How many Gastroenterologists does it take?

[kiki00]

Hey all,

How many different opinions has it taken for you to be diagnosed or undiagnosed for that matter with Crohn's? My first one was 99% sure, the second not so sure thought it was more IBS now the third on who i just saw today says lazy bowel?!

I'm so fed up with it all!! How can opinions vary so much from person to person? I feel like no one is listening to me. Even when i told this 3rd guy ive had a little bit of blood in my movements he still didnt take it much into account. I have had a colonoscopy done and plenty of tests. I was told by my first GI who has now retired that although everything looked clear on the inside my biopsies had some suspicious cells but it wasnt entirely abnormal , but this isnt even written down so it's like who will believe me then when i say thats what he said?

My doctor believes its more crohns and doesnt want me off my medication which I was put on by the first GI and now this guy says I dont need to be on it and has given me Metamucil to try for 1 month! I DONT NEED A DAMN FIBRE SUPPLEMENT!! ohhh its so frustrating I am just back to square one again!

When i went off the meds the first time I noticed that the diarrhea of once a month came back and I know that isnt anything compared to people but it was still the cycle that returned. He thinks the medicine isnt helping me but obviously it was if i havent had D in months now and it only came back when I went off it??

I dont know what to do anymore!!

 

[aliciars]

I don't know - but have questioned my own diagnosis. I have had 2 different GI's say that yes it is Crohns...but I'm missing one big symptom....PAIN???? Not that I'm complaining, but if it is CD, why am I not responding to Crohns meds???

I'm going to see a new doc in about a month - I am wondering what he will say.

 

[kiki00]

What sort of tests have you had to confirm it? I know there isnt any one 100% one.

 

[aliciars]

I've had 2 colonscopies this year (yeah me) with lots of biopsies, along with an endoscope and more biopsies (I have gastritis as a side effect of the CD). I've also had a CT scan, MRI, & ultrasound. Many many blood checks. Oh and a few stool samples.

I should trust the GI at the University of Chicago - as they are considered some of the best in the country, but I guess I still hold out that maybe just maybe it's something else. The term I hear repeatedly is my "markers" show it's CD. I don't know what that means, but that's what I keep hearing.

 

[kiki00]

Yeh it's so hard to know who to listen to. My first GI was a really well established gastroenterologist with around probably 30 or 40 years experience. He is the one every one used to go to and was known for being very thorough and had a lot of credibility. But now I don't know what to think or who to listen to?! My doctor thinks that If i go off the meds im going to get really sick and I remember my old GI was like something will happen one day to make u believe u have crohns but so long as ur taking ur medicine. But I;m not now! Guess I will go try the Metamucil :s

 

[Mountaingem]

It took about 5 for me, unfortunately.

 

[TheMrs]

I'm on my 3rd. Same story here, we think you have it, oh wait! You don't! Well maybe you do, nah, it's something else, oh hey, now this really looks like an ibd! It's enough to make me as nuts as some early docs seemed to think I was!

 

[xJillx]

Hi Kiki and welcome! I am so sorry you are stuck in limbo with your dignosis. A lot of people are in the same boat as you. It can be very frustrating. I sure hope you can get some real answers soon!

 

[Ally]

I.m really lucky, I was diagnosed on the operating table and have a really amazing GI that knows what he.s doing and is really good about prescribing meds that work with my crazy schedule and that the insurance will pay for.

 

[ameslouise]

Hi Kiki and welcome!

The frustrating thing with UC and Crohn's is that there isn't a sure-fire test to tell you if you have these diseases. There's just a checklist and even then, symptoms can really vary from person to person.

What meds are you on? Where are you located?

-Amy

 

[carrollco]

Oh my goodness the title of your thread made me spew my coffee on the keyboard laughing. I can't COUNT the number of docs I've seen over the years. First it was irritable bowel and that diagnosis lasted 20+ years.

Then two years ago when the pain was so bad I made an ER appt at my primary care doc and saw an older male who asked me what I did for a living. I said I write books and he said, "Well, that's it then. You have Celiac disease. Stop eating wheat. You're sensitive and sensitive people can't eat wheat. "
]
Mind you that's a quote.

So, I suffered on until the blood became so bad I was scared to death. Soon after, a colonoscopy came up Crohn's. (along with a ton more tests).

Thanks for the laugh. I needed it. I think Crohn's is far more common than people think.

 

[kiki00]

I have a little update I thought I would share...

I went back to my general doctor on the weekend and told her about my experience with the new gastro guy and she was none too pleased with him! i mentioned how i had told him that she and my old GI said that my biopsies were suss and she was like yes they definitely were. She was also angry at the fact he told me to stop the medication and that I did not need another colonoscopy.

She said with this GI that he tends to do the colonoscopy on the patient then pretty much has nothing to do with them. It's become all about the money with these kinds of specialists as he now has a built up a reputation around my area for being "really good" or whatever, and is raking in the cash! I still cant believe he prescribed me Metamucil though, what a joke!

My doctor also said that my old GI told her that with patients who are in the grey zone that he has seen, if they are left un-medicated they go on to develop fully blown sever crohns so thats why i need to be on the medication. She said I have all the symptoms of it and if the GI I used to see thought any different and that it was a case of IBS or a ''lazy bowel'' he would have said so and wouldn't have put me on the meds. Like I have mentioned once before he was a really well respected and established gastroenterologist and was the best in his field pretty much. So I spose I should listen more to the ones who know and not the ones who are after money!

Frustrationsss!


Carrollco: Glad I could bring a smile to your face this morning!

Ameslouise: I am in Australia and currently taking Salofalk granules.