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infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/20/2009 2:51 PM (GMT -7)   
Hi all,
I am really confused and even more frustrated this afternoon. I received a call back from the GI Dr's office saying that the blood test they ordered a week and a half ago returned positive for IBS. I know someone here argued there is no such test, but I have seen it referenced on other sites...I don't know. Any way, I am floored that the nurse says this after the way the appointment went with the Dr. last Thursday, PRIOR to the results. The Dr. was emphatic that my symptoms and signs were not GI related, and stated he was sending a note back to pain management Dr. stating his opinion it was muskuloskeletal in nature.
 
I changed my diet and eating habits very early on in this process, and it had no effect. I don't understand this and right now feel like I have been thrown a token diagnosis, without basis.
 
I actually had a decent weekend, until I had to make the drive to return the kids to their mom. Driving always is uncomfortable.  I am really upset by this call.  I have to catch up on a lot of work this evening, and now I am just floored...
 
Thanks in advance, and I will take a look at the IBS page too (with reservation...).

JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/20/2009 3:40 PM (GMT -7)   
Hi!  I have been wondering how you were doing.  Are you sure your doctor was not testing you for IBD (inflamatory bowel disease)?  Seriously, I am a medical technologist (the people who actually work in the laboratory and run the tests that your doctor orders), and there is NO blood test that can either confirm or rule out Irratable Bowel Syndrome (IBS).  There IS a test for IBD, actually there are a few that can distinguish Crohn's disease from Ulcerative Colitis, which are both forms of IBD. 
 
My rheumatologist tested me for IBD, and it came back positive for Crohn's disease.  His theory was that I was suffering from an autoimmune arthritis that is common with people who have IBD.  It is called enteropathic arthritis.  This might be why they are testing you for a bowel disease.  The problem with me is I don't have any symptoms of Crohn's! So, who knows.....
 
Do you know what the test was called?  Was it ASCA or pANCA?  Those are the 2 blood markers for Crohn's and UC.  There are no blood markers for IBS, only IBD.
 
Jenny B
Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/20/2009 3:58 PM (GMT -7)   
Hi infinite,

When I saw a rheumatologist, he also mentioned the existence of blood work for IBD & it's relation to arthritis, all of which Jenny mentioned. I'm also assuming that this is the test that your doctor is referring to. You might want to give him a call & speak with him for clarification -- ask exactly what the test tests for & what the results mean for you.

Skeye

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 7/20/2009 4:45 PM (GMT -7)   
http://www.ibsbloodtest.com/
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/20/2009 5:58 PM (GMT -7)   
Hi all, and thank you for your replies.
 
Jim, that was one of the sites I was referring to. I also found some posts on about.com. 
 
Skeye, thank you for the advice. I am expecting a call back from them since I asked the nurse if there were medications that might help, and she had to discuss it with the Dr.  I will be sure to addrees those thoughts with them when I get back in touch with them. 
 
Jenny, thank you for your concern!  It is nice to be remembered :)  All I have to work with right now is that from the time the nurse mentioned the blood test, she referred to it as an IBS test.  And, when the Dr. and I were discussing things in the appointment, he made very specific points about what IBS symptoms were and how while I do have abdomen pain, it is on the left side with IBS, not the right like mine. 
 
I am not saying that anyone is wrong, I am just saying I am getting a lot of mixed messages here and am tired of the frustration and confusion.  The best medicine right now is the discussion here!
 
 
 
 

JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/20/2009 6:17 PM (GMT -7)   
Hmmmm...this test is very new and not even approved by the FDA.  It has a sensitivity/specificity of roughly 50%, which is not even close to being a conclusive diagnostic tool for IBS. It is disturbing to me that this lab is offering this test as a "blood test for IBS".  It should be calling it a "blood test to help diagnose IBS".  It is not a test where if you have a postitve result, you must have IBS (like an HIV test is).  This is probably why it is not approved by the FDA nor has it passed any peer reviews or studies other than those conducted by the company itself.  Don't get me wrong, I have IBS and would LOVE to see a blood test developed for it.  Sadly, I think this is just an opportunity for Prometheus Laboratory to make some $$$$ at this point.
 
I have never heard of IBS being on the left side and not the right.  I have had IBS for 26 years, and my pain is on both sides...sometimes left, sometimes right, sometimes all over.  What were your GI symptoms again?  Sorry, I can't remember.....fibro-fog again..... rolleyes
 
 
 
 
Jenny B


Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 

Post Edited (JennyBHurts) : 7/20/2009 8:26:03 PM (GMT-6)


infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/20/2009 9:37 PM (GMT -7)   
Hi again Jenny. It is nice to hear from a home-stater :) And one that is the same age...I completely understand the feeling old part (not quite the 80, but I told someone recently 36 is like the new 56).

