Son Just Diagnosed with Crohns

Welcome to the forum, yellowfinch. I'm sorry your son is a Crohn's patient.

How old is your son? Has he been meeting his growth milestones? Is he old enough to explain to you exactly what's going on?

Why is your son taking cipro, for the abscess? This is probably what's causing the stomach pain. He may need more than the prilosec while he's on that abx plus prednisone. There are other PPIs that he can take that might work better. You should also adopt some GERD diet advice while he's on pred, and elevate the head of his bed in the meantime so he doesn't reflux in his sleep.

How much pred is he taking? What's the taper plan? Why did the DR recommend pentasa for fistulizing Crohn's? This is not the typical approach; most pediatric GIs would recommend a biologic med for fistulizing Crohn's from what I've seen around here. I do not believe Pentasa is going to be the solution for your son.

Yellowfinch,

There are many here that have been exactly where you unfortunately are right now. It's very difficult to come to terms with one of your children having a diagnosis like this.

Crohn's can be a very frustrating and problematic disease to have and treat. Many of us do in fact have tremendous success treating this disease, and that's what you have to look forward to and embrace in your son's case.

It's also very tough to consider the meds that are discussed for Crohn's, when the strongest thing you've likely given your child up to this point is a Tylenol.

I agree that Pentasa is definitely no the way to go considering your son's current symptoms. A second opinion may very well be in order. As scary as some of the stronger meds sound. Most that have been though this will tell you that you don't want this disease to rage out of control. It can do some serious damage. The side effects listed for most of the meds are much less scary than the disease itself.

You will very likely want to consider a biologic like Remicade or at the very least an immunosuppressant like Imuran.

Good luck, and try not to worry. This is NOT a death sentence. There are many things in this life that are much worse than Crohn's. It just doesn't seem like it for alot of us at times.

Hi,  I'm new to this so I hope it's not wrong that I'm adding to this thread instead of starting a new one but --- my son, 12 yo, was diagnosed about 7 weeks ago after experiencing pain, diarrhea, weight loss and fatigue for 2 months before that.  After a lot of blood work he had an endo/colonoscopy and crohns was confirmed.  He had ulcers in his mouth, throat and lower GI.  9/9/14 he started on pentasa 1000mg 2x per day, and prevacid in the am.  then was increased to 1000 in the am and pm and 500mg after school.  then we added prednisone 3 and a half weeks ago.  He just started putting on weight this week, 3 lbs, after going from 134 to 111 so I'm very hopeful that the steriods have finally started kicking in.  And the fact that I started giving him Ensure type shakes at 350 calories per bottle and he loves them.  His appetite has diminished greatly - he used to eat us out of house and home, now he eats like a bird.  His next appt is in 8 days, if weight gain doesn't continue the Dr said we'll have to change from Pentasa to something stronger.  No dietary advice, except, "he can eat whatever he wants" as the weight loss was a big concern.  We try to watch the foods that trigger him but are there any books or sites that outline major contributors to flare ups or is it all person by person?

thank you for whatever advice I can try.  It is so hard seeing him look so skinny and pale.  He was always in the 90th percentile for height and weight, all milestones were met, he was never a sick kid, always had perfect attendence now he wants to miss school all the time and just started in 7th grade.  Between hormones, 7th grade drama and crohns with it's pains and bathroom trips it's been a tough few weeks.

I'm googling for a low residue food list.
Are there any questions that might be good for me to ask the Dr?
His inflammation was everywhere except for in the middle of his colon, the MRI after the endo/colonoscopy indicated the middle section didn't have any inflammation or ulcers as the rest of the track did.
thank you very much

Thanks for the responses everyone.
My son is 9 yrs old and so far has always been in the 90% for his growth. He's the tallest in his class.

To my understanding the Cipro is for the abscess, which appears to have fully healed now. The stomach pains started before starting the Cipro, but only by a day or two. In addition to the fishtula he has inflammation in the terminal ileum.

