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Is It Time For Yet Another Gastroenterologist?

C-Girl

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C-Girl Contributor
C-Girl
Posted

It's been 16 months since my diagnosis with celiac disease, and I'm still struggling, as are many of us. I'm on my third gastroenterologist. I haven't had any follow up blood work done in a year (I was way down on the celiac panel a year ago) and have no follow up endoscopy in sight. Is this normal?

 

I also have microscopic colitis, and the GI had me on asacol (failure!), Bentyl (FAIL!!), budesonide (great but had side effects), then uceris (Awesome! Perfect!). Now I'm off the uceris because she refused to keep me on it long-term (I was on it for 2 months). My symptoms are all back, and now I have an extra super fun one: I had a massive bleed from my rectum the other day. Boy was THAT a shocker! It was a horror show in the bowl - I probably lost half a pint of blood. It stopped after a couple hours. She called me back, finally, two days later and didn't seem concerned, didn't want to schedule an appointment, just said to call back if it happened again.

 

Should I be expecting a better level of care? Or is it normal to be neglected this way?

 

Just wondering.

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RMJ Mentor
RMJ
Posted

Corticosteroids such as Uceris can have serious side effects, and the official FDA-approved labeling is for using it for only 8 weeks.

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My gastroenterologist isn't being very helpful either. She will order blood tests when I request them, but my antibody levels have NOT all gone down to the normal range (2-1/2 years), she gives no advice on what to do, and she hasn't referred me to a dietician, although she is part of a celiac center that says its dieticians are experts at finding hidden sources of gluten.

jddh Contributor
jddh
Posted

May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual.

 

Sounds like you need consistent long-term therapy for your colitis. Yes, you deserve better care. If you can manage the time and expense, check local ratings and find a GI specialist who will work with you for sustainable results, and perform adequate celiac follow-up. Celiacs NEED that.  I know this isn't news to anyone in America, but I flew from BC, Canada to get to the Mayo and it was 100% worth it.

RMJ Mentor
RMJ
Posted

Uceris is an extended release version of budesonide.

C-Girl Contributor
C-Girl
Posted
  • Author

May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual.

 

Sounds like you need consistent long-term therapy for your colitis. Yes, you deserve better care. If you can manage the time and expense, check local ratings and find a GI specialist who will work with you for sustainable results, and perform adequate celiac follow-up. Celiacs NEED that.  I know this isn't news to anyone in America, but I flew from BC, Canada to get to the Mayo and it was 100% worth it.

 

Thanks - the side effects were abnormal menstrual cycles, which I didn't see with Uceris. The budesonide is supposedly absorbed more into the bloodstream than the Uceris formulation, and Uceris also works farther down the GI tract which is where I need it. The PDF that RMJ posted shows very little side effects even after 12 months straight use, so I don't know why my doc wont' let me try it for a little longer. She suggested biologics, which have far more side effects and are only about 50% effective. Why do *I* have to know all this? Shouldn't the expert know this?

icelandgirl Proficient
icelandgirl
Posted

How very frustrating! I'm so sorry you are dealing with this (((hugs))). In my opinion you deserve a better level of care. A toilet bowl full of blood to me is quite concerning. Unfortunately, it does seem like a lot of Dr's don't care enough.

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