When all this started nearly 4 months ago, it was what was thought to be pains realated to side affects of the nicotine patches I started on. I had intense chest pains 3 days after starting them. After keeping them off for a few weeks, the pain, while never completely waining, returned in full force one day accompanied by a bad bloody stool and intense pain in my left abdomen. My Dr. got me right in, and a PA determined that i was positive for blood in both ends and immediately admitted me to the hospital. i was really stunned, but in a lot of pain, so I agreed. To get the pain under control, they tried morphine that evening and night, but i only got about an hour of sleep and drank a bunch of water, as the morphine apparently gave me the cotton mouth.

The next morning, hearing that the morphine wasn't cutting it, they upped me to dilauted every 2 hours, which I am not sure helped with the pain but rather knocked me out for naps. On a side note, I got a bill from my Dr for a visit that I swear to this day didnt happen in the hospital...

So, after xrays, cat scans and a consult with a GI Dr. the following day, they scheduled an upper and lower GI for the next day. I just gotta say, I admire, but do not desire, the job of that poor young girl that had the job of collecting the results of a gallon of GoLightly. So I remember coming out of the haze of anisthesia and the GI Dr, stating all he did was remove 1 pollup and "thought" there might be some Diverticulosis in there.

I was released after a consult and given orders for a plethora of meds and a high fiber diet, which I complied to, but didnt notice any change except for my belly growing cause I was so sedentary and a lapse in my ability to function cause I was so drugged up. I havent stuck completely with that recommendation, but I never had what I would consider a bad diet prior to that, and I weaned myself off of pretty much everything prescibed.

Anyway, the pains I was experiencing started moving to my right lower abdomen, up under my right ribcage, and continuing up my right side to under my armpit, which is where it has been, at varying degerees, for about the past 2 1/2 months. Even in the times of the sharpest pain, I can put pressure on those spots and there is no change in the pain. After a scope up the front (I dont know the proper term...), the urologist, after stating everything was good, told me to see a back specialist since all the GI work was negative or negligable to this point.

Whrn the PM put me in PT, they even were surprised I was there since the pain seemed to radiate from points in the ribs on the back and the spine.

So, I hope this gives you a better picture of what I have had done to this point. Thank you again for your follow ups to my posts and I appreciate your replies.

JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/21/2009 11:27 AM (GMT -7)   
Good greif, you have been thru the ringer!  What is strange to me is that the pain you are describing is constant, not cramp-like as it is with IBS.  Have any of your doctors suspected gallbladder problems?  The pain with gallbladder disease is described as this:
 
chest pain in the right side (caused by stones in the bile duct or inflammation or swelling of the gallbladder itself). Nausea or queasiness, vomiting and gas are frequent. There may or may not be belching or burping. The gall bladder, which sits just below the rib cage to the right of the stomach, is very tender to touch. It can be so painful that it takes your breath away.

You may not be able to walk without bending over. Sometimes the pain radiates through to the back
shoulder blade on the right side or in the middle between the shoulder blades. This is pain from the gallbladder being referred to the back of the shoulder. This back shoulder blade chest pain is one of the most common yet unknown symptoms of a gallbladder disorder. This can come and go or be constant. It may be sharp, excruciating or dull. It may also occur especially at night.

I don't know, maybe it's worth asking for an ultrasound or CT of your gallbladder? I know you mentioned that they did CT scans and X-rays, but if they weren't looking at the gallbladder, they might not have picked it up.  I had an almost complete bowel obstruction that was not caught on a CT scan because they were only looking at the upper part of my bowel, not the very end!! Boy, that was fun.....
 
So what is the next step for you? Sorry you are going thru this.....I bet you never imagined that you would be dealing with this crap at the ripe old age of 36, huh? Me neither....
 
Jenny B
 
 
Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/21/2009 11:51 AM (GMT -7)   
Oops, I forgot to mention *those* tests. I have had a full ultrasound on my gallbladder, liver, and pancreas, and I also had a HIDA scan (that is what they call it here...) on the gallbladder which showed like 76% through rate (so it is fine).

And, as I am typing this the nurse just called back. The Dr. has prescibed a medication (I will follow up after work and let you know what it is after I go to the pharmacy...). I also inquired about the test again. The link Jim provided is the lab which this Dr. uses (http://www.ibsbloodtest.com), and the nurse is adamant about its outcome. Guess I can't fight their findings. I have IBS but only symptom is abdominal cramping. Not that I want any of the other signs, but it just still feels like a strange diagnosis.

I really appreciate you following up and your kind words. I hope you are having a great, pain-free day :)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/21/2009 12:29 PM (GMT -7)   
 
 
Dear Infinite,
 
     Good afternoon! *huggs* It is good to see you again. Do you think you can make it to chat night this week? That would be cool to pick on you in real time! ..wait.  smilewinkgrin
 
     How crazy is that, they find that along the way? Just what you DIDNT need to add into your cocktail. I hope this doctor is following the right trail, so to speak. But also, that they do not "focus" soly on one aspect and keep their open minds to other causes. 
 
