Tube feeding has been going really well and I'm currently boasting a 4kg weight gain since my tube was inserted in August and although this is fantastic, there have of course, been a few set backs.
I came off my elemental oral diet mid way through September after my GP told me that the nhs would no longer fund my peptamen since I am now tube fed, this wasn't so much of a problem since I am getting all the nutrients I need through my tube but I missed having something to sip on with some 'substance' so began on purees and soft foods with varying success and have been feeling very sick this past week and just sipping clear liquids, better than nothing though!
I have had non stop problems with the stitches which hold my bumper in place constantly tearing out. When I went to the hospital for the seventh time to get them replaced I was unfortunate enough to see a A&E consultant who we will call Dr Shitface for reference. He refused to believe it was difficult to see my surgeon/consultant and also refused to restitch the bumper saying there was no way the tube would come out then reluctantly glued the bumper to my skin - well, surprise surprise, it had come away within hours and I had to use half a roll of tape to hold the tube in. Things became worse as the constant friction of the tube moving in and out constantly produced a great load of granulation tissue. Still no appointment. Finally last week the pain became too much to bear and after taking more than 2 hours to get out of bed, every movement set me screaming as though a serrated knife was being shoved in my stomach, I went to A&E where I was told I had a severe infection and prescribed antibiotics. Two days later the pain was worse and 4 inches of the tube had come out so I stopped feeding and went back to the hospital. By the time I was seen, the infection had got even worse and my stomach was swollen and stretched around the tube site and spewing blood and pus (lush) The doctor was shocked and while he was deciding what to do the rest of the tube popped out. It was all I could do to stop myself from sobbing; I waited so long for the tube to be put in and in a split second it had gone. He called a surgeon who suggested he tried to reinsert it before it closed up but as soon as he tried to push it past the swollen and infected granulation tissue I screamed and flew down the bed. I can honestly say that is the worst pain I have ever experienced, far worse than my shattered clavicle or the following surgery. The only option was to book an emergency surgery which happened in the next hour and when I woke up, to my absolute delight, I had a new tube!! Talk about relieved! I was sent home the next day with antibiotics and fortunately am feeling much better now!
To jump back a few months, I went to see my GP with regards to the pains in my knees and ankles which for the past few years I have put down to malnutrition. I couldn't understand though why they were getting worse the more healthy I became. he looked at my joints and realised they are hypermobile; I have always been very bendy, which had aided my dancing majorly and I always saw it as a positive thing until what he continued to tell me...He looked at my other joints, my skin and discussed my stomach issues and told me it was almost definate that I had Ehlers Danlos Syndrome (hypermobility type) which explained my gastroparesis and pain. I was referred to a rheumatologist who, as I was warned was useless and told me I had flat feet and sent me off to get physiotherapy, another bone density scan and orthotics. Thank goodness for an online friend, Nat, who was more than helpful and told me about a private specialist in London who I intend to save up to go and see, this will take a while and my physio doesn't even start for another two months so in the meantime I'm just going for damage limitation. I can't walk long distances due to pain and fatigue but I do have a micro sports wheelchair which we have taken with us on a couple of day trips, just in case. I've only had to use it once but it did mean we could spent a few more hours out rather than going home early as usual. Sometimes I cannot believe how much my life has changed but fortunately the people around me haven't, my friends are all as brilliant as they ever were and don't treat me any differently to before!
My mind is starting to drift away now so I will finish and post this now before it gets abandoned again. Thank you so much for reading and again, I am so sorry for the silence.
Hope everyone is good and groovy.
Much love,
Me. xxxx
AWW thanks for the mention sweetie, love you too chicky pea! Happy tummy days xx
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