IBDers opinion on treatment

I'm a 17 year old girl. In August I started having bad abdominal pain. I was diagnosed with c-diff. That was treated. I had an EGD which showed inflammation and granuloma which made them worry about crohns since my mom has it. They did a colonoscopy and they found inflammation and some concerning markers but they said I was fine nothing to worry about. They diagnosed me with IBS in October. Since December I have lost 35 pounds and I am now tube fed. I have an ND tube because a NG tube was causing extreme reflux. My dr has basically given up on me and is not referring my to psychology. Most recently since January 25 I have now had 3 periods of at least 5 days where I can not drink anything, or even tolerate my feeds. Once again my dr said that I need to see psychology. I am already seen by psych for depression and anxiety. My dr has completely ruled out any psychological reason for the pain. Now I have severe diarrhea, I didn't have diarrhea when I had c-diff, and anything I put into my body comes out within 10 minutes. It is making my butt and anus hurt terribly, I am using diaper rash ointment but it's not helping. I also have new pain that is the worst pain I have ever had. The pain before was always on the right side right next to my belly button, this pain is all along the left outter side. The pain gets 100xs worse during and after a BM. My mom had crohns on this side as well as my great grandma and numerous cousins. Today I am in such bad pain and I haven't even been able to take my normal medicine for my numerous other sever health problems. My dr said there is absolutely nothing else they would do and I really have no reason to see them again. She is a GI dr. I am lost frustrated and scared. Has anyone else gone through this? Is it just the crappy reality of IBS or should I be concerned? My mom had crohns and she is also a nurse and she is very concerned.

We are most likely going to go to another childrens hospital for another opinion. My mom is very concerned and frustrated. She went through this same process before she was diagnosed. I'm tempted to go to the doctor that saw my mom great grandmother and cousins, according to my family he is evil and hates my family but he knows my family history. I don't want anything to be wrong, but I want to start treatment of there is something wrong.

I just wanted to get some other people's opinions on this. I posted this on the IBS forum too.

^Good questions.

How did they diagnose the c-diff?

How did they explain the inflammation and granulomas yet say you just have IBS? That makes no sense at all.

When was your last colonoscopy? Have they done any small bowel MRIs or CT scans?

Where are you located and what hospital is it?

They diagnosed the c-diff through stool sample. But the infection was gone within 2 days of starting the flagyl which I had to stop due to a severe allergy to it. The inflammation they found in the scopes they said was from the c-diff, even the inflammation in my stomach. Despite having the inflammation upon biopsy none of my labs/stools or anything showed any inflammatiory markers. As for the granuloma they said it was a fluke. My labs are never an accurate test for me. My allergies even though extremely severe do not show up in lab tests. I did have scans. They too were back in August/September. I am currently seen at a teaching hospital. I don't like it because the lowest member of the team takes care of coordination of care, and the higher up doctors never talk to me. As for the pain they told me to drink pepto bismol. I'm in northern Ohio. I have been seen at Cleveland clinic, and the dr I saw didn't speak English!! I was very unhappy with the care I received there. We plan on going to either Nationwide Children's in Columbus or Children's hospital of Pittsburgh. My last colonoscopy was in August less than a week after the onset of symptoms. My mom feels it was way too early to do anything. She had a scope and then 2 months later she had another and she had full blown crohns. And once started on steroids she was at least able to somewhat function again.

I live in Pittsburgh and am familiar with Children's Hospital. They have an excellent GI dept. I'm an advanced practice nurse and have a colleague whose son is 8 years old with crohn's of the esophagus. He was diagnosed at CHP and is being managed there. It seems that something is going on if you need to be tube fed and have lost so much weight in such a short amount of time.