Just a bit of advice, those of us with hernias due to ascites, how do you get on with pain? I'm struggling to do some exercise but I absolutely have to keep it up .
Local surgeon and Leeds don't want to touch it until I've had my transplant but hepatologist says I might be on and off the tx list as I'm stabilising. Doesn't seem fair that they won't do it, I've already had one incarceration and don't want to go through that ever again.
I am venting more than anything but I'm sick of it hurting 😞
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Tizzwas
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Hi tizz.I also had a hernia,due to ascites, but I had,had one previously as a baby,so that didn't help my case,as causes a weakness in stomach wall.
I didn't cope with the pain and terrible discomfort. Horrible....made life a misery. I was due to have it operated on,but bloods were not good......so I got postponed for nearly 11 months. So as well as dealing with decompensated liver,I had this dam hernia to contend with.
Thank god bloods slowly improved.
Operation done,but in those 11 months,the sheer amount of pain.
I know exactly how your feeling,you have my empathy.
Thanks Chris, the surgeon locally just said 'as long as you have ascites then I will not do it'. His attitude towards me was really shit to be honest and I have asked for a second opinion. I'm at Leeds tomorrow for transplant clinic so I'll keep pushing them x
Hi Tizzwas - my partner had an umbilical hernia and the alien was truly escaping. Likewise they didn’t want to operate but when it burst, they had no choice. (Consultant did say he might be a burster.) He lost 7 litres of fluid at home, more in hospital before the op. Now has a neat scar for a belly button and has been put on fusemide. So it can work but suspect they wouldn’t have operated out of choice. He is v vulnerable/frail these days and back in hospital with a chest infection and broken ankle following a fall. You win some, and lose some it seems. All I can offer my partner is support and love. I feel for you all - there is no right answer.
Sorry to hear you’ve pain with the hernia. Mine is small at the moment. Consultant said nothing would be done until it got really bad. Pain hasn’t been an issue with it yet! I also asked the GP to have a look and he said I would have to look like Sygorney Weaver before surgery would be considered…. strange thing for him to say I thought! I hope someone on here has pain management advice for you. Maybe a hernia belt for support perhaps
Thanks, I currently DO look like Sigourney Weaver and obviously don't want the risk of this bugger getting stuck as it's gonna be a big op to try and fix. I do have a belt which is fine when im sat not doing anything but I exercise 2-3 times a day and it's just no good for that!
Ah, that’s awful. You are great to be exercising with it but that’s adding to the pain no doubt. I suppose just keep talking to your medical team about it. What a difficult situation for you. Given surgery is big with cirrhosis, anaesthesia etc…I suppose they wait. Sorry, I’m no help.
Ascities improved but still won’t completely go on a dose of 420mg diuretics..has anyone experienced this? I’ve been on the high dose for awhile now hoping it would work. Anyone get to this stage and see it go eventually or did it lead to draining eventually. I fear that may happen if I have to come off the high does and swell up badly again with fluid. Obviously can’t stay on them with the risk of kidney damage.
Hi love, I've had 2 drains and OMG it was like heaven so if you need it then don't worry about it!! I'm also on diuretics now to keep it in check but I think I may need another drain 🙈 They will watch your kidneys especially if you're on furosemide but this can be changed if they need to x
Speak to the transplant team - they’re great at answering this sort of question. They thought I had hernia at one point and said they wouldn’t operate because I was on transplant list as they would sort it then plus if ascites returned it would probably just reopen hernia site.
Hi,So sorry you are having a bad time with your hernia.
I have something very similar to you but my *bulge* is caused by a Divarication of the Recti.
This happens sometimes after carrying a baby, the stomach muscles split in pregnancy to allow for the growth of the baby, once the baby is delivered the stomach muscles are supposed to knit back together!
My bulge started to grow about a decade ago, getting bigger and bigger, from the size of an egg to now - I look as if I am about to give birth (again).
Not long ago I was asked when I was due, I didn't know whether to be insulted or be elated, I'm 56 🤔🙄☺️
Way back when in 2011 a Plastic Surgeon promised me that if I got down to 70kg he would give me a tummy tuck/apronectomy, only have to lose about 30kg.
Jump to 2020 rushed to hospital, I had developed Decompensated Cirrhosis, AKI, SBP, Ascites, Anaemia etc etc.
Guess what, yep. I have been told by my Consultant and GP that there is absolutely no way - EVER will I get an operation to fix this god awful stomach, not even having got down to 72kg!
Mentally this is messing up my mind, I truly look like I am carrying a baby elephant. I've started explaining to everyone I meet that no I'm not pregnant, then I have to start explaining the Cirrhosis etc and all that goes with it!
Yes, I get pain, the weight alone has given me permanent low back pain, contributed to a double prolapse & bending forward is a no no, can you imagine having lost nearly 30kg but still needing the same size clothes.
I'm angry about this!
If you can have it done get it done!
I will keep my fingers crossed for you, take care for now x 🤞
I hear your anger! I’ve been faced with those pregnancy comments too, I’m 44. Of course it’s not their fault but in fairness it’s hurtful when you’re already suffering with chronic illness and you’ve already been through pregnancy. It’s a hard hitting reminder too of life and how precious it is. We are strong 💪 we can get through this.
I was provided an "Umbilical Hernia Belt". Something like a large and wide piece of elastic band held in place with velcro. You could also purchase them from many places. The risk of death in operating on a liver patient with ascites is very high. You liver is no longer making enough blood clotting proteins and ascites bacteria infections is also very high. It is very rare to cut on a liver patient.
Hi JoeIt's not an umbilical hernia, it's abdominal but way bigger. I had an unbilical last year and they operated on me then, with no problems. My INR is fine but the surgeon I saw basically told me it was all my fault and to put up with it.
Adbominal and umbilical hernias use the exact same band. I was just putting a name to the band the liver clinic had me use. With a name you can check it out at online shopping sites so you don't have to wait.
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