Hi all.
So after having my jej tube fitted and healing fairly well, I’ve suddenly got a nasty infection and swelling under the plate with small amounts of blood and pus coming out. Abdomen is hard under the wound also.
Contacted Abbott nurse, who have been dealing with the tube last night and they came out today. Apparently the plate is stitched in too tight for me to be able to clean underneath. I hadn’t been told I had to clean underneath anything by the hospital anyway, I had been told to change dressing and just clean around the outside which we have.
So from fitting an unlicensed tube, sending me home the same day even though they weren’t supposed to and now this. I’m a fighter and have always powered through the best I can without any help, but now I’m sitting here after a call to the doctor chasing up my antibiotics while this infection is inevitably going to get worse feeling very despondent. A district nurse should have been assigned to help me with cleaning, again, I hadn’t been told this so assumed we had to deal with this stuff on our own.
Abbot Nurses have been brilliant, and helping me even though they’re only supposed to deal with helping me use the feeding tube. They’ve been the only contact I have had regarding post surgery or anything like that.
All this makes me a little apprehensive as to what’s to come. This is just the start of a very long and tough journey and falling at the first hurdle in this way doesn’t seem like a good sign.
hopefully the infection clears up and they loosen th plate to a point I won’t get any more infections as I would really like to try to power through the chemo while I still have a good amount of strength in me.
Apologies for the rant, I just had to write something down. Now I’ll sit and wait for the doctors to call back and find a way of going to pick up my antibiotics. My surgery isn’t the best historically, so I’ll expect to have to chase it up before they close even though it has been labelled urgent by the Abbott nurse.
Hope you guys are all doing well today and thanks for reading.
Dean.
bless dean what a s***e show, and as you will see from this family forum there are so many instances of things that shouldnt happen but do, least reading other peoples experiences like yours, it will help others to double check and maybe question. new years eve my top tight stitch came out, taped over it and went to churchill next day, they had to put a new looser stitch in but didnt need to numb it before, was painless.
it was the abbot nurse that advised to get some adhesive remover ready for when the dressing of the triangle came off, christ that was wise advise god knows how long that would have taken to get it off after the op. not sure if they gave you a rucksack as well as the hanging feed, and not sure if you have been given any 200ml feeds to use with the food pump.
once you start getting used to it, its much easier, i really didnt want to have one fitted but so glad i did, especially for taking meds, so might be worth if not done already getting flushable dissolvable meds, especially paracetamol ready for pain relief. few of us on here are at same stage as you, or further down the the line. i had my op 8th jan to reconstruct my stomach to new oesophagus, but still using the peg to at least get 1500 calories each day whilst i get used to eating small but often food. finally found out my stomach is now size of an orange which explains a lot of why i struggled, so next step is to get my head around that! being able to eat, eat with my husband, cook and hold a knife and fork was so liberating again. as everyone says, marathon not a sprint, so each day at a time
also running at night isnt as bad as i thought, and leaves the day free. if you have any questions or need to share you are in exactly the right place.
take care
Jules
Really helpful Jules ….. we are on the road behind you with op hopefully April time. What kind of adhesive remover were you referring to? Dissolvable meds …. great tip!
Sounds like you are doing really well with everything 
Geraldine x
They left my triangle thing with three stitches on open I did not have a dressing as they said they tend to become infected with the moisture and warmth of the body ! Have to admit I was frightened of pulling it out though but it did stay clean and dry 
♀️
