I know this will sound so silly but I keep reading about temporary and permanent stomas and don’t really understand the difference. I obviously understand that one’s permanent and ones temporary. I’ve been told I may need a temporary one after LAR surgery for a rectal tumour. I’ve read they’re totally different and you can’t eat certain foods and they can leak. I’m so worried as I’ve not been told much at all. Thanks x
Hi,
I have a stoma, I was told when I had my operation that it was temporary but since then no one has mentioned a reversal. I expect this is due to me still needing treatment and of course covid would play a part in non urgent operations being cancelled.
I have an ileostomy, which means that the output is much looser. I have had a few leaks but not many. These have mostly been at night in my sleep so it is important to get the right protection for your bed. I got a waterproof mattress protector and it has proved invaluable.
I eat a normal diet but chew everything thoroughly, the only thing I don’t eat is mushrooms as they don’t break down and can cause a blockage. Sweet corn can cause a few issues too. Obviously what you eat will affect your output, I love fish and curries, and I do eat both but you do know the next day you have had them!
You will get lots of help and all the supplies you need from the stoma nurses, they visit you in hospital after the operation and will make sure you know how to change the bag and clean the stoma. I think in normal times there are clinics to attend but all of my contact with them since April has been on the phone or by email.
I have coped ok with my stoma, it’s not something I would chose to have but at the time it was necessary. I wear normal clothes, jeans, leggings and you can’t really tell it’s there. The only thing I have had to change is I now wear “big pants” that cover the bag. I have just had 6 pairs of special osteomy pants on prescription in preperation for me starting back to work. I feel they will offer a bit more security and reassurance.
I didn’t think I would cope at first as I am quite squeamish but you soon get used to it and it becomes second nature dealing with it..
Try not to worry too much and take care
lots of love xxx
Thank you so much for your very honest detailed reply, it’s very helpful x
Hi
I keep meaning ask about this too ! Is it more likely to be an ileostomy if it’s right side ascending and a colostomy if it’s further down , permanent if it’s very low down but told before surgery ? I keep meaning to ask but time marches on and I keep forgetting . My mum never had one so I never quite got to grips with some of it .
From what you said the ileostomy has more watery output than the colostomy. I read somewhere else that right side ascending tumours are normally diagnosed later as the output is more watery there so can bypass the tumour for longer but not so further down the colon ! I guess that would make sense , I need to do some homework. Having Bodach around , being such an expert I never had to think about it . Just hit the tag button and he was always on hand .
Hope you both have had a good weekend .
Court
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Great reply . The Ileostomy output is looser because it bypasses a lot of Bowel meaning that there is less time for the liquid to be absorbed from the stool. Found this for court
Hi Scared_Munny
I had an temporary Ileostomy after a LAR for a year which has now been reversed. It is temporary so that the join can heal and they will reverse it when that happens. Your stoma nurses will give you great support together with a guide to what you can eat and how to manage the output together with advice on the pouches. They are your first and best point of contact for any queries and advice.
If you get a good seal you shouldn't have much problem with leakage, I didn't and in the year only had a very few accidents mainly for not keeping an eye on how full it was getting when working. You can have quite a good choice of bags, seals and other accessories which means that if you do get any issues there is always an answer. I controlled my output to keep it not too liquid with loperamide (imodium) which you want to get on prescription.
It may seem daunting, but its just another part of the journey of getting better and you will cope because you have to!
All the best for your treatment
John
Dear Scared Mummy
The team looking after me called the reversible stoma a “loop”. However, a colorectal surgeon told me that non-loop stomas can also be reversed, although not so straightforward.
While you have to watch your diet with an ileostomy, chewing well meant I could even east nuts - just don’t tell the stoma nurses. In my experience of two teams, they are amazingly supportive and will work with you as you learn to live with a stoma.
There’s also a brilliant group for stomas on this Macmillan site. Worth joining if you need a stoma.
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