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Doctors Tell You You’re a Mystery – Seeking UC Gurus

Meet Jay:

Diagnosed 2009, via colonoscopy, really scary time thought I had cancer. Symptoms started with thousands of tiny sores on insides of my hands and fingers, found out these were ulcers.

My mouth was full of ulcers and I couldn’t stop going to the toilet, not the best when your a swim teacher in a full wetsuit.

Jay’s Symptoms:

I am currently acutely unwell and experiencing symptoms I’ve not previously had, prior to this I felt I was finally moving towards remission, going from up to 20 times a day to 5. I had been in the last flare for about tree month’s. I tend to fluctuate in and out of flares constantly.

Very Sick Colon Seeks UC Guru’s

I was diagnosed with uc in 2009 after a colonoscopy, not my most favorite experience but it still beats the dentist. (Apologies to all dentists reading).

My specialist told me it was most likely not a coincidence that I had just given up smoking and was now being diagnosed.

I started off on foam enemas, which my partner and I quickly renamed butt mousse, this didn’t last long as they made me nauseous and I reacted to something in them. I moved on to some tiny grains you drink they come in a packet that look like sugar sachets, apologies for not remembering the name, these also made me nauseous and didn’t work. Lastly I was given a script I never filled for prednisone, as I was lucky enough to find Adam’s site.

As I write to you now I have just been released from the hospital after four days, with raging temperatures, and horrific pain in my upper abdomen, other symptoms chest pain, feeling of being full and uncomfortable on the right side upper abdo. And this is where it gets graphic so if your eating you might wanna come back later, green runny watery fluid, then sometimes what looks like coffee grounds but is just alot of blood, for stools.

I Am really seeking some guidance and wisdom from you guys around the following things,

Due to the fact that although I was tested for inflammation markers only slightly up, blood cultures done twice nothing found, CT scan nothing, and a ultrasound nothing found, have any of you experienced something similar and the Drs tell you your a mystery?

Could this be C-Diff ?  Perhaps some of you might think it isn’t even related. I would be really keen to hear from you all about this. Thanks for taking the time to read.

Current Medications / Supplements:

Currently I don’t take anything to treat my UC, and I think that has been a bit stupid to be honest. Whilst in hospital I did one of those begging for mercy from any god, pixie, fairy, totem, saint, that I would start looking at my diet.

I tried acupuncture for a year with varying results. I also tend to find probiotics seem to make me worse. Glutamine didn’t seem to help either.

In saying that I have really tried to ignore the fact I have this disease until it slams me all over again, and I make a bunch of promises to treat my body better, so I probably get in a bit of a habit for a few weeks then think it isn’t working and stop.

written by Jay in Australia

submitted in the colitis venting area




australia, c-diff

5 Responses to Doctors Tell You You’re a Mystery – Seeking UC Gurus

  1. Adam
    Adam February 4, 2015 at 12:32 am #

    Jay,

    Get a c-diff test completed. No reason not, especially if you haven’t had one yet. Quite a few of us UC’ers have come down with c-diff over the years, myself included. We are more prone to it when in the middle of active symptoms according to quite a few published studies, and a stool test is all you need to do. (More difficult to collect when in a flare, but heck, I’ve done it back when symptoms were like yours, you can too:).

    Battling UC symptoms along with active c-diff is like fighting two fires at the same time, and its nearly impossible to put out the UC until the c-diff is taken care of first.

    I hope this gives you an idea,

    -Adam

    • Jay Jones February 15, 2015 at 12:21 am #

      Thanks for the response Adam, was neg for Cdiff

  2. Tom
    Tom February 4, 2015 at 2:49 am #

    Inflammation markers are not a golden rule unfortunately. They are not completely accurate and can show normal levels despite being in a flare.

    As far as treatment goes, I think you should fill that script for Pred.

    Personally i don’t think you can beat a flare up of an idiopathic auto immune disease, by diet changes alone. You have UC, you need to at least give yourself a fighting chance by treating it with medication at least in the first instance. Yes medication can be awful, but it is clinically proven to work in most cases. Diet changes do not have this evidence apart from word of mouth.

    You said you were in hospital, what meds did they give you in there?

  3. Melissa Lawler February 4, 2015 at 2:52 pm #

    I am in the hospital every few months. I was diagnosed as having c-diff but now they think I have Crohn’s. I also have reoccurring c-dif infections. Definitely have a stool sample done. The test only takes 15 minutes. I have been told I too am a mystery. My crp is up to 38 and my white count is constantly high. I am waiting on financial assistance for entyvio.

  4. Jay Jones February 15, 2015 at 12:23 am #

    Thanks to everyone who commented on my post. I was neg fr cdiff, told I just had a bowel infection.

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