Some days I run around like I've never been healthier and then the next day, I can barely move. I notice that healing is still so very slow. A bruise from rock climbing takes weeks(!) to heal. I don't know what's driving this but it's not fun. My immune system suddenly seems to suck even though I am chronically inflamed still. While the colitis itself seems to be gone, the extra-intestinal manifestations of it are running rampant.
I'm starting to think that this was no ordinary surgery and that fatigue and slow healing are to be expected for months if not years afterwards. (is it true that many immune cells come from the gut, the area that was removed?)
Caffeine will make things "seem" ok but its just a mirage. No wonder the wounds around my stoma are not healing. We cauterize the largest wound every 3 days (ie we burn it) and that's not enough. Time to analyze some blood work and see if the clotting and WBC counts are on-track.
Sorry for the crappy post but I'm a bit lost at this moment. The one thing I do know is that stress of being unfairly removed from my position at work is very real and very deadly. Stress hurts, but right now it is visceral and very real. I think I will take my wonderful wife out for dinner and try to appreciate what I have- the things that matter most...
Friday, January 29, 2010
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I've been following your blog because my kid has UC and surgery might be in our future. I don't know anything about the recovery process but assume it would take a lot of time and have it's ups and downs. I imagine you'd want to push yourself because you finally can but and then your body would need some down time to recuperate? As for your job, if you feel you were let go due to your illness, maybe it would be worth running it by a lawyer? I don't know if that would cause you more or less stress or how easy it would be to prove in your case.
ReplyDeleteGood Luck!
I can safely say this: My UC became so severe that despite the ups and downs I face now, I still wouldn't go back. I have no regrets about getting the surgery.
ReplyDeleteI believe the psychological aspects of the surgery may be harder than the physical ones, especially for children.
I'm not sure about the psychological aspects for children. My kid's very small and one of the factors we're considering is that if surgery is likely (which it might be, we're not sure) is it better to pump her full of dangerous meds trying to get remission (I'm scared to death of these) or get the surgery (also very scary) but do it while she's small and will grow up with it being fairly normal. I think it will be harder as she gets closer to her teens?
ReplyDeleteAlso, I don't know if you're interested in acuptunture for your joint pain (if that's what the extra intestinal stuff you have goin on is?), but if you are, I see a woman called Xiao Lan Xiao. She's really great. My dad with severe arthritis has found relief from her too. She's on Prince Arthur.
What a terribly difficult set of decisions to make. In my case, the decision was made for me as I couldn't go on anymore with all the drugs (actually they stopped working). And who wants to be on Remicade, etc for years...
ReplyDeleteBy the way, have you considered a jpouch? Or is the inflammation indeterminate?
You still have an inflamed rectal stump, correct? Which they will remove when you are ready for your next surgery? I'll say this, it took me a good 5 or 6 months to feel AMAZING again after my colon was removed. It's now been just about a month after the last of the inflamed tissue was removed (and ultimately the creation of my jpouch), and I already feel great. Not ready to run a marathon or anything, but recovery is going A LOT better and faster than after the first surgery. Try to take things slow and realize that while the body is an amazing machine, it still has its limitations. Be good to it, and it will eventually be good to you. :)
ReplyDeleteYou certainly make the case for giving the jpouch another look. I admire your bravery in giving it a chance.
ReplyDeleteSteve, my doctor told me it would be about 2 years after everything healed before I began to feel "normal," ie, not crashing everyday after school, not waking up feeling like I was hit by a train, not relying on energy drinks to be functional. It's been 14 months since my last surgery, and 8 months since my wounds healed. The thought that I have 16 more months of feeling like this is absolutely terrifying. I don't really have any advice, or a nice little inspirational message to make it easier, I just wanted you to know that I admire the hell out of you for doing all that you have so soon after surgery. Rock climbing, jesus. But remember- it is okay for you to feel like shit some days and not participate in life every once in a while. Nobody expects you to be superman. Well, I don't know, your dog probably does.
ReplyDeleteAs for the wound, I remember my surgeon using silver nitrate on my asswound. I screamed, and he said "Oh come on, it doesn't hurt that bad." He then proceeded to give me three more sticks to use on myself once a week. Not only was it a logistical nightmare to have to stick this thing in my buttcrack, but I 'aint gonna willingly stick anything that burns into my buttcrack. I threw them out. That shit hurts.
-Chelseawrz