I just gotta say, I admire, but do not desire, the job of that poor young girl that had the job of collecting the results of a gallon of GoLightly
 
    She says "Congratulations!  Removal of the alien probe was a complete sucess!"  smhair
 
     SAeriously thou, I really am sorry about your results. If there is anything we can do to help let us know. I dont know of any "high fiber" bread recipes but I will keep my eyes peeled. I just dont know much about the #2 system. Except from Foldgers coffee? They make this type of coffee called "Black Silk".. And let me tell you! There was nothing "silky" about holding on to the towel racks for dear life! Stay away from the silk my friend...  devil
 
    *warm huggs*
        dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/21/2009 12:42 PM (GMT -7)   
 
 
   Dear JennyBHurts,
 
     Isnt it neat? Watching the lightning speed with which technologies are advancing? It is an exciting era in history to be a part of. *whistful sigh* But, even better that new testing techniques and advances are being implemented everyday. And hoefully! Improved.  I myself have kept a close eye on new ScoliScore test for children. Now that on is pretty amazing too. I just love reading about the evolution of health care.
 
   Must be really neat to be involed in your line of work.
Seriously, I am a medical technologist (the people who actually work in the laboratory and run the tests that your doctor orders)
 
   You have alot going on iwth your health too. Has it adversly effected your ability to work? You must be tired at the end of your day.
 

smilewinkgrin

dani

    
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/21/2009 3:31 PM (GMT -7)   
 
 
  Hehe Infinite you will love this one!
 
  Nurse: Doctor,  the man you've just treated collapsed on the front step what should I do?

  Doctor: Turn him around so it looks like he was just arriving!
 
   *huggs!*
       dani
 
 
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/21/2009 5:27 PM (GMT -7)   
 Go with your gut (no pun intended).......can you get a second opinion?  Like I said before, I would not consider this a test that would conclusively diagnose IBS.  I think your doctor (and nurse) are grasping at straws.
 
Infinite said...
 but it just still feels like a strange diagnosis.
 
 
You know your body best! Sometimes we have to fight to get the answers we deserve.  Even if you do have IBS, is that what is causing your pain? It seems like a stretch to me.
 
Jenny B
 
 
Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/21/2009 7:21 PM (GMT -7)   
Good evening Jenny and Dani! Thank you both again for replying to my post. I posted on the IBS board this morning and have *zero* replies, so I do appreciate yours and the advice (and jokes) in them!

First of all, the Dr. ordered Robinul(1 MG, 2X daily), and his very (over?) confident nurse is certain that it will help out immediately. Well, that was a nice gesture, but it will have to wait till tomorrow for it's first test because my pharmacy didn't have any! I did have a nice conversation with the pharmacist about the med though, and my brother is passing along the info to his wife (a pharmacist) to get any inside info he can. One thing I am very thankful for is that my family has been very supportive (though dad can be a bit pushy...) throughout this whole current ordeal, as well as ever since the back problems started nearly 20 years ago.

Jenny, right now the only thing my gut says is that I do not have a lot of faith in the medical field right now. This GI Dr was very considerate and spent a good amount of time with me. Maybe I was to overbearing in my belief that it isn't a GI problem and it wore off on him especially prior to the results of the test (though, as you have stated, that is a crap-shoot kinda test). I have an appointment with the PM Dr. next Thursday as well as the appointment that the PM clinic set up with a GI Dr. here in this city in a little over a month that I haven't cancelled yet. I am teetering on whether or not to cancel it yet...I may call them and see what their opinion is on the Prometheus blood test that came back positive.

I really do appreciate the feedback, and I would love to make it into the chat this week - when is it?

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/21/2009 10:28 PM (GMT -7)   

 

*huggs*

Thursday night, Chutz usually posts a reminder smilewinkgrin

*huggs*

dani


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/21/2009 10:39 PM (GMT -7)   

Hi Infinite,

Wow, I just cannot believe all the crap you have gone through and to this day still no real dx except IBS. No wonder you feel as you do towards the medical community. There are many others on this forum that can relate to you, test after test and nothing showing up. All a person can do is to keep pushing forward till they find a dr that can help them. Very frsutrating to say the least.

My initial thought was maybe gall  bladder but you have already had this checked out.  Robinul is good for cramping. I have crohns disease and UC and in the beginnning this was something given to me for the cramping.

Have you considered the possibility of going to perhaps a big teaching hospital? I know many people end up at one in search for answers. In this setting there is not room for big egost hat many of us have encountered at some point and time.

I feel really bad that I can not come with much in ways of answers. I have had the Promethius tests and I am assuming my gi believes in them since he is the one that ordered mine.  It was sent to a lab out in California.

One thing we can offer you here on this forum is alot of moral support. We are a pretty close knot group and believe in helping each other any way we can. Please keep posting and let us know how you are doing.

 


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 7/21/2009 11:15 PM (GMT -7)   
Infinite, I am late posting to this. I can understand your frustration about not completely being confident with the diagnosis you were given. If it were me, I am sure I would feel the same way. I don't have any answers. But I do want you to know that I do care and wish you the best with this. Maybe a 2nd opinion isn't such a bad idea...
Anice
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