ileostomy .

Hi Brummie lady, It is one hell of a shock for your husband to deal with, especially if he didn't have symptoms. I am 75 and had an ileostomy for a year which has now been reversed. I had time to absorb the information as I had chemo radiotherapy first before the operation whereas your husband hasn't has much time to take it in.

No one wants one but, as my stoma nurse said, it helped save my life. You are worried how he will cope as you do the fiddly things for him. I wouldn't have said dealing with the stoma bags is that fiddly and once he has got used to it becomes a normal routine.  I hope that he has a good a Stoma Nurse as I had as they were very patient and supportive. He won't be allowed home until he can managed it.  Regarding diet he will be surprised how much of the food he likes he can still eat.  The diet and subsequent output has to be managed but, with your help, it will be ok. It will just take time.

If he is thinking that life with  an ileostomy will not be worth living he is very wrong. I hope that you can manage to get him to talk about it with you, any children who can help? 

John

Hi it must be a shock but if a stoma saves his life its worth it.do click on my katz name to read a short bio of my op and how I am getting on.I  was 68 when I had my op and really you do soon get used to the stoma .I was given a bag to wear before the op to see how it felt and in fact asked for more to really get the hang of it I even met friends etc and no one noticed so that really made it easier.changing  and emptying really isnt too fiddly and it soon becomes routine.

All the best and feel free to ask me anything

Kath

Ps.I agree with crankshaft re food.you start off slightly limited but with time more and more foods can be added.2 yrs on I have enjoyed a full christmas lunch with pudding and mince pies with no ill effects.although I have to say that "fred" my stoma isnt too keen on more than one glass of red wine.you soon find out the things that may cause an upset,then omit them and maybe try a small portion later.as long as you chew well most foods are possible,well maybe not sweetcorn but hehho I can live without that

Kath

Hi Brummie lady

Youve had a real shock and it’ll take some time to process  

I had warnings about my cancer so I half expected it  

I didn’t try the practice bag either. My preop was cancelled and I thought I wouldn’t get the op. I didn’t want an ileostomy but really despised the Cancer. I wasn’t happy about not being able to eat things I liked. However I found I could eat things I couldn’t tolerate before. Like fish finger sandwiches on white bread with real butter and full fat mayo. I was eating a really varied diet within a couple of months  I really enjoy my meals. My weight is good and I’m not stopped from doing anything that Covid allows. 
The stoma nurses are supportive, caring and knowledgeable they’ll get him through. 
This site has also given me so many tips for managing my bag it’s a wonderful place to ask anything. 
I have a small travel mirror to help me apply my bag.  I find it more convenient to change by the sink where I haven’t got a mirror and my sight isn’t great either. 
You will get through

Keep us updated 

Hi Brummie lady .I can understand how your husband is felling at the moment.We all feel that if you don't admit it then it will go away .I had.no warning before but when I was diagnosed with Bowel Cancer all I said was I know.. I had never heard of a Stoma Bag before didn't get time to even see one .I was lucky not to have the worry time waiting for results.

I think that he will come round to understand the problem   Talk to your own doctor they might be able to help you.When he gets to understand and accept the problem you will see a difference.. Don't goggle to much it doesn't help.

Thinking of you both .Alaine

Hi Brummie lady

This is an awful lot for you both to take in, especially since it's come out of the blue.

My situation was similar in that I had no indication of a problem and was diagnosed through bowel screening.  I wasn't even expected to need an ileostomy so didn't see or speak to a stoma nurse beforehand.  (And due to staff changes and covid I didn't see a stoma nurse in person for 4 months but that's another story).  So, I woke up with a surprise stoma in June this year!  The first couple of months were tricky - leaks, diet, lack of confidence, some tears but please don't be put off. As I said, I had poor aftercare initially but, once I finally accessed the system things were a whole lot better.  The new stoma nurse sorted me out with a much better pouch - very easy to use and has never leaked.  It gets changed every other day and only takes a couple of minutes. Easy.

Diet - I can more or less eat anything now, just smaller portions.  I peel some fruits and avoid nuts (which I love) as they scare me a wee bit but everything else seems to be fine as long as I chew, chew, chew. A retired nurse advised me, when trying new things, to start of with an eggcup full at a time and see how it goes. Had a full Christmas dinner and a couple of glasses of wine.

Holidays - I took a 5 hour flight for a fortnight in the sun recently which I felt really anxious about but it went fine.  I never normally use the toilet on a plane but had to brave it on this occasion.  It was ok and no mishaps.

I'm also back out walking every day, normally between 4 and 5 miles.  The pouch is very discreet under my clothes and you get used to it quite quickly.

6 months ago I was in despair and wished I'd never had the operation (although it was clearly very necessary) but I'm actually very settled with my stoma now.  The surgeon has pencilled me in for a reversal pending further tests but I'm not fully decided yet.  I now know that I could easily live with the stoma if necessary.

I hope that you can persuade your husband to discuss his worries as I'm sure that a lot of his fears can be allayed. The folks on this forum are great too.  There's always someone who comes up with kind words, a brilliant answer, genuine support or some humour, depending on what you need at the time.

I'm wishing you both the best of luck x

Thanks for your support. This has all sweept up on us quickly but unfortunately there are only the two of us. So nobody else. My husband gets really upset if I talk to anyone else about him. He is really private and objects strongly to me talking about him he doesn't know I am on hear discussing the situation.so makes it hard for me to cope. Thank you for your reply. 

Hi Brummie lady, I'm recovering from Bowel Cancer and was diagnosed in August 2020 through screening program. It saved my life.

After surgery to remove cancer out of 24 lymph nodes 5 had cancer in them had surgery in November 2020 to remove it. I woke up with a Stoma at first I was horrified and thought I'd never cope I was , a very private person (like your husband), in full time employment and work as a receptionist in a very busy leisure centre. How on earth was I going to manage I thought it was the end of my world .

The aftercare I had was terrific and the Stoma nurses were great. They explained everything to me and I was not allowed out of the hospital until I could show I was capable of changing the bag etc. I was on a very low residue diet, which included build up drinks to help give me the vitamin and nutrients I needed and so as not to put too much pressure on bowel whilst healing. Anyway after a lot of mishaps, leakage etc the Stoma nurses found the right size of bag for me and I managed.

I had a reverse ileostomy in late May 2021 and have not looked back... fingers crossed it continues. It'll be tough for your husband and you but you will both get there. Stay strong and you keep talking on here. The advice and support is terrific.

Take care and big hugs to you.