Desperately need help and info on health problem with Cory-Chron's.

[DammitJanet]

I am feeling incredibly guilty like I have failed him all his life right now but I know its not me, its the medical community at large.

Cory went in to work with his dad today and was puking on the van all the way from here to the job site. An impressive hour and a half drive. Because of how badly Cory was hurting and feeling Tony took him to UNC Chapel Hill to have them take a look at him because that is where they were working. Good thing he did. Not only does Cory have kidney stones for the third time in his life but they have found out he has Chrons disease. That makes so much sense when you look back over his life.

Cory is my baby who couldnt keep any type of formula down without having explosive diarrhea. Once we took formula away he was fine but we were feeding fruits and veggies only. Then when he got old enough to eat sandwiches and eat things like snacks with gluten and dairy in them...his behavior got awful.

Did I set him up for a life that was harder because I didnt know? Would he have been better if he was treated all those years ago and he wouldnt be carrying these felonies? Oh you dont know how I am beating myself up right now. Not only did I pass on my genetic codes to him for mental illnesses, I allowed doctors to miss a health situation!

This kid cant catch a break.

 

[DDD]

Janet, are you listening? JANET! You are going off on an unwarranted guilt trip! Chill, my friend!

You have always done you're very best at parenting. You are loving, caring, intelligent and giving!

IF you missed something........it was human error. Not one of us is perfect and you can not be the first PP in the CD family. NO way!

Everyone, and especially your sons, know you are a loving, caring, intelligent and giving Mom. I hope they know that if you were perfect we would be praying at your statue. Hugs DDD

 

[DammitJanet]

Well now I need to know all there is to know about Chrons and in a big time hurry. I will place a bet that is why McKenzie is having these issues with her tummy. I wont sleep well until they have her checked now.

 

[DDD]

Of course you have to learn about it. That's what WM's do. Just don't look back and blame yourself for something that you had no knowledge of or reason to identify. You are a Warrior Mom. DDD

 

[HaoZi]

It's something a doctor should have caught - they're the ones with medical expertise, remember? How in Hades could you have even have known to consider Crohn's way back when? Why didn't pediatrician send you to a GI? That's on them, not on you, you did the best you did with what you knew at the time, and you're doing it now with what you know now to look out for little M, right? Right. And now Cory can maybe get some relief for himself as well. Would Cory still have those felonies? Well, let's see... was he old enough to know better? Yes. Did know better? Yes. Did it anyway? Yes. He made the wrong choice.

IIRC, Crohn's diet is very similar to IBS diet, more restrictive in some ways. It's a good starting place while you shift around for more info. There's medications that help, too, but proper diet is a major big deal even with medications.

 

[DammitJanet]

Isnt chrons the one where he cant eat any gluten or dairy?

 

[keista]

Isnt chrons the one where he cant eat any gluten or dairy?

You're thinking celiac, I think.

((((HUGS)))) to you and Cory. Nothing else to say except that the others are right. This is not on you, so don't make it that way.

 

[HaoZi]

http://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan

 

[DammitJanet]

Yes, I have found that now. I am also astounded because his joint issues with his spine are probably related. Sigh. Im praying nothing else falls down the list.

 

[Hound dog]

Janet, I know you feel bad about Cory's new diagnosis, but I'd have it varified by a GI doctor and make certain that is what it is. Then you know for a fact the diagnosis is correct and he can advise him on treatment ect.

Now as to how it's your fault and you're beating yourself up over it............ In heaven's name why?? It's not like it's similar to the common cold, for pete's sake, nor are you medically trained, and even if you were unless it got bad you'd probably not have picked it up either.

And as far as his GI issue having to do with his felonies.........ok, you know I love you but that is just plain laughable. Obviously you were having an extreme moment with that one, and everyone is entitled to one once in a while. But I'm pretty sure his digestive system has very little to do with his decision making capabilities. lol

Bottom line. Cory needs to make an appointment with a urologist for the stones and a Gastroenterologist for the Chrons GI doctor should hook him up with either a dietitian or a nutritionist, if he doesn't volunteer one, Cory needs to make sure to ask. But I'd make sure of the diagnosis first.

(((hugs)))

 

[HaoZi]

GI is really important since Chrons and ulcertive colitis (sp) can look so similar symptom-wise, as can IBD.

 

[DDD]

Because I care about you...duh!...I spent a couple of minutes making sure that what I remembered about this problem was correct. As you may remember I am not "into" medical junk BUT I feel very confident in saying that if Cory had this problem years ago you would have known. Even with erratic difficult child's a Mom would notice lack of bowel control and pain. Nope, you didn't miss anything.

Secondly, based on a quick look, he can not be diagnosed with-o testing. With his ADHD he probably thought the Dr. said "you have Chron's" when the Dr. likely said "you could have Chron's". Further testing is necessary. Often a colonoscopy is used to actually diagnosis. Chron's. I would guess that Cory either ate something that didn't agree with him, has picked up a bug (in two hours today I made five potty trips, sigh) or ??? something other than a disease. Even if he is proven to have it I know some people who function perfectly well with Chrons...well, perfectly is probably an overstatement...change that to functionally. Hugs. DDD

 

[DammitJanet]

Cory did have lack of bowel control but we chalked it up to encopresis because it came on after trialing risperdal. When he was a baby he had the most awful case of what we assumed was inability to use either milk base or soy based formula's and at that point the WIC people wouldnt allow any of the other type formula to be given. We had to just get him on solid food as quick as we could. He screamed for most of his first three months until he was put on solids and he had awful diaper rash if I let his diapers stay on with any bm in them at all. Mostly he stayed on towels naked. Thankfully he was born in July in the south.

