Rant time: Doc doesn't think I have Crohn's

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vitaka
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Date Joined Jun 2006
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   Posted 9/24/2009 1:42 PM (GMT -7)   
I met with my doctor today to go over my scopes and SBFT. Everything looked fine and good. No evidence of Crohn's. No reason for my symptoms.

He then goes onto to say he's not sure I've ever had Crohn's. He's not the doctor who diagnosed me, but has reviewed my files. He says I definitely had ileitis in 2006, but because there were no granulomas, it could have been because of something other than Crohn's. But I am certainly not in a flare now, even though I had classic flare symptoms for about six weeks until I started taking prednisone.

My doc says I'm a "unique" case. In other words, he has *no* idea what is going on. Not sure if it is IBD, or just IBS, or something else entirely. He drew blood for a CRP, sed rate, and Prometheus test, but I'll have to wait two weeks for that. I'm also getting a referral for a rheumatologist, to deal with my joint issues, which are coming back. And I get to start tapering my pred and hope it doesn't make things worse.

Part of me wants to be happy, knowing that I may not be stuck with this disease. But the vast majority of me at the moment is having a hard time handling this -- the uncertainty, the questioning if I'm just crazy and over-reacting, and potentially having to come to terms with some other health issues, after I've spent the last four years coming to terms with Crohn's. This is just so frustrating! I know there's something going on, but not knowing what anymore is killing me.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Colonoscopy/endoscopy scheduled for 9/10; barium X-ray scheduled for 9/18
Currently taking: 4g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


jesflr337
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 9/24/2009 2:14 PM (GMT -7)   

I'm with you. I've been told it's Crohns, not Crohns, endometriosis, not endometriosis... I just have a horrendous pain in my butt that won't go away and NO one knows what is causing it for sure. 3 1/2 years, 13 doctors... I may be on 14... not sure anymore. But I know, and I feel for you. I'd rather they tell me it is actually something terrible, but here's how we will treat it. It's killing me too, just waiting between doc visits, getting my hopes up someone will figure me out, and then being disappointed every time. I feel like my life is on hold indefinitely.

Hang in there.


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 9/24/2009 2:21 PM (GMT -7)   
Left in the lurch - well, there are several here who have had to wait years to get their diagnosis. You can have microscopic Crohn's and that would not appear on the SBFT and unless they could do several biopsies of your ileum, they might not detect it. There are several possible causes of a Crohn's-like illness, including Addison's and diabetes and a general condition called SIBO (Small Intestinal Bacterial Overgrowth) which can be caused by a wide range of illnesses and drugs. Pancreatic insufficiency or gallstones causing intermittent blockage of the bile duct can be another possibility. Even things like Proton pump inhibitors (for GERDs) or excess fat in the diet can cause a mild form of SIBO. For a bit of background, see: http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/24/2009 9:22 PM (GMT -7)   
I have been told this too..i just don't believe the doctor..and i stick up for myself..and say..well...maybe medicine works right?

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 9/25/2009 3:23 AM (GMT -7)   
Your story sounds almost identical to mine. I went to a different GI who could find NO evidence of Crohn's. So even though I had been dx the previous year, via scope and biopsy, he speculated that I was misdx. He said he had no clue what was wrong with me THEN, but that I probably had IBS. I went the next 5 years not knowing what I had, but I was in remission, so I really didn't care. I flared back up last month and he did another scope and still saw nothing. He did prometheus tests which were fine. Then the biopsies came back and confirmed mild crohn's. So he finally believes it and is treating me for it.

It was incredibly frustrating to have one doc say I had a 'classic case' of crohn's and another doc say I was probably misdx. I'm glad it's all straightened out now and I hope it straightens out for you as well. It definitely gets frustrating though.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx


vitaka
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Date Joined Jun 2006
Total Posts : 887
   Posted 10/6/2009 2:11 PM (GMT -7)   
So a quick update on me:

I just heard back regarding the Prometheus test and the results are consistent with UC. But sed rate (8) and CRP (<1.0) are normal. Now there's a shock. In all my tests, I've never had inflammation/ulceration in my colon. Not sure what the next step will be. My IBD symptoms are under control at the moment, so I'm not too concerned.

My joints, however, are another story. The pain is reaching debilitating stages, which is making my life much more difficult at the moment. I finally got an appointment with a rheumatologist for next Monday and am hoping -- although not expecting -- to get some answers. This came on so quickly, and got so much worse while I've been on prednisone, that I'm not sure what to make of it.

