Stoma op help required

Hi Beanie2024 and welcome to the group.

Your husband has a lot to go through, and you as carer also do so please remember to take care of yourself too. There’s certainly a lot to take in when you are faced with such an information overload. 

Hopefully the operation for the ileostomy has been fully explained for you both-is there an intention to have this reversed at a later date do you know?

I’d encourage you to use the word “formed” for any kind of stoma rather than “fitted” as the stoma is made from a person’s own anatomy, and isn’t something that’s added to the body, so it can help when thinking about having a stoma to remember it is part of a person, rather than an addition. I found that helped me coming to terms with having mine.

I have to say that despite having 2 stomas, both of which are permanent, neither of them are an ileostomy, so I hope others will come by and share their experiences of that.

From my own experience I had a longer recovery period than most as my surgery was more extensive than your husband’s will be, but I can say that I got used to having stomas very quickly, and quickly accepted it was simply another way for the body to get rid of waste.

The thought of having a stoma tends to be worse than the reality, and it is a huge bonus to have a partner who can accept the stoma, whether temporary or permanent, and not find it too difficult to come to terms with. It’s certainly a big life change, but it’s honestly amazing how you can adapt and accept this change.

There is a long road ahead, but I’d encourage you to try to concentrate on light at the and of the tunnel.

Sarah xx

Hi Sarah 

thank you got your response.

it will be reversible after the main op has been done and healed. 

they showed us a little red plastic thing today which I thought was the stoma I didn’t realise that is actually part of your bowel.

That must be open to infection?

im glad that you got used to your quickly and accepted it.

I hope my husband does the same.

i will accept it without any problems if it’s there to save his life that’s a blessing.

Thank you for your comments really helpful x

thankd

Hello Beanie2024,

In advance of chemoradiotherapy the oncologist recommended that a loop ileostomy would be of benefit. I just went along with whatever he and his colleagues recommended. Not knowing what an ileostomy was I never looked it up and imagined it to be some form of mechanical outlet temporarily attached to my abdomen for as long as necessary. I was in hospital for 48 hours and then discharged home. It was a shock looking down as the stoma nurse removed the surgical dressing and seeing a dome of my intestine for the first time. However, the nurse had an excellent, brisk, matter of fact manner and the shock disappeared in minutes as she instructed me on cleaning the area and draining and changing the ostomy pouch regularly. Those first few minutes set the course and I never looked back after that. In terms of recovery the wound took several weeks to fully heal but I was up and about as soon as I was home, although I took things easy as I didn't want to strain anything. Diet was an initial consideration and I kept to soft, plain food such as well-cooked pasta and white bread, drinking plenty of water and eating lots of fruit jelly and ice cream, plus yogurt.

If someone had told me a year before that I would end up having two stomas I would have been mortified. Knowing now what I didn't know then in my opinion it is no big deal and life is pretty much back to normal (whatever that was)! Just avoid heavy lifting and unnecessary strain on abdominal muscles - forever (I now have a wonderful excuse which goes unchallenged).

Any queries or concerns - just ask.

Best

Dulac

Hi Beanie2024 

I’m actually a little surprised that you weren’t told how it was made so you could see how it is a part of a person.

I’m assuming you were shown a plastic stoma where the output (poo) comes out to let you see what it was like-for me neither of my stomas protrude in any way from my body, so we are all different! But my colostomy was made by pulling part of the colon up to the surface of my tummy. My urostomy (after bladder removal) was formed from part of my small intestine, again pulling this out to the surface of my tummy. 

There are no nerve endings, so there is no pain there and I have never had an infection in either stoma. 

My partner was never phased by either stoma, so I’m glad you are confident you will be able to accept the ileostomy. We thought the same-I needed mine to save my life. In time, it will hopefully be reversed and then things can go back to how they were. 

Sarah xx

Hi Sarah

We are meeting the stoma nurse next week so she will probably tell us all the information then hopefully.

Im pleased to hear you’ve never had an infection that’s good news.

Thank you for your help.

best wishes x

I hope you get the chance to ask as many questions as you need when you see the stoma nurse and get all the info you want. You should be shown how to take care of the stoma and perhaps your husband can practice wearing a bag to get a feel for what that’s like. Dulac has given you some good advice there about diet and definitely about lifting, and please feel free to ask any more questions if there’s anything you are unsure about. We are all happy to help if we can.

Sarah xx

I was given some stoma bags to practise with before my op.I found it really helpful to see that it wouldnt impact wearing my normal clothing and that other people could not tell I was wearing one.It gave me loads of confidence.

It also helped when it came to marking me up for the siting of my stoma as I was able to explain the most comfortable position re my normal waistband on clothing

Kath