Crohn's Disease Forum » Support Forum » Undiagnosed Club » Waiting is the worst...

10-03-2012, 05:58 PM   #1
Join Date: Oct 2012
Location: Estonia
Waiting is the worst...

How are you guys doing?
One month ago I had huge stomach pain combined with heartburn syndromes so I decided to visit ER. They told me I had just gaz in my stomach, however during my blood test they found out that the level of S-ALAT was twice higher than normal so I was sent to a gastroenterologist. After few more test, I was diagnosed with fatty liver (I am 178 cm and I weight 73 kg, I always thought that fatty liver goes well will obesity, anyhow). Since I still had the original abdominal pain and heartburn-like symptoms, the gastroenterologist sent me for endoscopy and took a sample of my stool. I was told that they didnt find any signes of ulcera or anything from the endoscopy, however they did take three samples and they found the presence of Helicobacter pylori, for which I will start a combination of omeprazole-amoxicillin-fromilid for 1 week.

They didnt find blood in my stool, however st-calpro (Calprotectin) was positive 50-200. The gastroenterologist said that this is a sign of colon inflammation. I was scheduled for a colonoscopy on the 3-rd of October, meanwhile she told me to take metronidazole 500mg twice a day for 10 days. Before I used to have bm one or two times a day while now is 6 times each day. My stool is loose and sometimes I have to visit the toilet two times within 20 minutes. I called my doctor and she recommended me not to stop the medication.

Today I had the colonoscopy and she said that she didnt see any problem in there, however she did take a biopsy which will take 2 weeks to analyse.
She was more focused on IBS asking me if I have stress and stuff. When asked about Crohn's, she said no.

This is very strange to me because as far as I have read online one cannot have IBS with positive fecal Calprotectin test.

I am 28 years old, non-alcoholic, never used drugs. I used to smoke for 7 years but I quit last year.

What do you guys think?
10-03-2012, 06:09 PM   #2
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motheroftwins's Avatar
Join Date: Aug 2012
Location: Northern, California (In the beautiful Napa Valley)
Hi Alme, sorry your going through all this. During the colonoscopy did they take only one biopsy? Waiting for the biopsy can be very frustrating and the worst part of this journey besides the symptoms. Hopefully, your GI dr. can give you an explanation about the positive fecal Calprotectin test when you get your biopsy results. *hugs*
Diagnosed Sept 18, 2012
Prednisone 40mg started 9/18/12 StopTapering 10/16/12, 20mg. Back up to 40mg 10/26/12
Humira, Sulfasalazin 4500mg
Proctofoam HC (for fissure) as needed
Dexilant 60mg

Zofran and Compazine (tummy troubles) as needed
Norco as needed
Tamadol 50 mg as needed

Folic Acid
Vitamin D

pyloric stenosis and appendix
10-03-2012, 06:11 PM   #3
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Hi There. Sorry to hear you are going through all this. I also have not been dx yet. I am still trying to get some tests done.

I will say this. My gastro doc did tell me also that you can have a raised calprotectin level for any number of reasons. He said for instance, some people take an antibitoic and it can irritate and inflamme the colon which would raise thie marker. Also certain meds can inflamme the colon like asprin, or NSAIDS. In his opinion, this test is not reliable as far as diagnosing any one disease.

I also have H-pylori. I however cannot treat it as I am allergic and have adverse reactions to ALL the anti-B's they treat it with. Also H-pylori cannot be that easily gotten rid of. 70% of people get it right back, or rather it never really is killed off to begin with. They usually only treat it if there is an ulcer present, otherwise they are not suppose to treat it. more that half of the world is infected with H-pylori. Pine nut oil is suppose to help kill it naturally as well as mastic gum. These are two natural alternatives that supposedly have had good results for some people. You can google it.

I guess I would wait and see what your biopsies say. I understand your frustration. I am also being told mine issues are IBS. But I have not even had any testing to prove that. I have only had blood work and stool tests and an abdominal ultrasound thus far. I am trying to get more testing done to see what is going on. Good luck and I hope you feel better soon and get your answers.
10-03-2012, 06:14 PM   #4
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Avw's Avatar
Join Date: Jun 2012
Location: Lafayette, Louisiana

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This may be totally off-topic... but I notice you said you quit smoking last year? I've heard of people quitting tobacco and developing Ulcerative Colitis, apparently tobacco use can stave off symptoms of UC.

... just a thought, hope you can get some answers and relief soon!
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
10-03-2012, 06:21 PM   #5
Join Date: Oct 2012
Location: Estonia
This may be totally off-topic... but I notice you said you quit smoking last year? I've heard of people quitting tobacco and developing Ulcerative Colitis, apparently tobacco use can stave off symptoms of UC.

