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Crohn's Disease
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Posted 7/11/2008 6:11 AM (GMT 0)
Well, I had the dreaded colonoscopy today. Oh Lord! but it was painful! I thought I screamed through the whole thing..but the GI said I was just moaning and groaning.... guess I was just screaming in my head.

Now here's the kicker! I've been living with CD for over 30 years.... my last colonoscopy showed CD in my TI and a few strictures. That colonoscopy was done back home. Today, this different GI says he sees no evidence of CD.... either the meds have been working really well and I am in remission.... or I've never had CD at all. I don't understand this. How can you have CD one minute and not the next????? I have been soooo sick all these years. He says I have the painful , not the spastic type of IBS and wants to see me in his office in a couple of weeks.

I ' m really confused. He still hasn't found the source of that bleed I had about 3 weeks ago...

Now I feel like a fool.... I feel like I'm getting "it's all in your head, or it's just stress " speach all over again. I remember being soooo relieved when I got my CD  dx because I finally felt like I wasn't crazy.

 Furthermore.... I asked him if I should then stop my CD meds and he says no... they seem to be working well....lets just keep up with them. I'm really confused.?

Have any of you had similar experiences.?

Posted 7/11/2008 8:20 AM (GMT 0)
(((((((( Marie-Claire ))))))))) Wow . . . this is when you really want to have ALL your old records in hand. I've actually had the same experience with Lupus. Diagnosed and then undiagnosed . . . so I say . . . OH! then I won't have to take my meds anymore. Doc holds out his hand waving at me and says "you'll be taking those the rest of your life!". At the Lupus Forum . . . we've come to believe that they work really hard (especially a new doc) to keep the dread diagnosis OUT of your record. It is actually a great service to you. They continue treating you for the disease, but keep your record free from the bad word. If you ever have a gap in medical insurance and need or need to change insurance, you don't have that dx hanging over your head. Taaaaaa Daaaaa!! I hope you are feeling as good as you look inside!! BTW . . . I had the same experience . . . moaning and groaning through the c'scope and apologizing. Doc said "No . . . I apologize to you! Some tender stuff in there" Blessings!
Posted 7/11/2008 8:41 AM (GMT 0)
this is what I'm afraid of...I'm afraid they'll get in there and take a look and not find anything because they waited so long and my symptoms cleared up. I know how you feel about having a diagnosis...when they first told me it could be crohns I felt so much better. not knowing what's wrong is a killer especially when you have people in your life, including doctors, that treat you like it's all in your head. unfortunately I'm more pessimistic than the lupus folks...I don't think it's a good thing for docs to keep things out of our medical record...I mean why would you still need the treatments for a disease you don't have? I don't get it. I understand the insurance part of it, but for example I'm on disability so treating me, but not giving me an official diagnosis, is bad for my reviews. I would have to explain how I have all these horrible symptoms and how they keep me from participating in life and then have them point out that according to my records I don't officially have anything. that would be so not good. I'm not on disability for this though, I'm on it for my bipolar and mental issues, but don't think I'm not going to be adding this on to my list. it keeps me from doing things lately just as much as my other disabling illnesses. anyway I don't have any answers for you. I'm sorry you're going through this...just keep good records on your symptoms and make sure you always keep the docs updated. maybe one day this doc will decide you have crohns and you have for years...maybe you could have your old colonoscopy records sent to the new doc...if he doesn't have them already?
Posted 7/11/2008 2:28 PM (GMT 0)
I had this very same problem as well. The first colonoscopy I had, the doc came out and told me I have CD. Every other doc (6 of them) I went to after that told me it wasn't, even after finding ulcers, etc. in my small intestines. I went from doctor to doctor for years and then I gave up on them. After a while I decided to ask my family doc about going to the Mayo. I must say I am pleased with the results from the Mayo Clinic. The doctor really listened to me, did tons of tests, and really worked with me. He told me it wasn't in my head and I really do have CD.

I know how frustrating it is to think one thing is wrong with you and then the doc tells you nothing is wrong when you know your body is not right. Just listen to your body. From experience, it is NOT all in your head!
Posted 7/11/2008 10:46 PM (GMT 0)
The EXACT same thing is happening to me.  My GI retired and I got assigned his replacement and had a Colonoscopy and he says, "I see no inflammation or any signs of Crohn''s.  OK, so #1 What IS wrong with me??  #2 Do I stop taking all my meds (especially Remicade)?  Replacement as I like to call his, says, "No they are working let's just keep everything the same.  I am so upset and confused I couldn't ever wrap my head around what he was saying.  Now 4 weeks later, I am ready to rip off his head, and he can't see me for app for another 4 weeks.  I'm just so frustrated.....

