Am I complaining? NO! – I am still alive. I have spent four weeks in the hospital with discovery and four weeks at home, recovering. The rule for me is no swallowing since what I swallow may go into my lungs instead of my stomach. I am given water, medications and nutrition directly from a liquid into my stomach.
No taste, no smell, no pleasure but highly efficient.
Plus, my weight has stabilized at 145 lbs. Is this the correct weight for me? Could be!
Could I do this the rest of my life – live with food and drink pumped directly into my stomach? I can’t answer that since I do expect to be eating the regular way in a month or so. Soon, I hope, I go back to the hospital for a ‘swallow’ test, if COVID-19 restrictions allow me in. A positive test will indicate that I am on the way back to eating and drinking normally which is back to, basically, a healthy diet.
Finding out that you have an autoimmune disease can be a life-changing diagnosis. Autoimmune diseases occur when the immune system, which is the body’s defence mechanism, becomes confused and identifies healthy cells as foreign. This causes it to attack the healthy cells, triggering flare-ups of the condition. My cancer – melanoma – was considered the trigger for the dermatomyositis and was removed surgically, on Dec. 10, 2021.
Being without food and liquids passing through my mouth and down my throat is not nearly as difficult as I had expected. I do miss the chewing and swallowing and the time off when eating, but that is about it. I can still enjoy the smell of coffee and foods as they are prepared. It saves a lot of dollars, since going out for dinner is out of the question. The weight at the ideal level to give me a BMI (Body Mass Index) of 21 is 155 lbs. My weight is currently 145 lbs. This system of eating maintains this index quite easily. The disadvantage is that I need to be connected to the IV to get my food from the IV for eight hours of the 24 hours that I have per day. My wife looks after my feeding and managing my feeds is harder on her than on me. When I am recovered, I must not go back to old habits of snacking.
Plus, I was on a steroid called prednisone daily and two infusions every month of IVIg (Intravenous Immunoglobulin Therapy). The reason I need IVIg is my immune system has started attacking my own body by producing antibodies directed against my own cells. Are these infusions working? Maybe! This is a slow process but there is some progress. I am very slowly getting stronger. I really am anxious to get my life back to normal, but there is nothing that I can do about it other than be patient. There does not appear to be any measurable factors that I can use to recognize progress. The doctors said for me to have patience.
The nutrition, drugs, etc. go directly into my stomach. In effect, this Isosource Fibres from Nestle Health Science, page 31. Their website, gives me 1,500 calories of nutrition over the eight-hour feeding period per day. Late last week we also got a call from our dietician. She asked how I was doing and then she recommended that my nutrition feed be increased in order to increase my weight about 10 per cent. This food is 10 per cent protein, 47 per cent carbohydrate and 35 per cent fat with 18 per cent of calories from protein.
I have no idea what all of this means. But this is what the hospital gave me to allow my body to be fed perfectly while I am on a stomach feed. I continued with the prescriptions and supplements that I was using when I went into the hospital. Now it was up to the medications, mainly a steroid called prednisone and the infusions – IVIg – to get me back to normal eating and drinking, again. The prednisone has also been reduced to 40 mg per day.
I had an appointment with my surgeon last week. He is happy with the results, so I am happy. He removed a melanoma from near my left armpit of 6.3 cm – very large. I have an appointment with the oncologist next week to review the chances of having another melanoma and setting up a treatment regime to prevent that.
Fortunately, both the home care and hospital personnel keep in touch. I have had a visit from a physiotherapist in order to get my exercise regime re-established. This is very important for my overall health – both brain and body. I’m already thinking of the future. Unfortunately, my brain health (dementia) has taken a turn for the worse as my exercise and lifestyle has been reduced while I wrestle with my dermatomyositis (DM). This disease is most formidable.
I keep wondering whether my basic belief still holds true: The brain controls the body and the body feeds the brain.
I hope so. This is a simple way to look at the health of the body as a whole.
My next column is Feb. 3. “My Voyage with Dementia” continues with both dementia and dermatomyositis.
I hope you join me as my voyage continues.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease to AD. He shares his experiences in his column entitled “My Voyage with Dementia.” Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com
