How many of you were misdiagnosed before Crohn's?

That must have been a terrible experience to go through.

Another question might be how many of us are still misdiagnosed. I bet there are some who have been diagnosed with Crohn’s and taking meds for it but really have Celiac or are gluten intolerant. Or some other kind of food or dairy allergy. Don’t say it doesn’t happen, there are too many people who benefit when they go on a gluten free diet or keep a food diary.

Oh how lucky that I feel!! I guess I lucked up with a surgeon whos sister in law has Crohn's. Huge Perirectal Abscess, followed by 2 Fistula surgeries.. then Pain and Diarrhea ... and he jumped all over it! Bunch of test and off to Dr GI Guy. I was one of the lucky ones to have a surgeon (Dr Hunky Dunky) who figured this out really fast! He said he saw his sister in law all over me. Once in a while someone does end up with a Doctor who knows what he is doing. Phewww thank God I got one! I tell people all the time that some folk go for years and thru multiple Doctors befor they figure out what in the World is going on with them. Thats why its so important to hound the life out of a Dr until they figure out the problem. Pro active with your own health.

I know that during the period before I was diagnosed there was talk of me having 'cyclic vomiting syndrome'. Personally I'm not convinced that CVS sufferers don't actually have some form of undiagnosed GD Crohn's, as it seems to be more of an umbrella term for acute chronic vomiting without an easily identifiable cause. Other than that, I recall that endometriosis was also posited due to the pain and also (rather stupidly) it was suggested that I might be suffering from recurrent gastroenteritis infections...extremely recurrent gastroenteritis.

I asked my mother to make an appointment with her doctor for me when I was 13, she had CD. He told me I was lactose intolerant. I made some dietary changes that got me through high school and college with out too much trouble. Then when I was 23 and had just had my first daughter all heck broke loose. I was in and out of walk in clinics and ER's. Every doctor told me I had Hemmis, because I was a new mother and that is what happens to new mothers! Finally I got an appointment with a well renowned proctologist in Boston who did laser surgery for hemmis. After my surgery, he found out that my mother had CD and you could actually see the light bulb go off in his head and I had my diagnosis. My hemmis were actually fissures and fistulas. Within a few weeks I had gotten so sick I needed to be in the hospital on so many different medications to bring the flare under control. I am just grateful that by then I had a diagnosis and they could treat me instead of insisting that it was just hemmis and lactose intolerance.

Hi

My first attempt at diagnosis was when I was 14 years old. The doc put something up me that cuased so much pain I almost passed out.  No diagnosis

When I was about 35 I had a bunch more tests and the DX was IBS. The perscription was eat more brocalli and stop drinking milk. WHen I was 51 and wanted a colonoscopy, the doc pressed on my gut and I went through the roof. After promethus 7, upper gi, colonoscopy, some other xray, and a bunch of bllod work, still no diagnosis but the doc kept pushing. The pill cam gave me the DX 35 years after I had symptons that were bad enough to get me to go to the doc.

I had trouble getting to the correct meds and diet as many do but now have both and feel better than I have in ages.

Dave

I can trace my first symptoms back to when I was 15. I can't remember much beyond then, but I know I was always getting an upset stomach. When I was 18 my then Dr noticed high levels of inflammation in my blood test. Both ESR and CRP were very high. She thought I had a kidney problem because I had blood in my urine but all tests came back clear. I didn't give it much thought after that, I just assumed I was ok. When I was 25 I got appendicitis that puzzled the Surgeons because I had no classic symptoms other than stomach pain. By the time they took my appendix out, it was completely normal again (was enlarged on ultrasound). My Dr now thinks it was the crohn's in my TI inflaming my appendix. For years after this I suffered with the symptoms, I went from Dr to Dr trying to get an answer only to be told I was lactose intolerant (cutting out dairy made no difference), then gluten intolerant (cutting out gluten didn't help), and then that I had gastro. Over and over! I moved to a new area and found a new Dr, and he referred me to a Rheumatologist for my back pain that had been going on since I was pregnant with my 3rd baby. Other Dr's had told me it was a slipped disk - but the Rheumatologist diagnosed me with arthritis. When the meds were working but my CRP wasn't going down, he contacted my Dr and told him that there was something else wrong with me. He thought it was Lupus and asked him to go through all my symptoms. My Dr decided to refer me to a GI, who when hearing my symptoms knew straight away I had crohn's - but he did confirm with tests. The amazing thing is that through all this, instead of having support from my family I have been told many times that I need help as it's all in my head. Now my eldest Daughter is suffering from chronic stomach pain, at first we thought it was appendicitis but now we know it's not I am insisting that she be checked for crohn's so she doesn't go through what I went through. It took me 23 yrs to be diagnosed.