Crohn's Disease Forum » Support Forum » Vent Away » Pain is Unbearable

02-26-2014, 05:41 PM   #1
Johnatron's Avatar
Join Date: Jan 2012

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Pain is Unbearable

Sorry for the following rant but I feel like I cannot tell anyone in person the pain I'm in as they might think I'm after a 'pity party' which is not the case at all.

So I was diagnosed with Crohn's in the summer of 2009 and had a small bowel resection in February 2012 after months of being on steroids. Since early 2013 I have been having 8 weekly doses of Remicade which worked wonders at first but stopped being effective after my August dose last year. I had spoken to my gastroenterologist about the symptoms creeping back in and he ordered a double dose which I had 3 weeks ago now. There were 2 days of relief but now I am back taking codeine for the pain in the evening and my stomach swells so much on the right side I am afraid it'll perforate like before. He had told me if the double dose of Remicade didn't work he would order a colonoscopy which it now looks like I will have to have again... Third time's a charm! My next dose of Remicade was also ordered to be a double dose but I just cannot wait that long to see if it'll work and I am not hopeful at all.

I guess my frustration lies with the fact that now the Remicade has seemingly stopped working I am at a loss as to what direction to go in apart from having more surgery. I had tried Humira the few months before my surgery but the bowel was in such bad shape it didn't work really. I'm 20 years old and my body feels wrecked. Sometimes I can't handle the relentlessness of this disease and I just want a break from the pain. I'm sure many of you would agree you wouldn't wish this debilitating illness on anyone!

Like I said, sorry for the rant but this is the one place I can talk to people and know they truly understand the reality of having CD/UC!
02-26-2014, 07:19 PM   #2
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

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I'm sorry to hear what you're going through.

When was the last time you had a colonoscopy? It sounds like you are about due for one, anyway. Has your doctor discussed adding another medication, or switching entirely?

Hopefully they're able to find you some relief soon!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

02-26-2014, 07:36 PM   #3
Senior Member
Kero's Avatar
Join Date: Dec 2013
Location: Edmonton, Alberta

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I very much feel your pain. I've been in pain now, for about 8.5 months. I have had to quit my job, and I can't do much around the house. I haven't even gotten a diagnosis as to what is wrong. I can definitely relate to how you feel. But there has to be answers and treatment for you out there. And until there is, we are here for you

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