Crohn's Disease Forum » Support Forum » Undiagnosed Club » New - Undiagnosed and going!

07-23-2015, 03:20 PM   #1
Join Date: Jul 2015
Location: Brooklyn, Mississippi

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New - Undiagnosed and going!

Hi, I am new to this group and new to stomach issues. I am a 38 yr old female and have been having diarrhea for as long as I can remember. Not watery but more of really soft stool and I go anywhere from 3 times a day on a good day to 12 times. I also had severe nausea and burning in my chest. I also had excruciating stomach pain that will wake me in the middle of the night to use the bathroom and have diarrhea and feel so sick and hurt so bad I feel like I am dying...cold sweats and want to pass out. They have been happening speratically for years and I never know when they will hit. But I always thought it was normal to have an occasional stomach ache, I never realized terrible pain was not.

Well the nausea got so bad in May I went to my family dr who tested mg blood and it came back positive for h pylori. Took 2 antibiotics and acid reducer and though the nausea has let up (I still get it daily though, just not constant) for 2 weeks and was referred to a gi dr.
Never saw the GI dr, saw a PA. She scheduled me for a upper scope and colonoscopy. Upper scope came back with...severe reflux, esphogeitis, inflammation,ulcer on the top of my esphogus, gastitis, ulcerated polyp in my stomach, oh and barrets esphogus. Colonoscopy found, internal and external hemorrhoids, sigmoid polyp (removed), inflamed terminal ileum, and 3 ulcers in the terminal ileum so he ordered a pill cam.

A week later I call for me biopsy results and was told by a nurse that ALL biopsy showed lots of inflammation but the parts tested were negative for crohns and cancer. Great other than the fact my gi dr flag told me he suspects crohns from seeing the ileum and ulcers.

So concerned I called again a week later and just wanted to someone to explain things to me to which I got a rude nurse who just said "your biopsis showed inflammation from reflux and you don't have crohns because if the dr suspected crohns he would have ordered more tests!" My reply, I just did the pill cam a few days ago!. No results for that yet.

I received a call this past Monday from a nurse saying my biopsy came back posting for h pylori again and I needed to start antibiotics. I told her I had just got off the antibiotics right before my scopes. So now have to wait until I see the dr and be off all stomach meds for 2 weeks before they can do the breath test.

So just this past Tues I got to thinking and pulled my scope paperwork out to read and found out the dr prescribed 500mg Pentasa (2 pills 4 times a day) yet I never got the script so called yesterday and they called it in. So does that mean I have crohns??

Jump to this morning, I got the pill cam and the report read, inflammation and gastritis but no signs of crohns in the small bowel. So now what? I called the Dr's office and spoke with the Nurse and said should I be taking pentasa if I don't have crohns and her reply was, "if the dr prescriped it he feels yoi need it, but it's up to you if you take it or not."

Help! What in the world do I do now? I don't get to see the dr at my next appt isn't until 4 Aug and I'm seeing the PA. Out of frustration today I called to see another gi clinic and went to have my records released to another gi dr for a second opinion. Not sure when I will get in but I'm going crazy wondering what is wrong with me.

Can h pylori cause ulcers in the lower intestines? Don't get me wrong I don't want crohns but at the same time I just want a definate answer but everything I read, that may be never.

BTW I apologize for the length of this but want to get ALL my info to hopefully get some answers.

Thanks for your time.
07-23-2015, 03:35 PM   #2
Join Date: Jul 2015
Location: Brooklyn, Mississippi

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Forgot to add that I have also lost at least 30 lbs without effort but I am overweight so that to me right now is not a problem. Lol
07-23-2015, 03:49 PM   #3
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

I'm sorry you're going through this. I'm sure someone will be along who has some experience in what your going through.

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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