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Newly diagnosed and introducing myself

Hi everyone,

I am so happy I have found this forum. I was just diagnosed on September 1st so I am very much a newbie to all of this! I wanted to tell my story and introduce myself as I wanted to start participating in the forum instead of just lurking ;)

I started having what I was calling "stress poos" in January, where I would get really bad diarrhea if I was feeling, well, stressed. After hearing how much it would cost to fix my car...instantly had to use the bathroom. Bad day at work...diarrhea. And so on. That passed and stopped for few months so I just wrote it off as the beginning of the year was a super stressful time for me so I thought I was just having a hard time coping. Spring time was ok for me and then I got worse in the summer.

In the beginning of July I started having multiple loose stools per day and they were very urgent. I thought it was just from eating too much BBQ and picnic food after camping, but when it was still happening consistently I made an appointment to see my GP. She ordered some blood work and an ultrasound. Nothing abnormal with my blood and the only thing they found in the ultrasound were a few gallstones. When she called me with the results and I told her I wasn't any better she referred me to a GI.

My first appointment with the GI was very productive. He really listened to me when I told him what was going on. He ordered some more blood tests to check my CRP and sed rate, as well as testing for celiac, and wanted to do a colonoscopy. At first I thought it seemed like a lot to want to instantly do a scope, but I appreciated that he listened and understood that I knew something wasn't right with my body.

I hadn't had much pain, but in early August starting getting some sharp feelings behind my belly button. And then I started having pain in my lower right quadrant. One night, a week before my scope, it felt really bad so I went to the ER as I was worried about it being my appendix. CT scan showed my appendix was thickened, but it wasn't appendicitis. Inflammatory markers were still raised and my white blood count was high. I got some fluids and was told to follow up with the GI about it.

My scope went as well as it could, although I feel embarrassed that I started crying because I was scared to be sedated. Though once it went in my IV I was out like a light and waking up in the recovery room! My GI said he saw a tiny bit of inflammation but we needed to wait for biopsies. A few days later he called and said the biopsies confirmed Crohn's--in the ascending colon, cecum, and ileum.

I was briefly put on prednisone, but was switched to budesonide as prednisone made my eyes very blurry. I also just started 100mg of azathioprine 10 days ago. So far no side effects and I'm scheduled to get my bi-weekly blood work.

I'm scheduled to get an MRE next month too see if/how much of my small intestine is involved. I'm a little nervous for that. Anyone have any experience with those?

I feel very lucky that I was able to get from my first GI visit to a diagnosis in less than a month. I am so sad when I read how people have to fight months or years for a diagnosis. However, I'm also in a bit of denial. I'm only having 3-4 loose BMs and my pain isn't that bad. An annoying, constant 2-3 that feels like poking and twisting at my belly button. Nothing debilitating and I can still eat just fine. I keep finding myself thinking "I barely have pain, others have it worse, maybe I don't have Crohn's". But, I asked my doc if it could be anything other than Crohn's and he said no. I'm hoping this means I caught it very early and I can get it under control.

I'm very scared that it is going to get worse. I worry about one day needing surgery or something. I try to remember that, even if that happens, I'm fortunate to live just 5 miles away from my GI who is at a renowned University Hospital. I'm just trying to wrap my head around it all. They have a therapist in the GI department who works exclusively with people who have IBD and I have an appointment with her in December. I'm hoping that will help. And I'm glad I found this forum for support.

I did not expect to write this much! Congrats if you made it to the end!
 
Sorry you had to join this forum, but glad you did. I hope you feel better soon. There are a lot of sub-forums here on diet, treatment etc and am sure you will find it useful. People are lovely here and always willing to help. Take care :)
 
Hello and welcome! The MRE is a piece of cake. I don't enjoy the liquid that is required to drink with the procedure. There's about 3 liters of it and the taste is not pleasant. After that, they hook up an IV if they are using contrast. Then, you lay down in the tube and relax while they take images of your intestines. I've had a few done. The only unpleasant one was when I had a technician who was a hack at putting in IVs.
 
Welcome to the forum! I too thought what I was experiencing at first was just stress related. I didn't see a Dr until I couldn't eat without excruciating pain or vomiting after. I have Crohn's in the colon only, also had pain behind belly button and lower right quadrant. I never went to the bathroom more than 10 times a day (unless prepping for a colonoscopy). I have been embarrassed when I cried at the Dr office as well...oh well I am sure they have seen it all!

Glad you were diagnosed quickly. Good luck with your next test and let us know how it goes. Wishing that you get to remission quickly.
 
Welcome Katertot!
It can all be a little overwhelming at first. My advice would be to try not to get too stressed out about the future, educate yourself, and really look into your diet.
 
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