Sharing a little piece of myself

[Rainbow]

Hello all, I wanted to introduce myself. I think I wrote in the wrong forum area so maybe I could start here rather than some random spot. My story starts at the age of nine I had tons of stomach troubles and was in and out of hospitals until the age of 13. They did a couple of upper GI scopes and found ulcers and inflammation in my stomach, and I was constantly dehydrated due to vomiting. They gave it a name, but I don't remember.

In my very early twenties I started to have diarrhea and abdominal pain and didn't think much of it and tried diet change/exercise as my main treatment. It worked (well sort of) until I hit my late 30s. This is when I started having bloody diarrhea, fevers, just all the yucky stuff, we get with crohn's.

This brings me to now. At first, my surgeon diagnosed with a sub-type of MC and questioned himself with an er...um......ah kind of stutter, which made my flags go up, but I wanted a second opinion. I ended up going to the main hospital in San Francisco and was diagnosed with Crohn's biopsies/colonoscopy confirmed.

I have started treatment, and I am starting to get more energy, color in my cheeks and general emotion of relief. I don't ever want to go back to having Flares and feeling miserable, who does? lol!

I am noticing with Prednisone my back doesn't hurt or tailbone, no more vomiting, and no more constant trips to the bathroom. Woo hoo,,, starting to feel alive again. Anyhoo thanks for reading

 

[Angrybird]

Hello and welcome to the forum

I am glad you are starting to feel better! I take it you will be seeing the doc again soon to discuss a long term treatment plan?

AB
xx

 

[Judith]

Welcome to the Forum Rainbow. We are so happy to have you.

I am so pleased that you are having positive effects from your Prednisone treatment. Please keep us updated. We always love a good Success Story!

 

[David]

Hey there Rainbow and welcome Thanks for sharing your story! And good job getting that second opinion.

Like Angrybird, I'm curious what they've proposed as your longer term treatment plan as you begin to taper off the prednisone?

Again, welcome!

 

[Rainbow]

Thank you for the welcome, Angrybird, Judith, and David.

As far as my treatment goes, I still need to discuss this with the GI/Surgeon, but what I heard them say during my last appointment was two options. Start Entocort 3mg x2 a day as I taper from Prednisone. The other option was to start azathioprine, but don't hold me to this. I was in shock during the last office visit and experiencing brain fog.

I do know for sure my GI doctor won't put me on any medication, I don't feel comfortable with. I am "all ears" with any suggestions or questions I should ask during my next appointment.
Edited to add: it was extremely aggravating trying to get both GI doctors to agree on the same diagnoses. Who knows I could of left the room with 10 diagnoses labeled on my forehead.

 

[David]

I can certainly understand the brain fog! It must have felt like a whirlwind in there, especially with the aggravation you were experiencing.

I personally would want to be on something more than just Entocort, but that's just me. If the two above were my choices, I'd want to utilize both at the same time and taper off the entocort as the Azathioprine started to kick in (it can take a few months). However, I'd also utilize a variety of other means to control the disease such as enteral nutrition, supplements like tumeric/curcumin, dietary changes like the paleo diet or specific carbohydrate diet, and stress reduction techniques. I'm of the opinion that the disease should be hit from every angle possible.