Possible misdiagnosis? -vent-

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Quesadilla
Regular Member


Date Joined Nov 2007
Total Posts : 26
   Posted 5/23/2008 1:25 PM (GMT -7)   
I'm 21 and have been diagnosed with crohn's since 2004.  When I first met my GI, he was very nice, attentive, and I saw him every month.  If I ever had a problem, he returned my calls or would easily rush me in to an appointment to see him.  Then time went by.  The pills that he put me on didn't help much.  Whenever I called him to schedule an appt, it took longer and longer for them to return my calls or get me in (Last time I called in, it took 2 weeks for them to return my call and I wouldn't be able to get in for over a month).  Then, I went into "remission" (or that's what he called it), he took me off all my pills, and anytime I had a problem, he told me to take OTCs.  At one point I got so sick I missed a week of my college classes, and when I called him, he still did nothing!  OTCs was all he ever said (and, trust me, I was taking OTCs; it wasn't really helping).  He was convinced it was crohn's disease, I was in remission (that's what all the tests said) and so he didn't have anything else for me!  I told my parents (who's insurance I am under) that I had to find someone else.  So I did.
 
Now I've met my new GI.  He's a 3 hour drive away, but I hope it'll be worth it (there aren't many GI's where I live or that take my insurance).  He's nice, attentive, returns calls personally, etc.  And after dealing with delinquents at my previous GI's office for 2 whole months to get them to send all of my portfolio and slides to my new GI (my mom and I had to make 5 trips up there to tell them each time they didn't send everything), my new GI is now telling me that he thinks I'm misdiagnosed.  The severity of my symptoms don't match (and he believes from looking at my old slides never matched) the amount of inflammation that was present in my GI tract.  There is too little inflammation.  So, either I'm diagnosed correctly and there is something else wrong, or I've been completely misdiagnosed and whatever is wrong is also affecting my GI tract.
 
I just feel so aggravated and depressed about this.  I'm happy that I made the decision to change and that my new GI is acknowledging that I'm uncomfortable and that it wasn't being addressed.  I'm just so mad that I stayed with a GI that wasn't helping me no matter how many times I said that even if I don't have inflammation, I have extreme disabling pain.  Like, one of my mom's friends just found out that she has been misdiagnosed with crohn's disease for the past 20 years.  She instead has some inflammatory bladder problem and the inflammation had spread elsewhere.  She's been living in pain for 20 years and getting treated for something she didn't even have.  Like, why do some doctors think that once they found one answer there are no others?  The human body is not a straightfoward problem.
 
*sigh*  Sorry for the rant.  I just felt like maybe people here could understand my frustration.  I think it's hard for my family and friends to understand.  They try hard to listen and be there for me, but sometimes they just end up making comments that make me feel bad.  I have an appointment with my GI on the 4th; I just hope we are able to start doing things that set us on the right track.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/23/2008 2:01 PM (GMT -7)   
Hi Quesadilla and welcome to Healing Well. I am so sorry you are having such a rough time right now. I am glad to hear that you are seeing a new GI. One thing I will say is that many who don't have Crohns have no clue what its like to live with this disease. They will give you lots of suggestions, but someone who lives with Crohns knows that they can suggest all they want, we know our bodies the best.

What kind of OTC's have you been taking? For example, for us Crohnies, we are NOT to take Ibruprofen, Aleve or Aspirin. Regular Ibruprofen brought me out of remission and tore my guts up. It can cause intestinal bleeding.

Is your new GI going to do a whole new round of tests? The reason I ask is becuz you say you may have been misdiagnosed. I think a round of tests should be done to rule out Crohns for sure.

Hope you get the answers you are looking for.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Quesadilla
Regular Member


Date Joined Nov 2007
Total Posts : 26
   Posted 5/23/2008 2:12 PM (GMT -7)   
I've already done a couple blood tests for him (unfortunately I've forgotten the names right now...one was a ASGII?). He says that they can be indicators of crohn's disease but that it was barely elevated. Right now my symptoms are intense cramping and sharp pains about twice a week and my stool ranges from one extreme to the other within the week. He doesn't think that the slight elevation would explain my symptoms. I believe he is wanting to do some more tests to see about other conditions and to look more into it possibly being crohn's. I believe he may be under the impression I have crohn's and some underlying condition that hasn't been addressed.

