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Crohn's Disease Forum » General IBD Discussion » Need advice -- Docs with two different Dx


 
01-10-2013, 06:44 PM   #1
solid_sal
 
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Need advice -- Docs with two different Dx

So I had initially been dx with Crohns last year in June based on the Prometheus blood test and the pill cam (found ulcers in my terminal ileum along with erythema and lymphoid hyperplasia). I was on entocort, pentasa, and remicade up until November. I start to feel somewhat better with the Remicade until a couple of weeks after the 4th infusion. Then I changed doctors (talking to the old doc's pa wasnt working for me) and the new doc took me off of ALL meds. The new doc didnt think I had Crohns but he did an endoscopy, colonoscopy, and another pill cam. He found erosions/ulcers in my duodenum (biopsies were negative) and new bloodwork does not show inflammation (but my bloodwork never showed inflammation). From what he is telling me the rest of my small bowel is clear. I am skeptical of this new doc. I still have alot of my original symptoms (plus others):

Gastro symptoms
- mucus (alot of it) with stool
- nausea
- diarrhea
- lower abdominal pain
- smelly stool

Extraintestinal symptoms
- joint pain
- burning eyes
- geographic (painful) tongue
- random goosebump feeling
- pain/swelling in the muscles in the back of my head
- acne outbreak on my back

I am kind of lost now. Im thinking of going back to my old doc or going to a 3rd doctor. I dont want to get dx with IBS when I know this isnt IBS. IBS doesnt cause some of the symptoms I listed. Also something else that concerns me is that my small bowel is mostly clear now (except for the duodenum) ... which to me means the Remicade was working and now I am off of it. But I still have symptoms which to me means the disease is still active. Anybody have any advice?
01-10-2013, 07:37 PM   #2
kiny
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what's the new doctor suggesting you have?

did the first doctor never do a biopsy?
01-10-2013, 08:06 PM   #3
Ihurt
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ughh, I know this is not what you want to hear, but you may have to get one more opinion, kind of like an arbitrator sort of speak. I am certain you wont have to do any tests over. I would get copies of all your tests from both doctors and bring it to the third doc and see what he/she says.
01-10-2013, 08:18 PM   #4
tots
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I am so sorry you are dealing with this.

My third Dr told me EVERY test you have Can be negative and you can STILL
Crohns Disease. It's one the the hardest diseases to Dx. This is my first flare
that has shown up with blood work, it usually shows up on my small bowel
series

I think it's bad that he took you off your meds . Once you have a Dx it's hard to switch Drs, I hope you get some help soon!


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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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01-10-2013, 08:24 PM   #5
solid_sal
 
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The first doctor did do a biopsy but it came back negative. At that time there was no activity in my duodenum and when he did the colonoscopy he didnt go into the terminal ileum. However, the first pill cam did find ulcers in my terminal ileum.
01-10-2013, 08:25 PM   #6
Miss Underestimated
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I think you're right not to feel comfortable with this. If you really can't stand the PA at your old doctor, find another one. You ate least need to believe your doctor knows what he's doing.

I had kind of a bad reaction to my PA also, but it kind of worked itself out. She was impatient, and did a lot of head shaking when I didn't understand, but I slogged on through it and we are getting along ok. She's just over eager I think, and likes to run tests. ugh.
01-10-2013, 08:28 PM   #7
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it really wasnt a personal thing with the pa ... at the time I had already been through 3 remicade infusions and while my symptoms were slightly improving I was skeptical and impatient so I switched docs ... stupid me. I was starting to feel much better after the 4th infusion but i missed my fifth one since I had already switched docs.
01-10-2013, 08:32 PM   #8
Hobbes650
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I don't believe that IBS will cause any ulceration, so it's most likely not that. Unfortunately, the best "test" for IBD is for a doctor to use a scope and take a look.

Definitely a head-scratcher. Having two docs both look inside with a scope and each say something else certainly means you need a third opinion. With the affected portion of your intestine higher up, the Entocort may be helping, and that drug you might take no matter which doctor is right. Remicade working or not might be harder to figure out, but if you start to get really sick after stopping it, that's a pretty good sign it was working and you have Crohns.

At least it seems like you're feeling better than when first having problems, so something must have worked. But do get another opinion. Crohns isn't a disease you just stop taking medicine for- even when you're intestines look good and in remission, you most likely need to take something. There are people who don't take meds, but it's generally not recommended.
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01-10-2013, 08:44 PM   #9
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Hobbes, I totally agree. Not being a doctor even I can see the cause and effect relationship (stop taking meds get sick). I dont know why this new doc cant.
01-10-2013, 08:45 PM   #10
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if it werent for the Prometheus test I would be totally lost. I feel like the worst thing that can happen to somebody is getting an IBS diagnosis when its really IBD. IBS dx are crap anyways ... its the docs way of saying I dont know what is wrong with you.
01-10-2013, 09:01 PM   #11
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if it werent for the Prometheus test I would be totally lost. I feel like the worst thing that can happen to somebody is getting an IBS diagnosis when its really IBD. IBS dx are crap anyways ... is the docs way of saying I dont know what is wrong with you.

