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My Story

Hello All,

I am the Mom of a 14 year old son who was dx with Crohn's last year April. The flu was going around crazy last year, we all had it at some point or another. Additionally our family was under a lot of stress and I thought nothing of his "bug". However after a solid week of him not getting better and cramps setting in, we went to the doctor - they said, "it's the flu, everyone's got it." So there it is, no big deal...

Over the next week, he was on and off not feeling well, but not complaining much either. He had a huge ice hockey tournament coming up and looking back he was probably afraid to complain or I wouldn't have let him play :eek:/ That weekend I remember *everything* going right through him. He needed energy to play, so he'd eat a huge meal, wait 20 mins, let it run through him and then put on all his hockey gear and go out a play a solid game (he had the most goals for his team during the tournament - grins!)...

But the flu didn't go away and he started cramping like crazy. It was like watching someone in labor! He'd go down in pain for about 30 seconds and then be fine. Initially, they came and went a couple a day (braxton-hicks?), then they started coming more regularly, and finally they were coming non-stop.

Back and forth to the doctor, hospital and home and nada. Then you know how when you look at the same person all the time you don't always notice what someone else will notice if they only see you once in a while? I had a OMGosh moment. My son was heading into the shower - and I could count the vertebre down his back - where did he go?? What happened to him??

Back to the pediatrician who asked, "Do you have Crohn's in your family?" "Do I have what?" Ummm... no. Neither side, nothing. Doctor thinks it's Crohn's and sends us to Children's Hospital ER. They send us home with the flu stating it definitely not Crohn's (how did they know? I don't know, but whew! I was relieved). A couple of days later tears falling thinking my son has cancer and he's going to die, my pediatrician calls CH GI office and says you need to see this child.

Up until then we'd seen doctors. That day in the GI office we saw a nurse who took one look at my son and said, "I don't know if it is Crohn's, but I'd bet my house it is an IBD." A what? sigh....

He spent 6 weeks in the hospital. They did an endoscopy and colonoscopy, MRI/CAT, and started him on steroids, prevasaid, pentasa. He gained 10lbs in the hospital and started looking like my son again.

Cut to a year later - they've increased the Pentasa - he takes 3 pills in the am (1500 mg) and 3 in the evening. He still takes the prevasaid, though we went off of it and went back, iron supplements and I've just started giving him a vitamin D mag supplement.

His last labs were awful, but the doctor thinks that we aren't optimizing his Crohn's and wants to put him on 6-MP. Knowing one of the side effects is Lymphoma, I'm against it. I didn't think the labs were *that* bad. His protein was 3.3 (not <3.5) and his D was really low (so let's supplement).

He was seen by the Oncology doctors while in the hospital and 6 months afterwards because he has an unusually high amount of lymph nodes in his abdominal cavity - after seeing no difference and a slight decrease after they got him stablized, they discharged us from the Oncology Clinic (yeah!!), but put him on a drug that can cause what they were looking at in the first place?? Um... no.

Anyone have experience with this drug?

I was looking for snack ideas for him when I found you all - I'm *so* glad to find this website - I'm going to tell my son's doctor about it - they should pass it along to new patients.

Thanks - that's our story (so far...)



Super Moderator
Hi ChampsMom and :welcome:

Sorry you had to find your way but this is a fab place for support and info!

I am so sorry to hear about your son, :(. It sure sounds like the last year has been a roller coaster ride for you all. I hope you don't mind if I ask a couple questions straight up.............

Where is your son's Crohns located?

Do you know what his blood inflammatory markers are CRP & ESR) ?

There are many people on here that take 6mp and a similar drug called Azathioprine (Imuran). We also have a Parent's Forum that you might like to browse through.....


I understand your fear at the prospect of your son commencing on 6mp and the decision to do so is a very difficult and personal one. In my own case it wasn't difficult at the time to make the decision because my daughter, who was your son's age at the time, went undiagnosed for 18 months and the end result wasn't pretty. She looked awful and ended up with emergency just in the nick of time. I guess approaching it from that angle made it easier, I just couldn't bear the thought of seeing her ever reach that place again. You have a diagnosis though so it is different for you. My daughter has been in remission since her surgery 5 years ago and does take Imuran daily, I do not regret our decision one bit as she has gone onto to achieve things I wouldn't have dream't possible when we were in that dark place 5 years ago.

Everyone is different though and it is hard when you think back and say "Hey, what just happened in the last year!" Pretty hard to take on board and comprehend isn't it?

