Incisional Hernia Experiences

[AndyEssex]

Hello

I had my liver transplant on the 15th August 2017 and a few months later started feeling a bit of pain on my right side and also a lump started to appear. This was identified as an incisional hernia and it became very large.

It was repaired on the 23rd March this year but unfortunately I had a couple of bad bleeds and was back in theatre about 36 hours later for an emergency operation. The whole of my right midsection is a mesh, and nearly 6 months on it is still extremely uncomfortable.

I have a CT scan next Friday and I just wondered if anyone else experienced a large hernia as a direct result of a transplant. I am especially keen to hear of how long you think it took to recover and did the funny feeling ever go away?

Many thanks, Andy.

[ThreeSmiles]

Hi Andy

What a rotten experience you’ve had and indeed are having. ☹️. I know on here that Brett11 has had a hernia like yourself and is due an operation at any moment - if indeed he hasn’t had it already. “Hernia doctor dead cute!” is one of his threads (it’s a light hearted title but a serious subject!).

For me I have divarication of recti where I have split my abdominal muscles for some reason - presumably because I overdid something too soon post op. It still hurts like hell after 7 months of doing it. Awaiting CT scan results to see if they are going to do anything.

Good luck. I’m sure you will get loads of responses re your topic.

Angus

[AndyEssex in reply to ThreeSmiles]

Hi Angus

Thank you for your reply. Looking back, I probably exerted myself a little too much and caused a hernia. I spoke to my surgeon in depth about the medical causes. Basically my liver failed at a time when they didn't have another one available. My kidneys then failed and my family were told to come to the hospital. I was very lucky - at the last minute a liver became available and the transplant went ahead. I was in a coma for 5 1/2 weeks after the operation with very little hope of surviving. The drugs I was given to try to keep me alive were the same drugs that prevented the healing of my abdominal wall and therefore made it very easy for my intestines to start pushing through. At the time I was given the medication the surgeon basically didn't expect me to regain consciousness, so the side effects weren't really a consideration at the time.

So that's how I got to have such a large hernia!

Cheers, Andy.

[ThreeSmiles in reply to AndyEssex]

Wow! So you were very very lucky 👍👍. I can’t really compare with your situation, but mine still is hurting but nobody seems bothered. Ah well, at least my liver is excellent apparently and that is what really mattress 😁. I hope your pain and discomfort gets better sometime soon!

Angus

[Hidden in reply to ThreeSmiles]

Hi Angus

Sorry to read you've undergone a recent CT scan and hope your results are ok but at the same time my fingers are crossed that your consultant can rectify your ongoing pain

Shropshire Star 🌟

[Oldred]

I had my transplant in December last year and have just started getting pains/discomfort. My GP thinks it might be a hernia and it is close to the incision. I'm waiting for an ultrasound scan appointment. Horrified to hear about what may ne in store.

[AndyEssex in reply to Oldred]

Hello

Surgeons will probably refuse to operate again in that area until at least 12 months has passed. I bought an elasticated hernia corset from ebay which helped me through each day but whenever it decides to rip through a little more, its very painful.

I hope you get a chance to discuss a hernia repair. It is commonly carried out by the same surgeon that performed the transplant.

[Oldred in reply to AndyEssex]

Thanks for the response. I'll have to wait and see what the medics say. I'll investigate the hernie corset.

[ThreeSmiles in reply to AndyEssex]

Hi Andy

You’re right - from my experience you have to wait 12 months usually for any op requiring a general anaesthetic, and even for something like a small operation not requiring anaesthetic it may be 6 months.

That is my experience!

Had to wait 6 months before I could have a cataract operation and 12 months for my back operation - due now at the end of September, which will be 13 months post TP.

Angus

[AndyEssex in reply to ThreeSmiles]

I had my TP in August 2017 and my hernia repair on the 23rd March 2019. It's certainly taking a while to get over. It feels like I've got a wobbly hot water bottle sown into my abdominals!

My dad is 82 and on the waiting list for a cataract operation. It's a very long wait.

[Hidden in reply to Oldred]

Just a we note to wish you all the best and hope they sort your pain out soon

Shropshire Star🌟

[Hidden]

Hi Andy

Sorry to read what you've been through which sounds like to hell and back!

I just wanted to wish you all the best and hope things start to settle down soon!

Take care my friend

Shropshire Star 🌟

[Oldred in reply to Hidden]

Thanks for your encouragement. I often say it's better than the alternative!

[AndyEssex in reply to Hidden]

Thank you very much. I try to remain positive.

I never feel like I went through more or I'm suffering any more than the next person. We all have our struggles.

[Jans1953]

I'm a year post transplant and think I have an incisional hernia. I say that because it depends which doctor I see at the QE. Some refer to it as a hernia , some refer to it as 'rectus sheath insufficiency'. One started earlier this year about March and another has appeared now. It is uncomfortable and occasionally quite painful. I am due to see the surgeon next month but have been told by the physician that often surgery on this is often not successful. I feel & look 9 months pregnant with nothing to look forward to. So at the moment I'm like you playing a waiting game. x

[Oldred in reply to Jans1953]

Good luck Jans, hope you get sorted

[ballie52]

Hi Andy my husband has had 3 liver transplants and 3 ops to repair very large incisional hernias on various parts of his abdomen ..at the moment he's most likely going to need another one due to obviously having 3 transplants and multiple surgeries!

Because his muscle under the abdomen is now very fragile it's becoming very difficult to overcome this problem..He's had support belts to try and make him more comfortable but nothing surgically so far has really made a difference as a new site keeps appearing on different parts of his abdomen.

