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Crohn's Disease Forum » Support Forum » Vent Away » I don't know what to do anymore


05-06-2015, 08:56 PM   #1
mascarim
 
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Join Date: Jan 2013
I don't know what to do anymore

Hi guys. Today is one of those days where it feels like nothing can ever go right. I have been having all of the regular Crohn's flare symptoms. I can only eat a few bites of food before getting nauseous and distended. I have extremely sharp pain in my lower right side (which is where my Crohn's was located before my resection.) Chills. On and off low-grade temperatures. Diarrhea with dark red blood. Mouth sores. Worsening joint pains...the whole 9 yards. But it seems like every time I go in for testing they find nothing. I have had xrays, CT scan, MRI. Stool cultures. All of which looked normal. My blood work ALWAYS looks normal. And lately I end up in ER bout once a month now with pain that is so intense I can't handle it, but because my blood work is normal I still get no answer. No help. I had a colonoscopy about a year ago which showed "irritation" at my surgery site, but that was it. I'm so frustrated. So confused. So lost. And ultimately in a lot of pain and uncomfortable. My GI does not give me anything for pain. He recommended Gabapentin, but I HATE the side effects and so far things have only gotten worse. I feel he thinks I am faking this all. But how am I faking blood in my stool?!? My sleep has been horrible. I am always awake in pain. I basically rely on Zofran now after eating because I'm always nauseous after meals. I always end up having to sprint to the bathroom, and es have had some accidents as well. I don't know what to do. I am confused. How can I feel so miserable with no evidence of any issue? I feel as though I need a new GI because mine is of no help. But what if the new one also finds nothing. I end up crying so often now because I feel like no one is taking me seriously anymore.
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My name's Melissa! I'm 20 and I started getting sick my sophomore year of highschool. After missing about half my senior year I was finnally diagnosed with Crohn's. It's for sure been a big change in my life but not something I think I can't handle
Diagnosed~ Summer of 2012
Meds I'm On~ Remicade infusions once every 4 weeks, Azathioprine, Entocort, vitamin b12, breckinrid (vitamin D3), Calcitrate, Nortriptyline
Operations~ Illeocecal resection January 2013
05-07-2015, 05:27 AM   #2
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Join Date: Dec 2013
Location: London, UK
I've been wondering how you are doing and I'm so sorry to hear that it's not better news.

First off, this is real. There is something wrong and you aren't faking.

Since your GI isn't helping you and hasn't been for a while, I say you are quite right - you need a new one ASAP. Yes, there is a chance that the next one won't be helpful but you have to move to the next GI to find out. They may be wonderful, caring, compassionate and figure all this out - you need to give yourself that chance. If you can, maximize the chance of finding a good GI by asking for recommendations in your area - I think you need a good patient-centered doctor who will take in the bigger picture that you are being badly affected by these symptoms/complications. You need a doctor who will look past the test results and the idea of a standard Crohn's patient (if there were even such a thing) and treat YOU not a textbook. I'd be asking if anyone near to you has a GI who is a good listener as they're going to need to hear your account of your disease rather than look at lab results.

I've been there - worried that the next GI will be just as bad after a series of awful and useless doctors - but you have to take that leap. The consequences of not doing that are far worse - even if it's just living the rest of your life like this

Do you have a family member or friend who can help you find a new GI and get an appointment? We all need support dealing with this disease and finding a new doc when you are really sick can feel like too much effort but I promise it's worth it.
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