Parastomal repair

Hi Jennifer r 

You haven’t given much information in your post, and I’m sorry I’m not able to answer your question.

You might want to ask the nurses about this, and you can do this by clicking on this link.

Ask the Expert

Sarah xx

Sorry I had just had a major leakage and panicked.

Here's my story.July 21 had op for rectal cancer which resulted in me ending up with a stoma.About 2 months after the op I noticed a lump by my bum.It ended up being a perineal hernia that came out between my bum cheeks which incidentally had been stitched up from the op.I also noticed a lump by my stoma which proceeded to grow to the size of a grapefruit.

I was devastated.I had to change all my clothes to disguise the bulges but the worst problem was leakage from the stoma.My output was quite thick and never went to bottom of bag.I tried various bags and nothing helped.I felt like a freak.

Eventually I found a surgeon who was willing to do the repair.I had surgery on both hernias fortunately the one in my bum worked but the parastomal one just regrew.Im now back with lump behind my stoma the size of a small melon and leakages every day from the side of bag.I had the surgery to correct hernias Feb last year and my surgeon just says come back in 6 months..

Can anyone give any advise please.

Hi again Jennifer r 

Thank you for sharing your experience-you’ve been through an incredibly difficult time, and I was sorry to read your story. I am very lucky with 2 stomas that I’ve not experienced a parastomal hernia with either of them.

It’s disappointing that you haven't received any responses yet, but maybe no-one has experienced a similar situation. Did you mean that your surgeon won’t see you for another 6 months from now? That does seem a long time if so. Have you contacted them again to explain your current situation to see if it can be assessed again and if further action is possible? 

Living with stomas can be difficult enough at times, so this added complication must make things especially hard for you. 

Sarah xx

Jennifer r,

I have two stomas, both with parastomal hernias. The ileostomy is the largest although neither of them cause a problem apart from selecting clothes to keep them covered. They don't bother me enough to consider further surgery with everything that entails.

There are various accessories available to overcome leaks (e.g. adhesive enhancers and elastic tapes) and your stoma nurse should be able to support you in trying some of them out. These, together with (perhaps) a concave ostomy pouch combined with skin preparation free from soap and moisturiser might do the trick. I use plain cold water and a single adhesive remover wipe with excellent results.

Dulac

Hi Jennifer - Sorry for late reply to this, only just seen it. I, like you, have had my parastomal hernia repaired. 4 years ago I received my stoma and since then I've had two repairs, the last one 2 months ago and it's back already. It seems that it's just one of those things for some of us. What really helps me is a tubular support around my waist, not one with a hole for the bag, but one that supports everything. It lessens the discomfort and hides the bulge well. I wish you luck...

Hi Unfortunately I still have a hernia the size of a small melon.The surgeon that repaired the hernias has told me that due to the extent of the repair there isn't enough flesh or muscle etc to do another repair.I don't have any core now.Im not due to see him again just the oncologist every 6 months.

I've tried everything about the leaks but nothing seems to work.

I have various belts but there not much use.I'm trying irrigation but finding it very hit and miss.

Feeling very on my own cos stoma nurse isn't much good.Dont think she has seen anything like this before.

I'm still here thats the only blessing.

Hi Jennifer,

You must get a second opinion from a really experienced surgeon who does more than a few hernia operations per year. Do not give up the fight. You have survived so much already!

Your surgeon made a mess and will not fix it! You cannot stay with a hernia that size, especially as you have already had a few operations. A good experienced surgeon will find a solution.

You could have more serious issues later if this quite big hernia is left untreated. 

Don't give up you are not alone, make a fuss. I do think that your stoma nurse should be more helpful, when my wonderful nurses could not find an answer, they asked a senior nurse who did help.

Just for info , I  had peritonitis then later sepsis ...

Please fight.

Good luck x

Hi

Thank you so much for your reply.I was a bit down but that reply lifted me up to realise I'm not alone.Again thank you

It look 2 years to even find someone to consider repairing the hernias.I wouldn't know where to get a second opinion.It is hard to find someone who specialises in that field.

I find it very debilitating,struggling to put socks,shoes on and finding clothes to disguise it.I have always been conscious of how I look since having .mouth cancer 6 years ago. 

I'm so sorry to be moaning to you when you have obviously had so many problems of your own.

Anyway thank you again

Jenn.x