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My Diagnosis Story (and Anniversary!)

Greetings, everyone! Rebecca, here.

After a year of visiting this forum without actually having an account, I figured what would be a better time to formally join than the anniversary of my diagnosis!

It all started late one night back in October 2013. I was having pains in my lower-right abdomen and frequent urination. I thought I was suffering from a UTI, so I went to the local clinic the following morning. The doctor gave me a quick exam, and after hearing my symptoms and pressing on my stomach and noticing my wincing, came to the conclusion that my appendix was inflamed and I should head over to the ER immediately. They called the hospital ahead of time so that when I arrived, I went through triage right away and was given my room. The pain was horrendous, as if I was being stabbed in the lower part of my stomach. To this day, I don't know how I managed to drive myself to the ER ... but I digress.

Some chest x-rays, CT scans, and blood tests later, the doctor in the ER told me that I was going to have to be admitted as an inpatient, as the problem was not my appendix, but my ileum. They hooked me up with some Flagyl and steroids, as well as various medications for pain, including Dilaudid. I was taken to the upstairs of the hospital where I would end up staying the next seven days. I was informed on my third day in the hospital that I was going to need a colonoscopy. The colonoscopy revealed that my colon was severely ulcerated and my ileum was extremely inflamed. The biopsy results from the colonoscopy are what later confirmed the GI doctor's suspicion that I had Crohn's disease.

After leaving the hospital, I was given 100 mg of Imuran and 40 mg of prednisone which I was supposed to take for two weeks, then taper off by 5 mg at a time each week. I ended up having another flare up in January of 2014 and was back at the hospital for four days, then placed back on the same dosage of prednisone as before. You can imagine how thrilled I was when I found out I had to go back on it! :facepalm: My GI doctor wanted me to try Remicade, but my insurance denied it so I have been taking 125 mg of Imuran for the past 7 months (my doctor upped my dosage after he realized that I was still having awful pains and flare ups).

With the prednisone out of my system and all that's left is the Imuran, I feel that it hasn't been working. I can't eat anything without feeling extremely bloated or suffering from horrible stomach pains. I have also been in about a two month long flare up and have been going back and forth between bouts of diarrhea and periods of constipation. I also suffer from extreme fatigue .. if I'm not at school or at work, I'm in my bed or on my couch sleeping. As if the pain I go through on a daily basis isn't bad enough, I think being asleep for a large percentage of my day is what really makes me feeling like I'm missing out on having a life. I informed my doctor of this long lasting flare up last week, and he said that he would speak to my insurance company about switching medications since, clearly, after a year of being on Imuran, I haven't shown signs of improvement.

This all hasn't been the first time I've experienced stomach pains or fatigue. At 21 years old, I've been suffering from excruciating pains all over my abdomen for my entire life ... I saw my first GI doctor when I was three years old. I'm glad I finally found out what the cause of my distress is, but I'm still trying to cope with this disease and the various treatments that I sometimes feel like are out to get me rather than help me. Tomorrow is the day I start my treatment with Cimzia ... it is the only other thing my insurance will allow at the moment. I'm terrified and nervous (I'm sure we all know the side effects), as I've read some people's posts about their experiences of feeling sick after their loading doses ... but I'm also excited, in hopes that maybe this medicine will help me get on the right path of treatment!

If you made it this far down, I sincerely thank you for taking the time to read my story. I hope I didn't bore anyone too much! I promise my future posts won't be this long. :thumleft: But anyways, I will keep in touch and let you guys know how my first day of Cimzia goes for me, if you're interested! ;)

Best of luck to everyone suffering from any sort of pain, IBD, IBS, etc. It's a tough road, one that not many people know about, but we are all stronger than we might let ourselves believe we are. Never give up!

And lastly, happy Crohn's Dx Anniversary to me! :dusty:
 

DJW

Forum Monitor
Hi Rebecca and welcome.

Not gonna congratulate you on the disease. I will say good on you for getting through a very tough year.
I hope the meds get you into remission so you can get on with life.

Have you kept a food and symptom journal to see if you have specific food triggers .

Sending you my support.
 
Hi, thank you for responding to my post!

I kept a food journal for the first five months and altered my way of eating altogether, but I got frustrated at the lack of results so I discontinued logging my food into my journal (I continued to watch my eating, though). So far, I've discovered that greasy foods, foods with high sodium content, and whole wheat/grain and other fibrous foods cause me to experience discomfort within five to ten minutes of eating. I'm also lactose intolerant.

The way I see it, I have to embrace what life has thrown at me and remain positive. I can't keep living negatively anymore, as it is not good for my physical or mental health. So I'm going to start making the best out of this whole situation. I view my diagnosis day as a new beginning towards strength, and I want to celebrate my new found strength, not my disease. :)

Thank you so much for your support, and I wish you all the best with your battles as well!
 

dave13

Forum Monitor
Location
Maine
Welcome to the forum.Happy to hear the positive attitude! You have been through a lot already,you truly are strong and tenacious. :)
 
Thank you again, DJW, and thank you as well, Dave! :) Your kind words mean more to me than you know!

I'm trying to stay positive, despite the setbacks and frustrations ... I was supposed to receive my first loading dose of Cimzia today, but after calling my GI doctor's office multiple times and speaking with the medical assistant, it appears that they didn't get the medicine today from the pharmacy that was mailing it to them. I'm hoping it comes in tomorrow. I wanna get this show on the road and start the treatment already, whether it helps me or not! Only one way to find out!
 

dave13

Forum Monitor
Location
Maine
Yeah, Iwas like that with Remicade. Didn't want to be on it, but was anxious to get started. Hope you start Cimzia soon. :)
 
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