Posted 7/11/2008 11:07 PM (GMT 0)
irish63...are there any other GIs in the area you might be able to switch to? I know there aren't many in my area so I don't know how easy it would be for you to find another one...then there's insurance issues and everything else that comes into play when you need to switch docs. I'm sorry you're going through this and I hope you get some answers soon.
Posted 7/12/2008 12:28 AM (GMT 0)
The same exact thing was happening to me as well. 8 years ago I was told I had CD after being so sick for 3 months that I thought I was dying. I had a scope and the GI told me I had CD and put me in the hospital for 5 days because it was so bad. He treated me for 6 months on prednisone and I wasn't getting better so he referred me to who I'm with now. But all the scopes my current GI has done while I was flaring all came back no active disease. Then I have this current flare that started 2 months ago and he tells me that he isn't 100% sure I have CD. WHAT??????????? So I go for a second opinion and that basically got no where. Then I have another scope 4 weeks ago and my current GI FINALLY see's inflammation and tells me ok I have CD. Its very mild but it is there. I even had that expensive IBS blood test done and that came back neg. I do feel better now that my current GI finally saw it!! I was really feeling like it was in my head.
This disease is so confusing!!
Posted 7/12/2008 1:00 AM (GMT 0)
Marie-Claire, I'd dump this gastro in a hurry, like in a heartbeat, and find a heck of a whole lot better one! IBS? SNORT! Any local general practitioner can keep your med scripts up to date. He obviously isn't very skilled w/a scope if it was that painful. Dump him. And if you are STUCK w/this guy next time he wants to do a scope tell him it is a Agile Patency Capsule and Capsule Endoscopy or its a no-go.

Irish63, the way you've phrased your gastro's response it just sounds to me NOT that he doesn't believe you have CD, but rather that, good news, no active disease is showing up. Just keep doing/taking what you are doing/taking 'cause evidently it is working. SOME gastros are smart enough to know that just 'cause they can't find it, doesn't mean it isn't there or wasn't there.
Posted 7/12/2008 1:01 AM (GMT 0)
Ah, another reason why I didn't agree to another scope last month. Put me on prednisone, then want to scope me to see what's going on in there. I have no doubt it would have looked good after a month on steriods, then what undiagnose me? No thank you. I think that's the most frustrating thing about having this disease. These doctors hang on to what they see on those scopes wayyyyy too much. I don't think they are that reliable to hold all their weight on them.
Posted 7/12/2008 2:17 AM (GMT 0)
Thank you so much for your response all of you.... I have no doubt that I have CD.... I have been living with this disease 30 years and it aint no IBS , although I don't doubt that it could be both.
This is the same GI that told me I had CD in my esophagus 4 years ago.... then when he did the endoscopy in June,tells me , I see some scarring but everything looks good....didn't mention the CD and I was too groggy to think about it...tells me to continue taking my meds , they are doing a great job. Great job...then why am I still having chest pain every time I eat... and where the heck was this bleeding coming from 4 weeks ago. Besides I thought CD was mostly in the small intestistines.... he just scoped the colon and took a quick peak at the ilioceacal valve and said he didn't see any sign of the disease.
I 'm really worried that he will state on his report that I definately don't have CD... I too am on a disability pension and I'm really worried that his report will really make things complicated. There is no way I can work....My list of "boo-boos" is too long to list .
I am soooo upset about this. I am tempted to write to the office of my old GI back home, but for us there is the big issue of safety. If my ex got wind of where we are now we'd have to move again.
And no there is no other GI worth his u no what in this area. Should I ask for a small bowel follow through or that awful test I swear I'd never have again. 13 years ago they tried to put a tube through my nose.... I have polyps so was bleeding all over the place...so they get me to swallow the tube then inject some kind of barium stuff through to my small intestines.... That's when they spotted the CD....
I don't know what to do and Im so upset . Oh and he saw polyps but left them there... isn't he supposed to take those out. Saw some in my stomack also and left them there. ?????
Discouraged old Mary
Posted 7/12/2008 2:28 AM (GMT 0)
Marie-Claire I think you should definintely have a test that looks at the small intestines, like a camera pill. My first GI was convinced nothing was wrong with me because he couldn't find anything wrong with my colon. It turned out my CD is ONLY in my small intestine, no colon and no TI involvement. Maybe you have some active disease in the small intestines?
Posted 7/12/2008 3:12 AM (GMT 0)
*hugs* I didn't know you were on disability too. I know how you feel...it's very scary when you think something or someone can ruin your case. I wish I had some advice...just wanted to offer a virtual hug and some support.
Posted 7/12/2008 4:39 AM (GMT 0)
You are in "dangerous" hands, Marie-Claire if this educated idiot did a scope and left polps w/o removing them. He's just "scope happy" to pay off his college loans or buy his country club membership. Really, even if it means a drive an hour away or even two hours to a larger city w/a BETTER choice of gastros, for you own welfare you need to do so.
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