My sutures are super tiny now- I expect they'll probably heal up without a ton of bad scarring too, as long as I don't poke at them or anything.
Today I had my followup with Dr. Kaplan, where we got some good news! Kyle and Mom came along because we were expecting that I'd be put on Remicade, and that decision would potentially really affect Kyle as well (in terms of the risks of bad side effects to me, and financially in the future as well). However, Dr. Kaplan didn't feel that I needed to go on Remicade after all, so that's great news!
He told me that the surgery had basically eliminated the really actively diseased parts of my small intestine, so essentially, right now I'm pretty much Crohn's-free. That doesn't mean I'm cured by any means- the likelihood of it coming back is pretty darn high, and because of the severity of my disease at onset and my age and various other risk factors, the chances of me needing another surgery at some point are also high. Therefore, we decided it would be best to take preventative medications with the goal of preventing or putting off this second surgery. My maintenance therapy is going to consist of taking 150 mg of Imuran daily, and as I've mentioned in previous entries, it does take a few months to really kick in too. I'm getting weaned off the prednisone, which is good cuz I'd like to have my natural face shape back instead of this puffy chin I have now.
So, this is all good news, but I'm still not totally good as new- they did remove quite a bit of tissue, and since they removed my ileocecal valve, I may experience troubles absorbing fluids during digestion. I may also need to do things like B12 shots, since the terminal ileum is where B12 is absorbed, and I no longer have one. That all depends on what my bloodwork shows. But overall, this is really no big deal!
Dr Kaplan said that I'm pretty much in remission now, which is fantastic. So the game plan is Imuran every day, bloodwork every week to check on things as long as I'm on Imuran, and if things start to flare up and get bad again, then we may discuss Remicade/Humira, but for now we don't need to worry about it. I have to see him in 3 months just quickly to make sure the Imuran is working okay for me, and in 6 months I'll have a colonoscopy to check stuff out, because apparently with Crohn's it can start to come back without any external symptoms showing, and they'd want to catch it early this time, rather than have to fight a losing battle resulting in surgery like this time (since I didn't get treatment until things were so far along).
He also was supportive of me seeing a naturopath, which I know will encourage a lot of people who have been trying to get me to see one. Kyle asked what things I can do to help myself stay in remission in conjunction with medications, and Dr Kaplan told me to limit my refined sugars and high fat foods (darn), and that there'd be absolutely no harm in seeing a naturopath. He pretty much just said "as long as you don't rely ONLY on your naturopath as a substitute for medical care, it's fine by me", since apparently he's had very sick patients deny treatment before in preference for natural stuff with poorer results. He even killed some of my skepticism about certain natural treatments for Crohn's, such as drinking aloe juice- he actually said there has been some marginal evidence in support of aloe as a natural treatment! So I guess I should bite my tongue! So, there we go! I'll be looking into seeing a naturopath, and will be watching my diet and taking Imuran. Definately not so bad! :)
Here's a recent pic of me (cuz the last one I posted here had my really bad moonface and now I have a cute haircut to show off too!):
1 comment:
Wow: "removed my ileocecal valve" and "I may also need to do things like B12 shots, since the terminal ileum is where B12 is absorbed, and I no longer have one"
This is just incredible, modern medicine. So happy to hear you're clear again.
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