New here

I have a 15 yr old son DX with UC last year, we just changed Drs because she seemed very unorganized, I had many red flags with her, but we live in a rural area, there are not many Drs around here, we had to drive 3 hrs to see her, I found another Dr closer and we saw him the other day, As he was looking through our records he said He was confused why she told us it was UC, because the biopsy report said crohns that there were granuloma cells and you see that in crohns not UC. I would have fell if I were standing, you see the only way we have gotten through this in the last year was being thankful it wasn't crohns. I had such a hard time dealing with it I just kept telling my son at least its not crohns. I am lost for words with him. I know we will get through it, but I'm so upset that I put my trust in a DR. This new DR is very organized and strait forward. He made sure we understood every thing before we left. We had blood work done to see if its Crohns or UC, which they are not sure how well it works. IBD serology 7. I want to confront the old Dr when we get the results in,I'm not sure how to handle this. Has anyone had an simular experience?

Thanks for listening...

Hello, pjp. Welcome

I was diagnosed when i was 13 and im 22 now.
I was told I had Crohn's From a simple blood test as well. And than admitted for a colonoscopy.

It def. is bothersome to hear one thing and than another. I can relate because im dealing with the same type of situation but with meds Vs. Surgery.

You will get through it.

Hi. I know what this feels like. My husband was diagnosed with Ulcerative proctitis (by biopsy) in March 2003, and all was well, and he was doing fine just taking Canasa suppositories for maintenance. In fact, his GI felt that it may even have just been a one time thing, and that his case was so mild, if anything at all. Then, bam, in March 2008, my husband ended up in the hospital with a c-diff infection (while he was taking no antibiotics), and was also diagnosed with severe crohn's inflammation in a large part of his transverse and ascending colon! He was in the hospital for 45 days, and lost about 48 lbs, and was being followed by a surgeon for a resection. But thankfully for him, Remicade saved the day, and healed his colon and he came back home.

It's now been 2 years since that happened. Things have not been smooth sailing, but he's doing ok. He's had a few ups and downs, but we've managed. Yes, Crohn's can be scary, and I know that all the medications are incredibly frightening, but life still goes on. I've learned that there is little point to worrying about the what ifs, all you can do is take care of the here and now, and make the best out of every moment. In some ways, our lives are better now than 2 years ago - we take the time to enjoy things in life, we've stopped working crazy hours, and we spend more time with each other. My husband still holds down a full time job, and is productive. He is in remission, can eat most everything he wants, and is normal. The only question is of course, how long this remission will last.

I too consoled myself with his ulcerative proctitis diagnosis, saying it was so much better than the alternatives, especially crohn's. And now, we've had to face the crohn's diagnosis . . . it was a terrible blow . . . and we're ok. Life gives us no guarantees, and we just have to be ok with it, and make the best out of what we have. Crohn's is manageable. I am encouraged by the number of new therapies in the pipeline. I know that if my husband had landed in the hospital even 10 years before he did, he'd have come home without 1/2 his colon. Instead, he's home, without surgery, leading a normal life . . . because of the advances made in medicine. So, hold on to hope - new medicines are in the pipeline, and everyday brings us closer to newer better therapies. Oh, and another thing - the medications used to treat UC and Crohn's are pretty much the same. The only difference is that with UC, removal of the colon is a "cure", whereas Crohn's can come back after surgery. You wouldn't jump the gun to surgery anyway - so for right now, the treatment isn't different, and so the choices you have to make are not really that different.

If the biopsy results stated that it was crohn's, and your previous GI told you it was UC, then, she made a mistake. In my husband's case, his biopsy was consistent with UC. A lot of people with UC are later diagnosed with Crohn's - this happens because the diseases can mimic each other - the only way to know for sure is to see those granulomas in the biopsy (however, if the inflammation with crohn's is mild enough, you may not see granulomas in the biopsy). In fact, for some people, they only find out they have crohn's, after they have had surgery for UC to remove the colon, and the disease comes back say in the small intestine! Imagine their disappointment when they are diagnosed with Crohn's after they thought they were through with IBD! As I said, there are no guarantees.

If you've moved on to another doctor who you think you can trust, I don't see how railing against the old one will actually help anything, or change anything. I am still upset with my husband's old GI, who between 2003 and 2008, never did a full colonoscopy on my husband - perhaps we would have known about Crohn's sooner, and could have prevented my husband's hospitalization if we'd known. We just moved on to another GI, whom we trust, and just put the other GI out of our minds. That's just my humble opinion.

You and your son will learn to cope with this diagnosis. And he's going to take his cues from you - so chin up, and be positive, and focus on the silver linings. (((Hugs)))

PV

You are doing the best thing you can do, which is getting educated about this disease. But what you must always remember is that while everything you read about Crohn's is a POSSIBILITY, most things are not a PROBABILITY. Most people with Crohn's disease have an initial flare, sometimes lasting for a few years, where diagnosis and treatment can be hard to come by. Once things settle down and the right course of action is found, they take their daily maintenance medication (which your son should always be on!) and they carry on with life barely thinking about Crohn's. A lot of the people here are either the hardest hit, or the newest diagnosed, those needing support. Then there are those of us who have had the disease for many years and have seen it all, so we try to lend an ear and help out as much as we can because we have been there and done that.

My mom had CD all my life and I was officially diagnosed when I was 23 even though I showed signs at 13, so I really have lived with this disease for my entire life. Both my mother and I have had wonderful lives. CD gave us some bumps in the road for sure, but everyone has those. And there have been some amazing advances in medicine in the last few years. Hopefully your son will be one of the many who find the right medication and achieves remission and stays there for a good long time.

Thanks for all the encouragement, It surely helps me look at things different. I know it could always be worse.

I was DX with RA 4 yrs ago, I went through hell and back until we found something that worked. It just brings back some emotions I buried. And it gets hard trying to get people to understand what you are going through, thats why I'm glad their are forums like this. People who can understand and help out new people just trying to get through the day.

I know we will get through it.

pjp