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Undiagnosed - would like some opinions please!

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Crohn's Disease
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Posted 2/17/2008 10:39 PM (GMT 0)

I first went to a GI doctor last year with diarrhea. I would have diarrhea for a week or so, then be fine, then another week of diarrhea, then fine, etc. The doctor said it was most likely IBS. Then, the diarrhea starting becoming more frequent, and I was going anywhere between 5-10 times a day every day and was occaisionally seeing blood in the stool. I also started having a crampy pain in my abdomen, which felt different than menstrual cramps. I had my stool tested and it came back negative for any kind of virus or parasite. I had a sigmoidoscopy, which was normal, and the doctor ruled out UC and said it may be Crohn's. I then had a colonoscopy, which was normal and the biopsies from that came back negative for Crohn's.

The doctor has tried me on many different medications, including suppositories, oral mesalamine, and metronidazole, all of which have done nothing to help me. Recently I have also been having a low grade fever almost every day, and along with the adominal cramping which comes and goes, I have a pain to the right of my belly button which is pretty much always there. I am now waiting to get a capsule study to hopefully get a diagnosis, but being undiagnosed for so long has been very difficult for me.

Can anyone please give me some opinons on what they think this is?

Thanks!

Nicole

Also, just to add a little more info, occaisionally I wake up 1-2 times at night with a bowel movement and pain. Nothing was seen on the sigmoidoscopy or colonoscopy to explain the blood in the stool (no hemorrhoids or anything). Sometimes my stool is kind of dark red or almost black looking.

Post Edited (MysteryGirl) : 2/17/2008 4:04:37 PM (GMT-7)

Posted 2/17/2008 11:16 PM (GMT 0)
With nighttime bms, fever, pain in the right lower quadrant and your history it certainly could be crohn's in the terminal ileum (where it connects to the large bowel). Docs wouldn't be able to visualize this because of the intact ileo-cecal valve so it is great that you are getting a capsule endoscopy done. IT is the best way to see what is going on in the TI.

Sometimes the road to diagnosis can be very frustrating. Have you been on prednisone?
Posted 2/18/2008 12:13 AM (GMT 0)

I agree with Belleenstein, the diagnosis may take a long time but you are having the appropriate tests.  I hope the capsule study give you your answer.
Wondering how your CBC lab results were?

Dark blood may be more indicative. of gastritis or peptic ulceration
Take care.
Kitt

Posted 2/18/2008 12:18 AM (GMT 0)
I have never been on prednisone.

The last time I had a CBC was back when the diarrhea was occaisional, and all my levels were normal. I had more bloodwork done by my GI to rule out Celiac, which it did, and my sed rate was also checked, which was in the high 20s.
Posted 2/18/2008 12:35 AM (GMT 0)
Have you also have weight lose. With Crohn's in the beginning there is weight lose, Vomitting, lose of appite, blood in the stool and alot of cramping pain.
Posted 2/18/2008 3:32 AM (GMT 0)
Not necessarily teddy. It depends where the crohn's is and how widespread. If it is limited to one place, say the terminal ileum, you wouldn't see blood (although there might be occult blood in the stool. Weight loss, nausea and loss of appetite are common, but by no means always present at the onset of crohns. In fact, about the only thing you can say with certainty is that there is no one symptom that everyone has, not even diarrhea. It all depends on where it hits and how hard it hits what symptoms you will have.

Mystery girl, I asked about prednisone because you said your medications weren't working. Sometimes a course of prednisone can knock down symptoms. it is the one medication that nearly always seems to lessen symptoms associated with crohn's inflammation. The problem is that it is nasty stuff, and not something to stay on for any length of time. It would be interesting to see whether a course of steroids lessened your symptoms. Once you've had the pill cam you and your medical team will be in a much better position to develop a management plan for treating you.
Posted 2/18/2008 12:38 PM (GMT 0)

Hi Nicole,

Boy can I relate to a lot of what you are going through!  I also had a colonoscopy done the end of November and my biopsies came back negative for Crohn's--my blood work is normal as well.  The GI did find ulcers in my TI but those also came back as negative for Crohn's.

My Internist believes that I DO have Crohn's although nothing has proven it yet.  I have heard both from her, from a doctor I work with, and from members on this forum that diagnosing Crohn's can take a while and you can have it and have the biopsies, blood work, come back as normal. 

I really hope you find something that helps you feel better soon!  Please keep us updated and let us know how the small capsule goes!