You aren't alone Mom. Stick around and browse the forums and keep asking questions! Good luck and welcome aboard.

Take care, :)
Hi Champsmom,
I'm glad you've found this pace. I'm sorry your son is going through this. There are just too many stories about kids on here, and it's just not fair.

I know the stronger drugs are scary. You're not gonna love Humira either. It's a tough decision. Sometimes a person is so sick with Crohn's that the decision to go on the stronger drugs is easier to make. But, if you avoid the strong stuff, he may end up getting worse. I hope the research on here can help you make that decision.

And I hope your boy can get better and keep enjoying his childhood.
Hi Champsmom.

I can't begin to imagine what it must be like being the parent of a Crohns sufferer, especially one so young!

I don't know anything about this drug, but I think you are really brave and deserve great big hugs for all you're going through, I don't know how I'd cope if my children had Crohns.

kind regards


Thank you for the welcome... so emotional to "talk" to people who know... thank you, thank you...

His markers (I think): CRP was normal and the other was high. Our doctor said that it could have been high because of he developed a fever the evening he gave blood. Everything else looked good, albeit his Vitamin D very low level and his protein being a wee bit low.

The doctor thinks he's too skinny and that he could be bigger. Funny thing was when he got on the scale and weighed in at 94lbs and grew an inch we pounded fists! yeah! Doctor said she feels he should be bulkier and filling out more - but at this age, I'm thinking (in denial??) that it could be he just hasn't hit puberty yet. We've no change in voice, no "other" indicators that he's going through puberty...

She (doctor) wants to do labs again in 30 days to see if it was a fluke or if the labs are still not great... Hence, me looking for something other than what he's grabbing (junk food) to snack on and increasing his protein intake.

He's played another whole season of hockey - He ranked in the top 5 for scoring - so he's moving well, stiff somethings (looks like an old man walking at time, if that makes sense).

Thank you again... The relief of talking with someone who's been there, done that is completely different than talking with doctors.

Hi Champsmom,
I am sorry that your very young son is having so many problems. You have come to the right place for support, advice and lots of information.

Hopefully, the doctors can get your sons health under control so he can have a great childhood and not have to suffer and be in so much pain all of the time.

Please keep us posted!!

You and your son will be in my thoughts and prayers.

Big Hug


Hi ChampsMom and welcome!

Sorry you and your son are going thru so much. It's worse for the parents right? I'm 43 and my mom is heartbroken at all I have been thru!

It is so hard to make that decision to go on the drugs with the scary side effects. You have to weigh the potential effects against the day to day effects of the Crohns, and then hope it even helps!

You'll find lots of good support and advice around here, especially from the very knowledgeable parents of other Crohn's kids.


PS Can we get your real name????
Hey Amy,

You know I watch my son and I think... wow, he's so strong! I nicknamed him Champ at a very young age, it's funny how's it has taken on a whole new meaning...

My name is Michelle... family, friends call me Shell (smile)...

As parents we always hurt when our children are going through rough times... he was funny though early on and was losing weight - he said I would love this weight loss - ahem... not funny I told him! Stinker.

Hi welcome

I feel bad that your son is going through this. I am not sure of how exactly it feels to be a mother but I know that my mom gets very emotional for everything that happens to me. I hope that you find this forum to be full of great support and helpful information. I also hope that your son gets well soon.
Thanks Jenn...

I've tried really hard not to get emotional around my son as I worry that he'd either feel more scared than I want him to be, or he'd worry about me more than he should. I'm single, and my children's father is not in the picture, so on top of being my Champ, he's always been "my guy"...

Reading the posts is extremely educational, and somewhat scary. Alex' scoping last year showed he had a few tiny ulcers in his stomach and small intestines, then he had some (doctor said mild) inflamation at the top of the large intestines where the bowel meets the terminal illeium (if that makes sense? still learning my anatomy).

He can go weeks without anything "unusual" happening. When it does, it's a cramp here or there and then constipation (which brings some cramps with it).

When dx the doctor said his Crohn's was mild to moderate and she believed the Pentasa would be sufficient. She's really great - we feel comfortable with her - The folks at Children's Hospital has been amazing...

Since we have no history of Crohn's in our family, someone said it can be brought on by stress. Has anyone else had that diagnoses? Stress induced Crohn's?

