Crohn's Disease Forum » Support Forum » Undiagnosed Club » Feel like Iím falling apart


05-06-2018, 08:02 AM   #1
skates07
 
Join Date: May 2018
Feel like Iím falling apart

Iíve been experiencing my symptoms for almost a year and a half now. Nausea, vomiting, blood in stool, intense abdominal pains, weight loss, the list goes on. Last summer I had about 15 tests and all of them pointed towards ďnormal.Ē My doctors knew there was a problem and could see how light I had become. My endoscopy showed an irritated esophagus (likely from vomiting) and could see inflammation in the small intestine. My colonoscopy showed my colon was normal but could see inflammation in the terminal ileum of my small intestine. My doctor believes itís Crohns and ordered a Prometheus genetics blood test and a capsule endoscopy so he can see whatís going on in my small intestine, which I had done a week ago.

For the past month my symptoms have been unbearable keeping me bed ridden and miserable. On top of that my grandfather passed away very unexpectedly a little over a week ago which obviously has not helped my mental/emotional state. I have finals for my university coming up next week and my care for it could not be further away. All I care about is wanting this pain to go away. They only have me on protonix so far to help with acid reflux and control the vomiting. Iíve been on this for a year and while it has definitely helped control the vomiting it does not touch my other symptoms. I donít know what to do anymore. I know Iím becoming depressed over this and pushing away people who care for me because Iím grumpy and irritable from being in constant pain. No one I know has experienced this stuff first hand and while everyoneís intentions are in the right place, they donít understand the daily emotional roller coaster that I live on. My boyfriend of five years has been great, holding my hair when throwing up, coming with me to doctors appointments, and listening to me every single day tell him how much pain Iím in even though thereís nothing he can do about it. I can tell he gets frustrated over this and frustrated that Iím more tired and cranky than usual.

I donít know how to stop being miserable when I feel like my pain will never end. I feel like the universe is testing me and Iím losing. Itís so hard to imagine Iíll ever feel better or get my normal life back.
05-06-2018, 08:32 AM   #2
ronroush7
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Hi. Hold on. When your doctor gets the results and the right meds it will be better. Sending support.
05-07-2018, 01:04 AM   #3
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
Sending you my support ❤.
Welcome to the forum.
It sounds like you have been through a lot.
I totally understand the frustration, it never seems to end.
Can your doctor prescribe you something for depression and anxiety ?
I suffer from Major Depression.
Your boyfriend sounds wonderful 🙂.
Keep us updated and take care. 🌻
05-07-2018, 12:46 PM   #4
Scipio
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Location: San Diego

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∑ Stelara
My colonoscopy showed my colon was normal but could see inflammation in the terminal ileum of my small intestine. My doctor believes itís Crohns and ordered a Prometheus genetics blood test and a capsule endoscopy so he can see whatís going on in my small intestine, which I had done a week ago.
This part sounds exactly like my case. And I ended up positive for Crohn's by both the blood test and the capsule endoscopy of the terminal ileum. When will the results of your testing be available? Once you get a diagnosis you can get going on some remission induction therapy to get the disease under control and reduce or eliminate the misery of your symptoms.
06-04-2018, 08:01 AM   #5
embyrr
 
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Join Date: Oct 2015
Location: Brussels, Belgium

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Hi. Hold on. When your doctor gets the results and the right meds it will be better. Sending support.
Can only echo this.
I was diagnosed at thirteen after months of exams and inconclusive tests. It was a very painful period and I remember losing weight tremendously, having an inflamed stomach, and crying all the time. I didn't know what was going on.

Once they diagnose you and prescribe medication then the first steps begin. Sometimes they may not get it right but you have to keep pushing because your quality of life comes before everything else.

It's terrible about your grandfather. Your university exams can always be retaken. It's good you have a supportive boyfriend. Remember, it's your narrative first, not anyone else's.
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