Diagnosis? CROHN'S???? IBS??? LOST 50 LBS....

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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/22/2008 4:03 PM (GMT -7)   
Well, I had my appt with my pcp (who is a PA) this morning. She didn't even mention CD like my osteo did. She was saying that IBS could cause the bloating, cramping, nausea & burping that I have going on now. I was surprised that she didn't mention CD. I can't believe you could lose 50 lbs. with IBS.... She said to stay on the Azulfidine. Water & Ensure seems like what she recommends for my diet at the moment. She is referring me to a GI (finally). She sent the referral high priority, so hopefully I won't have to wait too long. She spent a lot of time with me discussing my symptoms, a couple hours. Then I was off to the lab for thyroid tests (again-came back negative in Aug), CBC, ESR, metabolic panel & celiac blood test. I am so curious to see how they come out.

I am just wondering how everyone has received their diagnosis. I already had a colonoscopy & it came back with inflammation, ulcers & colitis (NOT UC, I think it actually said "Focal Active Colitis"). I just don't understand why it is taking so long for them to figure out what my problem is. I am withering away & feel so weak & horrid. Any info would be greatly appreciated.

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 1/22/2008 4:35 PM (GMT -7)   

Hi Hukle,

This sounds a lot like my situation right now!  I have had Episcleritis of the eye for months now--since June.  It was in both eyes, cleared up about a month ago, and is back in one of eyes.  Anyhow I went to see an Internist after going to the eye doctor for months and she said Crohn's causes it in many cases.  Anyhow I have been through the blood tests--all normal, had upper endoscopy and colonoscopy and both came back showing inflammation in several places, but the biopsies could not link it to either Crohn's or UC.  My GI, based on the letter she sent out after my procedures, does not believe I have IBD but my internist does and believes I am in the early stages of it.  She says that it can take a while for Crohn's to positively show up in biopsies, and I had another patient on this forum tell me that they heard it takes on average about 5 years to diagnose Crohn's.  In addition to the eye issue, I have had other symptoms as well--rectal/anal bleeding, sometimes so bad I was not sure if it was really my period or not (turns out it wasn't), I get the mouth sores, apthous ulcers or whatever they are, I will get awful diarrhea and stomach pain.   Sometimes it hurts to eat and I feel better--but very tired--if I don't eat. 

I really hope they are able to help you out soon!  It is so frustrating to know something is wrong and not have anyone be able to diagnose it.  I would not wish Crohn's or UC on anyone!  At the same time, I would like to know what is going with my own body, even if it meant one of the above.

Best of luck to you and keep us updated!

 


stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 1/22/2008 4:55 PM (GMT -7)   

hukleberrie, I am so sorry that you have not received a definitive dx yet. I have IBS and I have never lost weight with it.  I have had it for years.  I did have a colonoscopy and she found nothing else.
Losing 50 lbs seems to be way out of line for IBS.  Even the worse case scenario I have ever heard of did not have that kind of weight loss.  I may be wrong and  I am not a physician.
Someone needs to get you a diagnosis so you can get on the right medication.

I would assume they have looked at everything that would cause a large unexplained weight loss?  I feel so bad you are chasing around and coming home without the answers.

Any chance you can get another opinion.  You have one of each. redface Praying for you. Gentle Hugs


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/22/2008 6:18 PM (GMT -7)   
It's funny because the osteo automatically said CD. Some type of IBD. But my pcp still has me chasing circles. They kept having me believe I had cancer. Never mentioned such large unintentional weight loss could be due to CD. After my osteo said something to that effect, I started looking into it & it really seems like my problem. I have had a canker sore problem for years, I don't know if that is the same as a mouth ulcer. I also keep having fluid in my left ear for some reason. They clear it up & then it comes back. Constant popping & noises in that ear, too. I also found out from the osteo that I have very hypermobile joints, and I saw a ruematologist years ago who said I would have arthritis young. I have been seeing the osteo for OMT for 6 months for rib pain (in the back). Even the physical therapists I was seeing were asking me if I was having GI issues (although at that time, I didn't really think I did.) because of the location of the pain. They said that can sometimes point to GI issues when the pain is where mine is. I am now wondering if all of this is related to CD. I have also had rectal bleeding (not as much lately) & also have a hard time digesting just about everything. I had to change pain pills due to them not digesting. I have only had diarrhea lately, I used to be a constipated person who only went twice a week, then I started going 2-4 times a day, but it was so much more comfortable, I wasn't complaining about it! Maybe without pain meds I would have the big D.... Then last week the diarrhea started, then I got dehydrated. Then urgent care put me on prednisone & now I'm stopped up! I also have a lot of mucus. (Ick!) The pain with eating is new, within the last month or so.