Take care,

Indigo

Posted 2/18/2008 4:36 PM (GMT 0)
I'm one that never had bleeding or weight lose and the only way they discovered I had Crohn's was when I developed a fistula.  I might have been misdiagnosed for 20+ years because I didn't have the normal symptoms.  Doctors kept thinking it was IBS. 
Posted 2/19/2008 2:55 AM (GMT 0)

Hi Mystery Girl,

I also am still officially undiagnosed although I have had good response from pentasa. The gi doctor is basing the diagnosis on that plus the fact that I have some of the other extraintestinal symptoms i.e. mouth ulcers, joint pain. 

I would guess that I've had this all my adult life but the pain didn't start until 1997 and I didn't have any gi symptoms for about 6 years.  Normal colonoscopies, normal small bowel follow through, normal CT Scan, normal biopsies

Your symptoms are much more severe than mine so I hope you get an answer soon. Too bad the mesalamine didn't help you. Did you try pentasa or asacol?  I tried asacol first and it only helped about 50% so my gi doctor suggested I try pentasa.  If the disease is in your small intestine asacol won't help, unless its in the TI area because some asacol does get up in there. That is probably what happened with me.  So if you haven't tried pentasa I would recommend you ask about that.  

Posted 2/19/2008 3:31 AM (GMT 0)
Thank you all so much for the opinions.

To answer a few questions, I have had a bit of weight loss but not much. about 10 pounds in the past few months.

I did try Asacol but only for a short while because it gave me severe headaches. I didn't get any help from it, but maybe I wasn't on it long enough for it to kick in.

Hopefully the capsule study will be successful, all I really want is a diagnosis.

 

Posted 2/19/2008 5:52 AM (GMT 0)

Hello,

I just found this forum and registered because my son is also a mystery case of Crohns.  He is only 7 years old, and looking back I think his symptoms started when he was 6.  Has anyone else heard of this in such a young age?

  He was hospitalized in Nov after his 1st episode of bloody diarrhea. This is when we first were told he probably has Crohns, and received 1 unit of blood for a very low blood count. Colonoscopy showed "Colitis", but no clear indication of Crohns.A huge series of other tests cannot point to Crohns, but the Dr tells us he "looks" like he has it.

He just finished his prednisone(was on for 3 months) and has some blood in every stool (3-4x day)now for the last month. I taught him how to swallow pills, now the Dr wants us to give him Asacol.  This is so difficult since we do not know what he has. He is off all milk products, peanuts and eggs (had some delayed allergic reaction to these) and on Glutamine..but still blood in every stool.  It is scary, and I feel lost.  Now he is having bad headaches from the prednisone taper, and the poor little guy gained 20 lbs!!!

Anyone else with a little one suffering from this?  What will his life look like later on with starting this disease so young?  Thanks to this site for the supportive folks like you helping one another out !!

Posted 2/19/2008 6:33 AM (GMT 0)
Hi Mystery,
I've been a member of these forums for nearly three years; I am a moderator of the IBS forum, a three-year sufferer of severe GI problems, and a first-year medical student. I am one of the (lucky? unlucky?) few that has never gotten a definitive diagnosis because I've had extremely varied test results and variable symptoms (and a very troublesome international traveling history, parasites included, which just complicates everything ridiculously). The way I explain it to people is this: I go to the bathroom a lot. Sometimes a LOT, like 20 times a day. Sometimes I have to go to the hospital, sometimes I'm scared, and sometimes doctors look at me with a pitied expression that I absolutely hate, and sometimes the doctors ask ME what they think THEY should do, and there's nothing scarier than that!

I tell you in pure honesty that I've had moments where I've been ready to give up on medicine altogether, as a patient AND as a student of the craft, sometimes at the same time.

I just want to tell you that I know you can hang in there. It might take some time to figure things out. It may take much longer than you ever dreamed it would, and maybe you won't get a good answer - but you will adjust. I don't know if it matters if you have a diagnosis or not. Sometimes I think it would be easier to have one, but it would be harder too. It just depends on your perspective. Any way you look at it, we'll be here for you!
Posted 2/19/2008 6:39 AM (GMT 0)
RileysMomRN-

You may want to try dragonpack.com it is an IBD support for parents who have children with IBD:

http://www.dragonpack.com/ibdsupport

Nicole,

I have never tested positive for Crohn's but the doctor's say I have it. I have been treated for it for the past 3 years and it is now in remission and I have been off all drugs since September.

Erica
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