So Angry

Oh Cat that’s awful. So where are you now? Can they put in an NG, let the RIG puncture heal and start again? 
If you’re in England you have the right to be seen at any hospital if they have space. Can you go to a gastroenterologist? 

Hi Cat

That is a horrible response from someone who should know better. Can you complain via the hospitals PALS? 

I'm not in your shoes but if I was I would like to think I'd be supported to see a completely different team, preferably in a different hospital.

Sending my best wishes for a more compassionate response from the professionals paid to look after you.

Shirley

I said about going back to an NG, Dani, but it would still come out of the RIG site, so it wouldn't really help for the length of time we would need for the RIG hole to close more and stop leaking. If i have fluid either oraly or via RIG it still leaks out the stoma hole.

They have put in a much larger tube and filled the balloon with more water in the hope it will stop some of the leak, it's helped a little but not solved the problem, We are also trying a small amount of feed over two hrs via the pump, a couple of times a day just to try and get something it to me, then upping the amount the next. It's not much, but we don't want to put strain on the hole and just take it slow. Anything is better than nothing at the moment.

They are suggesting another type of tube that goes further down into the intestine, as a temprary measure so we can get the RIG site healed and sorted. I'm unsure what that one is called, I also wouldn't have to be admitted for it, just go in as a day patient, this sounds promising as it bypasses the stomach, but we will see...

They did say about starting again, with a new site, but the problems i've had with this one i don't want to do that and risk all this again, i've had enough.

I am in england and there is another hospital that i could go to and would. I was under them untill they decided i was palative. My RIG and dietitian team i have are lovely  Merrygoround , they suggested i go to PALS, but i don't feel up to it it at the moment, completely washed out.

My team have been doing their very best to get this sorted for me. It's just unfortunate they are based at this bad hospital. That consultant/ surgeon was a gastroenterologist !

Cat x

Hi Cat

So sorry to hear of your negative experience. It is so frustrating when the doctor won't listen to what you have to say thinking they know better.  It makes you feel so powerless, after all you are the one living the experience that they can't fully understand. That doctor sure sounds as though he was lacking in empathy. No wonder you felt angry. Give him a miss in the future. You've had a rough ride from the start with that RIG, it shouldn't have happened.

I do hope that a suitable alternative can be worked out for you and you can have a bit of peace and quiet from it all.

Sending you hugs

Lyn