1st time in the Crohnasphere!

[mcknev]

Hello all, my name is Michele and I am new here. Family background: My mother was 22 when she was diagnosed with colon cancer the first time. 40 when it came back and was also diagnosed with Crohn’s at that time. She passed at 42 due to complications of surgery to correct both issues.

I was officially diagnosed in 2007 (at 35) after ending up in the emergency room with bleeding and other common symptoms. (YAY genetics!) Further tests (colonoscopy, small bowel series, and blood tests) confirmed the diagnosis. The symptoms (now that I know more about the disease) started years and years before then. My G.I. Doc told me that he finds women are more apt to pass the mild symptoms off as “female issues” (bloating, nausea, diarrhea, pain) because they are very similar. I altered my diet dramatically, increased my exercise and started taking Pentasa. Unfortunately, I had a bad reaction to it and he took me off of it after a couple of months. We agreed to try a more holistic approach after that and it worked for the most part until recently.

About 4 months ago the flare occurrences increased in number and intensity to the point I have ended back up in the docs office and dancing down the “Medical Tests Highway” heading straight to “I wonder what is next-topia”. The results of the Prometheus test, new small bowel series, and the CT Enterography scan with dual contrast (i.v. and Volumen) are in and my doc is currently reviewing them. I admit I am pretty nervous to see him next week for the results.

I found this site while I was trying to figure out what exactly the Prometheus looked at and how my results compared to others in the Crohnasphere. I am not trying to diagnose myself and know my doc is the expert. I am just self aware enough to understand that I would have gone nuts if I didn’t at least attempt to at figure out what exactly what the test did.

Time to start this part of the journey.
-M

 

[dannysmom]

Hi! I liked the "Crohnasphere"! What are your Prometheus results? My son's were positive for pattern consistent with Crohn's, but I found that many doctors do not rely upon that much. Good luck with your testing and hope you get some helpful treatment soon.

 

[mcknev]

Thanks!

Doc did an entire blood workup in addition to the Prometheus tests as supporting results. He explained that depending on what the blood panel results were (ex: elevated white blood cells, liver enzymes, etc) it would support the diagnosis and help him with a treatment plan. He also ran a Celiacs panel.

As far as the Prometheus results go, I show highly elevated ASCA IgA ELISA, ASCA IgG ELISA, Anti-I2 ELISA, and a Heterozygous mutation in the SNP 8 (R702W). Do I understand what ANY of that means? Not yet! Doc will hopefully clear it up next week!

I hope you get some solid answers for your son soon.

 

[want_to_be_well]

Hello M,
I am new here too, also waiting anxiously for a colonoscopy on Tuesday - concerned because it is Th and I cannot eat (the cleaning will be interesting -- there is nothing to cleanse!). I wonder how I will be moving around at all soon. I understand the anxiety. In the midst of it, we come to the web hoping for some answers, maybe support. I clearly have no answers, but I am rooting for you --- for clarity and good days ahead!

G.

 

[mcknev]

I remember how anxious I was w/my first colonoscopy as well. The cleanse wasn't a walk in the park but didn't measure up to the anxiety I had about the test itself. For me, it was more due to the whole embarrassment factor of the procedure. Let me tell you however, once the drugs hit, and you get into that sleepy-I-don't-care phase, all embarrassment goes out the window. At least it did for me.

It was the results of the biopsy sample taken during the colonoscopy corroborated the other test results and allowed him to confirm the Crohn's diagnosis. The relief I had from FINALLY having a name to put w/the symptoms was worth it all.

Good luck w/the cleanse and test! Sending positive, healing, and calm thoughts out into the universe for you!

BTW, jello (not red or orange) will be your BEST friend over the next couple of days!

 

[want_to_be_well]

Thank you, M! I had a colonoscopy back in 2005. It went quite well. I had nothing then. I am not too concerned with the procedure itself. A bit concerned with the prep because I haven't eaten much at all in the past three days and don't anticipate much change. So I think I may be quite weak by Tuesday.

I really appreciate so much your support. I hope you are having a good day!

Take care,
G.