Recently Diagnosed...

Hello!
I am a 22 year old female that was recently diagnosed with Crohn's.

Here's my story:

About a year ago I started getting mild belly pains, which progressed to an all out war in my stomach. I got fevers, chills, aches and pains, and erythema nodosum covering my shins (both front and back). The erythema lasted about three months, but there are still scars on my legs. I'm told that this is really rare with Crohn's, has anyone else had them?
I was also exhausted all of the time, and I went from being an extremely active go-go-go person to sleeping whenever I possibly could. Even getting out of bed in the morning became a huge accomplishment for me!

I went to my primary and they put me on a gluten free diet (which made everything WORSE) They kept ruling out Crohn's because of my age, and I kept telling them "I think this is it, please listen to me!" I tried Bentyl, Hyoscyamine, and ranitadine, none of which helped. My stomach hurt so bad I could hardly even touch it, and it was so LOUD (my coworker's would talk back to my tummy noises...)

I finally got to a rheumatologist who took one look at me and said "you have Crohn's!". She sent me to a GI. At this point my flare was so bad that I looked like I was 6 months pregnant, and I couldn't keep any food down (little did I know that this was due to blockage). The GI scheduled an endoscopy and saw mild inflamation, but nothing too serious. In regards to my swollen belly, he told me I was constipated and just needed a laxative. He told me to take 1 dose of MiraLax every four hours until "something happened". Well, after the 3rd dose I ended up vomiting stool, and needless to say I freaked out and went to the ER. The CT Scan showed that my small intestine was so inflammed that it was actually a "no pass" zone. So when I put all those laxatives in my system it was like shaking up a soda can with no where for it all to go..so it came up. (I didn't even know this was possible. I am still kind of in shock by it)

I spent 7 days in the hospital, and I was officially diagnosed with Crohn's. As much as I hated it, it finally showed my doctors and my family that something was actually wrong, and I was able to get the proper tests and treatment. They did a colonoscopy but they couldn't see my small intestine, where they think most of the inflammation is located. They don't want to do a cam because they are afraid it will get stuck, so right now they are "blindly" treating me, though luckily they haven't mentioned surgery.. Since being released I have only had one "relapse" during which I vomited and had belly pains, but I think that was due mostly to over- eating because of the huge appetite the prednisone gives me. I did liquids for a day and it went away!

Currently I am on: Prednisone (started at 40mg currently at 20, doing a 5 mg/wk taper) Omeprazole (20 mg) and Pentasa (4g/day)

I hate the drugs, mostly because right now I feel great, and after a year of misery it's such a relief. But I know that it's mostly the steroids, and I'm afraid of what comes next, and what to expect.

Any advice would be greatly appreciated for this Crohn's Newbie :ytongue:

Welcome. I'm so sorry of all you have had to go through.

I'm really glad that pres is working for you. Pentasa as a maintenance med for CD can be very ineffective. It does work for some with mild disease but I would request regular testing to determine the Pentasa is truly giving CD a run for its money.

Good tests to keep tabs on things would be inflammatory markers like CRP(blood test) and a fecal calprotectin stool test which show inflammation in the GI tract.

I hope things continue to improve for you!

So sorry to hear about everything you've been going through. It's definitely crazy that you had doctors dismiss Crohn's as a diagnosis because of your age when you're actually in a very normal age range for diagnosis - and Crohn's really doesn't care about age whether young or old.

I'm glad you finally got some help but that experience of vomiting stool must have been incredibly shocking.

I would second Clash's opinion that Pentasa is a very ineffective maintenance med for Crohn's and I would venture that you have progressed beyond mild disease from what you have experienced so far. Since you are tapering pred, I would be talking to my doctors about what meds they want to start to follow on from the pred and how long those meds need to start working (about 3 months for immunosuppressants like azathioprine and 6mp, more like 6 weeks for Remicade and Humira). If your doctor doesn't want to start any of those meds, I would get a second opinion.

Whatever treatment you go with, Clash's advice about monitoring how well that treatment is working with CRP and fecal calprotectin tests (in addition to symptoms) is just the kind of advice I wish I'd been given as a newbie to this disease.

I have stricturing Crohn's in the jejunum and ileum and I've never been given the camera pill as they worry it'll get stuck. These days my doctors mainly do MRI scans to get imaging of my small bowel (less radiation than CTs and barium follow throughs) and from that make an estimation of how much inflammation contributes to the narrowing and how much is scar tissue causing it. I've had a water soluble contrast study too which is a dynamic study so that's useful for determining if narrowings are actually strictures, whereas imaging that captures a picture of your gut at just one moment in time can incorrectly identify your bowel contracting and causing a narrowing as a stricture. There are some other things they can do these days to visualize the small bowel - like double balloon enteroscopy but that has some risks.

Sorry I don't have any experience with erythema nodosum.

I hope you continue to feel much better now that you've started treatment. Keep us updated!

Thank you both!!!

My GI told me that Pentasa is a good start, I told her I was thinking of having children within the next few years and that makes her want to wait on going to biologics and immunosuppressants. However, my stomach has been rumbling these last few days and I feel like it's just not working as well as it should. Plus, I read that it doesn't help the other symptom's of Crohn's, such as the erythema nodosum, the arthritis, general crappy feeling, etc. I started it two weeks ago so I'm just waiting to see how this works...
I go in for bloodwork tomorrow so we can see whats going on in there too