What are your experiences with the GI(s)?

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Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 2/13/2008 12:45 PM (GMT -7)   
I was just curious what everyone's experiences have been with their GI doctor(s). 
My GI doctor is looking for solid, hard proof of Crohn's before she diagnoses me.  I saw my Internist on Monday and my Internist said if I went to see another GI they would probably say something different.  Anyhow, my testing and all that is over for now... :-)   and my Internist believes I do have Crohn's based on symptoms (ulcerations in my terminal iliem, mouth sores, episcleritis, arthritis symptoms, diarrhea, etc.) and she is treating me with Flagyll right now.  She said I do not "officially" have Crohn's until a GI puts the "stamp" on it.  Also, she said I do not have to have the small capsule done because she figures the GI would just say the same thing, even if ulcers were found and they cannot biopsy those.
Anyhow, just wondering what experiences you all have had.
Thanks a bunch!

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 2/13/2008 1:01 PM (GMT -7)   
Well my GI diagnosed me immediately based on clinical history and scope and biopsies. But it's important to know that not every case is that simple to pin down. And some GIs are hesitant to jump out front until they are certain, so caution may be a good sign. One factor is how you respond to treatment -- if the meds kick in and reduce your symptoms, that's a pretty good sign that the diagnosis is right. Sounds like you are on the right path at any rate . . .

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 2/13/2008 3:20 PM (GMT -7)   

My hubby did it the hard way, he was diagnosised in surgery as he had an acute surgical belly and had to have surgery which they thought was appendicitis and turned out to be Crohns so his GI knew what he had from the get go.

I guess we never had to go through a lot of what I read here.  I wish you the best.

Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
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Regular Member

Date Joined May 2007
Total Posts : 76
   Posted 2/13/2008 3:32 PM (GMT -7)   
My doctor had diagnosed me with UC about 8 years ago, and only 1 year ago changed the diagnosis to CD. Even though she originally pegged it wrong, I understand Crohn's can be hard to diagnose since it looks very similar to UC. UC affects the colon in one long stretch - where CD can bo more 'spotty' with areas of healthy colon in between the 'sick' areas.... I can only assume that's why your doc is being cautious with the dx.

She thought all along it could be Crohn's but would not diagnose it till whe was sure... a colonoscopy verified the DX once the disease got bad enough for her to tell the difference.

Now all the signs are there and I have my final DX. Mistakes still sometimes happen, no GI is perfect. She mistaked an abscess for a hemhorroid, gave me entocort even though my problem is on my left side (entocort works on the right), etc... I think since every case of CD is so different it makes it rougher on the GI to get it right the first time every time. Hey, that's why we are all on different meds in this forum :)

Good luck to you!
Diagnosed with UC 8 years ago/Diagnosed with Crohn's 6/26/2007
Canasa / 1 per day
Azathioprine / 100 MG Day
Colazal/ 9 per day
Entocort/ 3 per day
Asacol / 12 per day
Levaquin 1 per day
Flogyl 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!) 

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 2/13/2008 3:47 PM (GMT -7)   
Over about eight months I saw a lot of doctors and had almost every blood and imaging test possible...plus two procedures in interventional radiology (ouch!). Finally my primary ordered a HIDA scan to rule out gallbladder trouble and a colonoscopy to rule out Crohn's, since that's all that was left. That was my attitude going into it--that the colonoscopy would rule out Crohn's--since I had already had a "normal" SBFT about six months earlier, and my symptoms were not typical of anything, including Crohn's.
The local GI I had consulted previously for liver problems did the colonoscopy. He is a hepatologist and does not know much about IBD. The colonoscopy (TI narrowed and ulcers), biopsies, and CT enterograph (final >5 cm of Ileum inflamed) were suggestive of Crohn's, but I think what really cemented it for him was the Serology 7 results, positive for Crohn's and high titers.
He was 100% surprised, but totally convinced. When I saw him at a follow-up appointment, he happily clasped his hands together and told me he was "excited to make the diagnosis"--I guess excited to finally solve this puzzling mystery! I didn't find it that exciting...I was holding out for something curable by antibiotics.

Veronica Ballerina
Regular Member

Date Joined Nov 2007
Total Posts : 69
   Posted 2/13/2008 6:35 PM (GMT -7)   
Well, my diagnosis was a maraton... In Nov 2007
I saw 6 different doctors, 3 of them said that it was just something I have eaten - Yeah, I must have been eating something bad for the past 2 years maybe, come on that is the best you can do... Another doctor said I was crazy and that my pains and diarrhoea were tricks of my mind that I should see a psychiatrist, the other one was so disgusting that suggested that I either had AIDS or Hep C, another one said that I could have leukemia, because of my hight WBC and the several bruises I had in my legs - which I discovered later it was eritema nodoso. Imagine it, my head was so full of bad things, it was a terrible time...It had to be me the person to search a little bit in Internet and find that I could have CD, and then scheduled an app with the best GI specialist in IBD here in my city.
It is not easy, the doctors totally discarded my extra intestinal symptoms, specially my joint pains and the bruises, that could not let me out the bed.
Veronica Nunes - 27 years - Brazil

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 2/13/2008 8:41 PM (GMT -7)   
I went for over 8 years without a correct diagnosis, so I know how you feel. I was told it was IBS for the longest time. Then it was because my gallbladder was bad, then it was bile salt diarrhea from not having a gallbladder. It took me being admitted to the hospital with a sever GI bleed. That's when they took me seriously and took biopsies. They found the ulcer that was bleeding, and inflammation in my TI. Biopsy confirmed the Crohn's. I sure wish it wouldn't have had to come to that before getting the proper treatment! For some reason they have a hard time pinning this diagnosis down.
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

Veteran Member

Date Joined Nov 2007
Total Posts : 4366
   Posted 2/14/2008 1:45 AM (GMT -7)   
indigo...have you had the Serology 7 blood test? It is supposed to be over 80% accurate, and may help you make the Crohns diagnosis.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 2/14/2008 8:40 PM (GMT -7)   
Was symtomatic for about 5-6 years before diagnosis. Probably wouldn't have diagnosed me when they did until I started hollaring about severe pain during bowel movements. Small bowel follow through and MRI bought me the diagnosis.

As for my experiences with my GI....somedays she has her thumb up my butt and some days she has her thumb up HER butt! But mainly she is the best in her field here. If I could just get her to think outside of her conventional therapy box on occasion I'd be happy...it's just what you get with PPO insurance.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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