Crohn's Disease Support Group

Hello everyone! I apologize in advanced for what is sure to be a lengthy post. Please bear with me.

In September of 2008, I awoke one morning to a mild sharp pain in my abdomen. I thought it was nerves (I was set to run a relay race that day), and ignored it until three hours later, I was literally doubled over screaming in pain. My Mom took me to the ER, and to make a VERY long story short, they misdiagnosed me three times (even sent me home once), but finally admitted me after I insisted that I had a level 10 pain. 36 hours later, they finally called in a surgeon who suspected my appendix was the problem and wheeled me into surgery. Imagine my surprise when I woke up and was told a foot of my terminal ileum had its blood supply choked off and died.

Prior to this event, I had not experienced any abdominal pain or discomfort. It came out of nowhere. There had been three other times in my life (starting when I was 20...I am now 23) where I had prolonged periods of extreme vomiting and diarrhea, and a doctor had mentioned it could be Crohn's, but never tested me for it.

According to my surgeon, the biopsy of my bowel was inconclusive. They couldn't figure out why the intestines had died.

Ever since surgery, I had been experiencing bad stomach cramping, or constant dull aches, or sometimes sharp pains. A CT scan revealed swelling in the distal portion of the small intestines. I was sent in for a colonoscopy and biopsy three days later, at which point, all of the swelling (except for the site where they reattached the intestines from my surgery) had subsided. I was told the biopsy was negative for Crohn's, but was then informed that they couldn't get up high enough into the small intestine to truly rule out Crohn's. The next step would be to have me swallow one of those camera pills to check.

Since that appointment (about two weeks ago), I have been mainly pain-free until today. It feels as though the swelling has returned and has been accompanied by a dull ache and occasional sharp pains.

My question is, how was your Crohn's diagnosed? *Supposedly* they examined the intestines they removed for Crohn's and saw no sign of it (I cannot guarantee that, however, given the multiple medical mishaps that occurred during this ordeal). My understanding is that with biopsies, they are looking for ulcers. Will Crohn's ALWAYS cause ulcers? My doctors are also suspicious since my pain comes and goes...one doctor said Crohn's would be a constant pain, but I thought it came and went sometimes? I am beyond frustrated at this point, not to mention utterly terrified. I am otherwise perfectly healthy and just graduated college, looking forward to starting my life...and then to be hit with this and have doctors at a loss for an explanation has been traumatic. In my mind, the only answer is Crohn's. Is it really hard to diagnose?

Any help at all would be much appreciated. Thank you!

In my opinion, Crohn's is often hard to diagnose. My husband went to two different GI doctors and to the emergency room twice before anyone diagnosed his Crohn's. It was actually an emergency room doctor who just listened to what my husband's symptoms were and said he thought it might be Crohn's. They did an abominal CT scan in the ER and part of his small intestines was inflamed and infected. They had to do surgery that day. Once the surgeon started, he found a large pocket of pus that could have spread through my husband's body and potentially could have killed him. The doctor also had to remove part of his colon at that time. My husband did not have pain on a constant basis either, so apparently the symptoms can come and go. I guess my only suggestion would be to try different doctors until someone figures out what's wrong, or if you go to the same ER enough they get tired of seeing you and will try harder to figure out what's wrong with you. Good luck!! I hope you find a good doctor who can help you.

Thank you so much. My doctors have been treating the biopsy as the be-all-end-all of diagnostic tests for Crohn's, which is frustrating. They have ruled out Celiac Disease and IBS, and most of them are saying they think the swelling is a result of my surgery (which makes absolutely so sense to me). They seem to forget that something caused my intestines to die in the first place...Crohn's would explain everything! And from what I have heard, it sounds like there is no single, definitive test for Crohn's and that it's diagnosed more by the compilation of symptoms rather than one test.

