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10-01-2017, 09:18 AM   #1
KMilton
 
Join Date: Sep 2017
Location: Florida
Hello:)

Hello all!

My name is Kristen and I was diagnosed with Crohn's Disease back in September 2016. The first time the idea of this disease was brought up in July of 2016 when I went to the ER thinking my appendix was about to explode. My mother in an RN and talked me into going to the ER after a week of debilitating right lower quadrant pain. While there the ER was convinced it was appendicitis and had scheduled me for surgery when my CT with contrast results came in. Once the results come back, they found that I had thickening of my ileum and nothing was wrong with my appendix. They said that it could be Crohn's disease, but it was more likely to be an infection in my bowels. Was sent home with antibiotics and a referral for a Gastro.

We are a military family, so I had to be seen on base. My PCM (primary care manager) got me an appointment with the base Gastro. This Gastro thought the same as the ER doctor and just had me finish m antibiotics and scheduled me for a colonoscopy 8 weeks out. Time came for me to have the colonoscopy and it was canceled. A few days later I was in the ER again for black tar like stool and I was in a lot of pain. I had stopped bleeding by the time the ER doctor checked me out. I was sent home with Asacol and 6 days worth of steroids. I was seen by the PCM the following day who walked me down to the Gastro's office herself demanding to get me the next available appointment for a colonoscopy. Explaining my situation to the nurse, and I was scheduled for Monday (this all happened on a Friday).

I was diagnosed with a mild case of Crohn's Disease and was treated with the 6 days worth of steroids and mesalamine. I was still having to run to the bathroom after eating and I couldn't be more than 5 minutes away from a bathroom. This is very difficult to do with a toddler. I would go back to the doctor and he did nothing. Just told me to keep doing what I was doing and the meds would kick in eventually. Bullshit.

A deployed husband, a move to Florida, and a new Gastro later, it turns out that I have moderate to severe Crohn's Disease with Stricture. The mesalamine was doing nothing because my Crohn's lives in my small intestine, not my colon. I was switched to Pentasa 500mg 3x a day and a steady dose of 20mg Prednisone once a day. Back in June I was in the ER again for bleeding, but was discharged since the bleeding had stopped and all my levels were back to normal. I went to see my Gastro and he suggested I start Humira.

I was finally taken off the steroids a month ago, and now I just take Humira and the Pentasa. I know I have been very lucky if you can be lucky with this disease as I have never had to be hospitalized or had surgery, and I have never lost a large amount of weight.

People look at me like I'm making it up, and I'm given a hard time about my diet by most. I feel like it's all in my head and I shouldn't be feeling like this. My close family and friends are very supportive and the others try to understand. I guess maybe it's because they can't see the disease so it's not real. I also haven't had such severe symptoms that I haven't been hospitalized.

My most prominent symptom is the exhausted/ fatigue. I feel so exhausted most days from the time I wake up til I go to bed. I feel like I'm failing my child when it takes all I have to get off the couch. Like right now, I feel so tired but my mom wants me to get up and go to church with her. This is not a bad thing, but all I want to do is just lay down.

Thank you for reading all of this, I just hope I'm not the only one who feels this way.

Sincerely,
Someone who just feels like giving up
10-01-2017, 10:20 AM   #2
scottsma
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Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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No,you're really not the only one who feels like you do.I'm glad you at last got a diagnosis.Every thing about IBD takes an age and a lot of patience.Your fatigue is pretty common and maybe a blood test to test your vit.b level might be a good idea.I have the utmost respect for every one who holds down a job and raises a family etc.while coping with this damned illness.We're always here to support and listen to you,so feel free to give vent whenever you feel the need.
10-01-2017, 12:12 PM   #3
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I agree with the above. Sending support.
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