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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Anyone else freaked out about this?


07-27-2011, 03:18 PM   #1
Mayflower537
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Anyone else freaked out about this?

Okay, so it sucks to be undiagnosed (esp when you're doing poorly), but what about these people who have been diagnosed, and then all of a sudden they get another GI that doubts the diagnosis? I almost think that is worse than being undiagnosed. Especially when there was hard-core evidence of disease that was visible via colonoscopy!

Apparently, it's hard to get as well as keep an IBD diagnosis.

Good grief.
07-27-2011, 03:19 PM   #2
Mayflower537
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Blurg, I meant to post this in the undxed club...David, help?
07-27-2011, 03:32 PM   #3
chrisnsteph1022
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That was me. I was dx in 2003. Very classic case-ulcers/inflammation in the TI, biopsies confirmed. Then I switched GIs. I was in remission at that point. GI did a scope and there was NO evidence of Crohn's, past or present. No scar tissue, nothing. Did a IBD serology test and it was negative. I was having some very minor symptoms at the time and he said it was IBS. He theorized that it was some sort of infection. I told my family that I didn't really have Crohn's after all and we were all happy. For years. Until it flared back up-this time in my TI and entire colon, massive amounts of bleeding, diarrhea 15 times/day, nausea, pain. There's no question now!
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07-27-2011, 04:15 PM   #4
Jennifer
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If I got a new GI who questioned the diagnosis then I'd find another GI even if they are hours away. Then again the one who gave me my original diagnosis said that I could keep seeing him if I wanted even though he works with children but children do grow up and he was the best GI I ever had.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-27-2011, 04:53 PM   #5
Cat-a-Tonic
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May, absolutely yes that thought scares me! It's taking so long just to get an initial diagnosis, and if it were ever taken away once I got it, I don't know what I'd do! I've seen several threads in the forum lately where a diagnosis has been taken away or questioned by a new GI, and that just seems so wrong to me. If the original doctor's report has proof (ulcers, biopsies confirming, etc) then I don't think it's right to question that just because the person may be in remission or have a different severity of illness when the new GI sees them. Remission doesn't mean cured and it doesn't make the original diagnosis invalid! It seems like some docs just don't get that, and that is scary that they have the power to un-do what should be a "permanent" diagnosis.
07-27-2011, 05:36 PM   #6
AndiGirl
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Maybe that's why I'm sticking to that cantankerous Dr. Sweeney. I don't want to go through the diagnosis thing all over again.
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07-31-2011, 12:26 PM   #7
lookame
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*raises hand* I've been there. My first colonoscopy showed severe inflammation in my descending colon and clear ulcers, my asceding colon and transverse colon weren't as bad. The GI told me it's probably UC but didn;t want to diagnose or treat me until biopsies came back and then NEVER got back to me, refused my calls...and the calls from another doctor who wanted answers as well. Then 2 ER visits produced NOTHING. CT scans showed the inflammation was progressing yet they didn't feel like treating me. Finally when I got so anemic I needed a blood transfusion is when someone decided to help. Admitted to the hospital and anouther scope found severe ulcerations and inflammation in both my ascending and transverse colons as well as my decending colon...in other words severe crohns disease throughout my entire colon. All because every doctor that looked at me didn;t want to treat me

Even now my doctor goes back and forth between crohns and UC...though I guess it's better at least it's SOME form of IBD and not "IBS"
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07-31-2011, 01:23 PM   #8
lola99
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I was recently diagnosed with crohns disease just this past february. I went 5-6 years undiagnosed. First it was Ibs/spastic colon. But after i took a bunch of nsaids after my second son was born i flared up so bad i got a partial blockage and had to go to the er. I guess I can say im happy to be diagnosed so i can get treament before the inflammation did damage but its not fun to be told you have incurable disease. I try to be happy just with the fact that i feel better now with getting treatment. I dont think every gi knows enough to help everyone. Being proactive about your health,finding a good doctor and doing your research can go a long way.
07-31-2011, 02:02 PM   #9
allieinwonder
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I am afraid of this happening with me. As it stands now, if the pill cam gives me my diagnosis, it will mean I have crohns that is hard to test routinely to see how its doing...and with my history I could easily see a new GI try and change my dx. If I do get diagnosed with crohns I am not going to let a GI take it away... I will simply change GI's. This has taken way to long to have to do over again!
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07-31-2011, 11:13 PM   #10
Whatsup101
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It just happened to me...I was diagnosed with crohns back in January (biopsies confirmed it) but when I changed doctors in march the new one said he wasn't so sure. He performed another colonoscopy on me but this one came Back clean. At the time of this test I had been taking prednisone for three months and was feeling a lot better. He then took me off all of my meds and wanted to schedule me for more tests. Well of course I began to get very sick again bu when I called the doctor for help and to renewcmy prescriptions he wouldn't. He told me all he could do was tell me to pick imodium. I couldn't believe it. I never called back or spoke to that doctor again. I went for a third opinion finally and this doctor said that I do have crohns disease.