I suppose he accepted that this is going to be something that he might have to live with after having so much extensive surgery.

It's difficult when you have been fit physically before surgery like my husband and from a cosmetic point of view very challenging to find clothes that fit!

I suppose he just accepted a long time ago that he just has to try and maintain this problem the best he can as he also has a stomach full of mesh that is trying to contain these multiple hernias that keep popping up..although he is nearly 9 yrs post transplant he still suffers from this constant problem!

Not easy to deal with I must say but I suppose he is just grateful to be here 10yrs on and see his children grow up!

[cherrygirl13]

Hi - my husband has a 10cm+ (they haven’t measured it in a while) incisional hernia since transplant (2014) - unfortunately he got sepsis 4 weeks after being sent home and had to have the whole transplant wound re-opened and cleaned etc and then decided to leave it like that 🤦‍♀️ For wound packing daily !!!!! (Thanks 🙄 I am the idiot who’s a Reg Nurse and ended up doing dressings etc) - he had some ‘refashioning done in 2015 but it still looks like ‘alien’ about to burst out of his body at any time 🤣 he has recently been complaining of a lot of abdo discomfort and feeling nauseous - not sure if that’s a coincidence with hernia or the return of LD 🤦‍♀️🤦‍♀️🤦‍♀️ Last Fibroscan was 16kpa and biopsy has showed F4 NASH - can’t exercise with his ‘alien’ in the way !!!! And is diabetic on 2 tablets and 3 insulin’s and we still can’t get it under control 🤷‍♀️🤷‍♀️🤷‍♀️ So you are totally not alone - it’s a shame as they spend so much time and money on transplant the aftercare is not as good as the before care - we are 5 years now post- transplant and he’s seen his youngest get to 15 etc but can’t really say he’s had a good quality of life except he’s alive 🤷‍♀️ (He was sent home from kings with pocket of pus under wound 5cm - and sent me the paperwork and scan results but denied this at a later date - so all trust lost there so doesn’t have any follow up with Kings) only just our wonderful consultant here at Bournemouth who does what he can - but not eligible for another transplant so we shall plod along and see what will be 🥰

Hope yours is ok and getting sorted 🙌

[ThreeSmiles in reply to cherrygirl13]

Crikes cherry that sounds awful? Is there anyone you can discuss it with or, and I hate saying this, complain to? PALS?

Hope something improves for you both soon....

Miles

[cherrygirl13 in reply to ThreeSmiles]

Thank you 😊 for replying - Well this is where it gets complicated - as a RN I am nosy and hubby kept saying they opened his wound up on the ward - so I just dismissed it thinking it was morphine 🤣 so after a few months of tears at the mess of it all (it was pretty horrific having to look inside your husbands tummy all the time) and him being totally adamant they opened his wound up on the ward - I stupidly called for his notes 🤦‍♀️ And got to read all the horror that is kept from the ‘public’ - they had actually opened up his wound on the ward 😢 and despite it all being written evidence etc they denied it - then I found the discharge notes for after transplant and they had scanned him day before discharge as he had an infection (Monday - big drama IV’s everywhere etc etc) they wanted to discharge him Friday 🤔🤔🤔 so Thursday he had scan and it said ‘5cm pocket of pus underlying transverse blahdy bla 🤷‍♀️🤷‍♀️🤷‍♀️ So 3 weeks of feeling quite rubbish and me saying ‘well you’ve just had a liver transplant’ - temperature was always cold 🥶 35 and lower !!!! So GP said no temp no infection - and he kept getting worse then got chest pains so we managed to talk him into A&E where they didn’t even do an ECG 🤷‍♀️ Cue RN wife - has a full on melt down at doctor and hubby does a runner 🤣🤣🤣 (I should write a book some of our stories are quite hilarious 😂 esp when he had full on HE 🙄) hospital ring and say ‘bloods etc have come back not normal and they worried now !!!!’ He eventually went back and was admitted they told me ‘they might stitch up the hole and give him some IV antibiotics’ then phone call early Monday morning - he’s in theatre having wound washed out as has sepsis - so I ask if they have been in touch with Kings and they say ‘oh no not yet as surgeons in theatre but he used to work there’ 🤷‍♀️🤷‍♀️🤷‍♀️ I used to work at this hospital for many many years and yes I knew the staff - I am ashamed to say !!!!! The pics are horrific and you would not believe how he was sent home - but kings won’t admit to anything (even with evidence) and neither will local Hosp (apparently the ‘surgeon’ doesn’t work there any more and they haven’t heard of him) - even though his signature is on the theatre notes etc etc 🤣🙄🤷‍♀️🤦‍♀️ Until now I don’t think I could have made this up 🤣 it is quite unbelievable - so after that essay !!!!!! PALS do not like me and they do not appreciate my knowledge (neither do hospital administrators or directors) - a little knowledge is excellent ! A lot of knowledge is a nightmare 🤦‍♀️

Sorry - got a bit carried away !!! Haven’t spoken about any of it for a long time as think we all have had a bit of PTSD but slowly improving mentally and gathering strength to do round 2 😢😢😢

[ThreeSmiles in reply to cherrygirl13]

That all sounds a horrendous nightmare ☹️👎🏻. I don’t know the system well enough to know where you can go to above PALS so that there is a bit less of the incestuous nature of what is going on there. Incestuous as in not the sexual meaning but...

( describing a group of people as incestuous, you disapprove of the fact that they are not interested in ideas or people from outside the group.)

Can’t think of a better word - But I’m sure there may be.

Hope you do get somewhere when you are ready for Round two.

Miles