The GI I am getting referred to is my mom's GI & she already told my mom she was thinking (even though she hasn't seen me yet) it was CD, so I feel like I am in good hands, and maybe I won't have to wait 5 years for a DX! I will let you all know when I know more...

Thank you for posting. I appreciate the input because I feel like I am going crazy. I was really surprised my pcp was mentioning IBS....

vadreamer1
Regular Member


Date Joined Aug 2006
Total Posts : 196
   Posted 1/22/2008 6:44 PM (GMT -7)   
Has your doctor done blood, stool samples and sent you for a colonoscopy? I'd also add a upper gi w/ a small bowel series to that list. I had all of those tests when initially diagnosed. Also - my primary care physician was not comfortable enough to treat me and referred me to a GI. Just my two cents. Good Luck - sorry you're not doing well.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/22/2008 7:57 PM (GMT -7)   
I have had blood tests, back in August & she just did more today. I did have my colonoscopy & they found ulcers & inflammation, pretty much everywhere, I guess. I had the hemoccult test, but no stool samples. I had the EGD done no small bowel series, not really sure what that is. I hope the GI looks into it further, my pcp says I have had like every test under the sun, but I was sure there had to be something missing.... Any other tests I need?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/22/2008 8:06 PM (GMT -7)   
a small bowel follow thru (drink this barium solution and get a couple xrays taken) is another test that is something to think about, pill cam?, SED rate?
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
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gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 1/22/2008 8:07 PM (GMT -7)   
Ulcers and infalmmation does not sound like IBS to me! Did any of your doctors get a blood test called the Serology 7? It is sent to Prometheus labs, and detects antibodies for Crohn's and colitis. Go to Prometheuslabs.com to learn more about it. My neice had horrible IBS...she weighs about 90 lbs. and I think it's Crohn's but she also has no positive diagnosis. Good luck.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 1/22/2008 8:21 PM (GMT -7)   
How about upper endoscopy. Have they done that yet? Sounds a lot like my sx and the dr told me last week that my stomach wasn't empty and maybe I have gastroparesis. So they  couldn't do an EUS, and have rescheduled for 3 wks. Dr told me to take reglan 1/2 hr before each meal and then only gave me a scrip for twice a day and 2o pills. I have all those sx except for weight loss, but I eat no matter what, hungry or not, nausea or pain. My bowels have been very erratic, sometimes Big D and then more solid "ribbons". Think I have a stricture though, and am on pred.
DIANNE
Humira, pred and entocort 1/08
3 small bowel resections, 1 for perforation, 2 for strictures 
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/23/2008 4:04 AM (GMT -7)   
I did NOT have the Serology 7. Or a small bowel follow thru. I did have an upper endoscopy (EGD). What's an EUS? Biopsies from the EGD came back with mild chronic gastritis in my stomach. I also had bile in my stomach that I thought was weird but my surgeon didn't worry about it, so who knows about that.

What is a SED rate?

I know that because I don't have insurance, I probably have not had all the tests I need. I hope I can get to the GI soon. My osteo says that my body is metabolizing my muscle & I have no fat on my body. I feel strange & out of it much of the time & am starting to worry... Everyone has wanted me to go to the ER, when I mentioned that to the nurse at my pcp's office, she said they would just tell me to see my family doc. So I guess I just play the waiting game until I can get into the GI. I am tired of water & ensure....

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/23/2008 4:08 AM (GMT -7)   
BTW, I have had a CT scan & MRI, but there was no mention of my bowels.... Wouldn't the MRI or CT scan would show something if there were bowel problems....?

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/23/2008 5:10 AM (GMT -7)   
I hope you feel better soon. Have you actually seen a GI doctor,sounds to me like you definately need a specialist.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/23/2008 5:17 AM (GMT -7)   
No, I haven't yet. I saw a general surgeon for the colonoscopy/EGD. No GI. I hope I get in soon.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/23/2008 7:23 AM (GMT -7)   
BTW, I have had TMJ & SIJ problems in the past... Is this something people with CD experience?

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/23/2008 7:47 AM (GMT -7)   
I just got a call from my PCP. I see the GI Feb. 13. That's the earliest they could get me in. Haven't heard about the labs or what the surgeon thought. Will post more when I know more. Ugh. 3 weeks. I have been losing about a pound a day. By then I could be under 100 lbs! And I'm 5' 7"!!
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