Terrible news for me...and needing others' experiences.

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jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/30/2008 6:23 PM (GMT -6)   
So, my normal GI is back in town and doesn't sound like he wants me to try Tysabri. The more I think about it, the more I agree with him. However...

...I got terrible news from one of the tests they ran on me while I was in the hospital. They performed a "Prometheus test" [I had never heard of it], and it indicated that I had Crohn's disease, not UC!!!!!!! [Backing away from edge of bridge slowly]. In talking to my GI, the test is about 90% accurate. Has anyone else had this test performed? What did your results say?

Anyways, I'm hoping that I'm part of the 10% of incorrect Prometheus results. Considering all of my colonoscopies, all of my pathology reports/biopsies, and all of my symptoms have been consistent with UC and they've never seen anything indicative of Crohn's, I'm still holding out hope. My GI is having me come in for a small bowel x-ray tomorrow to see if they can nail down a diagnosis.

Overall, it seems like my GI (not the surgeon who saw me in the hospital and is pushing the Tysabri) is thinking one more attempt at Remicade (July 11th) at a higher dosage and then, if that doesn't work, surgery. But if they still think I have Crohn's, who knows. Needless to say, I'll now be frequenting the Crohn's forum, too.

Bad week overall. I took an indefinite medical leave from work and am hoping we get this stuff figured out in time for me to graduate college this year.

I'm still eating the fruit salad on Independence Day, though!

/rant and Prednisone pissed-off-ness
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/30/2008 6:30 PM (GMT -6)   
James, I'm sorry to hear the news, I hope they can help you with the medicines they try. Hang in there. At least they are being thorough and the more they know, the better they can treat it. It sounds like from your post that Chrones is much worse than UC? I knew they were similar. Good luck with it all and with trying to graduate this year. Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1,         Canasax X 2 Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 6:38 PM (GMT -6)   
I know this sounds like such a trite response and I certainly don't mean for it to be one...but try to take a huge, deep breath. Then start writing down ALL your questions and concerns. If you think you need a second opinion, by all means GET ONE!

Sometimes surgeons get really arrogant and they have zero bedside manner.

It sounds like you have been really blind sided. When I get blindsided, my initial instinct is to react somehow. But I am trying to get better at sitting back, digesting all the information, documenting all my questions and concerns, then follow through on getting them answered.

It seems like this crap happens at the most inopportune times.

I'm really sorry about all this! I know it is probably extremely overwhelming! But again, take a deep breath and try to get your ducks in a row. That will also help you gain a little more control over the situation and will help you feel a little stronger and more able to deal with all of this.
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Asacol 2 pills 3 x/day, Canasa supps
Supplements: vitamins, probiotics
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/30/2008 6:56 PM (GMT -6)   
The main reason I'm so scared of Crohn's is that the 5-ASAs did NOTHING for me, the 6MPs (Imuran) haven't done anything, and now the Remicade is apparently failing. With colitis, that leaves pretty much just surgery. With Crohn's, I'm terrified that I'll have to go on Tysabri or stay on steroids continuously.

We'll see. I'll enjoy the fruits and veggies while I'm still feeling good.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/30/2008 6:58 PM (GMT -6)   
James,
 
As far as we've experienced the Promethus Test is controversial. I've attached a link to jpouch.org and it will show all the 2 pages worth of discussions of people hearing the same thing you just did (including myself). 
 
 
Again, not doubting your doctor and not saying the tests are bad, but from my experience and 4 opinions later - I was told I had the "markers in my blood"  2 of GIs said that I may not want to have a jpouch and go for a perm ileo if it was indeterminate uc/cd.  But 2 others said they didn't hold much merit in the test.  But b/c my test had come up with the markers they did a scope (can't recall name now) up to my ileum to see if my small bowel was showing any CD signs.  They said I had classic UC and discredited the test for me and kept my diagnosis on UC.  Call it denial or that I agreed with the logic of the test not being fully accurate (in my case that is) and I went ahead and had the Jpouch surgery. 
 
Unfortunately, this test is all too common especially in cases that are a bit more severe, you may want to read the post above and I'm all for multiple opinions. 
 
also, try not to write a story about what this means - stay in your present moment and know that no matter what the diagnosis there will be a blend of interventions that will get you healthy.
 
