Misdiagnosed with Crohns

10 years ago I was diagnosed with Crohns Disease after a colonoscopy. The dr who diagnosed me closed her practice two years later and I switched to a different Dr that I have been with for the past eight years. I have been on Pentasa for the past ten years as well as the occasional prednisone, entocort and uceris for the first time this year. My symptoms are stomach pains, mucous in my stool, diarrhea, fatigue, blood in my stool and sometimes I go to the bathroom and there is just blood. These symptoms flare up and usually go away after being on a form of steroid for six weeks. The last eight months I have had a lot of these symptoms as well as nausea. I was put on a total of 17 weeks of entocort and 5 weeks of uceris in a 7 month period. I just recently had a colonoscopy on 8/31/15 after which I was told that I was misdiagnosed with Crohns. My Dr told me there were only signs of hemorrhoids which does not explain all of my symptoms. He told me to go off of my Pentasa and follow up in October.

Does anyone have any advice? I am not sure if I should get a second opinion at this point or if there is something else I should be getting as a diagnosis.

Hi and welcome.

Are there plans to do an upper GI scope or x-rays?

I've had scopes over the years that were clear (along with biopsies). No signs of Crohn's.
I'm kinda perplexed.

I wonder how your doctor (GI?) from the last 8 year could prescribe you all these IBD medication and earring all your symptoms description without performing any kind of test on you? It is the first time in 8 years you have a scope?

My original Dr diagnosed me with a colonoscopy originally. The dr I've had in the last eight years did a colonoscopy in 2013 that came back fine but continued me on the meds. When I went to my last appt before the colonoscopy on 8/31 he first told me my next step would be injectable drugs but then changed his tune with a thought that I may have been misdiagnosed by my original dr. He tried to get the test approved through my insurance in which I swallow the camera and it takes pictures throughout but my insurance denied it indicating I had already been diagnosed. He then decided to perform another colonoscopy that he said came out fine so he has now told me I don't have crohns and has taken me off the meds. I was told that the meds could be what was making me sick and that my colonoscopy showed hemmeroids. I'm just very confused. My blood work back in December and stool sample back in February both indicated inflammation and I was having all of the symptoms I listed above. I've had all of these symptoms randomly throughout the years and the steroids usually clear it up.

hi jnhall, mmm to be honest the only test that showed my crohn's was an mri/ct scan, it can be hard to dectect if it is in the ileum via a scope, not impossible mind,, if you can get a scan approved it could be invalueable, as if you have not got crohn's you save on meds n get the right treatment n if you have, again you will have the correct treatment .. a second opinion is always wise as it can be so hard to diagnose bowel problems as they tend to manifest similar symptoms.. good luck n best wishes ..

Unfortunately doctors still don't know a lot about Crohns and most aren't willing to admit that. I have normal colonoscopys too sometimes. Don't give up. See a different Dr. Something is obviously wrong and don't let them tell you otherwise.

going up and down (flare and remission) is quite typical of IBD. Maybe during last colonoscopy you were on some kind of treatment which masked the inflammation during colonoscopy? ideally a colonoscopy is performed when symptoms are in activity. Did the doctor took biopsies? You were diagnosed by first doctor with colonoscopy? Your best bet is really to have a colonoscopy when symptoms are active.

The fact that the doctor was aware since december and february of abnormalities in your stool and blood tests and did not ask for a colonoscopy right away to examine you is passive practice in my books. Its unfortunate your insurance company refused the pillcam test but waiting 6-8 months to perform colonoscopy as second plan of action is way too long. I feel you need to see another GI who will be more proactive in practice.
you shall see pretty soon how your symptoms are behaving under no treatment and if you cant find another GI in the mean time at least I hope you can find an agreement with your current doctor to take you as an ''emergency'' rapidly for a colonoscopy when symptoms are active.

is the medical clinic you used to go at diagnosis completely close? maybe they have your record somewhere or maybe biopsy samples have been sent to an hospital nearby for pathology reports. You could find a way to get those reports at the archive department of the hospital. doctors usually take biopsies during colonoscopy which are sent to hospital for analysis. the hospital should still have those reports.

Thank you for all of your help. I had already started to feel better when he did my colonoscopy on 8/31 and at the time that he did my previous colonoscopy in 2013 I felt good and had no symptoms at that time.

The original office that diagnosed did completely close back in 2008. My current dr did have a document scanned in from my original dr that stated she had diagnosed me with crohns but I don't know about the tissue samples from back then.

He took two tissue samples on 8/31 and they told me that both samples came back clear.

I go back to him at the beginning of October. This thread has helped me tremendously on what kinds of questions I should ask him when I go back.

good luck for oct, make a list of the questions ,so you dont forget anything you want to know n have answered.. argue your case n entitlement to proper tests n proper treatment, something is wrong n you need to know what that is n fast so the right treatment can begin... best of luck

Two samples ...???
Since crohns skips around and can be only microscopic when it's mostly under control

They always do 6-7 on disregardless of how good the surface looks .

I am guessing that any colonoscopy sample is read by a pathologist at a hospital. Assuming you know which hospital your previous doctor was associated with, I would contact that hospital to get the pathology reports of your first colonoscopy.

I am having a similar problem. In March of 2014 I was diagnosed with Crohn's based on inflammation markers in my blood test, and mild patchy colitis in my colon. I had both the upper and lower scans done. I recently switched doctors because of issues I was having with staff at the office.

My new GI started working on my diet with me. But the pain in my lower left got so bad we decided to do another colonoscopy and upper scope. He found diverticulitis (which I had before) but no signs of colitis and no signs of the ulcers i had. Now my diagnosis is back to IBS.

I'm just very confused too. Could the first doctor be wrong? Could the second? And if I don't have Crohn's (which I always doubted I did) where are all my symptoms coming from?

I have soft stool constipation, I can literally poop for 20 minutes, muscle and joint aches, weakness, pain in my lower intestine/uterus area, and I cant stand the summer heat (I live in Wisconsin so 80 degrees takes me down). This has been bad for about 3 years now.

I am happy I may not have Crohn's but who do you trust for something like this? Hard to get a 3rd opinion when it's internal.

We only have one hospital in the town I had my first colonoscopy done in so I will definitely contact them. Hopefully they still have the records.

Hi Jnhall
It's a familiar situation for me. You get treated for IBD when they find bowel inflammation, the medicines help, you get a colonoscopy at the time when you are in remission or have less inflammation and then the doc says there is nothing wrong with you and therefore stop taking the medicine.
Run and find another doctor in my opinion. Good luck!