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Ulcerative Colitis
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Posted 2/17/2023 3:18 PM (GMT -8)
I’ve been flaring since September… Finally get around to making a doctors appointment for the GI after I got my referral today… and my appointment is on July 6! In the beginning I was in so much denial that the disease came back, I’ve been GOOD without meds for a decade, it’s like a switch just turned the disease off after a fecal transplant, now it’s back on.. I don’t know what to do, we are planning on moving cross country in April to Nebraska, I don’t think I can get an appointment before that. I might just have to go untreated until we move and make an appointment in April for who knows when, October? I want all this bleeding to stop, that is my main symptom, but what can I do?!?!
Posted 2/17/2023 3:53 PM (GMT -8)
Just bleeding? No diarrhea or urgency?

You could ask your PCP to do some stool tests to check inflammation and pathogens, They might be able to prescribe something for you.

July is far too long to wait to see a doc when you are flaring. Are there other docs in the area you could be referred to that you could check with? Also, your PCP should be able to advocate for the urgency of getting an appointment sooner. Since you haven't seen a GI for such a long time you are going to have to get scoped. See if your PCP can get a scope scheduled for you.

Moving in April is tricky. Do you know what insurance you will have wherever you move to? If so, go to their website and search for GIs where you are moving to see if you can get an appt scheduled now in case there is a long wait.

When you did the transplant before was that a do it yourself transplant? If so, is it an option to do it again?
Posted 2/17/2023 4:58 PM (GMT -8)
Blood and mucus is the main issue, I’m “lucky.” I’ve had diarrhea this flare but it’s gone, I tried a thousand things, I can’t tell you what helped. I have an appointment with PCP on March 22, I got this referral from urgent care.
No idea what insurance we will have, my husband is the breadwinner, he is going to get a new job.
Pray for me I remain stable. I’m gonna do more fecal transplants just to raise the odds I stay stable. My 16 month old is my donor *vomits*
Posted 2/18/2023 10:18 AM (GMT -8)
Your PCP can give you rectal and oral mesalamine meds to help this flare.

q
Posted 2/18/2023 12:29 PM (GMT -8)
You can do virtual visits with the University of Chicago IBD specialists if your insurance covers telehealth and out of state. Mine does and that's what I've been doing for nearly 2 years now. They're great and they got me in within 2 weeks.
Posted 2/18/2023 1:21 PM (GMT -8)

quincy said...
Your PCP can give you rectal and oral mesalamine meds to help this flare.

q

Thanks Quincy, that makes me feel better. I’ll have to contact my old doctor probably and have them send my medical records to the new PCP… I like how you’ve never been on biologics btw, you give me hope mesalamine can work long term for me..
Posted 2/19/2023 11:38 AM (GMT -8)
FF...I learned how to use them properly, because gratefully, I had a doctor who understood the value of mesalamine oral AND rectal (and pushed the concept of patience with using them).
Now, my results with c-scopes are normal (because of the meds)...however, I still flare minimally and treat quickly. If I were to stop the mesalamine...I would be in a bad space when however long it would take for the inflammation to appear and progress. I only went off meds the first year of diagnosis..Doc and I realised it was a big mistake, and the next 3 - 5 years was a huge learning curve as to what symptoms meant what. Paid off...but there are always a few curve balls when other stuff enters the equation, so Im still surprised occasionally.

Looking forward to hearing how you're doing through the process...and the response of your old PCP.


q
Posted 2/20/2023 2:48 PM (GMT -8)
Update: so when I got my GI appointment for July I stressed it was urgent and she said she would put my case on the doctors desk… well, I got a call back today that my appointment is tomorrow at 9:30 am.
This gives me a good impression of the doctor and that he takes UC seriously, I hope i have a good experience and can get a treatment plan before our big move.
Posted 2/20/2023 3:30 PM (GMT -8)
That's good! This is definitely a good impression of the Doc. Let us know how you make out.
Posted 2/20/2023 9:57 PM (GMT -8)
👍🏻
q
Posted 2/21/2023 7:45 PM (GMT -8)
FF,

Personally, I'd try to get my meds stocked up before the move. Research your spouses new job insurance... See if you can find a GI in the new location.

You really need a scope to see what's going on in there. Can you schedule that before you have to move?

Clo
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