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Life with enterocutaneous fistulas July 18, 2011

Filed under: Uncategorized — db1264 @ 10:18 pm

I have two entercutaneous fistulas that spontaneously erupted late last year. I now wear two ostomy bags to collect the waste and pus from them. I recently quit my job as an English Language Learner – Instructional Assistant because of my health. I also lost insurance at the beginning of July. Suffice it to say, I didn’t think about not being able to get my ostomy supplies without insurance…I figured it would all take care of itself. Boy was I ever wrong. Sort of. I recently came across a support group near where I live, and I am hoping to attend the first meeting in August.

I have come across more than just a physical support group. I also belong to C3 Life and Oley Support Foundation. I also joined UOAA recently and find that talking with other like people who wear ostomy bags – all for different reasons, we all have something in common and can commeserate with one another. It’s nice to speak with others who can relate to your situation even though it is not the same.

I recently spent 6 days in the hospital because my RBC was at 5. Dangerously low and near death from what I have come to understand. I had some procedures done and received two transfusions. The second one took hold, thank goodness. I know I am probably still anemic, but probably not nearly as bad as I have been. I am on a daily regime of vitamins and Boost protein shakes, three times a day (the shakes, not the vitamins!)

Life for me has been a day by day thing. I don’t know of any better way to handle what I am going through other than day by day. Sometimes moment by moment. It all depends on how much pain I am in and what my day is looking like. Fortunately I don’t have to do a whole lot of getting up and down or moving around, although I do. I have a child to take care of, be mother to and I am also a wife, daughter and full time online college student.  Life for me did not stop just because I got sick again. I won’t let my fistulas (which I have named Pablo and Vincent) get me down, although I must admit there are days when I am in such pain it is hard to get out of bed and live my life, but I do. I have to. I need to be strong and continue living. I’m too young to die and I’m not going to allow this to consume me, at least not entirely.

I originally came on here in June 0f 2010 and had never come back until I found that a recent acquaintance of mine is on here. I figured this would be the best place to blog and have her find me more easily. Now I just need to blog here and everything will be great!

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