Crohn's Disease Forum » Support Forum » Undiagnosed Club » New Member, Currently undiagnosed

11-14-2014, 07:00 AM   #1
Join Date: Nov 2014
New Member, Currently undiagnosed

I'm suspect's Crohn's, but isn't sure.

I've been suffering from GI issues since I was a teen. I've been told I have IBS and have had a history of upper GI issues in my stomach. In 2007, I underwent an upper endoscopy and they found several ulcers and scaring in my stomach. That developed into an infection. I was given antibiotics and told to take an antacid.

About two and a half years ago, I drove myself to the emergency room, because I had severe abdominal pain. This was below my stomach and didn't feel like the same stomach pain I had experienced before. They were unable to make a definitive diagnosis and sent me home with pain medication.

About 2 years ago, I started long distance running. I would occasionally get the "runners trots" from running long distances. However, I would go to the bathroom and be fine after that.

About a month and a half ago, my "runners trots" went out of control. I was unable to stop having bowel movements and it turned into severe diarrhea. I took a few days off and tried running again. But I had no luck.

I read online, stories about "runners colitis." This seemed similar to what I was experiencing, but the problem continued. I stopped running completely and the diarrhea and several abdominal pain continued. I had bloody stool, which scared me. I went to the emergency room. They performed a CT scan and found signs of inflammation in my colon. The radiologist said he believed it was "some type of colitis." However, no definitive diagnosis was made and I was told it could be either bacteria or a virus. I was told to follow up later with my primary care physician.

About two weeks later, I made an appt. to see my primary care doctor, because the abdominal pain had continued and intensified. I continued to have diarrhea and would also experience bloating. I started to develop severe night sweats and would wake up several times a night, drenched in sweat.

My primary care doctor evaluated me and recommended doing blood work and a stool sample. I provided both a stool sample and blood. No infections were found in my blood or stool. However, my liver enzymes were highly elevated. I was told this usually means fatty liver. However, my liver was normal on my CT scan. I was referred to a GI specialist the following day.

The GI specialist told me he suspected either UC or Crohn's. I had a colonoscopy the following week. I was told my colonoscopy was normal, but they found a large area of clumping/bumpy tissue near my terminal ileum. The doctor told me it was probably nothing to be worried about and that he had seen it before. Biopsies were sent to pathology.

I received a phone call two days ago from my GI specialist's medical assistant. She told me they received the pathology report back. She said the doctor suspected it was either a bacterial infection or Crohn's disease. But again, no diagnosis was made. He gave me antibiotics to try and they offered no additional information on where I go from here.

I continue to have abdominal pain, loose or water stools, discomfort, night sweats, irritated eyes, and occasional joint pain.

I reviewed my pathology is what it said...

1. Terminal ileum, nodular mucosa, biopsy:
Small bowel mucosa with chronic architectural distortion,
including villous blunting, active inflammation with healing
ulcers, and prominent lymphoid infiltrates, favor reactive (see
Immunohistochemical stain for CMV is negative for viral
No granuloma or dysplasia identified.

2. Colon, entire, biopsy:
Focal active colitis (see comment).
No granuloma, chronic architectural distortion, or dysplasia

Comment: No fungal organisms are identified on GMS stain (slide 1A7),
performed with appropriate positive control. Differential diagnosis of
chronic active enteritis and focal active colitis includes infectious
colitis, medication-associated mucosal injury, and evolving
inflammatory bowel disease. Clinical-pathologic correlation is

I am frustrated that I am not getting answers. I have good days and bad days, but most of them are bad days.

The worst part of my illness is having to go to work. I am a law enforcement officer and can't always be near a bathroom. It makes it really difficult to perform my job duties. I've had to call in sick several times, when things are really bad.

Has anyone else experienced a similar situation? Any help or support would be helpful. Thank You!
11-14-2014, 10:40 AM   #2
Forum Monitor
tzvia's Avatar
Join Date: Mar 2012
Location: Philadelphia, Pennsylvania
Sorry that you're going through all of this. Of course I'm no Doc and can't say for sure, but Crohn's can happen anywhere in the GI tract, especially the terminal ileum, and typicallly comes with lots of diarrhea. Your history indicates ulcers in the stomach, inflammation in the colon, diarrhea, abd pain, and some sort of irregular tissue around the terminal ileum including inflammation and ulcers.