Keep your fingers crossed for me that someone figures out what the heck is going on in my body!
29f, PhD student, originally diagnosed with Crohn's in 2/06.
9/09: diagnosis being questioned due to lack of evidence of disease in most recent colonoscopy, endoscopy, and SBFT
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 10/7/2009 2:32 PM (GMT -7)   
Were biopsies taken during the colonoscopy?

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/7/2009 2:49 PM (GMT -7)   
njmom: yes, biopsies were taken during the colonoscopy and upper endoscopy. They all came back clean.
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


Sunny5
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 10/7/2009 3:32 PM (GMT -7)   

I feel frustrated too... I had a colonoscopy that showed large ulcers on my intestines, and biposies that showed Crohn's as a potential cause, so that's what they diagnosed me with... I started taking medication for it (Mezavant) and four months later had a repeat colonoscopy... the ulcers were gone.  Then the specialist started to doubt his initial diagnosis as he said Crohn's wouldn't usually heal itself that quicky... so now they are trying an experiment whereby over the course of several months they reduce my medication until I am not taking any... and if I get unwell that would confim I have it, and if I'm ok that would suggest I don't... but what worries me about this is that if I do have Crohn's, by not taking the medication I could be causing myself damage and leaving myself open to a flare further down the line.  Has anybody got any advice about this?  It's kind of a catch 22 situation - I don't want to be taking medication for the rest of my life for something I haven't got, but then again I don't want to become ill because I didn't take medication when I should have.

Anyway, back to the point, it's frustrating not to have a confirmed diagnosis, especially when you don't feel 100% well and know that something isn't quite right.  And it's hard to know what to tell other people - do you tell them you have it, or you maybe have it, or something else?!  Hope you manage to sort your diagnosis out Vitak.

Ria

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/7/2009 4:39 PM (GMT -7)   
Vitak,
Did they do the 18 foot EGD or the normal 3 foot one?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/7/2009 5:23 PM (GMT -7)   
Ria, a lot of others on this board have gone through this in getting a diagnosis. I have found that being able to talk it out has been a huge help. As for cutting down on your meds, I agree it is quite risky. Maybe you should get a second opinion?

I, too, have no idea what to say anymore when I'm talking about my illness. Do I say I *think* I have IBD?

MMMNAVY, it was just the normal three footer. My GI said he peaked into the duodenum. I had the SBFT to check out the rest of the small intestine and that was clear too. I was surprised by that because I've had symptoms of partial obstructions twice before and thought I might be having a third due to the daily nausea I was experiencing around the time of the procedure.
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


Gary The Pilot
New Member


Date Joined Oct 2009
Total Posts : 14
   Posted 10/7/2009 6:39 PM (GMT -7)   
How frustrating it is not knowing what's going on so you know how to proceed! If it's been a gut problem for a while, have you tried the drastic change to a Vegan diet? I have had IBS for years and just had a new colonoscopy/ endoscopy with biopsies. (My symptoms got worse) My doc doesn't seem to have a clue? He thinks its maybe crohn's but maybe not. Just wondering if the diet might work. I just started. I am going by the book written by Dr. David Klein.. Colitis and Crohn's.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 10/7/2009 7:13 PM (GMT -7)   
I feel all of your fustration. I am currenty going through the same thing, right now  the doc may think I do have crohn's the Humira has put it in remision but I might have endometrioses like other poster's but I have a feeling this isn't the case either but I will have to wait and see what the obgyn has to say!
My first question was : Can I get off all of the meds. The doc said no probably because the crohn's will come back.
 
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/7/2009 7:22 PM (GMT -7)   
I can totally relate with this...it took more than 3 yrs to finally get the right dx........I wish you all the best and hope you find out real soon exactly what is going on with you....keep us posted.......lyn
   
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MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/8/2009 2:44 AM (GMT -7)   
ok that just completely annoy's me that your doc would make that kind of dx without doing the long EGD. When I finally had mine done it was were the worse part of my disease is.  Which did not show up on my sbft, but did show up on pill cam.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/8/2009 6:20 AM (GMT -7)   
Sorebuttman, eating a vegan diet would probably put many of us Crohnies in the hospital. There are only a few veggies I can eat. Roughage is VERY hard on our systems.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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