Share Facebook
Crohn's Disease Forum » Your Story » Crohns maybe to be diagnosed


05-29-2012, 08:11 AM   #1
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Crohns maybe to be diagnosed

Hi everyone.

Just joined and wanted to share my story with you.

As I remember when I was a young teen I would sometimes get stomach cramps so strong that I could pass out. I never went to the doctor with it, because my parents told that it was probably because I worried too much. The cramps stopped to be so severe and I stopped thinking about it.

Last August I suddenly got severe stomach pains that would come and go. I was admitted to the hospital, doctors thinking that I had appendicitis. I was admitted for 3 days, they did a colonoscopi and and found nothing. I was then sent back home. My pain continued and I was then sent to af CT Scan which also was normal. Then I was sent to another colonoscopy which also was normal. It has to be said that both times they did not succeed to enter the terminal illeum.

They then sent me back home, told me that nothing had to be operated, I was admitted to the surgical department. They said I had to go home and see how it all went.

After another month of pains coming and going I went to my GP and she sent me to the GI. They sent me to an MR scan, which was also normal and did yet another colonoskopy. They succeeded to enter the Terminal Illeum and found a small red irritated patch of which they took a biopsy. This was also normal. Now I underwent af Capsule Endoskopy last wednesday and awaiting the results.

While this has gone on I have gotten worse pains. Using pain killers to take the top of the pain. I have had black stool. I go to the toilet 3-4 times a day. Daily pains. My joints are acting up. The middle joint of my third index finger. Second joint on my left thumb and the right hand wrist.

I have sent them god knows how many stool samples and blod samples all of which af been normal exept one, where the calprotectin was slightly elevated.

I am going insane, not knowing what is going on in my body. I am tired all the time and really frustrated that the doctors seem to dont really care about me. Or at least they don't think that there is anything wrong. I fear that they are going to tell me I have to learn to live with the pain. The doctor told me that the Capsule endoskopi was the last thing. And they don't know how to go on if it is not positive for crohns.

I got laringytis this spring, where my uvula swelled up. And the GP gave me prednisolon for the swelling. It helped. I had three days without any pain and got back my energy. But the doctors wont give me prednisolon again for an undiagnosed condition.

Have any of you tried something similar and do you have any suggestions. I myself believe that I have Crohns but it is hard to convince the doctors of the same.

Hope that someone will answer
05-29-2012, 08:59 AM   #2
anyone
 
Join Date: Apr 2012
Location: Oregon
I can relate to you. I'm waiting for my pill cam results. I should have them today. I know it is frustrating when you don't feel well and the tests results come back negative. You said that they have checked your blood but have you had your inflammation markers checked in your blood? For example, ESR and CRP. Biopsy results are the gold standard for diagnosing Chron's. Without that, alot of doctors are going to be hesitant to make a diagnosis. But there are other tests that they can use in conjunction with your symptoms to build a case for the diagnosis.

I'm sorry that you are suffering so much and I hope that you get answers soon. You are doing the right thing by going to the doctor and seeking advice. You don't feel good and that should not be disregarded. Unfortunately for us these things can be very difficult to pinpoint. You should also check out the Undiagnosed section of this website.
05-29-2012, 09:12 AM   #3
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
I can relate to you. I'm waiting for my pill cam results. I should have them today. I know it is frustrating when you don't feel well and the tests results come back negative. You said that they have checked your blood but have you had your inflammation markers checked in your blood? For example, ESR and CRP. Biopsy results are the gold standard for diagnosing Chron's. Without that, alot of doctors are going to be hesitant to make a diagnosis. But there are other tests that they can use in conjunction with your symptoms to build a case for the diagnosis.

I'm sorry that you are suffering so much and I hope that you get answers soon. You are doing the right thing by going to the doctor and seeking advice. You don't feel good and that should not be disregarded. Unfortunately for us these things can be very difficult to pinpoint. You should also check out the Undiagnosed section of this website.
No I dont thing that they have found inflammation. The macroscopic and microscopic results were normal. And the blood I do not know but they have told me, that there is no indication of inflammation.

I am at a point where I wish they would cut me open at look at my intestestines through the stomach if they cannot see trough their cams and such.
05-29-2012, 09:57 AM   #4
anyone
 
Join Date: Apr 2012
Location: Oregon
I would recommend that you get a copy of all the test results that have been performed on you. Sometimes doctor's make mistakes and do not test the right things. Other times, they might think something is insignificant that might be significant to you or your knowledge of your illness. My doctor did not tell me that I had fluid in my abdominal cavity after my MRI. I think this is important and I'm glad I read the test results myself.
05-29-2012, 08:07 PM   #5
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome I'm so sorry to hear you've been through so much

You mentioned that you have black stools. Did they do any tests to see if you have blood in your stool?