How did the Prometheus test help? I believe there is also some kind of genetic test that can be done- if a certain mutation exists in certain genes it means you're more likely than others to get IBD (from what I know). Blood tests usually point you in a general direction, and with IBD they don't really mean so much (they can be a lagging indicator with IBD). IBD does not have a cause, so your frustration with an IBS diagnosis is pretty similar to IBD-doctors have to rule out things and IBD is what's left over. But if you're sed rate and CRP tests are higher than normal and you've had ulceration with some blood loss, I would think a doctor would rule out IBS. Keep us posted though, that third opinion is going to really help.
01-10-2013, 11:34 PM   #12
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Well the Prometheus test was the first hint that I might have Crohn's. Then came the pill cam which found ulcers in my terminal ileum. To me, that is a dead giveaway. I do not believe IBS causes ulcers in the terminal ileum. Does it?
01-11-2013, 12:05 AM   #13
Hobbes650
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Well the Prometheus test was the first hint that I might have Crohn's. Then came the pill cam which found ulcers in my terminal ileum. To me, that is a dead giveaway. I do not believe IBS causes ulcers in the terminal ileum. Does it?

From what I read online at the mayo clinic site, IBS does not cause inflammation and only affects the colon so I would agree. Certainly doesn't seem to complicated, but I'm not a doctor either. Real curious why doc #2 ruled out Crohns though- you never really hear of someone ruling OUT IBD once it's been diagnosed, but I guess it can happen.
01-11-2013, 09:18 AM   #14
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Actually, IBS can effect ANY part of the GI tract from what I was told by my gastroenterologist. There is also a thing they like to throw around called visceral hypersenstivity. It where the nerves in the intestines are hyper seisitive and can cause extreme pain. This is what I was told.

Now as far as ulcers, NO IBS should not cause ulcers in the intesines, though it CAN cause minor inflammation from what I was told.

I agree though, IBS is just a term they throw out there when they cannot figure out what is wrong with your guts. I think there are many things that can inflame the intestines, even things they have no clue about. It is so frustrating.







From what I read online at the mayo clinic site, IBS does not cause inflammation and only affects the colon so I would agree. Certainly doesn't seem to complicated, but I'm not a doctor either. Real curious why doc #2 ruled out Crohns though- you never really hear of someone ruling OUT IBD once it's been diagnosed, but I guess it can happen.
01-11-2013, 09:32 AM   #15
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Another thing I was thinking is that most doctors will NOT give a diagnosis or treat unless they have positive biopsy results. I think it is because the treatment for crohns in itself can be dangerous(medications and side effects). Thats why I think it is so hard to get a concrete diagnosis. I think there are other disease or issues that can also cause intestinal inflammation besides crohns disease, but I just dont think the gastro's really know much about it. I mean hell, IBS is just another way of saying "we dont know". They still cannot figure out what causes crohns. I mean there are still gastro docs out there who do not even promote probiotics while taking antibiotics! I mean what does that tell you? I dont hold a lot of faith in western medicine. I mean maybe because I have seen A LOT of doctors and specialists in the last 9 years since I got chronically ill. Most of the doctors I have seen( even the ones at MAYO clinic) were not that hot especially when it comes to chronic illnesses. Bottom line is that western medicine is not going to ever be able to really help. I mean they can "try" and diagnose you( does not mean it is reliable or correct), and they can try and treat you, but in the end they just do not know a lot about these diseases.

I have found that I have been my own best advocate since getting sick. I mean basically you have to be your own doctor and research and research as much as you can. Not saying all western med docs are bad, they are not. my primary care doctor is wonderful. She has a very open mind and admits when she does not know something. Her goal is to try and help me feel better. Sometimes you have to see quite a few doctors before you find one that is good for you. If you feel you need another opinion, then by all means, listen to your gut( literally )








The first doctor did do a biopsy but it came back negative. At that time there was no activity in my duodenum and when he did the colonoscopy he didnt go into the terminal ileum. However, the first pill cam did find ulcers in my terminal ileum.
01-11-2013, 11:29 AM   #16
Hobbes650
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When a biopsy is taken, what exactly is it they are looking for? Cancer? And what would a positive biopsy mean when there is suspicion of Crohns? It's not like the cause is known and people know exactly what to look for. Just wondering.
01-11-2013, 12:02 PM   #17
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I think there is a certain thing they look for with a biopsy when diagnosing crohns. Just like with cancer, they look for certain cancer cells that show up with a biopsy.







