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Discussion Starter · #61 ·
I somehow got to the Mayo by not eating anything but breakfast.

It's tough being in a hotel but I'm trying to eat low overall portion but high protein food to reduce bulk. Hopefully they find something this time that leads to more successful recovery. It's very frustrating to be here a year again later far worse than before.
 

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good luck. keeping you in my prayers. i do hope they can help you.
 

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Discussion Starter · #63 ·
December 6th update.
Mayo found nothing, except that my PFD was resolved - but yet no helping from my symptoms.
CT Scan normal. Endoscopy normal.

Forward to November. Back in the ER early Nov. Horribly traumatic experience since EMS didn't give me anything for pain it took a while to get seen. Next time I'm going back to not taking any pain control at him and letting EMS do it. I spent almost 2 hours there literally screaming in pain. They did a CT again and found some fluid in the pelvis which ended up being benign, was on antibiotics, doctor was considering Hirschsprung's, so had a colonscopy done and it was ruled out, still waiting on the follow up appt with the GI surgeon to discuss anything else now that the lab results are back (I didn't fully understand the report I saw online)

Had a few more flare ups along with the normal daily pains but nothing ER worthy. But I'll say this is horribly traumatic. I don't f***ing know how I've managed to stay sane. Quality life is almost nonexistent for me. Running out of options (and diagnosis')

They want me to try bisacodyl or possibly trulance. We will be discussing at the appointments soon. One thing that I'm not sure about... everyone always says its unusual the level of pain I'm in. That's not encouraging. I don't really like the idea of having to take some pain control drug.
 

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December 6th update.
Mayo found nothing, except that my PFD was resolved - but yet no helping from my symptoms.
CT Scan normal. Endoscopy normal.

Forward to November. Back in the ER early Nov. Horribly traumatic experience since EMS didn't give me anything for pain it took a while to get seen. Next time I'm going back to not taking any pain control at him and letting EMS do it. I spent almost 2 hours there literally screaming in pain. They did a CT again and found some fluid in the pelvis which ended up being benign, was on antibiotics, doctor was considering Hirschsprung's, so had a colonscopy done and it was ruled out, still waiting on the follow up appt with the GI surgeon to discuss anything else now that the lab results are back (I didn't fully understand the report I saw online)

Had a few more flare ups along with the normal daily pains but nothing ER worthy. But I'll say this is horribly traumatic. I don't f***ing know how I've managed to stay sane. Quality life is almost nonexistent for me. Running out of options (and diagnosis')

They want me to try bisacodyl or possibly trulance. We will be discussing at the appointments soon. One thing that I'm not sure about... everyone always says its unusual the level of pain I'm in. That's not encouraging. I don't really like the idea of having to take some pain control drug.
so sorry to hear this. i was really hoping mayo could help you. and i'm so sorry about all your pain. that's miserable.

i used to take dulcolax. one important thing to remember about it: don't take it within 1 hour of taking antacids or dairy products or you'll get cramping.

hopefully trulance will help you.

opiod pain pills can make constipation worse so hope you don't have to go that route.

keeping you in my prayers. i really hope you can find something that will help you.
 

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Discussion Starter · #65 ·
Thanks. Dulcolax caused me lots of bad cramping and did not help with the constipation even though I avoided dairy and don't take antacids. So that isn't an option :(

I will be trying Linzess, Trulance, and Motegrity probably in the next coming months. Other than that I don't really have any more options left.

I also will be heading to another motility clinic about 45 minutes from me to see if they have any other ideas.
 

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sorry about the dulcolax.

good luck with Linzess, Trulance, and Motegrity . hopefully at least one of those will work for you.

and good luck at the motility clinic. hopefully they can help you.

keeping you in my prayers.
 
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so very sorry. i hope and pray that somehow it gets better for you.
 
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