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Old 08-02-2011, 08:38 PM   #1
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IBD blood test?

I was diagnosed with IBD unspecific when I was 12 years old....after having symptoms for as long as I could remember. I am now 23 (female). I've had countless colonoscopies. Well my most recent experience was after going through what I thought was a flare and being prescribed prednisone. I went to a new gi dr and was told there was now a blood test which would show if I would have Crohn's or Ulcerative Colitis since I was never told which one it was. (At the time I was told it showed symptoms of both? I had inflammation throughout my entire system from esophagus, stomach, and colon. I was seen at a Children's Hospital.)

Long story short...the test came back negative for Crohns or UC. At this point I'm just confused and wondering what that test was and if anyone has experienced a similar experience? My symptoms never completely go away but I've learned to live with them as I don't really know any thing differently. Whatever this test was has anyone had it come back negative but in fact they have Crohns or UC? I am just wondering what I've been dealing with my whole life.

 
Old 08-03-2011, 01:21 AM   #2
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Re: IBD blood test?

Was the test Prometheus? I don't believe it's accurate from what I read...it can lead but not confirm.

So, when was your last colonoscopy?
Did you have an upper scope done as well?

Are you on any medications?
q
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Old 08-03-2011, 02:18 AM   #3
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Re: IBD blood test?

Hi hun,

There is a test that can be performed that will show if you are in an active flare-up of either UC or CD done using a stool sample. It is called "Faecal Calprotectin".

I am in a similar situation as you. All blood tests were normal but this showed massive inflammation.

Have a look on wiki for more information. It may be worth requesting.

Take care

Pixie xxxx

 
Old 08-03-2011, 08:05 AM   #4
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Re: IBD blood test?

My last colonoscopy was done in 2008 after I began throwing up blood at work. (I conviently worked in surgery at a small hospital) So the general surgeon admitted me to the hospital and we did a Endo and colonoscopy. Which showed inflammation in the colon, a tear in the stomach, etc. I am not currently on any meds for IBD...Ive been focusing on my kidney stone issues. After doing research I've been told stones are common in IBD sufferers. I had an appendectomy at 11 which the pathology report suggested Crohns? my current symptoms are severe right flank pain, fever, vomiting, diarrhea (when dont I have it?), severe pain when taking a bm or following any activity (can't stand up straight the pain is a pinching stabbing pain) & occasional blood in diarrhea. My Urologist seemed to think the pain Im having in my flank isnt from my stones so the only other thing I could think of was IBD. (But he also missed the kidney infection I have so Im getting a second opinion) I just wonder if I should go back to a GI. This may seem silly but I really dont want another scope and I know that is what they will want to do. Thoughts?

 
Old 08-03-2011, 10:08 AM   #5
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Re: IBD blood test?

I wish I could remember exactly what my GI doc said about the blood test. It basically boiled down to that if it was positive it would just be a confirmation of what the biopsy of the colon lining showed, and if it was negative, it didn't mean I didn't have it. It was something about specific vs something else - sorry - it was kind of "science talk"-ish and I didn't retain it. Mine came back negative, but my GI says I definitely have UC based on the biopsy results and treats me for it - and it definitely works.
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Old 08-03-2011, 10:22 AM   #6
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Re: IBD blood test?

Thanks for your help. It was a blood test that he took and sent off to a lab in California. My last endo/colonoscopy were in 2008 after I began throwing up blood at work. (I happened to work in surgery at a small hospital) So the general surgeon admitted me to the hospital and I had the scopes the next day which showed lots of inflammation in the colon, a tear in the stomach and what the surgeon referred to as "orange peel" spots in the stomach and colon. (Basically rough patches?) I'm not currently on any medications for IBD...I'm instead battling kidney stone issues. (Which through research I have found are common in IBD sufferers) My only real link to either UC or Crohns was when I was 11 and had an appendectemy...the pathology report showed signs of Crohns in the appendix?

My current symptoms are fever, nausea, horrible right flank pain, diarrhea (never known anything different), occasional blood in diarrhea, and occasional intense pain on left side while having bm or followed by lots of activity (a sharp/pinching pain where I cannot stand up straight). My Urologist is not convinced my right flank pain is from my kidney stones as they are still in my kidney and "shouldn't be causing me pain". But he also missed the kidney infection I currently have...so I'm getting a second opinion. I'm just wondering if perhaps I should go to a GI as well. But really don't want to have another scope done and I know that is what s/he will want to do since it's been a few years. Thoughts?

 
Old 08-03-2011, 11:07 AM   #7
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Re: IBD blood test?

If it were me, I'd find a good GI doc (preferrably one with experience treating IBD patients) and have the scopes. Did anyone ever do biopsies of your intestinal or colon lining? You are obviously in a lot of distress and if having some more testing, including scopes, will help you get the treatment you need to get your quality of life back, then do it! Good luck to you!
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Old 08-03-2011, 11:38 AM   #8
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Re: IBD blood test?

