I'm Making A List

[Raleigh]

So I've been doing a lot of research on my specific symptoms and laboratory abnormalities. It's too long to post here, but through the use of clinical studies in medical journals, I have directly linked every laboratory abnormality that I have had to Crohn's Disease. I have done the same with certain symptoms which I find to be significant. So far, I have found clinical studies to prove that all of the following are associated with Crohn's and specifically relevant to my case:

Anemia
Vitamin D Deficiency
Low PTH
High Serum IgE
Low Zinc
Low Beta-Carotene
The Diagnostic Importance of Perianal Skin Tags
The Significance of Seasonal Changes in Symptomatic Exacerbation
The Crohn's Disease Prodromal Period
Rectal Inflammation

I realize that I may come off as a basket case for doing this, but I want to be prepared when I see my new GI in a couple weeks. I don't plan on shoving the research in his face, but I also don't want to be in the position where he tells me that certain symptoms or lab results aren't relevant when I have evidence to the contrary. I've realized that if I want to be properly diagnosed, I can't sit back idly and put all of my faith in the doctor.

So what do you think? Do I sound crazy for doing this? My new GI is supposed to be really nice and understanding, so I think he may be receptive to it. Thanks guys.

Brian

 

[monkey]

You're totally right to want to be in the know!! Be aware that some symptoms may have links, some may be tenuous links and some may be links which in your case the result is not CD related... If that makes sense!
Be prepared to stand your ground and be assertive without peeing your GI off... I actually put the paper my GI had written on his desk and asked him to explain why he was lying to me... It was a final straw!!
Good luck!
xxx

 

[rygon]

I would just ask them when you need to. It would be worth asking what you are bing tested for when they take your bloods, this will see if you are being tested for everything you need. You can then ask about other things as and when any of them go out of range.

I know doctors dont like it if you try and sound like you know more them all, but they certainly like it when it seems you take an interest and are doing all you can to help yourself

 

[Raleigh]

I understand what you're saying about whether or not the abnormalities are truly linked to Crohn's in my case. It's definitely tough to ascertain the true cause. However, the research that I've done seems to make strong links between Crohn's and my results. I wish I could show you guys everything that I have, but it's about 3 pages, and just too long.

The way that I look at it is that I never had any of these lab abnormalities before my GI issues began, so instead of ignoring them like my previous GI's, I want my new GI to be open in the face of these case studies.

I definitely see why it's important to take an active role in the diagnostic process. I just hope my doctor is understanding enough to listen if any of these things come up.

 

[xoxava]

I think this is a wonderful idea! I've had a horrible experience with my previous GI. All he ever wanted to do was test this, test that, and do a million colonoscopies. But when I questions... he didn't seem to have time for that. So I started researching on my own and I found a lot of useful information here as well. Then I realized he was trying to push certain things on me because he was in with the pharmacy companies and wanted the money. Then he was pissed when I was active in my treatment process and "released" me from his care. Luckily the GI I have now is absolutely brilliant and actually cares what I have to say. Doctors may not like it if you appear to know more than they do, but I think it's very good to be active during the whole diagnosis process as well as your treatment. Good luck!

 

[Raleigh]

Thank you! It seems to be next to impossible to find a GI who has the time to answer questions. And nothing is worse than a doctor who is in bed with the pharmaceutical companies, using patients to make a quick buck. I can't believe your previous GI released you from his care for being active in your treatment process. That's just terrible.

I've heard a lot of good things about my new GI, so I'm hoping he will listen to my questions. I've already been to the Mayo Clinic, Cleveland Clinic, Duke, UNC, and a few other local GI's in the Raleigh area. At this point, I don't have many options left, so I hope this new GI is all he's hyped up to be. I only wish I didn't have to wait another 12 days until my appointment!

 

[xoxava]

Oh man you sound like me, I've gone just about everywhere as well! I went to chapel hill and saw a fabulous gi there, and went to wake forest but wasn't as impressed by the doctor. I know 12 days can seem like forever, but hang in there! Hopefully it will be here before you know it. Keep me updated!

 

[Raleigh]

UNC and Duke were especially bad for me. They both wanted to diagnose me with IBS without running a single test. You would think with all the great hospitals in this area, we would have an easier time finding a great doctor. Anyway, thanks again, and I'll keep you posted.

Brian

 

[Adam1971]

I am curious what you found about the "diagnostic importance of perianal skin tags"?

Thanks

 

[Raleigh]

Case Study: Histology of anal skin tags in CD: an aid to confirmation of diagnosis
We have investigated excision biopsy of anal skin tags as an adjunct to rectal biopsy in the diagnosis of Crohn's disease. Twenty-six patients with proven Crohn's disease of the large and/or small bowel were studied. All had perianal skin tags removed under local anesthesia as outpatients, when rectal biopsies were also obtained. Three sections from each skin tag and three from each rectal biopsy were examined for granulomas. The rectal biopsies were also examined for changes 'suggestive' of Crohn's disease. Anal skin tags from 26 patients without Crohn's disease acted as controls. Of the patients with Crohn's disease, granulomas were found in both anal skin tags and rectal biopsies in five patients, in anal skin tags only in four, and in rectal biopsies only in three. When present, granulomas were more plentiful in anal skin tags than in rectal biopsies, being seen in all 3 sections in 7 of 9 'positive' tags (i.e.: in 31% of 78 sections), compared to only 1 of 8 'positive' rectal biopsies (i.e.: in 13% of 78 sections). No granulomas were seen in control anal skin tags. The procedure provides a simple technique which is complementary to rectal biopsy, by which histological confirmation of Crohn's disease may be obtained.