J-pouch Life » Prometheus Blood Test http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 Crohn’s…Again? http://www.jpouch.net/2010/08/05/crohnsagain/ http://www.jpouch.net/2010/08/05/crohnsagain/#comments Thu, 05 Aug 2010 23:21:56 +0000 Lizz http://www.jpouch.net/?p=2505 Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs.  New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function.  Several tests later, and another Prometheus test result just confirmed Crohn’s.  I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it.  So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good!  So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated.  Treatment, however, brings a whole new scope of problems.  Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make.  I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics.  I take Xifaxan and am currently taking Augmentin for a sinus infection.  Gosh, it makes me feel SO much better.  Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly.  If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again.  Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left.  As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues.  Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan.  My mom keeps suggesting disability.  Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!”  I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do?  I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic.  I just feel defeated when I consider that option. Should I  just bite the bullet and apply for disability?  Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

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]]> http://www.jpouch.net/2010/08/05/crohnsagain/feed/ 7 Avoid Wrong Diagnosis http://www.jpouch.net/2008/04/15/avoid-wrong-diagnosis/ http://www.jpouch.net/2008/04/15/avoid-wrong-diagnosis/#comments Tue, 15 Apr 2008 13:43:34 +0000 Mark http://ucstory.wordpress.com/?p=327  
 

Webcast starting on July 28th, Avoid Wrong IBS/IBD Diagnosis offered by the Excellent Resource of Health Talks. 

It happened to me, as it happens to many others – My diagnosis of UC at one time was questioned.  My story is similiar to one of we’ve all heard before;  After a blood test, I had markers of Crohn’s (the infamous and much debated/questioned Prometheus Blood Test). This sparked the worry of “Indeterminate Crohn’s/Colitis diagnosis.”  Which at the time was overwhelming to hear because I was just then considering surgery for the jpouch, and adding this “indeterminate diagnosis” meant I was more likely only able to have the permanent ileostomy. Which of course, is a great option, but at the time, learning what you thought was your disease and isn’t after all, was really hard to absorb.  Turns out after 4 consults later with different GI’s & 1 surgeon regarding the validity of the Prometheus Blood Test in my situation, we decided I fit more the profile of UC and today I am living healthy and happy with my jpouch.

Now, what is so important for many of you out there – is to learn how to understand your diagnosis, especially if it is a new diagnosis or a changed diagnosis.  I haven’t heard this webcast since it isn’t out until July 28, 2008, but I do recommend for you to listen. I have been ONLY PLEASED with the excellent quality of the Healt Talk Webcasts and am shouting to others iwth chronic disease to pay attention to their webcasts.  They are just medical enough to be legitmate, but not so technical I feel like an outsider!

*Please note: We are not saying that the Prometheus Test is good or bad, but for my situation we decided that the findings were of the test were not relevant. The link provided is of other patient opinions, please seek professional advice from medical experts regarding your Prometheus Blood Test. However, if you do happen to get the “indeterminate blood marker” diagnosis, do NOT panic….learn all your facts, seek multiple opinions, know there are other tests do clarify your situation. And note, many of us have had this test done and received scary results that didn’t materialize to be true in the long run.

Photo via:  Mary gaston22

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