My feeding tube somehow got very badly infected causing me severe stomach pain which has been going on for about a week now. At first I thought I'd pulled a muscle from coughing so much, but then my feeding tube started to become sore to touch. On Monday night I noticed it was starting to come out of my skin, for anyone who doesn't understand, my tube is held in on the inside by a small balloon type thing, which is inflated with 5ml of water and secures the tube so it does not fall out. The fact my tube was coming out told me immediately there was a problem, I tried to deflate the balloon but no water would come out then when I tried to put more water in, it was like being stabbed in the stomach. So I held it in place with plasters and hoped it wouldn't fall out. My CF team told me to wait until Wednesday (clinic) for them to have a look at it.
The pain has been some of the worst I've ever experienced and I've been through quite a few painful things in my time lol so that is saying something! Even very strong painkillers were barely touching the pain, so I knew something needed to be done.
I attended clinic today and was unable to do lung function, firstly due to the pain and secondly I was worried the force of blowing out really hard might have made the tube fall out completely which wouldn't have been good! To be honest I feel worse than I did last week, my 'pleurisy type pain' is the worst it's ever been, I'm coughing more again and feel I may have to admit defeat and have yet another course of IV's. This was also what my doctor suggested today, he had a feel of my stomach and there didn't seem to be any problems so we put the pain down to an infection in my peg.
I was sent straight to Addenbrookes where a specialist would have a look and hopefully change it to a new tube. When we pulled all the plasters off, you could clearly see it was very infected, it was red, oozing out what I'll just describe as gunk(!) and it was so sore to touch. She quickly removed the tube, took a swab of the 'gunk' so we can know for sure if it was an infection, then I received the brilliant news that the new tube I was getting would be a Mic-Key button!
Woooooo, here is a picture of the new little tube I have :)
As you can clearly see from the photo, I have a little bit of a belly going on. Well this is because today on Papworth's scales I was the highest weight I've been in 2 years!! I'm absolutely over the moon and feel the weight side of things are really going in the right direction, even if my silly lungs aren't!
So the plan is to call Papworth tomorrow to tell them I've had my tube changed. Then sort out a follow-up appointment depending on when IV's are necessary, it may be Friday if I get very bad tonight/tomorrow, hopefully it will be Wednesday. &To carry on eating eating eating and getting fatter and fatter! :):):)