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April 2009

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Anne: Remicade Induction Begins Again

031609


Remicade infusion starts again.


Because I lost my medical coverage I was unable to continue with my treatments on a regular basis. I went almost 6 months without Remicade. When I finally got coverage back and was able to see my doctor he scheduled me for a colonoscopy. This procedure revealed that my right colon all the way to my rectum and sigmoid were fine but that the right colon leading into my ileum was completely inflamed; so much so that they couldn’t even get the scope through. This obviously means surgery sometime within the next six months.


I’m 27…..


I attend facilities at UC Davis Medical center. The staff and doctors there really are wonderful. But the process, even though they try to make it as humane as possible, can only lead one to realize how sick they truly are. I enter the treatment room and there are two reclining chairs. This is a two hour process so they attempt to make it as comfortable as possible.


Chairs
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As the IV is placed on my arm I realize again, that I am sick. There are two IV bags. One of saline solution, and one containing my medication.


IV

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IV Bags

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There is a television set up in the room for patients to watch movies if they like.


TV

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Notice however the multiple medical garbage cans underneath the TV. One with a bright red bag to indicate some sort of hazardous medical waste I’m sure.


And I’m closed off to the world by the infamous medical curtain. Supposedly so I can have some privacy, but I can’t help but feel that it’s partially because no one wants to see me sick….


Curtain

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As I sit there I realize how sick I truly am. I am 27 and this isn’t right. I shouldn’t have to change my diet. I shouldn’t have to worry about exerting too much energy. And I surely shouldn’t have to worry about the arthritic affects the Remicade gives me for about a week after treatment. I shouldn’t have to take 27 pills a day…. Just to maintain some modicum of normalcy. This isn’t fair.

The private room is nice I suppose. Even though there’s a medical sink off to my left, including the BIOHAZARD waste container. The nurses get us snacks and drinks. Turn on the TV for us or just let us read.


The Sink


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Snacks

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But the reality of the matter is I’m losing half of my colon within the next six months. I’m in the process of starting a disability claim for myself. I’ve already made initial contact with lawyers. And I’m 27. I haven’t even made it halfway through life yet. Or perhaps I’m more than halfway through MY life already and I just don’t know it.


And I have a bruise for weeks to remind me….. that I’m sick.

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Comments

craptastic!

I feel you on the being sick scenario. I stopped taking all the meds cause the sideeffects were worse....Do they know why this is happening to you?

Re: craptastic!

I have to take the meds. I didn't.... and it only got worse. So occasional nausea, hot flashes, etc.... I've gotta take them.

It's the Crohn's. There's no clear set explanation for the Crohn's but that is the basis for all the other problems going on.

What did they have you on meds for?