 
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/30/2008 6:58 PM (GMT -6)   
The possibility that you may have Crohn's instead of UC should be addressed 1st & foremost-- because colectomy is not a cure for Crohn's, which can flare up in other parts of the digestive tract. So-- try to think of it as potentially helpful news to your overall gastrointestinal treatment. If you can consult a gastroenterologist who subspecializes in IBD treatment, that would likely help to sort out your test results & arrive at a definitive diagnosis. The right gastro can do a lot to improve your situation so it's best for you to find out the correct diagnosis once & for all. I know it's hard when you just want to graduate, but try to stay positive about your health outcomes. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 7:03 PM (GMT -6)   
Are you sure that the fruits and veggies aren't agravating things? I had to cut WAY back on that stuff. I can't eat raw veggies anymore. I can eat most skinless vegs if I mash them with a fork.

Check out the bb for crohns. I am the only UCer at work and I work with about 4 folks that have crohns. They seem to be doing ok. And my boss's daughter has crohns and is in college. She travels (she spent last summer in Europe).

I'm wondering how much stress plays into all of this for you. Have you asked for any type of anti-anxiety medication as well?

Have you been in flare the entire time since you were diagnosed?

Knowledge is power. I think the more questions you ask, and the more answers you have, the better you will feel. You can make informed decisions and you are in control instead of the doctors.

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/30/2008 7:04 PM (GMT -6)   

Sorry to hear that, James. 

I know it's easier said than done, but don't get too far ahead of yourself.  Right now you don't know what it will mean.  It could mean an improvement in your condition.  Meanwhile, here's a link to an article that outlines the diagnostic process in uc and crohns and includes information on the blood test:

Edit:  That link doesn't seem to work.  I've since found a textbook chapter on this test and its problems.  There are definitely problems with the test.  The diagnosis is more as Sue points out below and takes into account multiple factors.


Post Edited (seconder) : 6/30/2008 7:19:02 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2008 7:13 PM (GMT -6)   

I'd be curious where those statistics of 90% accuracy with Prometheus came from.  I can count a number of people who's Prometheus tests came back indicating Crohn's but upon pathology of the colon they had UC.  My CR surgeon, one of the tops in the nation, doesn't even take their test results in consideration when talking with prospective surgery patients.

In order to determine whether one has Crohn's or UC you do all the testing; biopsies of the colon, blood work, CT scan of the upper intestine, and most importantly patient symptoms.  Determing the exact disease is like putting a jigsaw puzzle together.  I wouldn't get too disappointed yet.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/30/2008 7:23 PM (GMT -6)   
Thanks for all of the responses!

Mark&Megan: THANK YOU for that link. Those comments really helped me relax some about these results.

NMcP: I tinkered with my diet all of last year. Nothing really helped/hurt except for popcorn (terrible). I *do* believe my flare-ups are stress-related, though. I've had flares 2 out of the 3 times I've been in final exams since diagnosis and also flared the week following a grad-school entrance exam.

Seconder: Not getting ahead of myself is the hardest part of this, I'm finding. I'm a worrier anyways, and this disease is just another reason to get stressed out.

Suebear: My CR surgeon (not my normal GI and not the surgeon I would be using if I do need surgery) is the one who said "90%". I just read a big thread at the j-pouch.org site (thanks to Mark) and I read the quote from Fazio about his views of Prometheus testing.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/30/2008 7:27 PM (GMT -6)   
I hadn't yet been diagnosed with uc at that time -- it seems so long ago -- but the GRE (and later LSAT) certainly stressed me out.  Very understandable.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/30/2008 8:57 PM (GMT -6)   
I have crohn's colitis (CD affecting the colon) I've had it affect my TI, on and off in my rectom (proctitis) and constantly on my anus with perianal crohn's skin tags, it's also remained constant in my colon since I first got sick 17 yrs ago...it's been anywhere from severe (for the most part) to moderate (currently) but I still have my colon...I'm either allergic or non-responsive to traditional oral RX used for crohn's colitis (which is basically the same meds used to treat UC, anything that targets the colon). So even if you're DX has been changed to CD, don't lose all hope, there are genes that predict the behaviour and pattern of CD and you may never get it in your small intestines, that said, there's still Humira to try as well...I take all natural products and have completely altered my diet and I exercise regularly which has all helped, no full remission but I still have my colon after 17 yrs of it being in a constant flare so try not to be too upset (I know, easier said than done) but just know that as long as you do all that you can, you may still end up in remission...just stay away from junk-foods, fast-foods, animal fat and caffeine as well as refined sugar whether you're flaring or not as these are all known to exacerbate symptoms for IBD in general.