I wish you all the best!
__________________
It's good to be back
05-29-2012, 11:14 PM   #6
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I am not sure there really is a "gold standard" in getting a diagnosis for Crohns. Many people have negative biopsies and negative blood work. Sometimes its just an elimination of everything else or finally treating the patient and not the lab results in the chart. I just dont want the Dr to tell you your Bx was negative and upset you any further. A negative Bx could still mean Crohns.

If you do not get the answers and help you need keep fighting for it! You know your body and you know when something is wrong!!

Good luck- I am hoping you get the help and relief you deserve!!

Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-30-2012, 04:05 AM   #7
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Thanks everyone for your support.

I think that i would be a good idea to see if I could get a copy of the tests that they have performed on me. Atleast to read them myself.

As for the test of blood in my stool, they have not to my knowledge made any test of it. But they have accepted that there is blood in my stool, when I tell them that I think there is blood in it.

I have tried for a month to keep af journal of how I was doing. I gave them the journal at the hospital when I went to swallow the pill cam. Just so that they can read for themselves how I feel during af normal month. I know that they have not been taking me seriously all the time. I recall a conversation with one of the GI's who said, after I got in early because I got worse, that now they could work a little faster, now that the Calprotectine was slightly elevated. :S At that point I had been having troubles the last 6 months. Just made me wonder if they think I am a hypocondriac og have Munchhausen.

Well I should get the results of the pill cam on wednesday next week so I am looking forward. I do not dare to believe they will diagnose me this time. I have been disappointed too many times.

But yes I will keep on fighting. I know something is wrong in my stomach. If it isn't Crohns it is something else.

Thanks for your support
05-30-2012, 09:37 AM   #8
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Hypochondriacs and people with Munchausen Syndrome do not have blood in their stool and all the symptoms that you do. You are neither, don't let your mind wonder about that.

The reason I asked if they have confirmed blood in your stool is the color. If it's a dark black then the source of the bleeding is very likely much higher in your intestinal tract than a colonoscopy could see. I'm glad you had the capsule endoscopy. I think that will tell a lot. Please let us know when you get those results!
05-30-2012, 02:20 PM   #9
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Hypochondriacs and people with Munchausen Syndrome do not have blood in their stool and all the symptoms that you do. You are neither, don't let your mind wonder about that.

The reason I asked if they have confirmed blood in your stool is the color. If it's a dark black then the source of the bleeding is very likely much higher in your intestinal tract than a colonoscopy could see. I'm glad you had the capsule endoscopy. I think that will tell a lot. Please let us know when you get those results!
You bet I will let you know about the results. I am hoping that the endoscopy will give a positive result.
06-06-2012, 01:30 AM   #10
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Oh I am so anxcious for the doctors appointment for today. I dare not hope that they have found the reason for my stomach issues. I have been disappointed too many times for that. But I must admit that some part of me wishes that they have, so that I can get some treatment instead of painkillers.

Wish me luck please
06-06-2012, 03:12 AM   #11
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Best of luck!
06-06-2012, 03:18 AM   #12
shellbell0955
New Member
 
Join Date: Jun 2012
Location: Kansas
I had symptoms my whole life with stomach pains. i was always told i would "grow out of". when i was twenty and it got worse i insisted they look into it. Had a colonoscopy on my 21st birthday which turned up nothing. Had the capsule endoscopy and they found the crohns in my small intestine. It was a relief and a worry to know what i was dealing with. Your case sounds very similar to mine. hope you get the results and can start to get things straightened out!
06-06-2012, 08:52 AM   #13
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Well saw the doctor today, pill cam endoscopy was normal. Sų the doctor suggests that I take anti depressants to block the brain from perceiving some of the pain signals.

So it is all in my head :S
06-06-2012, 11:31 AM   #14
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Well, I hope you feel better soon! We're still here for you if you need us. Best of luck to you.
06-06-2012, 12:27 PM   #15
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Actually i dont believe the doctor, but it is hard to argue with a trained doctor.
06-06-2012, 12:43 PM   #16
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Then get a second opinion
06-06-2012, 12:58 PM   #17
ThatsWhatSheSaid
Senior Member
 
ThatsWhatSheSaid's Avatar
 
Join Date: May 2012
Location: Wisconsin

My Support Groups:
You should get a second opinion. There has to be a missing variable for you to be having such symptoms, even if the answer is not crohns, you know? That is incomprehensibly frustrating. I'm sorry. I am looking at going somewhere for a full work-up myself. I love my GI and there is no doubt in the diagnosis of crohns for me, but I have had issues lately where the symptoms seem to be more severe than what the doctor saw when he did an EGD and colonoscopy last week. I understand how you feel.
10-06-2012, 01:06 AM   #18
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Update:

I did not take the anti depressants, that the GI's suggested I took. I saw the list of side effects and did not dare to take them. I talked with the GI about it and they suggested that we waited three months and then I should make a new stool test.

