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My Doctor Sucks…And So Does UC

Introduction:

I am 25 yrs old and diagnosed with Ulcerative Colitis at the age of 20. I was on Asacol and suffered horribly then switched to Imuran and went into remission for about 4 years (no meds).

 

My Story:

I am experiencing my 1st flare after diagnosis. I started to notice random swelling of my eyes and joints before the GI symptoms started. I was in Chicago for business and I noticed that diarrhea and discomfort started. I immediately left Chicago and returned home (Houston) so that I could get treatment. Unfortunately, the GI doctor is horrible. She does not listen and often rushes me out of the office with a new medicine. Anyways, after a colonoscopy she said she couldn’t determine if it was Crohn’s or Colitis. My previous doctor told me it was Colitis so I don’t know why she is saying Crohn’s. Does anyone know the difference when diagnosising the two?

Also, I had high alkaline phosphotase in my blood work, which I am told is evident of liver damage. This really concerns me considering that this all hit so quickly. I was tested and it’s not hepatitis but my ANA levels were high (autoimmune antibodies). If anyone has experienced this please let me know what the outcome was because I am worried about this. I am scheduled for an ultrasound and biopsy soon.

Lastly, I am really frustrated because the prednisone is no longer working as well as it once did. I was put on 40 mgs and I was still having diarrhea and unbarable stomach pain at night. My primary doc increased the dose and told me to take a round at night for the belly pain. The GI prescribed some antibiotics but I refuse to take anything she prescribes because she’s a mess.

I would love a natural cure for all of this and I am particularly interested in JTP’s “Listen to your Gut” but I am a little apprehensive because I don’t know how trustworthy it is. If anyone has tried anything naturally and has had success let me know because I can’t continue with these meds long term. Until I find something that works prednisone and Imuran it is.

Down but not out,

Thanks

Submitted in the Colitis Venting Area by “Praying For Long Term Remission”

 




3 Responses to My Doctor Sucks…And So Does UC

  1. Kush July 31, 2011 at 2:40 pm #

    Hello,

    I was diagnosed with Ulcerative Colitis when I was 21. I tried Serovera, but for some reason it just did not work for me. What got me on it was they had live video testimonials of people who tried it and had success. I tried Google and BING but could not find 1 negative review about Serovera. In my case, it seemed to make me worse. Serovera is AMP (healing part of aloe vera plant).

    You should definitely get a new doctor! Ask her or your new doctor about Lialda or Apriso, mesalamine enema, and 6mp. Any drug is not 100% safe, but these are safer alternatives to prednisone and imuran. Of course I am not a doctor or giving any medical advise, but you should look the three drugs up and ask your doctor about them.

  2. amber August 1, 2011 at 11:43 am #

    Hi! My doc began noticing elevate alkaline phosphatase in my blood work about 10 years ago. After a MRCP and a liver biopsy it was discovered that I have Primary Sclerosing Cholangitis which is a rare liver disease that damages the bile ducts of the liver and may or may not eventually cause cirrhosis. It is connected to UC (something like 90% of people who have it also have chronic UC) and while it can be scary I am here to tell you it is not a death sentence. I have had this disease for 10+ years now and other than itching ( a common symptom) and an alkaline phosphatase level of 363 (norm is between 38-126) I do not have any other symptoms. Of course your elevated level could be something completely different (I have read you could also have it if you are growing or have had muscle damage) so don’t freak out! Just wait to have the tests done and try to gather as much info beforehand so that you are armed when you go to the doctor. It has taken me 10 years to learn as much as I have and I am still thinking up new questions everyday :) Good luck to you!

  3. Lara
    Lara August 12, 2011 at 11:04 am #

    I think you really need to look into finding a new doctor. It’s really important to find one that you’re comfortable with.

    I was just recently diagnosed with UC. I had a very bad flare & ended up in the hospital for a week. I went home & literally one week later I had a severe GI bleed & had to be rushed back to the ER. My doctor did a colonoscopy & determined that I had Crohn’s Disease. I stayed in the hospital for a week. I did a follow-up appointment a week later & my doctor concluded that I really do have UC. Both diseases are so similar & it can be sometimes hard to determine which you have.

    According to my readings on the Crohn’s & Colitis Foundation website, Crohn’s effects multiple organs, while UC effects the colon.

    Ask about Apriso. I’m taking that & it works for me. I also am on Remicade & was able to get off the prednisone. So far I’m having good results.

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