crohn's misdiagnosis?

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kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 4/12/2010 12:40 AM (GMT -7)   
Okay, so I just got back from seeing a new GI and now I am being told that I may not have Crohn's, after 2 years of thinking that I do!
All along I have never been convinced because my tests would come back normal, but i had all the symptoms. The GI I used to see has retired so I had my second visit with the new one today. He's younger than the previous one, and seems a bit unsure of things, maybe it's just his personality, but it sort of feels like he bases his opinions on what i believe
I don't know what to think now! I'm 23, I have the genes susceptible for both Crohn's and Celiac disease, i'm always tired, have rib pains, stomach troubles, previous liver abnormalities on tests, my appetite waxes and wanes, I used to have D once a week but am on Salofalk now and things have calmed down. Could it just be coincidence that my stomach symptoms have somewhat subsided with the medication? I suffer from fructose malabsorption but I have that under control. I just feel like now i am back to square one again!!!

And apparently all my biopsies are completely normal! I already knew that they were but , but then my previous GI said that they weren't completely normal and were a bit suspicious. I was also told this by my regular doctor when I asked couldn't it just be IBS? And she told me that IBS is something they diagnose people with when EVERYTHING else can be ruled out, my previous GI also said that.

So what to think now? Do i trust the GI I saw for 2 years who knows me better and has a lot more experience or the new guy who hasn't been around as long and has just met me?? Why would he put me on medication if i didn't need it and why would i be told the biopsies were not entirely normal if they were?! The new GI said that different doctors do have differing opinions but still!?

Frustratiiing!!!

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 4/12/2010 12:17 PM (GMT -7)   

I don't know what to tell you except to agree it's frustrating. I am the opposite of you. I have only one symptom (fissures) and was told by my GI it was crohn's although my biopsies, CT scan, etc were normal. I was also told  "you can get a 2nd opinion but I wouldn't trust anyone else in town", "your Prometheus test would show positive if you have the gene, but that doesn't mean you have crohn's",   just a couple things to cast doubt. So now I've been on Remicade for three years and I don't really completely believe I have crohn's! Plus the 'cade has never completely healed me so I believe there's a chance that it's wrong diagnosis/wrong cure.

I run marathons, for goodness sakes! How could I be that sick???

 

sorry, guess I'm off topic but you just made me want to open up about being frustrated.


Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.


Newbie37
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/12/2010 12:17 PM (GMT -7)   
I feel your frustration. Hang in there.

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/12/2010 3:59 PM (GMT -7)   
Deja Vu for me, just posted a thread a week ago about how my new GI thinks my old GI screwed up his diagnosis (well he knows he did because stuff was just plain missing). It sucks thinking for years one thing and being told another, doesnt it!?
Current Meds: 250mg/day Imuran
Current Vitamins: Multi-Vit, Calcium, Vit-D, Fish-Oils, Flaxseed Oil
Current Status: Mild Symptoms but under control
 
25 year old gym-rat/engineer
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/12/2010 4:54 PM (GMT -7)   
I think all of us old timers have been right where you are, at one point or another. I've never had much consensus on my illness, except I have IBD of some kind.

Matthew

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 4/12/2010 5:59 PM (GMT -7)   
Hey again,
thanks so much for all your responses. It helps to know that others are or have been through the same issue! It seems like this disease is almost one based on opinion rather than tests!! i know that something is going on in there, i just don't know what! Maybe it is IBS? I'm going off my medicine for 1 month to see how it all goes and if symptoms start up again. I sort of feel like i'm telling my new GI what he should believe is wrong with me. It's like he'll agree with whatever I say? He didn't even remember at first that this was my second time seeing him! He re-introduced himself! Something tells me to maybe listen to my previous GI who has a lot more years of experience over this new guy.
 
My doctor said not to be so quick to rule out crohns entirely because my previous GI is someone very respected in that field and he knows his stuff. Aaahh I just don't know!! I feel like an idiot having people think that I have crohn's when maybe all along I haven't had it? I know that tests can come back all clear but it doesn't mean that it's not there. It's just like a waiting game isn't it?
 
I remember when I saw my old GI he mentioned my 'supposed' crohns was in the small bowel and I still wasn't convinced that I have it and he's like well you can think that, but one day something will happen to make you believe and then he said you're still taking your medicine though right? so why would he put me on the stuff and tell me the biopisies were suss if it were not true?! confused It's not that I want to have crohn's it's just that I thought maybe I finally had an answer!!
 

