Update on me

[Deleted]

If anyone cares about my bowels. 

 I got in with my GI today (after stomping my foot and throwing a fit when they said her next opening is in October). She came in especially to see me. 

So far so good. Aside from hair loss, I'm doing well on Imuran. That one elevated liver enzyme is back to normal.

Doc wants to schedule an MRI in the next couple of months to check for disease activity/inflammation. Because my disease is located in my jejunum, we can't really get a good picture of it on endoscopy or colonoscopy. (Speaking of colonoscopies, she said I don't need another one for 2 years since my biopsies were clear!)

If the MRI shows increased disease activity, she will appeal the Remicade denial and use that as "proof" of medical necessity. If not, well, then I'm doing well...

She referred me to a derm to get annual skin checks. Said we can decrease my blood draws from every 14 days to every 3 months - YESSS!

Basically I need to keep up with what I'm doing - low residue/low fiber diet, avoiding trigger foods (including all gluten), Imuran and vitamin supplements, exercise, stress management.

[Deleted]

yup - it is.

I'm still getting a second opinion next week though.

This doctor agreed that Imuran isn't enough to control my disease but she said that hopefully it isn't too long until we can get Remicade approved. She doesn't want to go with other treatment options that my insurance wants me to try, and fail, before approval... those options are a chemotherapy drug or 6 mo straight of steroids. 

[anna7602]

That all sounds promising. I'm hoping things continue to look good for you, tacom!

[OrangePixyStix]

Glad to hear it's overall good news. Crossing my fingers that you don't have a need for Remicade, but if you do then they will accept the recommendation from the doctor without any hassles. Good luck on the next steps!

[Deleted]

Jul 4, 2013 9:46:24 GMT -5 carrotsmakemefat said:

tacom any news on remicade?

thanks for asking, dear.


short story: nothing yet but hopefully soon!

long(er) story: met with a new GI who I love. Insurance denied Remicade saying they wanted to see me fail on 6 months of Imuran and steroids before they'd pay for Remicade.

New doctor sat with me for over an hour and we thoroughly went over my medical history - it turns out I am not even a candidate for steroids because I have Osgood Schlatters (w/ necrotic tibula) and joint pain - contraindictations for use that my old doctor never put together, despite my complaints of joint pain. That's good news for me because extended use of steroids could really mess things up for an otherwise healthy 23-year-old, and again, they'd be ineffective. No thanks! So now we just have to convince insurance that the Imuran isn't working.

She booked an abdominal + pelvic MRI w/ contrast for next Friday. She believes that Imuran isn't effective in managing my active disease (based on abdominal palpation, symptoms I reported, and hyperactive bowel sounds). I'm on the highest dose allowed for my body weight, so the next step is Remicade.

She plans to write a letter to my insurance once the MRI is completed basically telling them to stop twiddling their thumbs and get me what I need.  

I am ready to get this show on the road, lol. If the letter doesn't work, I'll have to wait until October, which is frustrating because I'm seeing a return of intermittent pain, blood in stool, bloat, and constipation.

[centralperk]

Ugh that is such BS about the Remicade, I'm so sorry you're dealing with all that on top of the new diagnosis. I hope the MRI shows not enough active disease to cause a real problem, but enough to get you that Remicade!