... just a thought, hope you can get some answers and relief soon!
As funny as it sounds, I came across the same article few days ago but decided to ignore it. Maybe it's true...hey after-all our human body works in very strange ways
10-12-2012, 08:17 PM   #6
Join Date: Oct 2012
Location: Estonia
Hello dear friends
Today I had a meeting with my GI and we discussed about the results of the biopsy. First I would like to say that I was on H-pylori treatment, triple therapy with Omeprazole 20mg, Amoxicillin 1000mg and Clarithromycin 500mg. I was told to take them for one week, twice daily. After day 3 I had to stop because I went up to 9 BM per day. Was very difficult to maintain that rhythm. So I was called for a meeting today. She said that during the colonos she didn't see anything strange. She took 3 samples of biopsy. The below results are translated into English using Google Translator. Neither the original language nor English are my native languages so please do forgive me if what is written doesnt make any sense .

I. Tangential cut of the bioptate of the mucosa in the small intestine. Slight inflammatory infiltration in the lamina propria. A few lymphocytes, plasmocytes and individual eosinophils in the infiltrate. No malignitate.

II. Bioptate of the mucosa in the colon.
Normal architecture, minimal lympho-plasmocytic infiltration in lamina propria. No malignitate.

III. Bioptates of the mucosa in the colon (2).
Architecture without any important/relevant changes. Slight lymphofollicular hyperplasia and slight inflammatory infiltration in the lamina propria. A few lymphocytes, plasmocytes and individual eosinophils in the infiltrate.
- Slightly expressed chronic inflammation with few activity.

T65200 Small intestine/ileum
T67000 Colon
T68000 Rectum
M42000 Inflammatio chronica et acuta (gradus levis)
M 09450 No malignitate

After presenting me with the above results she said that she is not sure how to interpret them.She says I don't have anything bad. However she has sent me for Fecal Calpro test again, and S-CRP blood test. I asked if it's possible to make the Capsule Endoscopy test. She said that this test costs 1000 Euro. If I want to make it for free I will have to wait. She has to exclude any other possibility before sending me for this one. Meanwhile she gave me Mebeverini hydrochloridum 200 mg twice for 2 weeks.

My current issues:
Mushy stool 3 times daily without antibiotics (6-8 times with antibiotics)
Abdominal pain or cramps that start from the right side and spread throughout. I feel better after each BM.
Pain under the ribs
Belly button pain (you might think Im crazy but I swear this is very strange pain). Feels like something is going through my belly button. Or something is pulling my belly button from inside.

Please any ideas/suggestions/disagreement will only help me to trace down the source of my pain.
Thank you
10-13-2012, 08:29 AM   #7
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Hey Alme,

Your results do sound confusing to say the least. It sounds like there is some minor inflammation going on. Interesting that you were dx with H=pylori. I wonder if that bacteria can cause inflammation throughout the GI tract. I also have H-pylori. I will not treat it with those antibiotics though. First I am allergic to most of them, and second they have a high failure of success rate( it is very hard to irradicate H-pylori).

There are some natural things than I have read can help. One is Pine nut oil, also there is something called mastic gum that is a resin from a tree and it has been shown to help irradicate the bacteria. I take manuka honey by wedderspoon. This is also suppose to help keep the h-pylori at bay. Did you have an ulcer due to the h-pylori??I know my GI doc said they only treat if there is an ulcer or active inflammation in the stomach. More than half the whole world is infected with H-pylori. Some have issues with it, and a lot of people do not.

I wish I had some words of wisdom for you, I am just as confused by your results as you are. But like I said, it seems like there is something irritating your gut. Did your GI doc say what she thought? I mean did she think it could be the H-pylori, maybe it can irritate more that just the stomach?
10-15-2012, 08:48 AM   #8
Join Date: Oct 2012
Location: Estonia
Interesting point lhurt. Unfortunately when I am in front of the doctor I always get so confused that I always forget to ask questions. This time I forgot to ask her if helicobacter could be the source of my inflammation. I have tried to search online if this two have any connection with each other, but no luck. These last 3 days I have been taking mebeverini hydrochloridum which has taken control of my pains. Well not 100% but still I feel much less, however I have been having heartburn symptoms. I am not sure if they are coming from the pill or gastritis.
10-20-2012, 07:04 AM   #9
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Hi. Have you had any imaging like ultrasound, CT or MRE? I wondering if the imaging would show something where you have the pain. My son also has some mild & chronic inflammation but is not diagnosed ... and like you when on antibiotics, he D increases a lot.
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
10-30-2012, 04:58 PM   #10
Join Date: Oct 2012
Location: Estonia
Hello again. Today I had a meeting with my doctor. Calpro tests were negative, no inflammation. Also blood test were normal. She diagnosed me with IBS (wait a second I thought Calpro positive is not possible in IBS!). I asked for a MRE just check about tumors, but I have to wait for over 3 months for that. Meanwhile I have been taking Mebeverin Hydrochloridum twice daily for abdominal pains. These last 10 days I have had 1-3 Bm which seem to be solid. Still some abdominal pain tho. About helicobacter we agreed to start the treatment again in few months, just to give my colon a rest.

I am not sure if I should be happy that I might have just IBS, or worried of possible not identified Crohns.

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