Then last week I saw a show about gluten allergy. The doctor there mentioned some of the same symptoms that I experience. So I contacted the hospital to hear if I had been tested for it. I mailed them first, when they did not mail back I rang them. The GI in the phone told me I had not been tested. Then later the same day I got an answer for the mail. Stating that I had been tested i february.

It's very frustrating! I have nowhere else to go. How can I trust them, when they are not in contron of the paperwork?

I had a long period of almost no symptoms, and when I got a slight stomach cramp I just ignored it. That worked for almost 4 months, but lately the pain got worse.
Last night it felt like getting kicked in the gut.

I dont want to bother the hospital anymore. I know what they do. They take me in, let me stay a day and then send me back home. Maybe sending me for more tests later.
10-06-2012, 12:55 PM   #19
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I'm sorry to hear you still don't have any answers And I can't imagine how frustrating it is to have disorganized providers.

*hugs*
11-15-2012, 03:11 AM   #20
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Update update.

Well i'm back. Still not good news in my opinion. Went to the hospital again yesterday after having made a new stool test. Everything is still normal. So their diagnosis is a severe degree of Colon Irritable, that they think maybe can be helped with amitriptylin. And if that does not help, there is nothing to be done. But I can rest assured that they are researching for treatments.

I protested the diagnosis. I am not aware that colon irritable can give blood in and on stool. The reply was, that they don't think a colonoscopy would reveal anything again.

So I decided to ask for a second opinion. The doctor would look into it to see if I would be eligable for a second opinion. But it was not for sure now that I had been trough all those tests. 3xColonoscopy, 10xstool tests, MR, Ultrasound.

If they cannot help with a second opinion or anything else, then I would consider reflexology or acupuncture before I take those anti depressants.
11-15-2012, 08:04 PM   #21
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Danny was given this anti-depessant too. Our GI explained that it may relax nerves in an over-active digestive tract. The dose was much smaller than it would be for depression andit was never implied that his disease was in his head (at least by this GI). the medication did not help him at all and only made him more tired, so GI said to stop it. Good luck!! I understand the frustration.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
11-15-2012, 10:49 PM   #22
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
We tried them for DS as well. Again not for depression.
In some with Ibs the mast cells are a little over active and since the send pain signals to the brain the antidepressants stop those signals so no more pain.
They did nothing in his case .
Wishing you the best
__________________
DS - -Crohn's -Stelara -mtx-IVIG
11-15-2012, 11:25 PM   #23
cyborg1939
 
Join Date: Nov 2012
Location: California
Nanotech: you are LUCKY if you do not have Crohn's or UC !!! Very fortunate. Why would you want them to find such horrible disease? IF you have IBS ( and not IBD) you can work on this. Perhaps the " blood" - true Melena?- you saw was a " red herring" ( should not be present in IBS alone). Have you had PROMETHEUS ( newest fourth generation) blood test? If not ask for it.
11-16-2012, 06:46 AM   #24
Nanotech
 
Join Date: May 2012
Location: Solbjerg, Denmark
Nanotech: you are LUCKY if you do not have Crohn's or UC !!! Very fortunate. Why would you want them to find such horrible disease? IF you have IBS ( and not IBD) you can work on this. Perhaps the " blood" - true Melena?- you saw was a " red herring" ( should not be present in IBS alone). Have you had PROMETHEUS ( newest fourth generation) blood test? If not ask for it.
Thx for your support cyborg!

I dont wish for them to find an IBD, but I wish that they could explain the bleeding instead of just thinking that I am a hypochodriac. Surely if they explain the bleeding I am fortunate just to have stomach aches and cramps that are impossible to explain.

I don't know if they did a prometheus test. But I will look into it.
11-16-2012, 09:36 AM   #25
StaceyQ
Senior Member
 
StaceyQ's Avatar
 
Join Date: Jul 2011
Location: Petersfiel, United Kingdom
i understand you when you say doctors think your mnaking it up, afteri had my first child, i was vomiting, dirreohea, stomach pains and they told me it was my body adjusting after going through labour, never had i heard this before.

I stopped eating as was makin me sick went down to 6 stone and they still didnt think anything was wrong, they took blood test after blood test as if just to shut me up. anyway 8 months later they finally decided to send me to the hospital for a flexi and there it was crohns disese.

I hoep you get the answers and the pain subsides. It horrible when you feel like noone is listening and they dont believe you. I am on amitriptyline and it does help. Give it ago you never know it may work.
Reply

Crohn's Disease Forum » Your Story » Crohns maybe to be diagnosed
Thread Tools


All times are GMT -5. The time now is 04:28 AM.
Copyright 2006-2017 Crohnsforum.com