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My GI appointment...please comment if you have any thoughts

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Crohn's Disease
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Posted 2/6/2008 1:16 AM (GMT 0)
So I went to my GI appointment today and it was good to sit down with her and discuss things.  My blood work, Prometheus included, all came back normal.  My biopsies are normal.  She said my colon is ok so I do not have UC for sure.  As far as my scopes went, I had a couple ulcers in my colon.  She said that those kind of ulcers come from one or two places--either Crohn's or NSAIDS.  She has ordered the small capsule study and I should hear something on that soon. 

Honestly, I don't know what to think.  I don't know if I should figure the ulcers came from NSAIDS or not.  And what about the other symptoms I have?  Maybe it is all just in my head? 

If the small capsule comes back clean should I give up on the whole Crohn's thing for a while?  I really want an answer as to why my eyes are having the episcleritis and maybe Crohn's isn't it.  I don't know--I just feel so confused!

I did ask the doctor to have the office rebill or write a letter to my insurance regarding the prometheus blood test--hopefully that will work out. 

Posted 2/6/2008 5:02 AM (GMT 0)
I have been where you are, and it is so tough. I just go through phases of wanting answers and phases of only dealing with symptom relief. its not in your head; it just hasn't been figured out yet.
Posted 2/6/2008 1:44 PM (GMT 0)
If you have Crohns with involvement in the small bowel -- pretty common with your symptoms -- the capsule ought to show something there. Lots of patients with your history and colonoscopy findings wind up having their diagnosis finally confirmed with the capsule procedure. So it's definitely worth trying.
Posted 2/6/2008 2:16 PM (GMT 0)
I know you hate feeling like you are in a limbo, but are going to have to be real patient. It isn't in your head and Crohn's has not been officially ruled out. Yes, NSAIDS can and do cause ulcers, but you have other symptoms that may not be related to NSAIDS/ulcers.
Posted 2/6/2008 3:45 PM (GMT 0)

Thanks everyone! 

I DID find out my insurance will cover the small capsule procedure--thank goodness! 

I guess all I can do is try to be patient--boy that is hard!--and take it one day at a time.  I figure the small capsule will help answer other questions. 

Now would probably be a good time to find a good hobby...get this off my mind for a while!  :-)

Posted 2/6/2008 4:24 PM (GMT 0)
It is VERY hard to be patient. My Daughter was misdiagnosed for a good amount of time before someone finally got it right and we also thought it was all in our heads, but it wasn't!! It took my Daughter getting to some dire straits to get a proper diagnosis. Better and quicker diagnostic tools these days, but still it can take awhile to come to a conclusive answer.

Hobbies are a good thing! yeah
Posted 2/6/2008 5:00 PM (GMT 0)
My advice: 

-BE PUSHY.

-Look for another dr. if you're not getting answers from your current doctor.

-Don't let the lack of a diagnosis get you down.

-Don't let the lack of a diagnosis make you give up on trying to find the answers.

-Don't start to feel like 'it's all in your head' or it's 'really not that bad' just because doctors, or family, or friends, minimize your symptoms or don't want to hear about how you feel.

-Focus on what treatments and/or diets are making you feel better rather than what a doctor calls it.   After 34 years of having everything from a 'nervous stomach', to a 'spastic colon', to IBS, to UC, to Crohns, to IBS, back to UC, to nothing at all, to Crohns, to UC again - well, you get the picture - I don't care anymore what they call it as long as they can give me medicines that help me feel better.

-BE PUSHY (oh, I said that - but it took me years to start being pushy with my doctors - something about that whole authority-thing...).

Good luck!

 

Posted 2/6/2008 5:57 PM (GMT 0)

You have been through a lot Clcaj!  Wow!  That does make sense!  And my internist DID say she would put me on either Pentasa or Asacol if the GI doctor didn't.  34 years!  I cannot imagine!  And I thought my 8 months was bad! 

I am glad your daughter got diagnosed, Mary!  That must have been hard for her and you and everyone else involved!

I work for a pharmacy school and one of our teachers here worked for the GI clinic at Cedar Sinai.  Anyhow I asked him if you can have Crohn's and not have it show up for a while in blood and biopsies and he said yes.  I am really hoping I can talk to him more soon to get more information about this disease.  Whether I one day have it or not, it is good to be informed. 

I did have something interesting happen back in December.  Long story short, I took a new medication and ended up in the ER allergic to it.  Anyhow the doctor asked me if I was healthy otherwise and my mom gave me this look like "you better tell him what they think you might have" so I did and I told him that my GI doesn't seem to think I have it but my Internist does.  Anyhow, across the hall from me, was a husband and a wife and he was in there because his UC was really bad, and they overheard me talking and she brought me his GI's card.  I could always try that GI I guess, to get another opinion.

