Stoma parastomal hernia and pain

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Hi 

I’ve not posted here before

i I have ovarian cancer aggressive stage 4 had debulking surgery which I ended up with an ileostomy just over 2 years ago, never really had a problem with any food never ate sweet corn, I’ve had a parastomal hernia for over a year and 2 incisional hernias 

im getting ct scan results on Monday as I think the cancer which was stable in Oct has reared its ugly head

since about Nov I’ve had abdominal pain and pains at the back of my stoma this last few weeks have been worse and the last couple of days I’ve been near to tears with the burning stabbing sensation 

anybody have any idea what this could be

tia Pam

  • Hi  and welcome to the group.

    I’m sorry to read about the ongoing issues you’re having, and the pain. I have 2 stomas due to having had a total pelvic exenteration, but am fortunate not to have experienced parastomal hernias. It must be very difficult to live with these. 

    I don’t think any of us as patients in the group would be able to guess at the reasons for your pain, but I hope your scan results today can give you some answers and a way forward. 

    Sarah xx


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  • Thanks for your reply 

    I saw dr in clinic scan results weren’t back but with urine test bloods examination and symptoms were quite sure it recurrence so have to wait for ct sca n results to see where we go from here, more chemo but need to work out what drug mix I’m going to get 

    life is rubbish at the moment but I fight on 

    take care Pam

  • Hi Pam

    I’m really sorry to read this. I remember how I felt when I had my recurrence and it was a worse feeling than being diagnosed originally. 

    I hope you get some more news on the treatment you can have soon and that it helps. Indeed life can be rubbish at times, but we keep going.

    Sarah xx


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  • Hi Pam, sorry for late reply to this, just seen it. You've probably had the answers you were looking for but just incase you haven't, here's my two pence worth. I've had parastomal hernias (I seem to get one after each repair surgery - two so far in 4 years). The experience I've had with the hernia is exactly what you've mentioned, and in my case it was a sign that the hernia was getting a bit bigger (the burning sensation) and the ache behind it was output being obstructed a little. Never seems to be much info on parastomal hernias here, I often wonder if I'm the only one that has recurring ones. Anyway -  hope you got the help you needed... :-)

  • Hi Stevejhb.

    I've just seen your reply to Pam about parastomal hernias. I have one and am awaiting surgery. Reading that you're having recurring ones, I'm starting to wonder if I want to put myself through it. I had my stoma 5 years ago this month. I've had the hernia about 3 years after going back to work and thinking I was invincible! Did too much lifting of heavy stock but too conscientious to do anything about it on Wilko's time. I'm redundant now so it's time to look after myself. How long were you in hospital and how long was your recovery. Is it worth having it done?

    Regards 

    Kim

    Blackstuff
  • Hi Kim

    I was only in hospital one night for each repair... I was advised to not lift anything beyond the weight of a kettle for 6 weeks which of course is impossible. I can't advise on whether it's worth it or not to be fair... The trouble with leaving it too long before repair is that it gets so uncomfortable and of course it's more likely to bring about a blockage which is why I went for repairs...

  • Hi Stevejhb.

    Yes it is quite uncomfortable if I don't wear the hernia belt. One night in hospital I can cope with. I don't know how long it will be until I have it done. I saw my surgeon mid March and had a ct scan at the beginning of April but haven't heard anything since. Thanks for your reply.

    Kim

    Blackstuff