Lesson learned: if a doctor tries to take your diagnoses away... Laugh at them and Leave and never look back. If you try to stay with them and believe them you will only go through more suffering and when you have crohns you already have enough of that.
08-01-2011, 10:59 AM   #11
Mayflower537
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It just happened to me...I was diagnosed with crohns back in January (biopsies confirmed it) but when I changed doctors in march the new one said he wasn't so sure. He performed another colonoscopy on me but this one came Back clean. At the time of this test I had been taking prednisone for three months and was feeling a lot better. He then took me off all of my meds and wanted to schedule me for more tests. Well of course I began to get very sick again bu when I called the doctor for help and to renewcmy prescriptions he wouldn't. He told me all he could do was tell me to pick imodium. I couldn't believe it. I never called back or spoke to that doctor again. I went for a third opinion finally and this doctor said that I do have crohns disease.

Lesson learned: if a doctor tries to take your diagnoses away... Laugh at them and Leave and never look back. If you try to stay with them and believe them you will only go through more suffering and when you have crohns you already have enough of that.
Yeah, that is absolute crap. Aren't the meds supposed to get help get rid of the inflammation? Yeah, when a doctor questions an iron-clad diagnosis, that is a HUGE red flag that should not be ignored. Time to find a new GI. Glad your third one worked out.
08-01-2011, 01:38 PM   #12
tiloah
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If I got a new GI and he or she told me I didn't have Crohn's, I would probably just laugh in his/her face and leave. I don't need to waste my time with someone who won't take me seriously, especially if I'm paying their salary.
08-01-2011, 01:54 PM   #13
margie
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I was diagnosed with Crohn's in 2006 and years later still same problems and going back to that same doctor is now doubting his own diagnosis....I am finding a different doctor now. I can't go to a doc who diagnosed me treated me and then years later doubts his own. Not making me feel very comfortable, besides I thought he was the best and could deal with his arrogant attitude, but now I will not deal with him anymore. I have to start fresh with a new doctor.
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08-01-2011, 02:03 PM   #14
Mountaingem
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I had the same thing happen to me; here's my story:I was diagnosed at 19 with Crohn's and/or possibly UC. I had huge tunneling mouth sores, diarrhea, blood in stool, mucous, infection, high fever, blacking out, you name it. It was found by signmoidoscopy in the rectal/anal area.

I took Azulfadine and Cortifoam and was in remission when I got married. I had a flare about 4 years into being married, I had to stop the Azulfadine because I became allergic. I went to the doctors on my husband's insurance, got the colonoscopies, endoscopies, barium enemas multiple times-everything looked fine except for "minor inflammation".

The doctors (3 of them) thought I was depressed, anorexic, a hypochondriac-I was so frustrated I burst into tears when everything came back normal. In the meantime I lost 20 pounds, hair was falling out, incredibly high white cell count, bleeding, couldn't keep food down or in-all of which they discounted.

My husband actually went looking for a new job to get better health insurance. I was so nervous going to see the new GI, who had been in practice 30+ years. He looked in my mouth, and examined my abdomen, he felt the ileum area under my left ribcage and said "Oh I can feel the Crohn's, right here." I had no idea it could move to another part of the colon. I started Pentasa the day I left his office.

He followed up with a colonoscopy and when it came back with minor inflammation he said Crohn's often hides in the deeper tissue of the bowel and is not always visible with a colonscopy. Also, it's trickier to diagnose when it's in the ileum area. Six years later I needed an abdominal hysterectomy, and the surgeon inspected my bowel with my GI since "they had me open" they said-and lo and behold, the Crohn's damage was all over the OUTSIDE of the bowel! It blew my mind.

Looking back I should have taken my medical records from the first diagnosis and insist the new doctor accept I already HAD a diagnosis. Any decent GI knows that Crohn's is extremely difficult to diagnose unless you are at a critical stage, and even then it's tough. It totally pi$$es me off when doctors treat you like it's YOUR job to match the symptoms the book says you should have. Any doctor does that throws up a red flag in my book.
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08-01-2011, 02:40 PM   #15
allieinwonder
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Wow Jeanette, what a story. I have the same symptoms as you, including the tunneling mouth ulcers. I am having the hardest time getting a doctor to believe me due to a normal colonoscopy. My pain is right under my left ribcage, and my husband actually felt my stomach last night, and we both can feel a hard inflammed mass there, as well as it being hot to the touch compared to the rest of my body. My last GI appointment my GI said "you must not want to accept you have IBS"...what a JOKE! I hope I am able to find a doctor as great as you found, who listened to you and your body, not a couple of normal test results!!!
08-01-2011, 02:48 PM   #16
tiloah
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My last GI appointment my GI said "you must not want to accept you have IBS"...what a JOKE!
Uh right? You don't want to accept you have IBS because you have something more serious going on! Outrageous.
08-01-2011, 07:23 PM   #17
Mountaingem
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Allieinwonder-That is exactly what I had-a hard mass under left rib cage, that would stay warm. Yeah, it's definitely time you upgrade your GI, see if you can find one that specializes in IBD. Many GI doctors never have even one patient with Crohn's; mine is from USC Medical Center. Just keep up the fight til someone listens to you!
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