Crohn's Disease Forum » Support Forum » Undiagnosed Club » Should I get a new doctor?

10-17-2011, 08:20 PM   #1
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SawyerAshton's Avatar
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Location: Louisiana
Getting a new doctor!

I'm at wit's end and am hoping that someone can give me some insight as to what my next step should be.

I've been fighting diarrhea/constipation for many many years. Starting in May, the D turned into something fierce. I can no longer eat anything high fiber or any veggies (unless you count potatoes as a vegetable).

I've had fatigue for 3 years and a general run down feeling.

I've had countless blood tests (I can't really recall all of the names and don't know off hand the numbers of them)

I've had a colonoscopy a couple of months ago which found inflammation in my terminal ilium.

My bloodwork for IBD came back "normal"

Currently 'go' about 8-15 times a day.

Here's the situtation:

My GI put me on Asacol HD 800 (3 pills once a day) for a week and a half and I noted minor improvement. He said since there was no improvement he took me off and did nothing more for 3 weeks.

I called and complained and he put me on Lomotil. I've only been taking 1 every morning to start. I was afraid to take too much and not be able to go at all.

In my visit today, we sort of had words. He had said at the last visit that even though the bloodwork doesn't point to it, he thinks it's Crohn's.

Today.... he said that it can't be Crohn's because of the bloodwork and was going to send me home with no change in medication. I pushed back and told him that I can't continue to live like this. He said take more Lomotil and come back in 6 weeks.

****Here's my red flag... He says that if the Lomotil helps, then it cannot be Crohn's and must be IBS. Is this true?

I think I should get another doctor, what do you think?

Last edited by SawyerAshton; 10-18-2011 at 08:25 PM.
10-17-2011, 08:23 PM   #2
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I can't speak to the medications as I've never taken either. However, you should definitely get a second opinion as you clearly do not trust your current doctor.
10-17-2011, 08:27 PM   #3
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Location: Louisiana
I think he's overly cautious and while it's okay for him to keep waiting another month to see if anything improves, it's horrible for me.

I actually like him, but am starting to see some red flags. I have quite a few other problems too such as GERD, Hiatal Hernia, likely Barrett's Esophagus, and had my gallbladder removed a week ago. (I'm 31)

I am beginning to think that I may just have too many problems for him to concentrate on.
10-17-2011, 09:39 PM   #4
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i know how you feel with the diarrhea, but i dont go as many times a day as you do. otherwise i have had all the tests also and show nothing. i know my doc is going to try to say ibs also. i have taken lomitil also and it does help me some but i cant stay on that forever either..
10-18-2011, 03:53 AM   #5
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Location: United Kingdom

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To say you cannot have crohn's because of normal bloodwork is utter nonsense..if you read a few threads on here you will see that this simply is not true and current guidance also say this. Its one of my bugbears!
If your doctor is happy to say all is well on the basis of normal blood work then he is not up to date and I would get a second opinion. I have had 4 transfusions of blood in the last 4 weeks due to massive small bowel bleeds and yet still my inflammatory markers (esr and crp ) have been normal. I had normal bloods for over 1 year of tests when undiagnosed until my small bowel became inflamed to such an extent that it started to bleed. Now it only shows profound anaemia and occasionally raised platelets...So I've got IBS then...If only...
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
10-18-2011, 07:31 AM   #6
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Location: Madison, Wisconsin

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Sawyer, I concur with what Little Miss H said. Get a second opinion. I've been on both meds (I've been told I have IBD and lomotil works for me, so that's BS that it "only works for IBS" - I'm on Asacol 400 mg 2 pills 3x per day right now and that works well for me, but it's very mild and might not work well for you if your illness is moderate or severe). As for the normal blood work, from what I've read, about 10% of people with IBD will have totally normal blood work, even when they're in a horrible flare. So blood work is NOT an accurate measure to go by and it does not mean you don't have IBD! Also, he actually found inflammation but is still saying IBS??? IBS does not cause inflammation! Please do get a second opinion, it sounds like your doctor doesn't know what he's doing.
10-18-2011, 08:04 PM   #7
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Location: Louisiana
I went back to my GP today and told him the situation. He is in the process of finding me a better doctor and setting up the referral (He let me pick the first doctor).

He also started me on Cipro 500 mg 2x a day and Flagyl 500mg 3x a day.

He said that he's going to try what he can until I can get in to see the new GI. I go back to see him in 2 weeks and discuss how these meds are working. If they are helping, then we may add back a higher dose of Asocol back into the mix.

I love my GP. He's very straightforward and honest. When he doesn't know, he says so.

Hopefully I'll be on the right track soon. In the meantime, I think I'll need to start keeping a change of clothes in my truck.
10-19-2011, 12:55 AM   #8
Join Date: Aug 2011
Location: Alaska
Hi Sawyer! I have many of the sames issues as you (I'm 30). Everything hit the fan when I had my gallbladder removed in May and shortly after discovered GERD, a hiatal hernia, no Barrett's esophagus but eosinophilic esophagitis. I too was not happy with my GI. I'm currently being treated by my GP and pretty satisfied at the moment. If and when the time comes that I decide that a GP is not cutting it, I'm going to ask for a new GI referral. Hopefully things continue to go well with your GP and you have better luck with your new GI!

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