Still not sure if it's Crohn's. Advice, please?

[June9teen]

Hello, everyone!

I'll try to make things short and precise.

- I have had a colonoscopy and an endoscopy, of which neither have revealed anything, but because the colonoscopy was done without sedation, the doctor couldn't look into the small intestine.

- I went to the doctor during what I think was a flare-up, with the following symptoms and test results:

*sharp pain in the periombilical area during meals. (I figured this could have been from my position at the table, slightly hunched. I can't imagine the food could have reached the intestines so fast.)
*watery or loose stool, a few times a day
*gurgling... abdomen (especially on the sides)
*extreme fatigue
*slight fever (up to 38.2 C)
*anaemia
*high protein C (3.0)
*high ESR (90/140)
*high CAL Protectin (2648)

- Later on, I started to notice other symptoms: mucus in the stool, and in the last few weeks mild nausea that would even awake me at night.

- I know that the etiology of Crohn is not known, but just for the sake of a full history I'll add that I have high anxiety on a daily basis.

- I also had my lungs, nose-throat area checked out, gyno exam, test for lupus, Helycobater test - all negative.

- I've started treatment with Sulfasalazine for a couple of months now (to further confirm the Crohn diagnosis) and the protein C levels have dropped to a 0.7 and the symptoms are now either gone, or mild. The most reocurring ones are nausea, fatigue and loose stool.

I've had digestive problems for a few years now, but I always figured it was IBS.

Still, without a biopsy and a clear view of the problem I'm reluctant to give myself a final diagnosis.

Not sure if I should go through a full-sedation enteroscopy to figure out the diagnosis, or just suppose that given the symptoms, it pretty much looks like Crohn's.

Sorry if I made any mistakes in spelling or expressing my thoughts, English is not my first language.

Thank you very much! :kiss:

 

[Jennifer]

Hi June9teen and welcome to the forum! Sorry for the late reply.

I'm sorry you've been going through this but am glad to hear that the medication has been helping some. May I ask why you weren't sedated for the colonoscopy? I know many people prefer to watch the procedure on the screen or hate the feeling or being put under (even for twilight sedation) but the fact is that its a very uncomfortable and depending on who's performing it and what's happening inside you, can be an extremely painful procedure. For me I prefer the twilight sedation.

If you want a concrete diagnosis then you'll have to continue with testing. I recommend doing the colonoscopy again (sedated if you need to, many people do need to be) and do other tests that look at the small bowel because the colonoscopy can only see so far. An MRI, MRE, CT scan, Pill cam, small bowel follow through etc can see into the small bowel in case you're issues are further up where the scopes can't reach.

Keep us posted on what you decide to do and how you're feeling.

 

[June9teen]

Hi, Jennifer! Thank you so much for your reply and sorry for responding so late, I' ve been in and out of the hospital lately - iv's for the anemia and the last few days I had another colonoscopy (with sedation this time, it was incomparably better!) which revealed that ..... drum roll.... it's Crohn's. In the small intestine.

I had already got used to the idea, but now that I know it's a sure thing, I'm feeling overwhelmed all over again. But I am fairly optimistic at the moment. The illness is mild, I'm working with the best doctor (professional and open minded) and I'm starting Pentasa and Budenofalk tomorrow. I just hope it doesn't evolve too quickly.

Thank you again for the response! I guess I'll be hanging around a lot more around here now...

 

[Jennifer]

Thank you for the update. Sorry you've been in and out of the hospital yet I'm glad you finally have a diagnosis. Not happy that its Crohn's but at least its treatable. :hug:

I thought that this would be important for you to read since you were prescribed Pentasa. http://www.crohnsforum.com/showthread.php?t=50253
Mesalamine/Pentasa is topical so not the best for Crohn's because Crohn's can cause inflammation deeper in the intestinal lining where the medication can't reach.

This is also important to read as well since you were told that your case is "mild." http://www.crohnsforum.com/showthread.php?t=51899

I do hope that the Pentasa and Entocort (same thing as Budenofalk) help get this flare under control so you can go into remission soon.

 

[June9teen]

*Sigh* My CDAI score is 160 (my doc figured it out for me), so I will take my chances with a high-ish dose (3mg) of Pentasa, but I won't rely on just seeing the symptoms disappear, I will definitely get my blood and fecalprotectine tests done even if my GI doesn't tell me to. I'll try to be careful with this, but as I said, I hope things don't take a turn for the worse too quickly and hopefully I have time to experiment.