• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I just want answers

Hi, I'm new to this forum. I've been struggling with crohns like symptoms for 6 years now. I've been to my general doctor, a gi doc, and most recently an internist. I was diagnosised wih autoimmune disorder a year ago. I just had a colonoscopy. After the test, my husband was told it looked like crohns. Which after 6 years of trying to get Help, I had researched it and was sure that was what I had. But earlier this week I went back to the doctor to get the pathlogy reports. She had taken a sample of a small mass she found in my small intestine. But the pathology said no disease was found! She told me it was tore up in there. So could it still be crohns? Because she basically told me that I had ibs and she had no treatment or help to give me. I'm desperate for help. It effects my whole life. I just want answers even if it means more tests and time spent in pain. :sign0085:
 
I hear you.

Don't worry what the medical establishment think you do or don't have. Trust yourself and your body and do what you know you need to do.

I would highly recommend you research and try the GAPS diet if you are having any kind of digestive issues. I have been using it for 4 months after having Crohn's for 27 years and for the first time, I have no abdominal pain and am digesting food properly. Normal bowel motions once a day.

Take the resposnibility for your health into your own hands. There is so much information available now you can find what you need. After all, you can't wait 20 or 50 years for the doctors to catch up.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the forum! I'm so glad you joined :)

First off, the doctor who told you, "It's tore up in there but you have IBS" well, don't bother going back to them as they're incompetent. IBS does NOT cause structural changes to the bowel.

And yes, pathology reports can come back negative and you can still have Crohn's Disease.

I know it's a tough journey, but there are a lot of great doctors out there who can help you get a firm diagnosis. DO NOT let them diagnose you with IBS and send you on your way.

We're here for you. You're amongst friends who understand.
 
Thanks alot. It's nice to hear some kind words about this situation. My first gi doctor spend 6 months taking me on and off different meds. When a drug didn't work after two weeks, he would try a new one. Then at the end of the 6 months he said and this is a real quote " nothing is wrong with you. Come back in a year if you still think your sick". I cried after that appointment. I don't even care if the doctor finds a definit cause, I'm just tired of being told nothing is wrong or being given a umbrella term so I'll go away. I would be completely cool with a doctor being straight with me and saying " I don't know, but we'll keep looking." it just sucks to reach out for help and get doors slammed in my face. But I'm so glad i found this forum. It makes me feel like I'm not ignored.
 

David

Co-Founder
Location
Naples, Florida
:( I'm so sorry you've been through so much. *hugs*

You may want to check out our undiagnosed club as many there know exactly what you're going through.

If you'd like to share all your symptoms and all the tests you've had, we might be able to provide some additional insight. I realize that might be a pretty long list.
 
I had a upper and lower gi scope, multiple sonagrams, and drugs that I cant even egin to remember. I do know that one of the meds was for celiacs. And I had a weird test I don't know the name of. I had to have an iv that had a greasy liquid in it. I remember the nurse called it cheese burger in a bag. Then once the iv was empty, I was put under a machine that watched my glad bladder ( I think it was my glad bladder) fill up and empty. Every test ended with no signs of issues. But I still had diarrhea, cramps, fevers, blood in stool, fissures, chills, passig mucus, and stomach pain that was so bad I sometimes blacked out, all those symptoms multiple times a week. Sometimes ten or more trips to the bathroom. ( I know this is tmi. I'm sorry). I went to er multiple times for dibilitating pain and a large amount of blood in stool. I spent two years just dealing with it all because I didn't want any more doctors. But I'm so done being in pain. I'm a mom to a 20 month old and it's really hard to watch her when I had to run back and forth durning a bad day. I feel so bad when I have to put her in her bed so she is safe while I sick. And it's scary to think about if I was to black out when my husband is at work, and I'm home alone with her.
 

David

Co-Founder
Location
Naples, Florida
Someone had the gall to tell you that you had IBS with those symptoms? Wow.

I don't know how far you are from Atlanta but we have one GI there who is well recommended.

Oh, and there is no such thing as TMI on this forum. We've heard all of that and much more. Feel free to talk about what you need to talk about, there's no judgment here. We just want you to get the support that you deserve.
 
I live about two hours south of Atlanta. Just out side Macon. Yeah I thought it was messed up that anyone could tell me nothing was wrong when something was very abviously wrong.
 
Mama_beans920-

Your Bx can be negative, your blood work can be negative your colonoscopy can "look" negative and you CAN still have Crohns. I know- 20 years ago I was in the same place. Twenty years later and a new Dr I had to be rediagnosed.

Hang in there. YOU know your body best! Keep going to the Dr. I was ready to go sit in the ER with a bag of popcorn and a salad to "prove" once again to my new Dr what I had.

Good luck,

Lauren
:welcome:
 
I have considered doing the same thing with a gallon of milk and some spinach and pizza. Eventually they would have to deal with me. Lol :lol2:
 
Welcome to the forum Mama_Beans!! I'm actually from Milledgeville so just right down the road! So sorry to hear about all of your troubles. I'm assuming the "cheese burger in a bag" test was a HIDA scan? I had that a last year and I tested low end of normal. My gall bladder was removed but my symptoms persist.My issues have been going on for two years. My son started exhibiting symptoms back in Aug. of last year and was diagnosed earlier this year. He sees a ped. GI in Atlanta. I have heard really good things about the Atlanta GI listed in the forum directory. I really hope you are able to get with a GI that will listen and help you get to the source of your issues. I know how it feels to go through all the testing and no answers...drives you a little batty after awhile!:ybatty: Sending good thoughts your way!!
 
Top