The OTCs that my old GI told me to take was just tylenol, an anti-d and a stool softener. They would help if I was having slight pain and slight diarrhea or constipation, but I honestly haven't had a mild case of either in a long time. I can't use the restroom for 5-7 days from constipation and then as soon as I can my stool is pure liquid by the time I've finished having a bowel movement. And I have severe amounts of pain in my lower left abdomen that doesn't get helped with tylenol.

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/23/2008 2:15 PM (GMT -7)   
:(... I hope the new GI gets everything figured out for you soon... Take a deep breath... And try to be hopeful...


And just think... soon as they find out what's really wrong... or if you really do have Crohn's disease... the sooner, they can put you on some treatment that will hopefully work better for you...


(And I understand how frustrating it is to have to miss college classes... I'm in college myself... and I had to medically withdraw from my online class because I was hospitalized...)
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/23/2008 8:27 PM (GMT -7)   
Wow, interesting share. Did your new GI do new tests? What medications are you taking. What are your symptoms and what tests have you done? Give us more info please.

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/24/2008 4:28 AM (GMT -7)   
I'm having the same problem right now so glad to know I'm not alone. For the past almost 10 years I've been told I have Crohn's. Now
my Crohn's doctor is questioning it and doubtful. I'm making him run more test for different things and I'm just waiting for those
results. In one breath he says he isn't sure, but in another he says he is almost 100% sure I do. Its just crazy!! I don't get all
this doctor stuff but I should go to school to be a doctor and get paid what they get paid. I can tell patients the same thing.
Its frustrating and know that I share your frustration too!!! Hang in there!!

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/24/2008 7:47 AM (GMT -7)   
I have run posts before about how many of us have been diagnosed and then undiagnosed--it is not as uncommon as you would think. and it can make you crazy, so try to be glad for your new doc and see what happens. keep us posted! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Quesadilla
Regular Member


Date Joined Nov 2007
Total Posts : 26
   Posted 5/24/2008 5:55 PM (GMT -7)   
Hi C'me. I haven't had anything but bloodwork ran since about a year ago. There are different types of bloodwork (so, so, so many that I forget) that all test for certain markers or inflammation amounts. Right now I'm on nothing but OTCs. My previous GI took me off all medications. My new GI has given me some samples to try (pentasa, one of the medications I was taking before along with entocort), to see if I notice anything helping. He doesn't want to prescribe me anything until we can run some more tests.

Other than the blood work, I've had 2 barium swallows, a barium enema, and two colonscopies over the course of my diagnosis. My new GI got slides from all those and from that and the bloodwork each month he was saying that there must be something else because the inflammation was so mild compared to my symptoms. I was so sick during the time of being diagnosed that I lost 30 lbs over a month since I couldn't eat anything but rice, would live in the bathroom throwing up/having diarrhea every 5 minutes for a couple hours at a time.

Right now my symptoms are constipation for about 5 days. It comes with an uncomfortable bloated feeling. Then when I am able to use the restroom, I get diarrhea and extreme pain in my lower left abdomen and nausea for a couple days. Then it goes back to constipation. There's never a middle ground.

I go see my GI on the 4th, and he and I will talk then about what the plan is. He'll probably tell me other conditions he thinks it may be and recommend that I take tests to make sure its not Crohn's or make sure its something else. I just have a while to wait and see...

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/24/2008 6:02 PM (GMT -7)   
Waiting is the worst, I think... :(
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/24/2008 6:04 PM (GMT -7)   
what a pain, I am sorry you are going through this. can you tolerate metamucil or other fiber suppliments? it can really help with the C. also, I take glycolax daily and you would have to pry it outta my cold dead hands! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/25/2008 7:24 AM (GMT -7)   
For the constipation I use stool softners every night.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Quesadilla
Regular Member


Date Joined Nov 2007
Total Posts : 26
   Posted 6/2/2008 7:01 PM (GMT -7)   
Uhhh... I go to see the doctor in just two days... Two days. And I'm in the worst pain I've been in in a long time. I haven't been constipated this week at all, but I've had explosive and urgent BMs. Right now, it feels like my anus is on fire (as disgusting as that sounds, but I thought you guys would be understanding). I'm really nervous about the appt, but I know it needs to get done. Whatever this is, it's definitely getting worse.
Dx with crohn's since Oct '04.
Have had symptoms since 2000.
Medications: nothing but a daily vitamin
Recently changed GIs, new GI is thinking something else may be wrong.
I see him on June 4th.  Wish me luck.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/2/2008 7:07 PM (GMT -7)   
:(... Sounds like it.


Maybe some Preparation H will help with the 'on fire' part of things... :(... Have you tried maybe going on a liquid diet for a little while?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

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