go about achieving it! Good luck


Thank you. Just reading the replys have helped us both - its good to hear how you have managed to achieve what you have. Very inspiring.


So sorry to read your problems. My husband had an emergency operation in April for a bowel obstruction due to diverticulitis. It came completely out of the blue so like you, no time to prepare for it. He had trouble with his wound healing up and we were also back and forth to the nurse for a while, but got there in the end. His colostomy can't be reversed as five years ago he was diagnosed with terminal lung cancer and is on a targeted chemotherapy of 2 tablets every day and to keep it under control. What you and your boyfriend are going through is very difficult for both of you. It's understandable that he (and you) feel low sometimes but try to stay positive and be there for each other, which I'm sure you are. Laughter is a great healer and I know sometimes you think there's not much to laugh about but you can always find something. One of the silly things that has helped us through is by Steve giving his colostomy a name! Colin ( the colon!). Daft I know, but it helps you to accept the situation - and you can always blame Colin when noises happen at inappropriate times! Seriously though, love and support is the best thing you can give each other. I do hope that all goes well for you both x


Like the idea of a "Colin" thank you for responding. It really helps speaking to others.

We are laughing and you are very right!!!!


Hope all picks up goes well for your boyfriend

1 like

Mines Simon. Simon cowell my new bowel lol.


We are 4 months from the op and started to have bowel movements every couple of days where pinky bloody mucus stuff comes out. Is this normal?


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