Is it possible to be misdiagnosed with Crohn's Disease?

[Jennifer_E]

Five and a half years ago, I started having horrible stomach pains. They were sharp and stabbing and got progressively worse, to the point where I couldn't eat or sleep. I finally went to the ER where they did scans and thought my appendix had burst. They planned an emergency appendectomy, but when they got in there they realized it was not my appendix, but there was a large mass of cells covering my appendix, which is what showed up on the scan. The mass was removed, along with some bowel and small intestine. They ran tests on the mass and told me that it came from severe inflammation caused by Crohn's disease.

I was put on Asacol, which I was instructed to take 3 times a day, two pills each dose. I would frequently forget to take my pills, and eventually stopped taking them all together. I have NEVER had a "flare up" since the surgery, and I have not taken the medicine in at least 3 years, followed no diet -- nothing. I honestly have never felt like I had a chronic condition. My question is, is it possible to be misdiagnosed with Crohn's, or can the disease go away? I realize that the disease is characterized by periods of remission followed by flare-ups, but 5 years is a long time to go without a flare up and with no treatment whatsoever, especially after having the condition so bad that I needed major surgery. I've heard so many Crohn's stories of people who struggle with the disease every day and are never completely normal, so I just wonder how I could have the disease and be perfectly fine for this long.

If I don't have Crohn's, is there any other explanation for what happened 5 years ago that required surgery?


This discussion is related to Is it possible to be misdiagnosed....

[grog1970]

to everybody that comes across this page I would like to tell my story in short -- non stop chrohns for 23 years multiple hospital visits over 20 ops in that time drugs stop working every 2 years so change them again and again its because I smoke apparently      crohns has stolen my youth and ruined my life / business  more diseases are coming to the for now apparently because of crohns arthritis uveitis chronic fatigue for the last 10 or so years I told specialists and doctors I believed there was a fungus in my body just had this feeling but falls on deaf ears anyway I took matters into my own hands and sent blood to Germany for testing at a cost 5yrs ago and some positive some negative results returned recently had yet another drug change to stelara and it dropped me to a point of immobility yet again but this time worse so I decided to go back to the lab now available in Australia at a cost results positive -    positive to what you ask       " LYMES DISEASE "                look for the cause not the patch up...…...  

[denamich]

did they do a biopsy? I feel like I was misdiagnosed with Crohns too. I have none of the major problems most crowns patients have other than weight loss and a hard time digesting food.

[earthdude]

Thanks for sharing this. Your story is a LOT like mine.

I'm a 32 year old male. When I was about 18 years old, I wanted to build muscle rapidly and drank something that I probably should not have. Soon after the abdominal pain began and grew worse over the next two weeks. On my 18th birthday I had to have emergency surgery for what the doctors thought was appendicitis.

Turned out there was a tumor on my intestine. They removed my appendix and part of my intestine. They diagnosed me with Crohn's Disease. I have not taken any medication in 15 years and had no problems until now.

What I'm going through now seems to be stress-related, though I remembered my past diagnosis and began digging around on the web -- and found your answer.

I don't think I really ever had crohn's disease. Either it was a misdiagnosis, or a 14-year remission.

[chris197859]

I was misdiagnosed with crohns when I was 23, I am now 32 and there is no sign of crohns at all, I more than likely have a food allergy that causes the same symptoms as crohns Called celiac, as some other members of my family have themselves. Celiac creates a similar infection in the intestines and bowls and colon as what crohns does. but so long as you stay gluten ree and watch what you eat you can get better.!

[nikkie1580]

yes people can be misdiagnosed with crohn's,( but not usually when surgery was done and the lab tested the mass) but i would also get a second opinion.Have you been followed by a GI Dr or was your only treatment the surgery and hospital stay did you have any follow up by GI Dr?A GI Dr can help confirm a dx of crohn's and how sever it is it could be a mild cause of crohn's.But there are people that have crohn's and only a one bad flare or go into remission for years even people how have had surgery.I am self not one of those people,but i do know someone that had surgery and and was in remission of 15 yr no diet change no meds and not one single symptom of crohn's and last month had a bad flare up and was in  the hospital.So i would go to a GI and confirm it but if it is crohn's it is life and no cure so i hope that was your one and only flare and experience with crohn's it not easy life when you experience it on a daily basis.

[mammo]

I can't tell people often enough...get a second opinion. I agree with you that this doesn't sound right.