I’ve watched a change, in you.

The wealth of options for treating Ulcerative Colitis can, at times, be quite overwhelming. Over the last few years I have spent an obscene amount of time trawling the internet to find treatment. Amongst the trolls and bad advice there is a vast quantity of helpful options. I think I have read them all and then on some forum somewhere someone mentions Oregano Oil. Just another thing to add to the list that might work.

During my first flare I didn’t know what was going on and it wasn’t really possible to do much research at the time. I relied solely on the medication supplied by my doctor. By the time I had a diagnosis I was too far gone and the disease had me in it’s iron grip. I would swallow whatever pills they wanted or inject whatever solution up my butt they suggested. Whatever they said I should do, I would do. I was ignorant and weak as a result of UC. After months of illness and weeks in hospital (and one happy Remicade treatment) I was able to leave. The blood and mucus was gone and I was going to the toilet relatively normally (all things considered).  I was having Remicade every 8 weeks for 1.5 years until it was stopped when I moved house. After my stay in hospital my life changed for a while. I was very careful with the food I ate, the drinks I drank and the thing I did. However, 12 months of being in remission and it was easy to forget what I had been through and I relaxed a little. I was back drinking, eating KFC, smoking and dabbling in various recreational drugs.

During the summer of 2012 my life changed a little bit more. I stopped smoking, I took care of what I ate, I started cycling 16 miles a day and generally decided to take better care of myself. By the time September came around I had a few drops of blood and mucus in my stool. Somewhat foolishly I continued my holiday plans and took a 15 day solo trip to Bulgaria. The Balkan food combined with some intense hiking had taken it’s toll. I returned a broken man. I still didn’t stop. I went out drinking and ate some particularly dodgy looking chicken. Things inevitably got worse and it was then (and only then) that I decided to amend my diet. I ate mainly beige foods and tried to stem the bleeding by giving my colon some time to recover. After the usual downward spiral I found myself back in hospital for a few weeks. Being in a different hospital to my first flare I underwent the usual pred and increased mesalazine experiments. After which I was offered something new. Cyclosporine. 5 days of this did me little good and eventually funding was sorted to get me a dose of Remicade. A few days later I was back out.

I was tapering the steroids and also attempting to cope with Azathioprine. As we dragged into winter I became increasingly depressed. Although the main symptons had gone I still felt awful. I was mentally distraught and exhausted all the time. As soon as I got home I would get into bed with some pita bread and cheese and fall asleep. After 4 months of this I stopped taking the Azathioprine after a chat with my GI specialist. Almost immediately I felt better. It was like being born again. It was then that I decided to change my life. Again.

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Numerous herbal remedies

Once again I was eating healthy, I joined the gym, I cycled to work, I cut down on smoking… I was doing all I could to help myself feel healthier. Then I completely stopped smoking and boom! There it was! Like a neighbour you don’t like turning up at your door. You know the kind who just talk for ages and ages about shit you don’t care about. They never leave. They drink all your tea and then they ask if you can water their flowers for the next 2 weeks. Okay, so maybe that isn’t the best analogy for a bloody stool but you get the idea. This time I was not going to let it get me down. I upped my meds and got back on the Pred. I stocked up on numerous herbal remedies (boswellia, probiotics, aloe vera, turmeric, liquorice, psyllium husks, vitamin D). A remarkable thing happened. The symptoms waned a little. I had altered my diet. I was eating mainly white bread, scrambled eggs and tuna. Things were levelling out even if they weren’t getting better. Then, I did a foolish thing. It was such a nice sunny day so I had a BBQ and drunk some beer and vodka. That was it. The downward spiral had begun. I ended up in hospital and eventually after the usual format I was released to run free once again. Now I take a steady does of Aloe Vera and Probiotics whilst sticking to the highest dose of Mesalazine and Methotrexate. I got straight back on my bike and started going to the gym again. I need to keep this up. I cannot fall back in to old patterns. It is time to change my life. Again.

When I take a step back and look at how I have changed since my diagnosis is incredible. It is difficult to tell what is the cause of the flare ups. Maybe it is the booze, the smoking, the lack of Remicade or similar on going treatment or the stress. The list is endless and the truth is unknown. At the moment I am hopeful that the methotrexate will keep the wolf from the door for a while. It is a scary way to live, knowing that there only seems to be one way of getting back in to remission and it is only a matter of time until it will probably happen all over again. It is difficult to try and balance my healthy lifestyle with the lifestyle I used to enjoy. I want them both but my body cannot cope with it all. At the moment my healthy lifestyle is winning. But how long until I throw it all away. It does seem that with every flare up I haven’t taken action quick enough. Perhaps next time something happens I will immediately make the necessary changes. Rather than drinking vodka or going to Bulgaria…

Or perhaps I will never change… Peace.

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