Quote:
Originally Posted by knockneez View Post
If it were me, I'd find a good GI doc (preferrably one with experience treating IBD patients) and have the scopes. Did anyone ever do biopsies of your intestinal or colon lining? You are obviously in a lot of distress and if having some more testing, including scopes, will help you get the treatment you need to get your quality of life back, then do it! Good luck to you!
To answer your question, Ive had a biopsy during every scope. And was only ever told they showed inflammation rather than a definitive uc or crohns diagnosis. When I was younger my flares were much worse than now. Ive had tons of GI Series, follow troughs etc...which showed my intestines were so inflammed the food was backing up in my stomach which was causing me to throw up so much. I was hospitalized numerous times with a Ng tube because I was unable to keep anything down. I hated to eat which then lead me to develope anorexia as a child...and then grew into full blown anorexia nervosa as a teen due to such a restrictive ibd diet, losing weight and then liking the weight loss. I think my hesitation on going back to a GI dr is the possibility of 1) scopes (I vomit the laxative they make you drink the night before) & 2) I dnt want to be put on a restrictive diet again and ever have to face anorexia. I have lost weight recently (without trying) so that does concern me. My pain medicine and antibiotics I am currently on for my kidney issues obviously help my digestive upsets. Pain meds are anti-diarrhea agents after all...but I know this is a temporary fix for me. I also start a very competitive internship this fall along with a full load of classes, a 2 yr old, and a husband who is deployed So I want to be healthy for Fall Semester and my husbands R&R. I guess Im just thinking outloud now huh? I just dont want to have a scope if nothing is wrong.

 
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Old 08-04-2011, 09:24 AM   #9
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Re: IBD blood test?

I totally understand where you are coming from.

The faecal calprotectin test is currently being used to differentiate between IBS and IBD thus reducing the need for unnecessary colonoscopies.

I am yet to be diagnosed with the type of IBD I have. As you can see from my profile, I am from the UK and we have to wait for appointments ( I have also raised a complaint against the consultant I was seeing...... long story)

I have also lost a huge amount of weight due to this. When eating causes you that much pain and discomfort, you get to the point where you think "why bother". There is a Doc on the internet who has linked bowel/biliary disease to eating disorders. I can't remember his name but I will have a look for you. His site is really interesting.

In the mean time I eat what I want. If I get pain ( and I always do regardless of what it is I am eating) I would rather eat what I enjoy than restrict myself.

Another suggestion I have is Stout. I have major constipation due to codine based meds plus everything else. I have a pint of guinness every day and it is the only thing that "moves the mail" lol!

Anyway, good luck in what you decide to do.


All the best Pixie xxxx


EDIT P.S Google Dr W P Smedley.


xxxx

Last edited by pixiehickies; 08-04-2011 at 09:31 AM. Reason: addition

 
Old 08-04-2011, 10:17 AM   #10
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Re: IBD blood test?

You certainly have a lot on your plate and sounds like you've been through the wringer with all the testing! I don't have any answers, but maybe a doc would let you try something like Asacol to see if it helps? It seems pretty obvious that something is going on causing you to have these problems. I'm no doctor, but if they can't specifically diagnose one way or another, then it seems to me why not try a treatment and see if it works?

Best of luck to you - hope you feel better soon!
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Old 08-04-2011, 04:17 PM   #11
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Re: IBD blood test?

Thank you both for your help. I'm having a urteroscopy on Monday so once I am recovered from that I think I will go ahead and get in to see a GI specialist. I talked with my Urologist about it today and he thinks it is a good idea to see one again. I appreciate the kind words and once I do get in to see a GI I think I will take your advice and see if a scope is absolutely necessary. If so, I will have to suck it up and have one I guess but it won't hurt to ask if we could try treatment based on my previous medical records and current symptoms, without the aid of a scope. I just really dislike them! Not so much the scope part but the prep before.

 
Old 08-17-2011, 05:30 PM   #12
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Re: IBD blood test?

Well I officially have an apt for my tummy issues Last week after my Ureteroscopy, being hospitalized for three days and then undergoing a second Urteroscopy for my kidney stones and ureter obstructions...I think my kidney issues are finally resolved. I then began having sever stomach pains which were so intense I called my doctor to get in for a refferral for a GI. At this point my original hesitation on having another colonoscopy has deminished, as the pain is intolerable. So I go in tomorrow and hopefully start the process of finding a GI doctor and getting on maintence drugs. I just do not want to get on Predinsone. I hate all the side effects, like weight gain and acne. But I plan to discuss this with the doctor. I'm kinda nervous but ready to get this taken care of so I'll be feeling well for school.

 
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Old 08-17-2011, 09:24 PM   #13
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Re: IBD blood test?

You're more than welcome.

I really hope your appt goes well. I know how stressful it is to be in so much pain yet have no answers.

It may be an idea to write down all of your symptoms and questions before you go to see the GI doc. That way you won't leave thinking 'damn, I should've mentioned....' ( Which is what I usually do lol)

FYI ( or perhaps TMI) I feel your pain about the colonoscopy. I have always said it's an 'out-ie' not an 'in-ie'

I really hope your feeling better soon. Let me know how it goes.

Take care Pixie xxx

 
Old 08-31-2011, 01:56 AM   #14
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Re: IBD blood test?

i had a blood test for uc..came back negative...i then had colonoscopy and had biopsies taken that confirmed mild chronic colitis had been present. The doctor told me that blood tests are not 100% accurate. hope you sort it!

 
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