Recently Diagnosed with Crohn's

Hello All!

Wow, what a fabulous forum I stumbled upon! I am a 27 year old female that was just diagnosed with severe to moderate Crohn's on 09/17/2010.

I apologize for the extemely long post, but I want to get my story out there in hopes some of you can shed some light regarding what I think.

I am a little confused regarding the lack of symptoms I have experienced over the last 10 years, especially after reading some of the posts on here and how bad some of you suffer.

This all started with me about 10 years ago with constipation (or at least I thought I knew what constipation was until I got pregnant) and a couple of anal fissures that had to be repaired. I also complained of mild abdominal paind and mucousy stools , but these symptoms have been gone for 5 almost 6 years. My GP referred me to a colon & rectal doctor 5 years ago. I had a colonoscopy done and there were two polyps removed as well as quite a bit of ulceration. The pathology reported strongly indicated Crohn's disease. At the time my mother advised me to follow up with a GI for a second opinion. I did and he wrote me a letter stating he didn't think the pictures and path report were impressive enough to diagnose me with Crohn's. I never followed up again and never had any issues until 08/17/2010.

I went to the ER with some discomfort in the lower right quadrant, but my body and mind were telling me something more was up. I suspected possible appendicitis, but I really didn't think I was in enough pain to actually have it. I had a CT and the doctor came in and said it was appendicitis. I was to have a 30 minute laparpscopic procedure. It turned into an open appendectomy with other findings and complications. I am not too sure what it all means but the pathology report indicates the below:

Active ileitis, colitis and appendicitis with transmural inflammation. Abscess formation and multiple noncaseating granulomas, ulceration of ileocecal mucosa, acute serositis involving ileum, cecum and appendix, proximal margin involved by serositis, NO dysplasia or carcinoma identified.

Comments from path report: Sections predominantly show an intense inflammatory infiltrate involving the ileocecal valve, cecum at the appendiceal orifce and the appendix, with transmural inflammation and multiple noncaseating granulomas. THese findings may be manifestations of infammatory bowel disease. Correlation with clinical findings is recommended.

What I have managed to gather is that the appendix, a small portion of the colon and small intestine were removed. I have not had any complications since the surgery. I have never suffered from loss of appetite, weight loss, diarrhea, vomiting or fevers. I have a colonoscopy scheduled for next Tuesday and we will see what he finds then. He gave me 3 medications to research which are: Azathioprine, Humira and Remicade. I am a little freaked out about all 3 of these after reading about them.

I honestly feel like it is possible I have been in remission for 5 years since my last colonoscopy since I have not had any symptoms. I really don't even know what a flare up is either.

When I asked the doctor why he is diagnosing me with moderate to severe Crohn's he said it is due to the following:

1. Already had surgery
2. Several Granulomas in the path report from 5 years ago and path report from 08/17/10. Apparently this is a very strong indication.
3. Elevated white blood cells
4. Ulcerations

Am I crazy to think it is a possibility I don't have this? I have read so many stories on here and I don't seem to be suffering like most individuals.

I don't see how I can justify taking some of these medications when I haven't had a flare up or symptoms in 5 years until a month ago.

Again, so sorry for the long post and thanks for reading!

Hi Laura!! :bigwave: Yes, you found the bestest Crohns forum ... I know that you don't want this disease and who does? Everyone is different, heck 5 of us sibs all have IBD and we all experienced different symptoms. Inflamation can be there but not necessarily cause you pain, or other symptoms. I only had constipation or blockage more to the word is when I was inflammed and ate the wrong food , like meat. No one knows when where you are going to flare! I don't bleed but have pain, my sister is massive in bleeding but no pain. I understand the big guns of meds scare you. Having said all this no two people react the same or get relief or severity. I think it would be best to wait for your colonscopy and endoscopy if he recommends it. Took me a full year to be diagnosed and others take a week.

A friend of mine recently had a historectomy and has Rectocele, and has IBS and there is IBD in the family. Just to give you some insight, getting information is crucial and your doctor can help you with the rest. Glad you found us, let us know what the results are! :wink:

Hi Laura
and welcome

Yes just to concur with Penny, we are all unique! Reading other peoples symptoms will only make you anxious, no two people are the same, different locations, different symptoms, different meds, different reactions and so on.
Sounds like your CD is in the terminal ileum like mine. My report was similar. I've not had surgery yet and had a good 5 years remission until a major flare and hospital back in January.
My consultant told me that a 'flare' is inflammation which brings on all the other symptoms, ie, diarrhea, pain, fatigue, joint pain etc. I didn't have any of these for 5 years neither! And I was only on Pentasa. This inflammation can be moderate, mild or severe. Some people have mild flares every day, I do. Some have them so severe a trip to A&E is inevitable. Just depends how inflamed and swollen the bowel is.
Resign yourself to the fact that yes, it's a possibility that you have this, but only a scope can give you the definate answer.
Good luck and glad you found us!
lotsa luv
Joan xxx

I just joined this forum too.

If there's one thing I've learned about Crohns, it's like a damn ninja. You can be 98% on your way to a flareup and feel nothing. With that extra 2% completion you can be writhing around in bed. I went through college and a few years after with no symptoms either and felt like I was in remission(told myself I had "beaten" it. (I still plan to beat it)), but the second I finally got health insurance my body dumped a load of crohns problems on me just like that. The medicine can keep it at bay, and it's still usually possible to live a fully normal life. Good luck!

:thumleft:

Manimation said:

I just joined this forum too.

If there's one thing I've learned about Crohns, it's like a damn ninja. You can be 98% on your way to a flareup and feel nothing. With that extra 2% completion you can be writhing around in bed. I went through college and a few years after with no symptoms either and felt like I was in remission(told myself I had "beaten" it. (I still plan to beat it)), but the second I finally got health insurance my body dumped a load of crohns problems on me just like that. The medicine can keep it at bay, and it's still usually possible to live a fully normal life. Good luck!

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:welcome: to the forum, glad you are here! It always nice to get young college kids here and share their experiences here, because they sure dont out in the real world, hardly campus talk. Even starting out in life it is hard.

Would be great if you went on YOUR STORY on the main board and got your story on your own thread so everyone can meet and greet you! Great bunch here!

Thanks everyone! I am taking it one day at a time right now. It is so nice to have a place to share with real people who have these diseases and learn about their symptoms and treatments.

Hi Laura and :welcome:

I've gotta say with a path. report like that it would be hard to deny Crohns. As the other posters have said, the symptoms of IBD can be so many and varied so I'm not surprised you are confused! Maybe you were lucky that they went in to take your appendix out and found the other issues with your bowel before they became critical. I can see why you are questioning the need for meds with your history. When I was put in the situation of commencing my daughter on Imuran it was from the perspective of her being so ill we nearly lost her so it wasn't a difficult decision for me, I couldn't bear to see her like that again.

I hope you stick around 'cause this is a fab place with loads of support and info and we would love to have you here. Welcome aboard and good luck!!!

Take care,
Dusty

Hi Laura, welcome!! Nothing to add, just wanted to concur with all said so far!! Like Dusty said, with that report from the surgeons, you need to be on the offensive. You've def. got something going on that needs attention. Best of luck to you!!

Welcome aboard! This is a great place with lot of information. Really tough bunch of fighters on here and their courage is contagious.