UNC Chapel Hill is one of the premier medical hospitals in this state and he spent most of today there. They did CT Scans, colonoscopy and blood work. He has lost a ton of weight since he went off of psychiatric drugs. At one time he weighed 250 and now he is about 165. And he does eat regular people sized portions. Not fat people portions but normal sized portions. He has always been more prone to what we thought was "food poisoning" or the stomach flu.

It appears all of us have some sort of stomach something. I have IBS, Jamie has lactose intolerance and Billy has RA and throws up constantly.

 

[svengandhi]

If he'd had Crohn's his whole life, you'd know. Explosive, bloody diarrhea, puking, you would know.

Good luck. I have GERD.

 

[tiredmommy]

He'll also want to see an immunologist.

 

[DammitJanet]

Thats a good idea. Thanks. I am going to go see him tomorrow to take him some info on the good foods list and maybe a few groceries that would be easier on him. I know I read that green tea is supposed to be better and caffeine is bad. That will be hard on him. I will get him a big box of green tea to make ice tea with. Also some soy or almond milk. Chocolate...lol. Thankfully we just got him hooked up with a family doctor a month ago. Good timing.

 

[witzend]

Janet, we could all look back with 20/20 hindsight and see the things that we should have or could have done. But it doesn't do any good. Now that he knows what is wrong, Cory will have the tools to make his life right. It's still in his hands, though. Just as if it were a mental illness, having Crohn's as a diagnosis means that he has to take steps to keep it from negatively affecting his life.

Here are good some links, and I hope that he will be able to find a support group and/or a specialist that can help him.

http://www.ccfa.org/

http://en.wikipedia.org/wiki/Crohn's_disease

 

[DammitJanet]

Thank you. Yes, I freaked out a bit in the beginning because I was thinking celiac more than Chron's. I was associating the behavior problems that can be associated with celiac that can mimic bipolar and other mental illnesses and I was having a huge beat up momma moment thinking I had treated him for one thing when it was more the other. That would be sad.

After reading up more, I do think we must carry some sort of really horrible genes. I am probably carrier 1. LOL. Well my dad had awful ulcers so maybe it stems down from there. Tony seems to be perfectly fine. Its just me and my boys who are in agony.

I will worry about his passing these four kidney stones in the next day or two and then call his family doctor and make an appointment for him to get in with them so they can get his records from UNC. We have two GI docs here and I am not sure about an Immunologist. Would that be just an allergy doctor or are they more? I do know we have a doctor who is an allergy doctor. Lord I hope he passes these stones easier than last time. Last time he had to go back and two more had formed. Sigh. I am going to get him a Brita Filter for his water.

 

[gcvmom]

Janet, it's not necessarily the end of the world with this diagnosis. My difficult child 1 was diagnosis'd at age 11 -- he was VERY, VERY sick, vomiting, intermittent fevers, diarrhea, severely anemic, horrible labs, losing weight and dropped to 57 pounds at the time of diagnosis -- we later learned he was partially obstructed because of scar tissue and inflammation in the small bowel. The good news is that he's been in remission now for going on 6 years. It CAN be managed and you CAN lead a reasonably normal life. The fact that Billy has RA is not surprising to me at all, since science has learned that Crohn's and RA share many genetic similarities, which is probably one reason the drugs developed to treat one often work for someone with the other.

Cory will likely be put on prednisone initially to knock down the inflammation causing his symptoms. After that, depending on WHERE his disease is located, they'll likely start him a maintenance medication that targets the affected part of the bowel (and Crohn's can affect ANY part of the GI tract, from mouth to anus). There is a wide range of medications available, so if one does not work there are lots of other options. Occasionally surgery is required when the diseased portion of bowel is too badly damaged. The key is to work closely with a GI who is an IBD (inflammatory bowel disease) SPECIALIST. Teaching hospitals are a good place to start looking.

Witz gave you the link to CCFA's website -- that is the best place to start for information. There may also be CCFA support groups in your area, so check their website and see if there's a group Cory can go to. It will be VERY helpful for him to talk to other young adults who've been where he is now.

In the mean time, DO NOT beat yourself up over this. We have no control over our genetics. Some people who have the gene for Crohn's develop it when they're young, like my difficult child was, and others are adults when the gene is triggered by something. We still don't know exactly what that trigger is. Either way, you can't possibly have known or even guessed this would happen. The best you can do now is educate yourself and help Cory educate HIMSELF and find a good doctor.

((((Hugs))))

 

[DammitJanet]

I am glad to know why he has been losing so much weight to be honest. He looks sick. People have thought he was on crack and he isnt! My own father and step-mom asked me that when he wasnt in the room and Im not sure if my dad believed me so my dad may have died believing his youngest grandson was on heavy duty street drugs!