Posted 2/6/2008 10:13 PM (GMT 0)
I feel the most important thing is that you and your GI have a relationship where you can discuss your symptoms and feel he/she is trying to help you - the fact that your doctor ordered a camera pill sounds like she hasn't given up on a crohn's diagnosis either. I don't think she feels it's in your head -she just doesn't have obvious results. If you don't have a good rapport with her, then you definitely should go for a second opinion. I started with a new GI last year (not my choice - but my old GI didn't work with remicade and humira and he wanted me to have more options). At first I didn't like the new GI - found he didn't seem to listen to me, and seemed abrupt, but over time I've developed a good rapport - because I realized he had a different style of interaction and once I figured it out, I've found him quite helpful. He's not much of a people person, but he sure knows his stuff. Plus I find he's slowly becoming more "friendly" as our relationship develops.
I hope your diagnosis comes soon!

Bev
Posted 2/6/2008 10:29 PM (GMT 0)
Clcaj gave a lot of good advice but I would caution against getting a new doctor if your current one is still listening to you and looking for answers. A new doctor will order the same tests and probably get the same results I would get a new doctor the minute my current one stopped looking or stopped taking me seriously.
It took 9 months to get diagnosed with RA although my doctor told me she was almost certain that was what I had the first time I walked into her office. (I had no swollen joints at that time and all the tests came back normal but I had a bunch of autoimmune symptoms that did not look like lupus). I was willing to give her time to find a diagnosis because she was more sure than I was that I was sick, it was not in my head, and she was determined to find the answer. If your doctor gives you that kind of support stick with them if not find one who will.

Sj
Posted 2/7/2008 3:14 AM (GMT 0)

sjkly said...
Clcaj gave a lot of good advice but I would caution against getting a new doctor if your current one is still listening to you and looking for answers. A new doctor will order the same tests and probably get the same results I would get a new doctor the minute my current one stopped looking or stopped taking me seriously.

good point, sjkly, I have a GI who kept trying and ordering every test and trying literally every drug. people kept trying to tell me to switch, but I felt that he was giving me the best care he could. again, indigo, I am so sorry you are having to be in the horrible limbo. I may never know if I have crohns or not, but at least I feel some control over things now that I am modifying my diet. who knows what will happen next!
Posted 2/7/2008 5:14 AM (GMT 0)
I totally agree with Bev and SJ. I went to two different GI's in LA and it was the second one that started to take me seriously. But it wasn't until I moved home and went to my parents GI doctor that things really started happening. It does take a while to get a definite diagnosis. There are still some times that it is possible that I don't have Crohn's. But with my symptoms and other test results (lots of inflammation, B12 deficiency, etc.) my doctor figured that he was 99.9% certain that it was Crohn's. I never felt that he didn't believe me or want to help me find the answers. He even brought up the idea of me getting a second opinion, which I did, to make sure I was comfortable with his course of treatment. It turns out the second opinion doctor didn't seem as concerned about finding out what was going on. So it really does matter if you have one that will take the time and make sure you get the tests you need done. It seems like your GI doctor is still doing this if they want to do a capsule exam. I had one of those, which thankfully showed I didn't have a stricture or other much worse things. But even if that doesn't show what's going on.. the medicine should be able to hopefully get rid of some of your symptoms. Good luck to you!!!
Posted 2/7/2008 5:59 AM (GMT 0)
i so wish you luck with this. probably the hardest thing is the time it takes to actually dx crohns vs uc. my H's GI dxed UC as his wasnt in his small intestine at all. the biopsies did not indicate crohns (or whoever read them said this). a year later, with a endoscope for a swallowing problem, his stomach was full of ulcers. with those, and their biopsies, he decided crohns and did a prometheus and it came back positive. instant change of dx! no one thought of the stomach..nor did he have any symptoms to be so full of ulcers. (do yall get pics of your tests? we did)

i am glad your dr is still trying and looking. i think thats very important. dont be discouraged if nothing is in the small bowel. it doesnt have to be, and a second look at the biopsies wouldnt hurt either. (sometimes they outsource those to diff labs).

hang in there. :) jodyisme

Posted 2/7/2008 6:08 AM (GMT 0)
This is why I love my gi. My 1st one said oh you had surgery, crohns all gone. He was so wrong. I found another gi thru a nurse and he has been my dr for 5 yrs now. I love him dearly. He did not care if I had surgery or not, my symptoms were all signs of crohns activity. He never one time tried to say you have had surgery it can't be crohns. Instead he did tests and put me on medication right away. If you have a dr that listens and does try to help you, don't kick them to the curb, cd is very difficult to dx. Susie
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