Hi, how can I get diagnosed? Been sick for awhile now...

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Richard Webb
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/26/2009 10:10 AM (GMT -7)   
I am 30 years old as of 8 days ago! Yay me. I have been having these "spells" every six months or so for two years. The first one, my wife and I just naturally thought it was food poisoning. Vomitting, diarrhea, and all that. Then it happened again, then the third time I had diarrhea that looked like nothing but blood. I was in the emergency room this time and stayed in the hospital for 3 days. I had never been hospitalised before in my life. They wanted to test for c-dif (Clostridium difficile ) but I was negative. At this point I met a Gastro Interologist and he told me if this happens again to come see him and he would give me a Colonoscopy. Well on Feb 8, 2009 it happened again. I went in to the ER because I could not stop the diarrhea. As soon as I got there I vomitted. They got me on an IV and some Zofran for the nausea. They prescribed me some Flagyl and Cipro, both anti-biotics and sent me home. I have not felt right since. I just had an Endoscopy done and was prescribed Prilosec for acid reflux. I never ger heartburn and am now curious if my Dr. really cares or sees this as a big deal. I feel like I want to run into the hospital or Dr's office and scream until somebody agrees to help figure out what is wrong with me. Has anyone out there had a hard time getting diagnosed/ helped/ treated??? I am almost certain, based on the symptoms, that I have CD. It is not like I want it, but I want to know what I have so I can start working towards being healthy. I have been sick the entire month of February and it is the 26 now. I am very tired and at my wits end....

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/26/2009 10:17 AM (GMT -7)   
i took me 10 months to get a final DX :S and a lot of visits to the doctor.. I would just like to say good luck ;) and stay strong..
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort


Richard Webb
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/26/2009 10:19 AM (GMT -7)   
Thank you :)

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/26/2009 10:23 AM (GMT -7)   
The average (according to one study) is 7 years from onset of symptoms to dx. I would suggest seeing about a pill camera.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/26/2009 10:25 AM (GMT -7)   
Hi Richard, Your story sounds somewhat like mine. I chalked mine up for so many years to my nerves and then to IBS. I got the "flu" so badly a few years back that I missed three weeks of work, was in the ER (I was sent home with the flu after getting an IV for hydration) and my family doc finally still said he thought I had a bad bug and the IBS was making it worse. It was several mo's later after that I had blood in my stool, which was very noticable and I went back to the doc. He checked me in office and said it wasn't hemmroids and FINALLY sent me to the GI. The process of actually getting DXed from that point was about three mo's. However, from the time I had what I now know was a horrid flare was a year and three mo's.

Do you have insurance? If so I would see if you have to have a referal to go to a different GI doc. If so ask your family doc. I can't believe they didn't do an colonosopy after the mass blood loss you seem to have had.

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Richard Webb
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/26/2009 10:29 AM (GMT -7)   
Yea, no colonoscopy after the blood. My next visit to the ER still produced nothing so I called a GI Doc myself. My ins does not call for a referral. The GI doc wanted to to an endoscopy. I thought that was pointless..... But he is the doc. Now my next appointment is at the end of March.

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/26/2009 10:35 AM (GMT -7)   
My GI says that an endoscopy can help him look at the beginning of the small bowel as well as the stomach and everything else down the throat area. I started with a CAT scan/barium enema (I will never have a baruim enema again...EVER!)....then a small bowel xray....then the colonosopy.

Just a suggestion....I would ask to be placed on a waiting list for appt. cancellations. It may get you in a bit sooner. In the meantime, what is he telling you to do with all your symptoms?

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Richard Webb
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/26/2009 10:42 AM (GMT -7)   
I am being told to watch what I eat. Thats about it :( What is wrong with the Berium enema?

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/26/2009 10:51 AM (GMT -7)   
The barium enema made me feel very sick and was extremely uncomfortable. When the radiology tech was finished he told me to go ahead to the dressing room, use the bathroom and dress--I didn't make it that far. I ended up rushing to the bathroom in the CAT scan room and sitting with the trash can at my mouth.

I have never had problems with IV's or drinking barium before, so I think it was just the combo and the stress of it all.

Do you use Imodium or probiotics?

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/26/2009 10:54 AM (GMT -7)   

Richard, unfortunately, Crohn's is one of those things that often takes a long time to diagnose and they rule out a lot of other things first.  I responded to your other thread and mentioned in there that it took them 8 yrs to diagnose me.  They usually start by thinking it's IBS, your gallbladder, possibly GYN related problems for women or even that it's all in your head.  They did every test they knew to do twice on me and removed by gallbladder before telling me to see another GI.  He did a capsule endoscopy and I was diagnosed within a few months of seeing him.

My boss's daughter had the same symptoms as me and I advised her on who to see and what to ask and she was diagnosed almost immediately!  Just learn as much as you can and be open with the doctor and hopefully you will get answers sooner than many of us did. You being knowledgable about it will definitely increase your changes of getting a proper diagnosis sooner than it would take otherwise.   


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/26/2009 10:56 AM (GMT -7)   
I would definetly ask for either a colonoscopy or a pill cam. These are the best tests to get a diagnosis. Be sure to ask them to take biopsies in the colonoscopy too. I was one of the lucky ones, I got diagnosed in 3 weeks.