Your GI suspects Crohn's or bacterial infection, you say. Did you tell your GI that you have recently been treated with antibiotic? Did your GI give you some kind of meds to take?

It seems like a Crohn's diagnosis could be possible here. Keep pushing your GI for more tests or treatment if he is unsure or go get another opinion from another GI.
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" small bowel removed 10/2014

Current meds: Stelara, Entocort, Questran
Past meds: Prednisone, Humira

12-15-2014, 04:17 AM   #3
Join Date: Nov 2014
December 2014 Update
I was put on Flagyl for two weeks with no improvements. The doctor wanted to rule out an infection, even though all my tests came back negative for an infection. He then put me on Apriso. Well, that only made my symptoms worse.

I went back for a follow up and met with his Nurse Practitioner, who seemed to have no knowledge of my case and told she didn't believe it was an IBD, even though she has never seen me before and reviewed my case. I asked if she could perform additional tests and she told me to just take the Apriso and come back in a month if I wasn't better.

About a day later, I received a call from the doctor who said "it could be an IBD after all." He put me on 40 MG of Prednisone for two weeks, then taper off doses after that.

I called my primary care doctor, asking for a referral to a different clinic and doctor. I have not been satisfied with the care they have provided. They've essentially just thrown different medications at me, hoping they'll help, but they don't give me any answers.

So far, I've counted 8 different medications I've been given that are on my counter. Some like Lomotil or Bentyl offer temporary relief, but don't solve the problem. Also, I can't take those at work, because they impair me. So, that basically offers me no help in my day to day life, unless I was at home laying in bed.

I've been on the Prednisone for 8 days now with no changes. I of course get all the nasty side effects that come with it. Moon face, hot flashes, muscle pain, water retention, etc. I figured after about 3-5 days I would have some relief, but so far it hasn't helped.

I've had really bad diarrhea the last week, to the point it is causing me to get severe hemorrhoids and bleeding. Also, dehydration as well. I spend most of my nights at work in the bathroom, because I can't be more than a few feet away from a toilet. If I get sent on a call, I have to hurry up and get back ASAP. I would call in sick, but then I feel guilty, because we are short staffed and others have to come in and work for me on their days off.

I've had about as much as I can take. This entire illness has made me depressed, irritable, and almost hopeless. I haven't been diagnosed, but I keep getting told "it might be Crohns." If I had some answers and a proper treatment plan, then maybe that'd give me some hope for a healthier and happier future. But all I've been told is to just keep taking pills and coming back in for follow up appointments.

I called the new GI doctor I was referred to and asked when I could get an appt. They said "the doctor usually reviews your case before they schedule an appt for you." Well, that was 12 days ago. I haven't heard anything since.

Has anyone else had to battle with doctors to get answers? Anyone else experiencing a similar situation? Any support, advice, or just lending an ear would help. Thank you! Merry Christmas and Happy Holidays!
02-17-2015, 10:48 AM   #4
Join Date: Nov 2014
Here's an update on my situation. So, I've been battling this since the beginning of October. I've had multiple blood tests, colonoscopy, capsule endoscopy, fecal tests, physical exams, CT name it, I've had it.

I was getting no definitive answers, other than I have some form of colitis. My first CT scan from the ER showed active inflammation. My colonosocopy showed nodules or enlarged lymphnodes at my terminal ileum. My pathology report from my colonoscopy showed active colitis, healing ulcers, and scaring in my large intestine.

Recently I've had an increase in mucus and bloody mucus during bowel movements or when passing gas. I've also developed a fistula near my anus. After my doctor discovered the fistula, he decided to try another test to look for Crohn's.

Two weeks ago my Dr. ordered the Prometheus Crohn's Serological Prognostic Blood Test. It was sent off to their lab in San Diego.

I received the test results yesterday. It was positive for Crohn's. So, I guess I finally have an answer. I am scheduled for a follow up appointment to plan long term treatment.

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