When a biopsy is taken, what exactly is it they are looking for? Cancer? And what would a positive biopsy mean when there is suspicion of Crohns? It's not like the cause is known and people know exactly what to look for. Just wondering.
01-11-2013, 01:11 PM   #18
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I think there is a certain thing they look for with a biopsy when diagnosing crohns. Just like with cancer, they look for certain cancer cells that show up with a biopsy.

That's exactly why I am curious- there isn't such a thing as Crohns cell. I think they look to see how deep the ulcercation goes. But if the ulceration is in the small intestine, that rules out UC so if you're getting a biospy there, wouldn't that be just for cancer?
01-11-2013, 01:19 PM   #19
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What about bloodwork. Generally you can tell with a WBC, CBC, liver function, CRP and sed rate tests. WBC are generally high during flares with red blood cells and albumin low, some people will show anemia from blood loss or improper nutrient absorption. Then the CRP and sed rate tests will usually be crazy high.
01-11-2013, 03:59 PM   #20
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Well for the small intestines they also could be looking for celiacs I suppose. I am not sure how they distinuish crohns from something else, but I have heard people on here say that they were disgnosed with the crohns through the biopsy results. Cancer on the other hand would likely be visible when looking in the intestines, I mean I think they would kind of know what cancer looks like( but of course they would still have to biopsy it to see what kind of cells they are, like where the originated from( liver, breast etc...) or if they started in the colon.

I know my mom passed away from secondary liver cancer. They did a liver biopsy and found that there were other cells there (from the lungs), which is likely where the cancer origniated. Now with crohns, I am not sure what they look for, but there must be come telltale sign otherwise why would they even do a biopsy other than to rule out cancer..









That's exactly why I am curious- there isn't such a thing as Crohns cell. I think they look to see how deep the ulcercation goes. But if the ulceration is in the small intestine, that rules out UC so if you're getting a biospy there, wouldn't that be just for cancer?
01-11-2013, 04:12 PM   #21
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Well for the small intestines they also could be looking for celiacs I suppose. I am not sure how they distinuish crohns from something else, but I have heard people on here say that they were disgnosed with the crohns through the biopsy results. Cancer on the other hand would likely be visible when looking in the intestines, I mean I think they would kind of know what cancer looks like( but of course they would still have to biopsy it to see what kind of cells they are, like where the originated from( liver, breast etc...) or if they started in the colon.

I know my mom passed away from secondary liver cancer. They did a liver biopsy and found that there were other cells there (from the lungs), which is likely where the cancer origniated. Now with crohns, I am not sure what they look for, but there must be come telltale sign otherwise why would they even do a biopsy other than to rule out cancer..

Ah, forgot about Celiacs. Tissue afflilcted with that would look different than Crohns for sure. Remember with Crohns/IBD though, it's what you have after everything else possible is ruled out. It's that uncertainty that makes it so difficult, and difficult to explain. As patients we want answers and this illness doesn't seem to have any. But at least the treatment is getting better every day.
01-11-2013, 04:51 PM   #22
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Think it depends on the hospital, if you have a biopsy you can check for the amount of crypts to differentiate between crohn's disease and UC, also how the crypts look and their size, spacing, can help differentiate (crypts are the little indentations, you can see in histology pictures, many of them in the multimedia section)

Also, they can see the granuloma involvement in a biopsy and the severity of the inflammation. Looking at the granuloma under microscopes and looking for giant cells and use of staining and other techniques allows them to rule out infections.

They can also use the biopsy to perform a PCR test to rule out TB.
01-11-2013, 04:52 PM   #23
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I can't believe we have the word crypt in our wiki, too cool.
01-11-2013, 05:25 PM   #24
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Hi Sal
Sorry to hear your being messed about like this . My symptoms are almost identical and ive had alot of tests scopes and all the rest of the blood tests yet i have no firm diagnosis after three years .
I do believe that you do have to be your own doctor to a certain extent but you must also recognise when things are not normal like passing blood.
The main thing to do I believe is to try to takes steps to help yourself . Things like a food diary and work and rest pattern. try to get more control .
I have a managed now for three years and I still push them for better drugs and try to get futher than a bottle of pills a week . I hope you get some help soon .

