3yrs waiting on diagnosis still?

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Regular Member

Date Joined Apr 2009
Total Posts : 47
   Posted 4/28/2009 8:51 AM (GMT -7)   
Hey Everyone,
      I have suffered for 3 yrs with stomach and bowel issues, more stomach then anything, I have had tons of test, past inflammation and petichia in the stomach with minute flecks of bleeding, unknown sorce. Anyways, I've pretty much researched for my self, (work for a DR.)and I do have someone doing more test for Chron's. I didn't start getting some what relief until I researched chrons the last 3 weeks and everything started makeing sense. Im following the diets and on predinose recently, and have notice a big change in my stomach. I thought at one point I was a gonner, dropped 2o pds in month at 5"2. Now I think I now know why I thought I was going to die after a bowl of salad, or any beer ect, Right now im living on chicken and pototaoes and bananas. No caffiene.
Anyways, just a quick bite for my first time here. You all have gave me so much info on this disease, even things I've let the dr.s be "q"ed into.  Thank You!!!

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 4/28/2009 9:19 AM (GMT -7)   
Welcome to Healing Well, Nebraskagirl! I'm sorry that you have been on the diagnostic roller coaster for so long. I took a 20+ year ride on it and it wasn't fun.

Your stomach issues are similar to what I experienced prior to diagnosis. I had lots of inflammation in the stomach, tiny spots in several areas where the stomach had bled. No ulcers, no evidence of H.pylori or other infectious agents. When I ate anything coarse I paid for it with pain that doubled me over. Fast forward a few months after that upper endoscopy and I got a new GI. When he diagnosed me with Crohn's, I asked about my stomach. He said my stomach issues were caused by a type of "backwash" of the Crohn's into the stomach. Many years later and I still cannot get off the Prevacid [which by the way really helped].
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.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 4/28/2009 10:26 AM (GMT -7)   
Nebraskagirl, welcome!  Not to discourage you, but it took 8 years to diagnose mine and I had test after test until they ran out of options and then we started over at the beginning again and redid everything.  Hopefully, you will get an answer soon, but know that you are not alone in it taking forever to diagnose.  And I used to end up at the ER anytime I had iceberg lettuce.  I've gone through flares where I could only eat one or two things and lost a lot of weight (dr. threatened to hospital and tube feed me) but, when things get better, you will be able to eat a lot of stuff that you can't eat now.     

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

Regular Member

Date Joined Apr 2009
Total Posts : 47
   Posted 4/28/2009 12:19 PM (GMT -7)   
Hey All!
   I actually got a call today from my dr. that did some bloodtest that show if your results regard to more crohns or UC, and mine came back for Chrons! Im so happy and want to cry at the same time. Im a single mom of three teenagers, and know one around me could understand what I went through on a daily basis and had my life has completely changed. There were times I should have been in the hosp. I took 2 month medical leave last year, I lived on broth, crackers and water for a month. Now my Dr. is going to consult with others to find out best route from here, and honestly after three years, I researched and didnt quit until I found people who were going through my same problems and it was people with Crohns, I had to fight for myself even though I work in the medical field! Also, I have 4 direct family members with auto-immune disease, including my mother who had "gullian Barre syndrome" so Crohns made me more suspicious. And then I saw a girl on this forum who her good foods and bad foods and reactions were identical to mine.
Thank God For things like these forums! It has changed my life. I'll let you all know more soon. Thank you for listening

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/28/2009 1:38 PM (GMT -7)   
Welcome Nebraskagirl!!! I luckily was diagnosed in 3 weeks, poor you to have to suffer so long. But many on this board were much like yourself and suffered for years. One test you might want to request is the pillcam. With this test you swallow a pill camera, and wear a device that records the pictures as it goes thru your system. Many people who have had problems getting diagnosed have finally had success in getting diagnosed with this test.

I like Ides, also have to take Prilosec because of the backwash I suffer with my Crohns. Sounds like the Prednisone is really helping you. Hopefully they will be able to get you some kind of treatment so you can get feeling better.

Again welcome to our forum, I have learned so much being part of this board and know you will too. Look forward to hearing how your future doctor appts go.

Gail *Nanners*
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"*

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 4/28/2009 2:32 PM (GMT -7)   
Hi Nebraska girl welcome to the crohn's club sorry to here it took forever to get diagnosed it took me 2 years but it feels better now knowing that there is some thing wrong with you instead of all those doc's telling you there is nothing wrong with you.Jenn

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

Regular Member

Date Joined Apr 2009
Total Posts : 384
   Posted 4/28/2009 2:52 PM (GMT -7)   
don't eat potatoes, read breaking the vicious cycle and cure yourself with diet!

Regular Member

Date Joined Oct 2004
Total Posts : 29
   Posted 4/30/2009 6:22 AM (GMT -7)   
Nebraskagirl, where are you at? I'm in Omaha.

Regular Member

Date Joined Apr 2009
Total Posts : 47
   Posted 4/30/2009 9:30 AM (GMT -7)   
 I actually live in North Carolina, my mother and her family are orginally from here, but it was one of those Airforce things. So I was born in Omaha and raised on a farm in Arlington, near Fremont. All my kids were born in Fremont. We just moved to N.C. were all the family came back too. But I am a Cornhusker 4 Ever!!! 
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