Stomas

Hello Gunners63, do you know if they are saying an ileostomy (connected to the small bowel) or a colonostomy (connected to the large bowel)? If they are talking about a temporary ileostomy, that is what I had for a year. Is it life changing? Only in so much as you have a new regime to follow in changing the bag, either once a day or two days, you will need to empty it several times a day but once you have got used to it you just adapt and get on with life. It didn't stop me going on holidays, flying, working or enjoying life. Diet is important but I was eating and drinking most things that I like.

If it would be a permanent colonoscopy I believe that the same principal applies but I don't think you need to empty it so frequently. A friend of mine has been living an active life with one for nearly twenty years.

The reversal operation is much shorter than the first and would be less of a strain but I can understand their concern if he has a dicky heart.

I hope everything goes well for you both, all the best, John

Hi John. Thank you for your reply. I believe it would be a permanent one. It was difficult to understand as the speclist didn't draw breath, it was as if he know what he was talking about. Basically he is saying we should go home and talk about what he would prefer. I think from what he was saying he would be better having a permanent one, as he said his bowel would never be the same if he has a temporary one. Our heads are all over the place. 

Hello again. It does sound as if you need to push the specialist for more information to allow you to make what will be a major decision. If you can't speak to him directly has he introduced you to a specialist colorectal nurse who can help. You at least need to know which stoma he is suggesting. You may find some help in one of Macmillan's booklets or a guide to stomas or rectal cancer that the hospital may have. Don't be afraid to push for more information from them.

I would repeat though that if your husband ends up with either bag permantly it will be manageable and will allow him to carry on a near normal life.

All the best, John

Hi Gunners63 You’ve had a great reply from John and I think you do need to know if they’re suggesting an Ileostomy or colostomy? My Ileostomy had a quite loose output and I emptied it several times a day. A colostomy has a firmer output and I think you actually change the bag rather than emptying it. My friend has a permanent colostomy and you would never know - she’s flown and been on cruises without any problem. I’ve attached a link to a reversal leaflet to give you some idea of what’s involved. It is a much smaller op but obviously still involves anaesthetic. It can take several months for things to settle down afterwards and there can be a lot of rushing to the toilet.

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

Hope you are able to get a bit more info from the medical team

Take care

Karen x

ps please don’t apologise for posting - that’s what we’re here for x

Thank you Karen it's a difficult decision to make if th have a permanent or temporary one. I think they want to do permanent one because of his heart failure and putting a strain on it. Can I ask when you had your storma put in do you have an ergency to go to the toilet. They told him his bowel would never be the same and he would always need to know where a toilet would be. 

Hi Gunners63. The stoma means that you don’t go to the toilet in the traditional sense - your poo goes through the stoma and into the bag stuck on your tummy so never gets to your bottom. The only urgency was if I could feel the bag filling up rapidly and needed to empty it but as long as you don’t let it get too full then it was fairly easy to cope with. 
After surgery it is acknowledged that your bowel will never be the same again as there’s been some removed and then rejoined. This means that your body waste (poo) has a shorter journey and less liquid can be absorbed so can be runnier which is why immodium is often required. It can also mean there is less storage so somebody who used to go once a day might now need to go 3 times a day.

If you have a stoma reversal then it can take anything from 2 months to 2 years for things to settle down and you will have to get used to a new ‘normal’. I was going to the toilet 8-10 times a day in the early days and things got very sore. I’m now 3 years down the line and it can still be a bit erratic but it’s manageable and I don’t worry about finding toilets. Unfortunately there’s no guarantee as to how things might be after a reversal - my friend suffers more with constipation whereas I have a lot of wind and loose stools.

Is your hubby’s tumour very low in the rectum? I only ask as there is also a condition called LARS (low anterior resection syndrome) which can affect those with a very low tumour especially if they’ve had radiation as well and this can be quite debilating for some.

It’s a tough decision to make. I know a lot of the colorectal support nurses give out stoma bags before the op to allow people to have a practice  and see how it feels. Would your hubby consider doing this perhaps? 
Hope this helps a little. Please feel free to ask about anything else that you think of 

Take care

Karen x

Hi Gunner63.

I have had a permanent colostomy since July 2019. I was really upset when I was told I had to have it, but my lovely colorectal nurse said that it was saving my life so I was determined to get used to the idea. It's amazing how quickly you get used to it. It's just a part of me now and if a reversal was possible I would not have it, I would happily keep my stoma. I work full time and have very few issues. My bosses are really good and understanding. It must be a difficult decision to make. Better, I think to be told in no uncertain terms then you just get on with it. Once you get the hang of it it becomes second nature.

Good luck with your decision.

Love Kim xx 

I had a temporary stoma over twenty years ago

i was only 16 I found the operation very tough and for three months had the stoma bag I remember my aunt who had a permanent bag ask if you had to kerp

it would u manage and I said yes at 16 but I got reversal and first few years after I had to watch what I eat no obstructions and just last month I got a severe bowel infection left me in hosp if I had to hsve stoma bag I lol at my aunt in her seventies and I wouldn’t even know she has a bag she just gets on with life so I hope you are in the sane way 

I had a temporary stoma over twenty years ago

i was only 16 I found the operation very tough and for three months had the stoma bag I remember my aunt who had a permanent bag ask if you had to kerp

it would u manage and I said yes at 16 but I got reversal and first few years after I had to watch what I eat no obstructions and just last month I got a severe bowel infection left me in hosp if I had to hsve stoma bag I lol at my aunt in her seventies and I wouldn’t even know she has a bag she just gets on with life so I hope you are in the sane way 

Hello, I had life saving surgery in 2019 ended up with an ileostomy I woke up a month later and thought how will I cope but to be honest it hasn’t changed my life I had a few issues to begin with but the stoma nurse sorted it out for me and touch wood I don’t have problems,. 
you soon learn to cope with it I know my routine now when it’s going to be active it’s very watery at times but I eat foods to thicken it. 
good luck