Monday, November 16, 2015

Taming the Dragon - Health Update

The thing about living with severe, refractory Crohn's Disease is that it's relentless. It doesn't give up because I'm tired, it doesn't go away because it's decided that I've had enough. It's like this dragon that's always sneaking around inside and starting fires. Some fires get put out but others grow and smolder. We can try to calm the dragon down, but he likes to get angry real quick and often at the worst possible times. I wish that I could just put the dragon on the time-out chair and tell him that he can't come out until he agrees to play nice. Only in a dream world.

Last week's GI appointment was better than one before, at least we agreed on my diagnosis (I do 100% have Crohn's Disease) and that we would NOT be talking about a reconnect surgery (reversing my ostomy by building a JPouch inside me to collect waste), at least not anytime in the next several, several years. There was more inflammation found on this set but at least it's not back to the epic level of disaster that it used to look like inside me. Still not great and not the level of healing that they were hoping to have seen.

We've entered a new phase of my Crohn's journey. The doctors have now moved to symptoms management. What does that even mean? It means that there isn't much more they can medically do to get me into remission, so we're going to try to get some of my symptoms under control. I'm not sure how I feel about this statement yet. I want to feel better, which means that we have to manage my symptoms but I want what's causing my symptoms to go away in the first place. I know that we aren't going to be able to cure this for me right now, there is no cure for Inflammatory Bowel Diseases, but I want to go into a period of remission like I see my other IBD friends having. I'm realistic though and looking at the reality of not having achieved remission in 3.5yrs, I know it's not likely to come along anytime soon. But I still dream of it, hope of it, and try to imagine what it would be like. In the meantime, I do need symptom control so that I can get back some quality of life. I need to be able to get back to school, see the friends I haven't seen very much of in almost 2 years. I'm looking forward to getting some of these symptoms under control!  Hopefully we can make the dragon a bit happier.

I guess the first step of that will be later this week with Operating Room trip #14 to get my permanent feeding tube put in place.

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