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Crohn's Disease Forum » Your Story » Long time lurker makes his way to the surface


04-01-2017, 05:34 PM   #1
SanitizeR
 
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Long time lurker makes his way to the surface

Hey gang,

long time reader, first time getting my story out for all to read.

I was 12 years old in 1999 and I was only 4'4 which my doctors all thought was off for my age. Both my parents are 5'7 so average height runs in my family but I was not average, even for my age. Few weeks later and a battery of tests, I was confirmed via biopsy to have Crohn's disease. Thus, my journey began on a long and twisted road.

My years from 12-17 were not hard at all - sure I had some issues with constipation and diarrhea, but nothing I had not dealt with before. Fast forward - 2x Abscesses and a perianal fistula or three later, and I began to not like this dumb disease much. I was also on Remicade (one of the first) during this time and i REALLY helped.

Hospital visits began on my 18th birthday when I was rushed to the ER for a severe allergic reaction to remicade. Since I was no longer allowed to have Remicade then I was put onto Humira. That was the most pain from a shot that I have ever had. The fluid going in felt like battery acid going into my leg and I had to be held down just to get them. A year of that and I had to put a stop to it. It did not improve my life enough to have me continue to suffer.

From age 19-26 was my rough patch. I had a pill cam read incorrectly and they missed multiple bleeding ulcerations and since they were left untreated for over a year my doctors believe it caused nerve damage and then I was left with a fun diagnoses of pain hypersensitivity in my abdomen. I went through years of pain management and ended up with a implanted pump becuase my dose was far too high and it was not safe anymore. Not to mention that my quality of life was horrible anyway.

My pump gave me my life back but I am now coming up on 30, and I am flaring currently. 6-10 bathroom visits a day, super bad urgency, nausea, occasional vomiting, loads of sounds in my intestines that never have been there before (its insane. My wife can hear my intestines over the TV with subwoofer.), and my least favorite - not being comfortable in almost any temperature. I get hot and sweaty at 71* but i'm shivering and sweaty at 69*. I also have urgency and nothing comes out but I do have to sit on the throne and let my body spasm. I'm sure all of you can relate to how that makes your insides feel.

So now I am dealing with the age old question of waiting until Monday or going into the hospital. This has been going on since my mid-20's now and it is very challenging.

Thank you for reading this. turned out much longer than I thought but it feels better talking about it.
04-01-2017, 08:41 PM   #2
woops!
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I am sorry you are having a bad time. If you go to the hospital you could get your treatment started sooner. If you wait till Monday you might get to see your own GI doc who knows you. Hard decision, I know. Have you tried calling your GI and talking to the doc on call?
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04-01-2017, 08:56 PM   #3
SanitizeR
 
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Gotta be honest - since we moved last year I had to change doctors (he's awesome, top hospital in the US) and I have not been faithful to my appointments and keeping up on going. I don't have an amazing relationship with them right now. My wife keeps asking if we need to go and I'm not sure what I want to do. If tonight is bad I may end up caving and going.
04-01-2017, 08:57 PM   #4
ronroush7
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I agree with the above. Also, I am wondering because of what you said about getting hot and cold easily maybe you should get your thyroid checked.
04-02-2017, 12:20 AM   #5
SanitizeR
 
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I agree with the above. Also, I am wondering because of what you said about getting hot and cold easily maybe you should get your thyroid checked.
That's on my list. It's looking like I can't avoid a hospital visit. Going to go in early in the morning to avoid all the drunks taking up rooms though... If I can suffer another night.

Thanks for the kind words and suggestions.
04-02-2017, 05:35 AM   #6
ronroush7
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You are welcome.
04-07-2017, 10:25 AM   #7
SanitizeR
 
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So I just got out of hospital with a really bad case of c-diff again. man, 5 days of hell on earth.
04-07-2017, 12:03 PM   #8
ronroush7
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I am so sorry. Sending support and prayers.

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