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Newly Diagnosed

Sat, June 01, 2019 4:28 PM

Hi everyone! 

I was technically diagnosed in 2012 but went into remission in 2013. I know this sounds odd but denial is a horrible coping mechanism. I have been in and out of the ER multiple times for (what I didn't realize were flare ups at the time) the past 7 years. I was recently hospitalized for a couple of days and have a lot of questions. I am now on prednisone and have a followo up appointment on Wednesday morning with my GI doctor. I won't lie. I really scared because I feel like I'm so overwhelmed with the possibilities and scenarios.

I am scared and lost and anxious and overwhelmed. What questions should I definitely ask? Should I ask about diet? In general, what treatment options should I discuss? I've read that the typical treatments like Mesaline (which I've been on) are not seen as effective anymore. Should I discuss starting Humira maybe instead? I am currently on prednisone (40mg a day and then tapering off 5mg per week for 2 months) and Norco 10 for pain. I'm just trying to get back to normal because right now my body can only handle so much movement and sitting for so long before my pain becomes more present. I've lost 6.5 pounds in 12 days and get really nauseas around most foods. 

I'm sorry this is so scattered but I have a lot of questions. 

Thank you, 

FPO Cmend010
Joined Jun 12, 2019

Fri, June 07, 2019 3:10 PM

Reply posted for Cmend010.

I understand the battle. I was diagnosed with Ulcerative Colitis at 14yo and suffered for 10 years with GI doctors that never explained how to heal or improve. I became a naturopathic doctor and learned how to heal and stay in remission. I have been medicine free for 10 years and did not have surgery because of natural medicine. First intervention is diet: remove common food allergens corn, wheat, gluten, dairy, eggs, potatoes. Avoid carageenan in milks and foods. Read labels. Avoid sugar! L-glutamine, probiotics, omega 3, Vitamin C and E can all help. Castor oil on tummy every night with heating pad can help restore structural integrity. I have no advice to what questions to ask your GI doctor. They never could help me. Find a holistic, naturopathic doctor. They will teach you how to improve your health and stay in remission. Hope this helps :)

FPO cf
Joined Jun 7, 2019

Tue, June 04, 2019 7:25 PM

Reply posted for Qurlypuff.

Im not the biggest fan of my GI. Initially calling to set up my appointments, he wasn’t even available to see until nearly October. I’m seeing his PA in the morning. I have had two different colonoscopies in the past. I’m hopeful that I will get definitive answers with a new colonoscopy and get back on meds. I’m absolutely exhausted, tired, and my appetite is next to none. I’d like to get back to an idea of normal. 

FPO Cmend010
Joined Jun 12, 2019

Tue, June 04, 2019 3:34 PM

Reply posted for Cmend010.

My first recommendation is make sure you have a good GI doctor.  I am so disappointed by mine.  The only actual time I have seen him is in the colonoscopy room!!  I am new to Ulcerative Colitis and now I am switching to a doctor who will actually be present when I walk into my appointment.  Have you had a colonoscopy or any variation of one?

FPO Qurlypuff
Joined Apr 27, 2019

Sun, June 02, 2019 10:29 AM

Reply posted for Cmend010.

Whatever your doctor puts you on i would ask what the success rate is. I would ask that about any biologics you are considering. I’ve read studies where the success rate of some biologics is only 30%, and the success rate for placebos is 15%. For something that can cost $5000 a dose that is not very encouraging.

FPO charbs
Joined Oct 31, 2016

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