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Leukocytapheresis – Say what?

I once whipped that out on a GI specialist that I had gone to see for a second opinion. 

She responded : “You must know a lot about ulcerative colitis if you know about that”.  I said: “Yeah, I am geek.   I know about the worm study too.”  I had gone for a second opinion before starting remicade.  Her opinion at the time was that I wasn’t sick enough to warrant remicade and should continue with 5 ASA meds (Asacol) and hydrocortisone enemas.  We’d tried 6-MP but it turns out that I had a bad, bad reaction to that – but that’s another story.  Not sick enough, huh?  Well, at that point it had been quite a long time since I’d slept through the night without having to get up and run to the bathroom a couple of times.  You know, even if your doctor has the best bedside manner in the world, they have not walked a day in your shoes.

You see, when you present to the doctors with UC they will start you down a path of treatment.  The first thing is usually a combo of prednisone, flagyl, and cipro along with starting you on a 5 ASA.  The prednisone always worked for me to stop the flares.  However, if you take prednisone long enough, there are a whole host of bad side effects.  It’s a quick and dirty solution only.  Not something you can stay on for a long time without serious bad things happening.  So, if you are like me and have UC for a while, you’ll eventually be switched to an immune modulator like 6 MP, Remicade or Humira – maybe even methotrexate or cyclosporin.   That point came for me when my GI doctor had me get a bone density scan and we found out I have osteoporosis.  Seriously, Osteoporosis at age 38?!?  All of these treatment methods share one thing in common: since they do not know the exact mechanism of the disease, they treat the symptoms only.  I don’t know about you, but I am not sure permanently depressing my immune system is a good long term strategy.  All I know is, when I started on remicade and only got moderate results, I was thinking: “what next?”  My doctor assured me, we can cure you – by removing your colon.  That’s the talk we had this past December, 2009.  It was then that I finally decided to try something a friend had mentioned.  It was definitely alternative medicine but I looked it up and it claimed to help with UC – among other things so I figured what the heck, I’ll try anything at this point.  That thing was ionic silver water.  Google it.  I was very skeptical but the person who told me about it claimed that it gets rid of the bad bacteria in your intestinal track.  I’ve been taking 1 tsp/day since December and last night, I slept through the night and today it is after 3 PM and I’ve only been in the bathroom one time.  It’s like night and day.  Now that I am reading about the Specific Carb. Diet,  I am starting think the action of ionic silver water to prevent the overgrowth of harmful bacteria makes a lot of sense.

If you’ve gotten this far, you might be wondering why I even mention Leukocytapheresis.  My point is this: Getting an incurable disease like UC or Crohn’s is pretty scary.  The way I react to scary/unkown things is by trying to learn about them as much as possible.  You need to be your own advocate while navigating your way through the medical system.  So, research.  Learn all you can. Geek out on it.  Google Leukocytapheresis and learn that it’s been used as a treatment for UC in Japan and Europe with some success.  Again, it only treats the symptoms but at least it’s helped some people.  By educating yourself about all aspects of the disease and possible treatments, it levels the playing field when you talk to your doctor and ask them questions.  Don’t be afraid to ask.  They should understand just how profoundly these diseases affect your life.

* A recent on the subject:

Treating inflammatory bowel disease by adsorptive leucocytapheresis: A desire to treat without drugs

2 thoughts on “Leukocytapheresis – Say what?”

  1. The WORMS! LOL – that’s something I came across last year and had forgotten. I would love to talk to someone who actually tried the helminth therapy. Not in my price-range right now, but I wouldn’t hesitate to infest my gut if I thought it would work and had the chance! :)

    1. The helminth treatment is a bit pricey. I saw the guy that got that started on the Discovery Channel the other day – on the show “Monsters Inside Me”. It is kind of creepy if you think about it but he claims it took care of his allergies….

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