We prefer NOT to be on prednisone or the pain medication. He is currently on 15mg 2x a day of prednisone. We only use the pain medication as needed. Unfortunately, his stomach cramps seem to be worsening.

I am trying to get into the Cleveland Clinic and we may also be referred to Cincinnati Children's.

When I called the GI about the symptoms getting worse he advised upping the dose of prilosec. Hence my determination for a second opinion. The pain is absolutely unbearable and we are at a loss. Today we started the SCD diet.

Yellowfinch, As I am also a parent of a newly diagnosed Crohn's sufferer I don't have any advice, but I feel your pain and I hope your son finds relief very soon. Best of luck to your family.

Yellowfinch,

I'm so sorry to hear your sons (you and Kym) have been diagnosed with CD. My only daughter has a chronic illness and for me, it's more difficult to watch her be sick than myself.

Something stood out to me and I wanted to ask you if he became sicker after the colonoscopy since you mentioned that he got worse after seeing the GI? The preps can make things worse sometimes. I've had that experience myself.

I've been an ostomate for 10 years now. I had my colon and appendix removed after diagnosed with Chron's Disease. Pain after the surgery is just normal and it sometimes takes weeks for recovery and adjust. Family support is really important specially with his condition.

Yellowfinch, I am so sorry you and your family are going through this. My symptoms started at age 10. I had a major flare at age 17 where my biggest symptoms were severe stomach pains and fevers. I agree with everyone else here - Pentasa will do nothing and you need a new GI. You are fortunate, however, that there are several good children's hospitals in Ohio. Cleveland Clinic and Cincinnati are great, and I'd add Rainbow Babies in Cleveland to the mix. A biologic such as Remicade or Humira (both approved for use in children) is your son's best bet. That is the "top-down" method of treatment that most doctors are using these days. Hit the disease hard and fast before it has time to cause too much damage. These drugs may sound scary, but they really aren't and they work and work fast.

Hey Beave,
You got me curious. According the this NIH article, the carbohydrates are broken down in the small intestine. That doesn't answer your good vs bad bacteria question, but it may be that digesting simple sugars are hard when there is inflammation in the small intestine. Ensure always makes me feel gross...I'm not sure why.

http://digestive.niddk.nih.gov/ddiseases/pubs/yrdd/

Hey. So take some comfort that I'm 34 and was diagnosed when I was 2. Yup 2, and have been through pretty much every med there is throughout the years. So, he will be fine.

Here is my one piece of advise, go find the best doctor for your son you can, even if t means driving further. Someone you and him comfortable with. I promise you , this will be the best thing you can do.

Its tempting to read all these stories about SCD and different suppliments and think the work, well guess what, they don't. It sucks, but they just dont. There is no magic cure for this (not yet anyway.) The disease is different for everyone, so those people that go on these diets and say they havent been sick in years, well guess what, thats how this disease works. Diet or no diet. I had no symptoms for 4 years and no meds than bam! Have been sick for 1.5 years now and have to take meds. Didn't do anything different, this has happend to me more times than i can count by now. Once again, diet or no diet. Rest or no rest, suppliments or no suppliments. This disease just goes in cycles. It HS, I was sick all the time, even missed 6 months of school. All this diet stuff is silly and will actually make things worse. I know, because my mom always pushed diets and than both of us would get so frustrated when after eating right for a year, i would still get sick. Than you play the blame game. Well, I ate this two weeks ago and now Im sick. Believe me, the best thing like I said, is to get the best DR you can.

One thing i would say, is to make sure your son is not lactose intolerant, because that seems to occur more often with people in crohn's and UC. Also, and this is pretty obviouse, even if you dont have crohns and have diarrhea, stay away from foods rich in fiber, AKA anything raw. Fiber wont make you sick in itself, but it will make it worse, if he is already in a flare.

I can go on, but feel free send me a message if you want more info.