Parastomal hernia repair

Hi Dizzy1968 Laura and welcome to the group.

I don’t have any personal experience to share as I’ve not had a parastomal hernia, but wanted to say hello and welcome anyway-and I hope that some else can come along and give some advice for you. Do you know when your surgery is planned for? I hope everything goes well. 

Sarah xx

Hi Sarah, 

thank you for the warm welcome I’m still on a waiting list only been a year so far, although I thought I’d been put on it 2 years ago to find out last year they didn’t put me on it !!

However I was told about a charity for people who have been waiting for a while and is affecting them so I’m in the middle of going through that so fingers crossed I may get excepted for it. 

I was reading on here about some people having several repairs, and hoping this won’t happen to me, when I first had my stoma 3 years ago now I wasn’t told to have some sort of support to stop getting a hernia and within about 5 months this lump started to appear and has grown big it really has affected me mentally and I won’t go to any functions as nothing looks nice I have to wear clothes that are baggy to stop people from seeing it iv broken down crying because if it. As a woman having to have a stoma isn’t nice and now having this thing on my stomach is even worse I just hate it.

so just wanted to hear from people that it’s been a success really. 

best wishes 

Laura

Hi Laura

It’s such a long time to wait, isn’t it? But it’s shocking you weren’t even on the list when you thought you were-it’s very tough, especially for something which impacts on you like this and affects your mental health.

My father in law was on the list for a normal hernia repair for 5 years, then had to have his bladder removed last year and have a urostomy, so the surgeons thought they could repair the hernia at the same time. However, they weren’t able to do it, so now it will never get done as he’s not fit enough for more surgery. 

One of my friends who’s had the same surgery as me and like me has 2 stomas, has ended up with 2 parastomal hernias so I understand from what she’s told me how difficult this is and how it has affected her. She is also enduring a long wait. It’s hard enough to have stomas without the added issue of hernias under them, so I really hope you manage to have some success moving forward via the charity.

I can’t think of other members off hand who had successful repairs to be able to tag them for you, but I hope someone will read your post and respond. I’ve dreaded this happening to me, and I’m so sorry it has for you.

Sarah xx

Morning Sarah,

Sorry to hear about your father in law, And there is me feeling sorry for myself, and your poor friend has  2 stomas and 2 parastomal hernias it just doesn’t bear thinking about!!

Thank you I hope I’ll be a good candidate for the charity,

Laura x x 

Hi Laura

I don’t see you as feeling sorry for yourself at all! This must be a horrible thing to live with. I consider myself very lucky with 2 stomas not to have had hernia issues-I was very careful for a long time after my surgery not to lift anything heavy but more recently I have needed to do more lifting round the house etc and I hope nothing untoward happens.

Fingers crossed for you that you’ll be able to get surgery soon.

Sarah xx

Hi Laura,

I'm like you, waiting for a hernia repair and thought I was on the waiting list as I had the CT scan that my consultant requested 2 weeks after I saw him in March, only to see on the NHS app that I was only added to it on 6th November. I also wasn't told that I should wear a support belt to stop me getting a hernia. As a result I went back to work after my surgery and carried on as normal. I worked at Wilko at the time, so did quite a bit of heavy lifting. I have heard of people having the surgery more than once, and wonder how effective it is. I  suppose we'll just have to hope we're ok afterwards.

• Kim

High Laura

I also have a parastomal hernia and have heard that the repair results can be mixed.  I know how difficult it is to make a decision on what to do, I had my surgery two years ago and have spent the last eighteen months thinking about what to and still not come to a conclusion.  Although my stoma nurses have been brilliant no one made me aware of the hernia risks however, I have bought myself two support belts which I wear whenever doing anything physical which also includes pushing the hoover around.  I found out recently that I could have got one on prescription which is good to know.

Best of luck with your decision.

Michael

Hi Michael.

I don't know which supplier you get your stoma supplies from but I use Securicare and I'm entitled to 3 hernia belts a year on prescription at no cost.

Kim