Tuesday 17 January 2012

The Best Flare Ever

Again, its been a while since I posted last.
Not too much new going on with me. Unfortunately, I'm still flaring, but honestly, this is the best flare I've ever had.
To catch up, after I wrote last I had started passing blood and feeling fatigued again. At the worst, around mid-December (of course right when I have exams) my flare was getting progressively worse with up to 15 times a day in the washroom, mostly just to pass blood and blood clots. I was also feeling drained again, sleeping 10-14 hours a day. However, on the 14th of December I had two exams. One in the morning and one in the evening. This was a very long day for me because you need to be focused to answer questions correctly. I had introduced coffee back into my diet about a month prior with no reaction. However this particular morning I had decided to skip the coffee and drink it in the afternoon as as perk to help with the evening exam. I was still only drinking half a cup of coffee once a day, diluted up to one cup with hot water. I noticed that morning that I didn't have to go the washroom in excess, but that afternoon when I came home--after my coffee-- I had been in the bathroom 8 times in two and a half hours. The only thing I could attribute it to was drinking coffee. So I cut that out immediately and within 3 days I was back to going to the washroom just once in the morning. Still blood... but much less. Maybe a tablespoon to half a tablespoon. This was an amazing revelation for me and things pretty much remained consistent after that, but I was then able to make even more observations.
After my exams, I had a three week long Christmas vacation from school. I went home to my parents from Dec 22nd until the 27th. During this time I was so relaxed! I had no schedule, I ate and cooked and socialised and watched TV with not a care. It was really a rare experience in life. Its not very often that I, or I'm sure anyone for that matter, experiences so little stress. This really opened my eyes to the impact that stress was actually having on my body because within a couple of days the blood stopped and I was having normal bowel movements again. I was of course THRILLED. :D
This brief remission lasted basically until I got back to my own home after a five hour drive in a blizzard and freezing rain. As soon as I got home I had to immediately run to the bathroom with blood.
The next day I was back to normal again and the following day made the long trek to visit friends, a three hour drive there and a three hour drive back in again, freezing rain and blizzards. It was very stressful which of course was evidenced by more blood again. This time I did not recover as quickly.

At this point I'm thinking.... is the Remicade even working? Its very unusual for me to flare after only 2 weeks after my infusion. I would normally start to flare around 5-6 weeks, if at all, but I wanted to wait it out. I had my next infusion January 4th. Usually the blood stops in the same day of my infusion, but this time it did not. It took 4 days for the blood to stop again, which I of course attributed to the Remicade. It must just be taking longer to work... I had an appointment with my specialist on January 10th and explained the whole situation and told him it was my impression that I was in remission again after the infusion. Of course not even three days later, started to pass blood again! And I'm still passing blood now after two weeks post infusion. I called my doctor on Monday and he wants me to wait another week before we do anything. I just want to know if remicade is working. If its not I don't want to stay on it, especially with the risk of cancer (though if you're not responding to the treatment it seems unlikely it would still cause cancer because its not reducing TNFalfa anymore, but that's just my personal thought process). I'm not worried. I'm not even scared. Its still too early to rule out if the hookworms are going to work or not and there are other therapies out there that I would be interested in trying, like fecal transplant and low dose naltrexone, or even DHEA. But at this point, I'm not touching a single additional therapy until we can figure out this remicade situation. So I'm just waiting. The reason why I say this is the best flare I've ever had is because, I've NEVER felt this good while flaring. Its incredible. I still have no pain, no bloating, my fatigue is GONE. I wake up each day after 7.5-8 hours like clock work. If I go to bed too early, I'm up too early in the morning. I also have energy like I've never had before.

At this point, I don't care about the blood. Its not hurting me, and its not enough to cause anaemia. All it is is a sign that there is still inflammation in my colon. But like I said, this opened my eyes to the actual physiological effects stress was having on my body and have taken steps to reduce the impact of stress on my life. I've started meditating. I bought a book called The Full Life Catastrophe. Its beautifully written and have been following the course written in that book. As well, around two weeks ago have started practising hot yoga. I LOVE it. Its everything I've been looking for in a work out. I felt before as if my muscles were dying to be used and my joints itching to be stretched out. Its nice and gentle on my joints, but in combination with the heat, the effects are so penetrating. And I love how it combines with meditation. I feel so relaxed afterwards and am finding that the meditation aspects are starting to incorporate more into my daily life without even trying. I find myself breathing through my diaphragm when stressed without even consciously trying to. This is just the beginning. I know its going to get even better and soon I'll be completely off my meds in full remission. In this long journey of dealing with Crohn's disease, I'm finally making real progress.

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