I've done everything possible to minimize his stress level - but with an ex-stupidhead who has caused a significant amount of damage and 2 of the 3 children in Therapy for it, stress still exists. Though I was able to pull him out of school and the county is now paying for a Home Instructor to come twice a week and he's being "County" Home Schooled - it's brilliant!! for him, as he was being bullied frequently and was missing just enough school that being in out for a few days (he's in advanced classes) was really hurting his grades. Now that he's home - he's got all A's and just seems to do better...

Anyone else pull kids out of school and home school?

Dusty - were there any obvisous signs when your son got sick having seen your daugter go through it (ie, could you see it coming or was it out of the blue?) On another post I was reading where people had symptons for *years* before diagnoses, so I'm grateful to have a quick diagnoses.



Super Moderator
Hi Shell,

Many, many people here say they believe stress was the trigger for their Crohns. I don't know if their doctors agree but certainly for them there is a very strong link.

With Matt it was out of the blue. If Sarah didn't have Crohns I wouldn't have even taken him to the doctor because his symptoms were so mild and had only been present for a week. When I asked the GP to do inflammatory markers the last thing I expected was a Crohns diagnosis within 2 weeks!

It's really hard to tell at this age, especially with boys, whether he is going to be one of those boys that doesn't hit puberty until 15 or so. Just bear in mind Shell that chronic inflammation can cause a delay in puberty and maybe that is what the doc is suggesting?

Dusty. :hug:


To save time...Ask Dusty!
Hiya Shell!! Welcome! My son is 11 and has been on 6mp for about a year and 3 months now. He has had no ill effects from it and has been mostly well during that time. Some time in the next few weeks, EJ will be moving on to Humira because his inflammation markers have been elevated on his bloodworks. All of the crohns meds have frightening possible side effects but for us the alternatives are even worse. If Alex does have to start taking more than the Pentasa, they'll monitor his blood work closely for the first few months.

Hockey?? I didn't know hockey was so big in southern Maryland!! :)
Glad to have you aboard Shell!!

Crohn's Mom

I just want to say Welcome to the forum ChampsMom!!

My daughter is 18 and also has Crohn's. She is one of those that went many years with symptoms and no diagnosis. We are finally, hopefully, on the right track now.

I just wanted to re-iterate what Dusty said...keep in mind that Crohn's can cause a delay in puberty. This may not be the case for your Champ, but it is definitely a possibility that may be what is happening.

My daughter has also been on 6MP for nearly a year now. She has not had any bad side effects from it. It didn't work for her, but that is because she was already very, very sick and that is not a "reversal" drug...it is use for prevention. She just this past Monday had a small bowel resection and now the doctors are discussing putting her back on just the 6MP because they believe it will do its job now; now that the active disease has been removed.

I wish you the best of luck in your journey. If there are any questions I can help you with please feel free to ask away! ;)
I really hope your son is okay soon, Crohns can be horrible at such a young age!
I wish all the best for you and your family, and I am also finding this site very helpful and I will defintely pass it along to my Doctor for future patients too!
Where is your son's Crohns located?

Do you know what his blood inflammatory markers are CRP & ESR) ?
Hey Dusty,

I hope life is getting better for Matt and you...

I didn't have a lab report only a conversation with Alex' GI, so only knew things were high and low. But I ordered the labs and got a copy today. I need to learn more about these numbers and what is *too* high, vs a bit odd high...

This is what he had at his last lab test about 2 or so weeks ago:

Sedimenation rate was 6: Normal is 0 to 15 so he was good there.
C-Reactive Protein (CRP?) was 30.9: High as normal is 0.0 - 4.9

Albumin 3.2 (low) normal is 3.5 to 5.5
Vitamin D 12.9 (low) normal is 32.0 - 100.0

WBC 9.8 (high) normal is 4.0 - 9.1
RBC 5.3 (high) normal is 3.91 - 5.26

So not crazy out of wack, eh? I keep praying when we go back in a couple of weeks for new labs that everything will look better...

He's having cramps a couple of times of day (5/6 on a scale 1 to 10 scale, with a few 9/10's here and there - bummer.)

What is other people's experience on lab info - does it help to know these numbers. His doc did talk about scoping again, just to see if there was anything more to see... Good idea? Bad idea?

Thoughts anyone?


To save time...Ask Dusty!
Shell, it's been over a year since he was scoped so I'd say it is a good idea. It may reinforce your decision to avoid the strong meds or it may convince you otherwise. If there is active, ongoing inflammation, you should know about it before it gets out of hand.