Freaking Out! Colitis or Crohn's?

Hey all,

I recently posted about my emergency surgery, but for those who didn't see it, I had my colon removed but my rectum preserved because it looked good. (I was septic, that is why it was emergency.)

Anyway, they got the pathology report back and it was indeterminate colitis, which means I could have either UC or Crohn's. The doctor also said that since I had a healthy looking rectum, they could just connect my small intestine to my rectum and avoid the j-pouch all together, which would be a much easier surgery and would allow me to have more bowel control.

The problem is, she also said I could have to have a permanent ileostomy if Crohn's manifests itself in my small intestine (I think, I was kind of having a panic attack at this point). Also could end up having a j-pouch if my rectum starts looking bad.

I also started having lip swelling and raw spots 4-5 days ago, which I know can be a symptom of Crohn's. I am going to the Ear Nose Throat doctor tomorrow about that.

My question is, if I do have Crohn's, can I still get a reversal surgery? I don't have any cramps or whatnot, so I imagine my small intestine is fine. I just really REALLY don't want to have a permanent ileostomy. I know tons of people have awesome lives with them, but it really is damaging to my self esteem. I feel gross and yucky and as shallow as it is, I feel like my most beautiful years are being wasted with it (I'm only 21).

I don't know, I am freaking out right now waiting to see what is going to happen and I don't have a lot of information and I'm afraid of living my entire life just waiting for the other shoe to drop. Also this swelling makes me look like a failed plastic surgery experiment, my lips are so poofy. :(

Does anybody have any information on or experience with this? I already have problems with anxiety and all this is really stressing me out. I feel non-functional. :(

Thanks!

Kelly

Hi Kelly -

I am sorry you had to have emergency surgery, I can't imagine how stressful this must be for you. As for surgery, I don't know much about it because I haven't been through it. I don't think there is any way to know if you're dealing with Chron's at this point aside from having an endoscopy and even if you have one, the Chron's could manifest many years later.

You may get more answers on the Chron's or Ostomy board here on HealingWell.

Have you spoken with someone about your anxiety?

what did the the prometheus serology report indicate? did you have a capsule endoscopy?