Again, thank you. If anyone else has stories about how they were diagnosed, please share. I want to be fully prepared with as much information as possible when I go to my doctors.

hi im 16 they diagnosed my this year by a biopsy of some ulcers but ulcers are not always present just most common. But about 4 years ago i started getting sick on and off and having terrible pain and they couldnt diagnose crohns but thought it was possible but the doctor told me probably not because it came and went but this yeat they diagnosed me so it is possible you have it but idk for sure im not a doctor. But good luck and if you have other questions let me knw. God bless!

I just wanted to give you all an update. I've had a few bad flares (really bad pain, swelling, cramping, complete loss of appetite) over the past few weeks, so my doctor wanted to order a specific blood test for Crohn's as well as capsule endoscopy. Both tests had to be approved by my insurance, and I just found out today that my insurance company denied both tests. Now they want to do another CT scan (why, I have no clue, since we already did one and it showed swelling). I'm so frustrated, not to mention furious at my insurance company. They haven't been able to view the areas of my small intestine or biopsy parts that they needed to due to swelling, and I'm still symptomatic, but my insurance company seems to think I don't need these tests! Ugh!! I feel like I will never get a diagnosis, which scares me. I don't know what to do at this point.

I am not sure why doctors can't figure things out quickly.....I didn't even know about Crohns until I had a hysterectomy. During the surgery the GYN that was doing the surgery didn't like the way my small bowel looked so she called in a general surgeon and he took a look. He DX'd Crohns on the spot.

The next day he came in and told my husband and I what he saw and he referred me to a Gastro. I had the colonoscopy a couple of months later and BAM!!!!! IT IS Crohns.

THe bottom line.....they can usually tell by looking.....if they are already in there it shouldn't be that hard to see!!!!!

I hope you get relief soon.....I HATE this disease....

Grammycarol

Hi,

From my experience this is an extremely frustrating disease. My daughter became symptomatic at age 7. She is now 23. She was diagnosed with Crohn's at age 21. By that time she'd already had her appendix and gallbladder removed (probably both unnecessarily), been hospitalized more times than I can remember, been referred to eating disorder specialists, spent several of her birthdays in hospitals, missed months of high school, etc., etc. It was a nightmare. She had even spent over a month in a nationally renowned children's hospital and worked with a pediatric G.I. specialist. She now is on Remicade, antibiotics, occasionally steroids, erthropoiten (sp!), etc. I have so much respect and admiration for her. She is a full time student and works part time. I worry about her. I love her. I wish the medical community was more aware of this disease. In our experience, our daughter's symptoms were dismissed as psychological, "being dramatic," I was labeled as "Munchausen's by proxy" because I was frequently taking her to the doctor and missing work to care for her. She was misdiagnosed with asthma (this never made any sense to me, but we followed that lead). As a parent, I feel guilty and angry that my daughter suffered more than she needed to for so many years due to misdiagnoses. I wish you the best of luck. There seem to be no simple answers with this illness.

Try talking to your employer's benefits department. I have been told they have alot of control over what the insurance company approves. It's worth a try. Sometimes if you have "other" sypmtoms they approve it. Good luck!

I have had a lot of trouble but the abdominal pain was not constant and i had diarhea for 3 months and urgency ,they diagnosed me a few days ag odespite the fact they said i couldnt have crohns because my inflamatory test came back negative, but then they got a suprise when they did my colonoscopy it was indeed crohns I believe u really know when something is wrong , doctors sometimes dont get it

My son was diagnosed resently with crohn's so we've learned alot in the past few months from research and grilling his GI doc. From my understanding crohn's is difficult to pinpoint because there is no one test that says yes you have it. It comes from a detailed history, blood work, colonoscopy and endoscopy biopsies looking for inflamation not just ulceration. The final conformation for our GI has been a response to treatment.

Not every case presents the same, for instance my son has been severely constipated, never loose stool. He did sometimes have abdominal pain that would increase with activity. Even pain in his arms or legs. His discription of that was 'my bones hurt' or 'my arm doesn't work'.

Crohn's symptoms can go into remission so for a doctor to say that you would be in constant pain does't say much for his or her knowledge of the disease. I think the main thing is to find a good GI specialist to hunt down the cause of your symptoms. Hope you find relief soon.