Duchenne muscular dystrophy comes with a whole host of perks, one of which is the possibility of losing the ability to eat. In some cases entirely, in other cases just a little bit due to difficulty swallowing and/or chewing and in some cases the problem is non-existent. However, in my case the cause is due to difficulty swallowing and often chewing. So much so in fact that when I was 16 I had to have a PEG (Percutaneous endoscopic gastrostomy) tube directly through my stomach wall in order to get the necessary nutrition and calorific intake. I plummeted down to a weight similar to that of He Man's nemesis skeletor. When I had this procedure I gained weight very quickly up to a healthy level. Basically this tube has kept me alive for the past 12 years and has put me in a situation where I do not need to worry about eating. I only now really need to eat when I am out with my friends. I am what I like to call a social eater.
Unfortunately, quite recently the whole thing has sort of gone to shit. It all started about two years ago when the tube started to work its way out. If you can imagine there is my outer body and then some muscle or in my case jelly and then my stomach. The tube normally goes through all three layers but for some reason it had worked its way out of my stomach and into my layer of jelly. Now imagine all my liquid food not quite going into my stomach. I was getting all sorts of leaks and infections. Obviously, anything that was leaking was quite acidic and therefore also burning my skin. One of the problems I had was thrush. The treatment for this is basically a steroid cream. The problem with this was that I was leaking acid so I also needed to use a barrier cream. If I use the barrier cream that would stop the acid burning but do nothing for the thrush and if I use the steroid cream I would continue to be burned by the acid. What a predicament. The solution was to remove that tube and place a temporary one in until the whole thing healed.
The temporary tube is about half a foot long with what looks like the end of a suction cup which touches my belly. The tube was about a size too small which was in order to give the site plenty of room to heal and close up around it. This sort of worked for a few days until one day I was sat in my wheelchair minding my own business when it started leaking like someone had turned on a tap. This thing smelled really bad which wasn't surprising because it was literally vomit. I decided that the best move to stem the flow of the leak was to get out of my wheelchair and lie flat on my bed in the hope that it would eventually stop itself. I got on the bed and that seemed to be okay for a few hours whilst my new carer had to mop my kitchen floor. It got to about 9 o'clock and they were giving it a wipe when all of a sudden “pop" it just fell out and I was left with a small hole in my belly. There was blood and acid and a whole cup of tea squirting out of my stomach.
The stomach lining generally replaces itself every 4 days, so you can imagine how quickly the hole in your stomach will heal itself and close off completely. Unless you have another tube or some other method of plugging the hole this is an ambulance job. This is a story for another day. Anyway, after an eventual interesting ambulance ride with no blue light I might add to my discontent we arrived at the hospital at about midnight. I mean honestly, what do you have to do to get a blue light, considering I am technically dying just really slowly. I had to lie on a hospital bed in the accident and emergency department for about three hours and I could not alter my position considering my situation. I was incredibly uncomfortable and my stomach was really starting to hurt. Other people will attest to this but I have a relatively high pain threshold. Again, a story for another day. The nurses patched me up and paged a consultant. This guy came in from home to treat me, talk about service. He put another temporary tube in which fortunately for me did the trick for a few days until I got chance to see the specialist.
During this time I must point out that I have not had any food through my tube all the while this was going on. The specialist at the hospital removed the temporary tube and cleaned the site. Once again they gave me a steroid cream to help clear it up and they also took a swab. They also put a different type of tube into me. This one was called a Mic-key. This was a much better fit and to some extent lessened the leak to more of a seep. The cream didn't do much to the stinging sensation and the decimated skin however. Ever since then I have been getting it changed every few months whilst it slowly got to a level where it was bearable.
The pain had finally stopped or I had got used to it. They had provided me with a type of dressing which stopped it leaking and also took away the pain. This thing had little bits of silver nitrate in a sort of gel which really promoted healing. That was until the company that produced them decided not to any more. I had to keep getting the specialist to demand this dressing from the supplier in my area so that I could get as many as possible before they ran out. They eventually left me with nothing which unfortunately for me pretty much brought me back to square one. The tube got really sore so once again I had to go to a hospital, fortunately a more local one. Straight away the nurse removed that tube and replaced it but not before she introduced me to a wonderful new dressing which I had never had before. This thing literally instantly stopped any leaking and removed all of the pain. She gave me a few to see me through the weekend. The problem came when I tried to get them on prescription.
With the pain and the leaking finally ceasing I had a wonderful time ringing round every chemist in the area only for them to tell me the same story which was they were too expensive fuck off. I could not get them on prescription I would ring up the chemist and argue my case. They would agree to supply them and then they wouldn't without letting me know. This went on for about a month during which time I ran out of dressings. My stomach started leaking and here I am back at square one again. I was really pissed.
After the gastrointestinal specialist and the muscular dystrophy specialist wrote me a letter basically saying give me the dressings or I will actually die, the chemists eventually complied. Since then they have admitted that after all this time they were actually allowed to provide them on a prescription. Since that time I have had these new dressings on a regular supply which has allowed my stomach to get to the point where it is just the occasional drip and just a bit red.
By this point the temporary tube that I had inserted during my trip to A&E was about three months old and needed seeing. I made an appointment at the hospital to go to the PEG clinic. After about a month due to weather I managed to get down to hospital. To my luck I got to see a consultant, a nurse, a dietician and also the representative from the food and the PEG company. I pretty much got a full system check. They looked at my previous swabs which had all come back positive for thrush and decided that it was systemic which was why it wouldn't bugger off. They took some blood which they are still testing as we speak and have decided to put me on a course of antibiotics for two weeks in order to nuke the mother fucker. Also, for the past few months I have been mostly having blended food and protein drinks to sustain myself. They have introduced me to new drinks which have more calories and less volume which should also be helpful. Hopefully, it will now all heal and I will be able to get a new tube and start my nightly feed again. All just before the Grim Reaper comes knocking at my door.
Hopefully in my next post there will be a little less woe is me. Until then I guess I will just keep getting a kicking but keep on ticking.