PEG FEED

[Lullabell1]

Hi hoping you could answer or help me with a few of my problems I went into hospital in march 2016 with Liver abscess I lost an awful lot of weight so much so the doctor and dietitians had to get together to feed me through my nose into my stomach I also have pancreatitis which I have to take croon for that didn't work so they then fed with me through my veins which also didn't work so the surgeon decided to do a peg feed which was the only thing I signed for when I woke up from the anaesthetic I was in the worse pain I couldn't move at all. I was given oramorphine Ketomine 50 % morphine patches. I was taken to critical care he had put the pipe right under my rib cage I had staples all over my stomach the dietitians came in and said "we can't feed you through that it is an illegal pipe" it was like a hosepipe they also said I should not have had all these staples all over my stomach I couldn't move for weeks because of the pipe was where he had situated it he then decided to remove the pipe but I was then left for weeks with two smaller pipes in then he decided to take my gallbladder out after 6 months in hospital a would bag was put over the hole which was like the size of a 10p peice I was still being fed by drip and nasal into my stomach what a mess he had left me in my stomach was burnt around the hole and inside fro m the acid and bile eventually the pipes were taken out and I was let out of hospital the hole still being there and burning my stomach the dietician were horrified by this my daughters asked how long the hole would take to clear up he just shrugged his shoulders I was losing around 2 litres of bile and acid into the wound bag every day I was having to change the bag around every two hours as the acid burnt the bag away that was in august last year since coming home I'm more or less housebound I can barley walk the acid as corroded away some of my rib bones at the top and side the pain is horrific my mood is very low and lost a lot of mobility my stomach is burnt all around the hole it as got bigger and looks and feels like I've got a blow torch on it all the time and losing now at least 3 litres of bile into the wound bags which has a pipe to empty it but the acid still burns the bag off I'm on 60 mgof slow release morphine every twelve hours and 900 MLS of oramorph 1600 mg of gabepentin I'm very depressed so am iPod 45mg of miritazapene 50 grams of anitryptylyn paracetamol plus sleeping tablet diazepam cycozine because I'm just sick with the pain I'm in horrific pain he said it would heal within two month after a month of shrugging his shoulders at my daughters but got bigger I've had septasemia and been on antibiotics for 16 weeks it's awful pain he's now trying to say he will try and close it but doesn't know where he's going to redirect the bile to and could have to reopen the site immediately if it doesn't work as it may cause septicaemia again I've got lots of photos off the hole and the bleeding and the bile and acid it goes from black yellow eluminous green to clear with quite a lot of bloodv I don't want him to touch my body again I wondered wether you can advise me once this is sent I will send you lots of photos to show you what I'm going through which I will send when you reply and the and wether you can give me any advise. I also have a an Colostamy bag now because all the morphine stopped my bowel from working I'm only 47 years old and wondered if you have known this happen before thankyou in advance kind regards Lisa Boothman.

[Kaz60]

Hi Lullabell

Wow you have really been through it. Your story sounds horrendous & I can understand why you feel so low.

If it were me there is no way I would let the same surgeon near me again. I would write in a letter of complaint to the hospital to start with. You have the dieticians as witness. I would think you have grounds to sue the hospital for what they have put you through.

I hope that you manage to find a good surgeon who can put this right for you & you will start your road to recovery. I wish you well.

[Lullabell1 in reply to Kaz60]

Thankyou my love for your kind words i feel like I'm in a nightmare and I can't get out of it I've never felt pain like it the pain team won't even see me now as the surgeon as said he will try and redirect the bile and acid but he's not looked at it since august my go won't give me anything a locum come out she's the first person to have looked at it she was horrified she said that I looked like I had been shot in the stomach and the area is burnt and bleeding the pain is like no pain I've ever had I'm sreaming around the house that surgeon is not going to touch me ever again but because it was a mistake nobody will touch it it's awful x

[Kaz60 in reply to Lullabell1]

This is just awful for you,, maybe if the pain is so bad you should go to A&E. I would definitely ask to see someone else. Are you in UK?. Surely they can't refuse you more pain relief !! It's not right that you need to wait for him to do something else if you are in pain you need relief now.

[Blossomstix]

I am totally shocked. You need to complain to the medical bar and see another doctor who can refer you to a consultant who can help you with this.

I hope you get some good medical help sooon.

[Zantri]

Lullabell1,

Get a referral to someone else. Go to your GP, explain your current situation pain levels & go elsewhere, this does not sound right.

I would then seek medical legal advise, but get your pain & acid sorted as a priority. If your Dr will not refer or pain is too much head to A&E of a different hospital.

I hope you get this sorted.

Z

Xx

[Lullabell1 in reply to Zantri]

Thankyou for your kind words I don't know where to turn my pain is so horrific I'm screaming but the pain team won't even see me again because that surgeon said he will try and redirect the bile and acid no more of him touching me he's cocked up off me the doctor came who was a locam she's the only person to look at it since august even the surgeon hasn't looked at it she said that I looked like I had been shot in the stomach and the area around is just burnt the size of a football the swab she took as come back with multiple infections I don't know where to turn 😭😭😭😭

[lynnbibb]

I can't advise, just say how sorry I am you've been through all of this.

Like everyone else says, please get another opinion and definitely get in touch with PALS to complain. I hope they manage to sort your problem soon x

[Lullabell1 in reply to lynnbibb]

Thankyou Lynne I feel like I'm in a nightmare that I can't get out off the pain team and go won't up my pain relief because that same surgeon who has cocked up on all my operations said he will try and redirect the bile I'll die first if he's going to touch me x

[strangetimes]

Are you in the UK ? If it is a UK hospital there should be a PALS team to help you with complaints .

I think you need to go elsewhere for medical treatment .

You need a large hospital where staff are skilled in repair work .

St Thomas's in London has a good reputation .James Gossage is a highly experienced and skilled surgeon .

I am so sorry to hear of your situation .I hope you get some help .

[Lullabell1 in reply to strangetimes]

Thankyou yes I'm going through hell the pain team go wound managers and I'm stuck because won't give me any more pain relief because the surgeon said he will try and redirect the bile my life is a mess I don't know where to turn too my pain I horrific it's dripping blood as well now but can't have that surgeon doing anything else to me for the first time since the bag was on a relief go came out and asked me to take off the bag she was horrified she took a swab I have multiple infections I'm on four lots of antibiotics I'm also so depressed and anxious tired with changing bags continuinuolsly I need something to help me but dont know what to do x

[lynnbibb]

I'm not surprised you feel like you do.

Whereabouts in the country are you?