You Know You're a Crohn's/Ostomy Patient When.. - Uncover Ostomy
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You Know You’re a Crohn’s/Ostomy Patient When..

…you check yes to 12/30 health issues on a clinic history form..

I tweeted this last Saturday while I waited at the NYU Health Services Clinic to be seen for some issues I have been having over the past month.

Now, don’t get all freaked out or anything- my Crohn’s disease isn’t back! I’ve just had some all around medical issues that, because of Crohn’s, no intestine, lack of an immune system, and an ironic immunity to many pain medications, I have to take any issue with my body quite seriously. I’m sure some of you can relate.

I know how easy it is for me to get sick and for that sickness to turn into something disastrous, and so does my mother. Being the caring, loving, and sometimes overzealous worry wart that she is, made sure that before I moved here to NYC, I had the highest medical insurance plan that my university would allow. The comprehensive plan. In case I got sick here in NYC, I would be covered.

That’s all well and good when emergency situations arise. I don’t know much about the medical system here in the U.S, but I do know that emergency situations can get very costly if you don’t have insurance. Lucky for me, my mom splurged for the plan that covers as much as possible, according to the university. Swell.

I was hoping, then, that having this intense health insurance would also come in handy in situations like these; where I’m having issues, when I’m not sure what they are, and when I need them to be diagnosed and fixed before they become too dangerous.

Unfortunately, the one thing my medical plan here in NYC doesn’t have is the doctors who have known me and have been helping me for my entire life. Without these doctor’s, however, no matter how comprehensive my medical plan is, it doesn’t mean I’m going to get help.

Now, I am definitely not knocking the health facility at NYU. In fact, it was great! I was seen basically as soon as I arrived and filled out my medical history form (mind you, that probably took a good 15 minutes..), and the facility was clean and fancy. Everyone was also extremely friendly.

My issue, however, wasn’t any of their faults- it was simply my own.

After explaining the issues I have been having over the past month with the doctor who had taken my case, I then dove into the short version of my medical history. Crohn’s disease, hospital stays, medications, diets, anemia, ostomy, etc etc. I explained all of this, the doctor took some notes, and then they took blood.

Great. Awesome. Monday, they said, I’d have my results back and we could go from there.

Monday morning I get the results of my tests and advice from the doctor I have been dealing with. I am told my tests results are normal, though I should probably get them checked again in 6 weeks (if there are no abnormalities in my tests results while the issue is going on I doubt there will be a change in 6 weeks, I thought…) and was also told that I should do some things that I had explained I was already doing.

Awesome.

Needless to say, that visit to the clinic was useless.

I get pretty frustrated with the fact that I constantly get sick with random things here and there. It’s even more frustrating that, often, these random things are things that can’t be left alone in fears of the issues getting bad, or in the worst situation, the issues exacerbating my Crohn’s disease. I am probably the most frustrated, however, when I have to explain my entire medical history from beginning to end to a new doctor.

So, in order to make sure I get back to being healthy, I’m heading back home to Toronto for a week and a half to see the doctors that have had to deal with me for so many years. There’s n0 guarantee they’ll know what’s going on either, but at least they have some contextual background to use for my diagnosis.

Upside to all of this? I get to spend tons of time with my mom and boyfriend, both of whom I miss very much.

Cup half full.

Cup also half medical anomaly.

Thanks comprehensive medical insurance, you’ve been great.

Jessica Grossman
info@uncoverostomy.org
2 Comments
  • Sandra
    Posted at 08:53h, 19 November Reply

    A tip for you while you are in Canada, get your doctor to make a copy of the parts of your file he would like to see if you were a new patient to him. You can then keep copies of these and use them when you start up with your new doctor in NYC or where ever. I did this when I moved from Canada to Germany and then to Sweden. It really helps the new doctor get up to speed with the critical basics of your case.

  • Chloe
    Posted at 00:14h, 30 November Reply

    Hi Jess. i wanted to e an ostomy ambassador, and you wanted to hear my story. this is the first time i’ve told my story to another ostomate. i am so excited to share it with you. here it is:

    i actually got my ostomy at the youngest possile age. im one of the three people i know who did. i was orn with NEC, (necrotizing entrocolitis) which is a type of colitis. i ived in the hospital for the the fist six months of my life. when i finally got out i had: two tubes going into my stomach and chest, a g-tube, (in case you dont know what it is, its like a thing tht looks like a fire hydrent sticking out of your abdomen) six mickey buttons, (i actually dont know what those are. hehe.) an ileostomy, and a cast and tube on my left leg. that was from two months earlier, the day before we were supposed to go home. i was in a room with a nurse that was supposed to do some tests. long story short, some wires caught my foot on fire. i had to have five surgeries just to get it back to normal. one was plastic surgery, and another was a skin transplant. i was even a medical pioneer for one of them.
    so after six months we went back to the hospital to get the cast and mickey buttons off. this time we went to the childrens hospital in oakland, instead of the san francisco hospital where we had been before. your not going to believe this, but the childrens hospital doctors told us that the numskull san fran doctors had given me the wrong kkind of ostomy. seriously, how can they make that mistake? wow must be some clueless doctors. anyway, they finally convinced my mom to let them take out the ileostomy and give me a colostomy instead, which was what i wa supposed to have in the first place. they told us that i would have the g-tube and the colostomy for my life, and the tubes until i was eight or nine. well, they were wrong. a few months later they told us that i only had to use the tubes at night, so they created little holes with caps. we’d stick the tubes in at night then take them out during the day. later, i got those off at two and a halfe, then the g-tube out at three.

    well, thts pretty much my story. luckily, i havent had any medical problems since i was five. yea long story there. so, if you have any questions tweet me, or reply to this. prefrerably reply to this. thanks for listening! i’d love your feedback. thanks!

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