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 4/23/2010 3:18 AM (GMT -7)   
hey all again,

thought i'd give a little update for anyone who might be interested. turns out my doctor told me up to 30 patients have the same opinion on my new GI as i have! i asked about the biopsies again and she said that they were normal but there were suspicious and inconclusive ce lls there and when that happens they lean towards crohns? so they were not "abnormal enough to be written out as abnormal but they were not infact "normal" soo she thinks i do have it but i'm trialling being off my meds for another few weeks! i'm not saying the new GI doesn't know what he's talking about but he is very new and seems like he is still learning. it's just hard to get an opinion out of him without pushing for one!

it's all still so confusing. i don't know who to listen to or who to believe! =(

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 4/23/2010 3:19 AM (GMT -7)   
ce lls (cells*)

erin1935
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 5/8/2010 11:00 AM (GMT -7)   
Have you ever heard of Behcet's? Very rare but could be your answer especially if other parts of your body are affected. Look it up and see if it may fit you!

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 5/8/2010 3:34 PM (GMT -7)   
This sucks but I know how you feel.
I have had an upper GI track, colonoscopy, barrium, promethus 7 since Jan and I am going for a pill cam in a week. I was "diagnised" a few weeks back but have had symptons for years. Now my doc is saying I might have CD in the illium and UC in the small bowel.
Seems to me like she is still fishin
I am like you, tell me what the heck is going on, tell me what to do and lets move on.
BTW, in the mean time, I am 100% SCD, probiotics, home made yogurt, lactose femented vegs.... I can only do what I can do, but I am doing all I can ...

Very very best of luck moving forward, As my bud in Cali says "I feel you man"
David
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly), Probiotics, Probiotic Yougurt, SCD


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 5/8/2010 5:09 PM (GMT -7)   
Let's see: First dxed with Ulcerative Proctitis, which was upgraded to full UC based on illness & worsening flare initially. My second GI took ALL my health history, no matter how small, & says CD ( Which people in my old Support group also said an entire year before this!). Old doc was seen in 2000, he still says UC. Others said IBD but not differentiated. One jerk in 2004 tried to say not CD but internal hemerhoids! ( he was mad at me for not getting the prep for the 'scope 100% right.) I dropped that jerk.
Its always a roller coaster! Keep your records handy when going to a new doc, seems opinions trump tests when it comes to IBD. <sigh>

Matthew

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/8/2010 8:32 PM (GMT -7)   

Matthew, I think you and I had the same GI when we first got sick!  I had the ulcerative proctitis diagnosis first.  Well, duh, if you only use a sigmoidscope you can't see the rest of the inflammation!  New doc, better scopes.

Kiki, I think it is a pretty common experience to NOT have a "name" for your inflammatory bowel condition.  But I believe calling something "IBS" is just a cop-out.  It only means that the DR acknowledges you're miserable, but can't find any "disease" to point to.  So then you have a syndrome.  An irritable one, too.

I think it is important that there were biopsies done, that they were not conclusive but also showed some problems.  Also, that you feel better on the meds.
 
So I just got some news that I might have ankylosing spondilitis, which is an arthritis that comes with IBD.  I've been doing a lot of reading and guess what?  Some people get this in their ribs and it causes pain.  It is hard to diagnose at the beginning because you need to see bone degeneration on x-ray.
 
I hope your situation gets less frustrating soon!

kiki87
Regular Member


Date Joined Oct 2008
Total Posts : 79
   Posted 5/12/2010 10:30 PM (GMT -7)   
Hey all again! Thanks so much for all your replies. This place is always so helpful. It's nice to be able to come and talk to people in the same sort of position.

I've been trialling being off my medication (Salofalk 1.5g) and my stomach seems to have an 'on edge' sort of feeling most days. You know the sort of pains you get as like a warning sign before you get D and need to run to the bathroom? That's how my stomach feels. But I haven't any D at the moment. More like it's the other way.

My appetite is a little up and down. I'm hungry but I'm finding there are only certain things that i want to eat. Also the lower rib cage pain has been coming back a bit. I might go back on the medicine again. But then if the symptoms clear up I feel like it might just be a placebo effect? I just don't know! I also feel like I can't complain cos there are people out there so much worse than I am. I feel like my problems are just so minor in comparison!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/13/2010 9:32 AM (GMT -7)   
Why not just push for the pill camera endsocopy as your best chance to get some ANSWERS?
 
We've all got some 20 feet of small intestine, most of which can't be viewed by any other method. Just because Crohn's USUALLY strikes the terminal ileum/ileocecal valve area first doesn't mean that's the only place it starts first - and don't rule out that ONLY the very end and very beginning of the ileum can be viewed by a scope. There's a vast "dark continent" between the two - and that vast "dark continent" coils over and around itself considerably. How else would 20 feet of "tubing" fit in our abdomen?


My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 5/13/2010 10:35:55 AM (GMT-6)

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