Good luck,
Gail *Nanners*

PS: I agree with HM, refuse the Barium Enema, it is a horrid test and you can see everything they are looking for on the colonoscopy and at least with a colonoscopy you are sedated.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/26/2009 12:23 PM (GMT -7)   
It took me almost a year to get diagnosed, so don't be discouraged. Your symptoms seem pretty severe though, I'm really amazed that they didn't do a colonoscopy right off the bat with your symptoms. I, on the other hand, had no problems with the barium enema. Minimal discomfort. I was worried about not being able to make it to the bathroom while still holding all the barium inside of me, but I didn't even feel like I had to go when I stood up, miraculously. I have yet to have a colonoscopy done, mine is scheduled for March 10. The thought of it terrifies me, but from what people here say, it seems to be a relatively easy test.

How long do your "spells" last for, usually? It does sound like CD to me, too.

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 2/26/2009 1:02 PM (GMT -7)   
I'm amazed they didn't do a colonoscopy right off the bat, too. I think so many intestinal issues could be solved immediately if docs would do colonoscopies without assuming it's something LESS major first. I never in a MILLION years would have thought my large intestine was riddled with bloody ulcers...I never have blood in my stool - not even occult blood.

I repsonded to your other thread, too. I was diagnosed with 5 tests:

#1) Upper GI with Small Bowel Follow Thru. This test showed my Upper GI to be normal & my Small Bowel to be NARROW.

#2) Abdominal CT Scan. This test showed all of my organs to be doing fine with the exception of some inflammation in my large intestine.

#3) Blood work. I can't remember the name of this blood test but it is specific for Crohn's Disease markers. These markers came back as a 98.6% chance I had Crohn's.

#4) Upper Endoscopy. This test showed the top of my small intestine was fine as was my stomach & throat.

#5) Colonoscopy. This test showed what I said above...bloody ulcers scattered throughout the length of my large intestine with healthy colon inbetween.

With those 5 tests, along with all the other "extra" intestinal symptoms I was having (mouth sores, skin lesions, rapid weight loss, swollen ankles, back pain, etc.) I was easily diagnosed with Crohn's.
 
I had symptoms 2 years prior to the diagnosis, though, because I was misdiagnosed with IBS, which is quite typical.  And it's hard when you have "spells" of this stuff; because it's easy when you start to feel better/normal again to kind of forget you were sick and go without asking your doctors more questions.
 
And I often wonder if I'd had all those tests 2 years prior to when I did, if my disease would have been as progressed as it was.  If I'd had the colonoscopy in 2002 instead of 2004, would the ulcers have been there or not?
 
Sorry, but I just have to vent on this one thing: about whoever it was that told you to "watch what you eat".  I mean, come on Crohnies?!?!  Isn't that just typical???  It's true, some of us can't handle some types of food, but when my Crohn's isn't flaring and everything else is going ok, I can usually eat anything I want...not that I SHOULD, but if I want nachos, am hungry for nachos and my intestines are at a point that they can handle the nachos, by GOD I'm going to eat the nachos! tongue   I just get irritated with people who don't have intestinal problems who tell people who do to "watch what they eat"...as if FOOD is always the culprit.  IT'S NOT!
 
Ok...thanks for letting me vent. blush
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date

Post Edited (Kittikatt) : 2/26/2009 1:16:23 PM (GMT-7)


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/26/2009 1:09 PM (GMT -7)   
My suggestion to finding out what's wrong is to be persistant. If you don't feel comfortable with a doctor's diagnosis, try going to another doctor. There's no reason to not be satisfied or feel like a doctor is just brushing you off. There are good doctors out there that really care!

I hope things turn around soon for you, and you figure things out!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/26/2009 1:48 PM (GMT -7)   
Richard,
Welcome to Healing Well! If your screen name/display name is your legal name, I STRONGLY encourage you to edit it. First, you are discussing private health issues. Some chronic conditions can make it difficult for people to get insurance [both life and health]. Employers are known to "google" perspective employees names and your health issues are not to be factored into hiring matters.

To change you screen name:
Near the top of the page, on the left side, you will find a Navigation Bar containing CONTROL PANEL. Selesct that.
The next screen will give you options - select EDIT PROFILE.
On the profile screen, the third section is DISPLAY NAME. That is where you can change the name that we see here on the forum.

While it is not manadatory to make the change, it is something that we strongly encourage.
Ides

PS - It took me 25+ years to get diagnosed.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 2/26/2009 2:04 PM (GMT -7)   

my husband had similar symptoms and he had colitis.  whatever dr. you go to, he/she has to listen to you.  we are lucky in that we found a dr. that tested until he had an answer, there was no "wait and see."  As my mother always told me, the dr. doesn't feel your pain or discomfort it's easy for them to say wait it out.  But if I were you, I'd demand action, we have to be assertive when it comes to our health.

Good luck!


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 2/26/2009 2:35 PM (GMT -7)   
I'm sorry that you're having so much trouble with getting a diagnosis. I'd also suggest possibly switching doctor's if your current one still isn't doing a colonoscopy. It wasn't until I had one that I was finally diagnosed. I started having symptoms when I was at the end of high school and was not officially diagnosed until I graduated college. I started seeing GI doctor's out in LA during college and they brushed it off as IBS if anything and one even told me all I needed to do was to take Immodium to control my episodes. I ended up seeing another doctor there a year later when it hadn't gotten any better and he started taking me seriously. But I graduated and moved back home where I finally found a doctor who right away did blood work and scheduled a colonoscopy. I was his patient for less than 2 months (and I was out of the country for a month of this) before I finally got diagnosed - so pretty quick in my book.

So to reiterate, I think you should find a doctor that will do a colonoscopy for you. That would give you the best information to work with. Good luck and hope you start feeling better soon!
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