Surgery update

That’s good to hear @Sammolly - you must be so relieved. I’m sure she’ll quickly get used to her stoma and Ian aka  will be happy to help you with any issues over on the Ileostomy Board x

That's really good news and I'm sure your feeling much better too now, xx

Hi ,

I am so happy to hear things went well! I'll be holding thumbs that the pathology shows a good result, and that her recovery will be swift.

If you have not already done so, be sure to join us over in Ileostomy, colostomy, urostomy and any other stoma support for advice(or just a chat) on anything stoma related. We are a bunch of baggies (or ex-baggies, like me) who are happy to share advice on anything from leaks, what to eat, product recommendations to stoma nicknames!

All the best,

Yolande

Hi everyone , my daughter is still very sore and tired today , had a bad night last night with pain . they had her up out of bed a few times and she found it very difficult and painful . It’s hard to see her like that , I feel so helpless . She’s a bit down today too , I think the reality of it all is starting to hit her and she’s struggling with having the stoma . 

The doctor has said she’ll be in hospital until at least after the weekend . They want to be sure she’s well enough to come home and that she’s eating and drinking properly and of course managing the stoma . 

It is very difficult in the early stages and the theory of having a stoma becoming a reality is hard to take. Especially when it is there looking at you constantly. Is there a family member going to learn about the stoma as well?

My daughter came into hospital for the last couple of teaching sessions with the nurses and she was brilliant. Mine was in a difficult position, retracted and got sore very quickly. Also because I was fat I struggled to see the lower edge of it. My daughter would ensure that the lower edge was clean, would apply stoma paste as required and usually position the bag for me when she was around, ensuring a tight fit and minimal skin exposure. Those times when you have had a bad day with leaks, having someone there to help you with it or just fetching warm water or holding the hairdryer on it really helped.

My stoma was called 'Sooty' and we got so used to him in the end we could joke and laugh about him and his antics. A name also allows him to be mentioned in public without too much eyebrow raising. Her and my husbands acceptance helped me emotionally as well as they didn't flee from the room when i had to change the bag, they helped me, making me feel more normal and less hideous and that I was not alone. It takes time to accept and given her age I would imagine it is more difficult.

You just have to remember that this is temporary and it too shall pass.

Best wishes

Nicky

Thankyou Nicky , I’m here at the hospital everyday with her so will make sure I’m confident with it too so that I can help her when needed . Giving it a name is a good idea ! Wouldn’t have thought if that so thanks ! The stoma nurse will be around to her later so I’ll be here to see how it all works 

Hi and my very belated welcome to the online community and I am sorry to hear about your daughter and her struggle to come to terms with her stoma but please be assured it is early days and things will improve quickly. I can only endorse the wonderful advice you've received from others and I would like to stick my thoughts into the ring.

I am Ian and with anCnoc I'm Bodach and I LIVE WITH A ST● MA.

Can I suggest a few things to make life easier for your daughter.

First try and get her to manage it herself by doing a change and emptying the bag to get used to it. The quicker she can manage it the quicker she'll get home. When she is hospital it would be easier to do things out of bed sitting it the chair.

Secondly When she gets home find a place where she is comfortable changing her bag, some people prefer to do it in the toilet, my preference at home is sitting on the edge of the bed, wherever she chooses she should make sure that everything she needs is to hand.

Thirdly Before starting a change have everything she needs to hand and in order of use, pouch cut to size if need be and tucked up under her armpit (to give it some warmth) disposable bag, dry wipes, adhesive remover, bowl of warm water, barrier film wipe and when she has finished all she should have is the disposable bag ready to throw away. I believe that a change takes as long as needed, it's not a race and shouldn't be rushed.

Fourthly Get her to get a Radar key (free from supply companies) and put together an emergency change bag for when she goes out (we can tell her what she should  put in it and where to get the items she needs) by having a Radar key she can use disabled toilets which usually have more room and are cleaner. If she hasn't already got one get a prescription charge exemption certificate or a medical exemption card.

I started off by saying that  LIVE WITH A ST● MA and like everyone else in this group and the Ileostomy, colostomy, urostomy and any other stoma support group we probably owe our life to having the surgery and having a st●ma. Life with a st●ma is not all that bad and should not stop your daughter enjoying a full active life doing everything she was doing before she received her fashion accessory. There had been much publicity recently about youngster wearing and having their pouches on display on the beach and it is up to your daughter who she shares the information with but always remembering that it is nothing to be ashamed of, she is here because of it and the surgery.

With a little bit of luck she will be reversed very soon and she can put it all behind her but in the meantime life goes on and she should enjoy her life as every other 21 year old is doing.

Please do come and join us in the Ileostomy, colostomy, urostomy and any other stoma support group and it might be a good idea if your daughter also becomes a member and we can start to do what we do best in giving her help, support and advice on all things st●ma related from diet, pouch selection, accessories, clothing advice and trouble shooting we have the answers she is looking for I am not saying that we will be replacing her new best friend the st●ma care nurse but the door to the community is always open 24 hours a day 7 days a week to give advice and answer any question no matter how small, one of us will have the answer for her and she can move on.

I look forward to welcoming you over in the Ileostomy, colostomy, urostomy and any other stoma support in the very near future and giving you all the help, support and advice she needs when you need it.

I'm the Bodach and I'm here to support and help you in any way I can when you need me.

Ian (and *anCnoc)

Note *anCnoc just means little hill and my current one is really son of anCoc.

I LIVE WITH A ST● MA

. Hope your daughter has a better day today - it’s hard to get much sleep when they’re checking your obs every couple of hours although the gap between checks tends to increase over time to maybe every 4 hours instead of every 2. Please encourage her to take little walks if she can - you can help by pushing the drip stand and things will get easier when her catheter is removed.

Yes the stoma is an initial shock but it’s a necessity to bypass the bowel join and give it chance to heal and will hopefully be reversible at a later date.

Please send your daughter my best wishes and congratulations on getting that tumour in the bin

Karen x

ps mine was called Lily the Ileostomy!

They’ve taken her off fluids and gave her some tea and toast this morning . They got  her out of bed for  a little walk earlier , she’s v tired after it though and has some pain . 

Overall they seem happy with her progress though 

Hi ,

This is the hard part of the recovery. I remember dreading having to get out of or back into the hospital bed as I am quite short and my legs did not quite reach the floor! Once the nurses got me out of bed in the mornings, I would just stay in the chair all day! Was lucky enough to have a reclining chair, though.

By Day 2 (where your daughter is now) I was having a "wet-wipe bath" in the chair and that completely exhausted me. Day 3 when the catheter came out I was determined to have a shower. So after a dose of IV paracetamol to take the edge off the pain I made it into the shower. It took me almost an hour, I was sitting down for most of it and had to ask one of the nurses to help with washing my hair, and by Day 4 I was showering on my own and taking walks down the corridors without the physiotherapist's prodding. What I am trying to say is that each day should be better than the last one. She just came through major surgery, but it will get better.

The stoma is hard at first. Even though the stoma nurses encouraged me to do as much as possible with every bag change, I was very happy to organise all the bits that was needed for the change and then just let them get on with it. Bizarrely, I had a break-through moment the last night in hospital when I developed a bit of a leak in the middle of the night. There was an emergency elsewhere on the ward so all I had was a lovely junior nurse who made sure that I had enough light without waking up the rest of the room. But I had to change the bag all by myself, start to finish. When the stoma nurse came in the last morning, I proudly retold the story to her!

She'll get there, don't you worry. Like I said to a friend of mine yesterday, we are stronger than we think. 

All the best, 

Yolande