Sunday, 10 November 2013

Fighting Illness - How to Win

Over the years I have had many medical issues that were easily solved such as atrial fibrillation a condition where the heart races. This was easily fixed with medication I take every day.

Over 10 years ago I had difficulty eating so I had a peg tube inserted. This is a tube that connects your stomach to the outside, it allows you to be fed liquid food directly into your stomach. About six months after I got it my peg began to leak with stomach contents spilling out onto my lap. It got steadily worse over a number of years, until I started to wake up with the entire bed covered in vomit. It had to stop.

Eventually we tried to solve it by inserting a new peg tube in a different location a couple of inches to the right of the original site. They removed the old peg tube and told me that the hole would eventually heal - it didn’t. I would have started to starve so they inserted a peg extension that would bypass my stomach and go directly into the small intestine. The problem is the stomach acts as a buffer that holds food liquefies it and then gradually introduces it to the small intestine. This meant that I had to be fed over a 24 hour period. Some people adapt to being fed like this, but not me. My body absolutely hated being fed like this and I just felt horrible all the time.

The hole in my stomach continued to leak bile and liquid that flowed back up the pipes from my small intestine. I was not in a good way and I was slowly getting sicker.

The solution to this problem was seemingly simple. The new peg worked fine and everything could go back to normal if I could repair the second hole in my stomach. The issue is because of my muscular dystrophy I cannot have a general anaesthetic without serious risk of drastic complications including death. Doctors also refused to do the surgery without anaesthetic only using local anaesthetic, because you would still feel it. My GP told me that if they did abdominal surgery without anaesthetic the pain would kill me.

No doctors were willing to help. So I did my research. The primary reason for anaesthetic is actually not to do with pain. It is to stop the patient moving. You don’t want a patient to sit up and punch the surgeon in the face for causing such pain. It would be extremely unpleasant to have surgery while you are completely paralysed, but fully conscious - so they knock you out. This has the added benefit of removing all sensation of pain.

I have Duchenne muscular dystrophy, it is very difficult for me to move - functionally I am paralysed. A surgeon is completely safe provided he can cope with a constant stream of obscenities. I was willing to take the pain as I knew that eventually the condition I had would kill me, or destroy my quality of life.

It took a good six months of badgering various surgeons playing one off against the other appealing to their egos. Eventually a surgeon volunteered to do the surgery.

I was not even nervous just very worried that the surgery wouldn’t work, but I knew it would. They injected lots of local anaesthetic around the peg site making sure that all the layers including skin fat and muscle was numb. This was the most painful part - it really bloody hurt. Then the surgeon had to cut through all those layers and remove the column of scar tissue between my stomach and the skin of my belly. They removed the scar tissue and then proceeded to stitch all the layers back together, starting with the stomach, then the muscle and finally the skin. They left a hole in the skin which healed very fast (something to do with allowing infection to escape (can’t remember)).

The next day I started being fed into my stomach and I started to feel better although my stomach was very sore for the next few weeks. My leaky stomach was cured.

When you have a seemingly unsolvable medical problem, there is a chance there is some way to fix it. The secret is to be stubborn and don’t let the doctors brush you aside. Try to get the doctors to be more like a detective and give them a good motive to really think about your issue. Get them to communicate with other doctors and even do your own research - the Internet is an amazing resource. Think about the issue scientifically, but also be willing to try other types of medicine except of course homeopathy (a bigger load of bull shit is not possible).

I did have another ongoing condition with headaches and painful leg cramps destroying my day. I tried everything to try to fix the problem including, stopping taking my medication (the ones that wouldn’t kill me if I stopped taking them), cycling through each one every week. I got to my wits end, until one day I went into hospital for a serious skin infection. I was put on a saline drip, among other treatments. The headaches and cramps immediately stopped, they started again the day after I went home.

A friend of mine said that taking extra salt in your diet is supposed to stop leg cramps. I started having half a teaspoon of table salt twice a day, the cramps immediately vanished. I stopped taking the salt to make sure it was definitely the cure and the cramps come back. Much suffering was caused by a lack of salt. I believe salt has an undeserved reputation as a dietary mass murderer.

There are some medical conditions that are beyond our technology to solve, such as my muscular dystrophy. The secret here is to keep hope and try your hardest stay alive and see the day where good treatments are finally available.

Well that’s what I think anyway.

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