Stay hopeful, stressing can also aggrivate symptoms.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)

Post Edited (pb4) : 6/30/2008 10:23:20 PM (GMT-6)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 6/30/2008 9:26 PM (GMT -6)   

Hi James.

I am pretty much in the same position as you except I don't have pancolitis....  Running out of med options and not sure if I have Crohn's or UC.  When I first started wondering if I had Crohn's, I got very scared and nervous, mostly about getting surgery and also about possibly having Crohn's, period.  I have never had that Prometheus test, I can't imagine what it would say but if my GI whom I have had for 8 years still isn't sure which I have, I wouldn't put too much trust on a blood test.  Have you had an upper GI, SBFT or an endoscopy ever?  I had an Upper GI, SBFT recently and when that came back with no Crohn's, it helped ease my mind a bit.  (That barium practically killed me coming out, though!!)  After those results I sat down with my GI and asked him what he really thought, he said that it is possible I have Crohn's in the rectum only, and in that case, it will only be known for certain if it's UC ir Crohns if/when my colon comes out.  I am running out of options for meds and I am just hanging in there for now, hoping my ulcer doesn't preforate.  I had a few meds work for a while but never long enough for some reason.  I would consider Tysabri if this lovely Humira/6MP combo does not do the trick.  I hope that you start feeling better and healing and that you can talk to your doctor about your concerns in more detail or get a second opinion.

Adrienne


Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 6/30/2008 9:52 PM (GMT -6)   

Hi James. Sorry you feel as though you have been hit in the gut by test results (pun intended). So much of this darn disease deals with unknown. Will I get out of this flare into remission? When? What meds work? Why didn't they work? When will the next flare come? Is this the best I can feel? Should I try something different? Etc.

My daughter, bratcat, has UC. My older son seems to have Crohns. Can you tell I am still in denial? yeah   He had/has an abcess down below (I guess it is called perianal--can men get that too?). That's what sent him to the GI but he has had issues off and on for years. He had a colonoscopy. Some inflammation in the colon. Had a capsule endoscopy. A little inflammation in the small intestine. His "symptoms" are very different than his sister's.

It is scary thinking you have one disease and finding out it is another (especially when UC can be "cured" with surgery). But if you check out the Crohns or Ostomies forums here, there are many Crohnies who are doing great. When my daughter was first diagnosed with UC, she found out an old teacher of hers has Crohns (since he was 12). He has been a great role model in that he is a middle school teacher with a wife and baby and living a healthy life. While bratcat was in her flares, knowing that he had been there (and worse in his case) and made it through made it bearable.

Rant and rave away for awhile. I love this forum!! Then calm down, gather information, look into more tests if necessary, and find what will work best for you. If you don't like what the doctor says, get another opinion. Feel better soon.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/30/2008 10:26 PM (GMT -6)   
Bennie said...

   He had/has an abcess down below (I guess it is called perianal--can men get that too?).

Yes, perianal is just the term used for anus.

Perianal: Located around the anus, the opening of the rectum to the outside of the body. Peri- is a prefix borrowed from the Greek. It means "around or about." So pericardial is around the heart. Perinatal is around birth. And periumbilical is around the umbilicus (the belly button). Peri- is a useful prefix in anatomy and so is much employed in medicine. Pericardial fluid is fluid around the heart. Periaortic lymph nodes are lymph nodes around the aorta. A perianal abscess is an abscess (a local accumulation of pus) that forms next to the anus causing tender swelling in that area and pain on defecation.

 
:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/1/2008 11:01 AM (GMT -6)   
Reading through my medical records, I found my first Prometheus test showed no "first step markers" and stated that only a small percentage, like 10% of people with no markers actually have IBD, and then the second test was positive for markers. I don't recall at the moment what it said exactly, I'll have to look at it tonight. But I would think it's not that reliable, especially after ALL the tests you've had that showed UC and not Crohn's!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/1/2008 11:48 AM (GMT -6)   
James, I'm so sorry! But I really hope the small bowel tests show that it is UC!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 

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