Peter.
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01-12-2013, 10:19 AM   #25
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So the second doc thinks I have IBS. I almost laughed when he told me this. One of the main differences between IBS and IBD is that IBS does NOT, I repeat does NOT, change the structure of the bowel. In other words you will not find ulcers in your small intestine with IBS. This is just plain ridiculous. Looks like I may have to go back to the first doctor.
01-12-2013, 10:31 AM   #26
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What about bloodwork. Generally you can tell with a WBC, CBC, liver function, CRP and sed rate tests. WBC are generally high during flares with red blood cells and albumin low, some people will show anemia from blood loss or improper nutrient absorption. Then the CRP and sed rate tests will usually be crazy high.
Whats weird is that my CRP and sed rate tests never showed anything. Even though my CRP was low the first pill cam showed some inflammation and redness in my terminal ileum (plus the ulcers). My WBC was high when I was first diagnosed and Vitamin D and B levels were low. I know for sure this is not IBS though. When you put my history together Crohn's makes sense. Especially since now I have developed joint pain in both my knees, one of my elbows, and one of my shoulders. I still dont know how a doctor could even come to the conclusion of IBS.
01-12-2013, 11:50 AM   #27
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As far as I know (I don't know the science behind it) biopsies should be able to differentiate between Crohn's, UC and other causes of inflammation. For example, I was told that my endoscopy biopsies also showed inflammation that was the result of acid reflux. I guess each kind of inflammation appears differently/tests differently than others.

It seems unusual to me that these doctors would reach such contradictory conclusions.

And I'm pretty sure that IBS, by definition, can not cause any objective sign of disease like inflammtion. IBS is when symptoms are purely functional (or when doctors aren't able to find any objective sign of disease, at least). I'd like to know why so many doctors seem so eager to make this diagnosis.

Edit: I think I was basically trying to say what kiny said regarding biopsies, but I lack all the scientific knowledge that kiny has.

Last edited by UnXmas; 01-12-2013 at 01:07 PM.
01-13-2013, 12:44 PM   #28
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I mean it is kind of odd that they would say IBS when they saw actual ulcers in your intestines during the pill cam. Now another possibility is that you have something other than crohns so they are just throwing that whole IBS diagnosis at you( I mean it sounds better than saying "we dont know"). I think they like to go by biopsy results when diagnosing crohns disease. They will not give out that diagnosis usually unless they are 100% sure you have got it. I think it is for insurance reasons etc.... I mean some of the meds they treat crohns with can cost Big time$$$$. I mean humira and remicade can cost like between $4ooo and $8000 per injection! No insurnace company is going to pay for that unless that doctor has evidence to back up you have crohns disease definitely. That and I think for insurnace reasons they will not give a dx unless they are absolutely positive.

I kind of think that there may be other diseases out there besides crohns that can cuase intestinal inflammation( baterial infections that they have no clue about, or other diseases which is why some peoples biopsies come up negative for crohns. I mean still, you would think that the doctor would find some sort of treatment for you rather than just let you suffer!

I was told by my gastro doc that they are now admitting that IBS can cause minor inflammation in the intestines in some with IBS. Maybe it is not visible when looking though with a scope. That is where I cannot see how they could call your issue IBS when you had actual ulcers present. What did this second doctor have to say about that?? I mean what did he say was causing these ulcers???

Yeah, I would say a third opinion is in order here. I am sorry you are dealing with all this. I also have No diagnosis yet( well they say IBS lol!). I do NOT think I have IBS either myself, not the way I am suffering. I hope you get to the bottom of things and more importantly, get some help and relief!









Whats weird is that my CRP and sed rate tests never showed anything. Even though my CRP was low the first pill cam showed some inflammation and redness in my terminal ileum (plus the ulcers). My WBC was high when I was first diagnosed and Vitamin D and B levels were low. I know for sure this is not IBS though. When you put my history together Crohn's makes sense. Especially since now I have developed joint pain in both my knees, one of my elbows, and one of my shoulders. I still dont know how a doctor could even come to the conclusion of IBS.
01-13-2013, 03:07 PM   #29
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As others have the biopsy report is provided by the pathlogist.
Get a copy of yours .
In it will state if Ibd is part of the differential dx.
As kiny stated there may need to be certain things present before the pathology report will state Ibd. Granulomas are a big one. We were lucky since they found some in DS biopsies .
It made his dx easier.
His bloodwork and imaging is always normal btw.
But unfortunately not everyone has these present and still has Ibd.
Good luck
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01-13-2013, 05:57 PM   #30
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Unfortunately, this is not all that uncommon with Crohn's or any autoimmune disease really. It is not unusual to have a diagnosis retracted or taken away when switching doctors. This also happened to me. Crohn's disease is very difficult to diagnose...all of the blood tests can be negative, MRIs/CT scans can be negative, but you can still have it. Biopsies are helpful, but they can only take so many biopsies and it is possible that they could miss a section of the colon that is affected. Or the biopsy findings may not be definitive. Many factors go into making a Crohn's diagnosis, but the most important piece (per my GI that is one of the top IBD specialists in the country) is by a visual inspection of the colon during a colonscopy. And that relies on the doctor's judgment, skill, and knowledge.

Were you on the meds when the second doc did the colonosopy? If you were in remission, it would be possible that there wasn't a whole lot for them to see. Request the actual biopsy findings (the pathology report) and take those findings to another doctor for a 3rd opinion.
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