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Is it really Crohn's

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Crohn's Disease
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Posted 7/23/2014 5:58 PM (GMT 0)
Hi everyone--first time here and I'm hoping to get some feedback. I'll try to make this short.

My son (almost 11 y.o) has not grown in height in a year. We took him to the doctor and his weight was down. We then saw a nutritionist and within 5 weeks his weight went back up (though still not where it should be for his height). At the same time his bloodwork came back saying his iron was low (and thus put on an iron supplement) and his SED rate was high (so we needed to see a GI).

Saw the GI. Had more advanced bloodwork done and she thinks it points in the direction of a moderate case of Crohn's and thus wants to do an endoscopy/colonscopy to be sure. So that's going to happen in a week. We're also having a stool sample just in case it's a parasite causing the inflammation.

The issue I have, and where I need input, is this: he never gets sick, has no diarrhea, no abdominal cramping on a regular basis, etc.--the "regular" Crohn's symptoms. He has not grown-yes, fever within the past year-yes, headache within the year-yes. He did have one mouth ulcer and a small skin rash.

When he was an infant he had a milk allergy where he had diarrhea, occult blood, gas, bloating, etc.--once milk was removed things were fine.

Is it possible it's the food that he's eating that's causing the inflammation? If not, and it is Crohn's, from all the other stories posted how severe does his situation sound. Again, opinions only...

While maybe I'm in denial (which is possible) something just doesn't quite sit right. Please let me know your thoughts. Much appreciated.
Posted 7/23/2014 7:53 PM (GMT 0)
I don't know, from what you've typed it seems pretty early to jump to that conclusion. Just my opinion.
Posted 7/23/2014 9:07 PM (GMT 0)
Try not to worry until you have all of the test results. There are a number of GI things such as Celiac disease, infections, and food allergies that can be an issue. It does seem reasonable for your son to have the testing done. You can't be in denial if you don't even have a diagnosis. Let us know what you find out.
Posted 7/24/2014 12:55 AM (GMT 0)
Thank you both. I will check back after the tests are done. Your support is greatly appreciated.
Posted 8/25/2014 10:41 PM (GMT 0)
Crohn's is confirmed via the scopes. Mild apparently but still worries me terribly especially since the blood work done after being on Pentasa for 2 weeks shows no changes in his inflammation levels and the nurse talked about putting him on Humira or Remicade already. Seems odd to me to jump that high that quickly. They recommend a MRE but we are getting a second opinion before doing anything else. Just wanted to close the loop on this thread.
Thanks.
Posted 8/25/2014 10:41 PM (GMT 0)
Crohn's is confirmed via the scopes. Mild apparently but still worries me terribly especially since the blood work done after being on Pentasa for 2 weeks shows no changes in his inflammation levels and the nurse talked about putting him on Humira or Remicade already. Seems odd to me to jump that high that quickly. They recommend a MRE but we are getting a second opinion before doing anything else. Just wanted to close the loop on this thread.
Thanks.
Posted 8/25/2014 11:12 PM (GMT 0)
Can you tell us exactly what was seen/found on the scopes? How exactly did the doctor describe it? If possible, get copies of the report. (As a side note, I get copies of the reports for every single test I have done. Then I look up things as needed. Also it makes it easier to remember your history if/when you change doctors or see new ones, which is unavoidable).

I wouldn't expect Pentasa to improve any serum inflammation markers. As far as I know, it has never been shown to do so. On the other hand, inflammation markers in blood tests are but only one piece of the big picture, one piece of the puzzle so to speak. By themselves, they should not dictate treatment or changes in treatment.

The MRE should tell you more info, and perhaps you should wait until then to change treatment.

Jumping straight to Humira or Remicade may seem premature, but keep in mind that Pentasa has very little strong evidence backing its use. And your son is about to enter a critical growth stage in his life. It's important for his growth to control his disease as well as possible the next few years. Once that growth period has passed, it's gone forever. No chance in his 20s to go back and grow if he has missed the window. That's one reason why it's important to treat a child his age a little more aggressively than, say, an adult aged 25 or something.
Posted 8/25/2014 11:27 PM (GMT 0)
The dr gave us pictures from the scopes of the "bad" areas. Minor ulcers scattered throughout his digestive tract. No other issues like fissures or blockages. Colon/rectum is fine, esophagus other than one minor ulcer is fine. A couple raw areas but at the time she didn't think she'd find anything different in the MRE than what the scopes showed. We want to take a more conservative approach and step-up rather than start at the top. He has relatively no symptoms and has gained over 2 pounds in 2 weeks since starting Pentasa. I also wonder how much his anxiety is creating his intestinal issues (currently seeing a psychologist for anxiety/stress issues) but I digress.

Good to know about the inflammation markers--they seemed to be set on that indicating whether the drug was working or not (again, another reason for a second opinion).

I guess I struggle with putting him on such a strong medication when he has such minor symptoms compared to all the stories I read on here. I do agree with you though that I don't want to create further growth issues by not giving him the right meds.

I'm just a mess--tearing up as I write this--as he's such a sweet, little boy and I hate seeing him go through this and would do anything to make it better but my crystal ball is foggy and there just seems to be contradicting information on everything. I'm trying to be positive but just want to protect him from a life filled with pills as any parent would for their child.

Sorry to ramble...just a bad day...but I know tomorrow will be better...it has to be.
Posted 8/25/2014 11:38 PM (GMT 0)
It has probably already been asked by your doc, but just to be sure, he doesn't use NSAIDS does he (ibuprofen, aspirin, similar meds)?

Look at it this way: That strong medication may very well keep his symptoms minor compared to all the stories on here. That would be a good thing, wouldn't it?

With this disease you will get lots of conflicting info. It's part of the battle. No two cases of Crohn's are exactly alike. What works for one person makes another worse, etc, etc. So it takes some patience and persistence, as do all chronic conditions, but you will adjust and so will he. Sometimes I think these things are tougher on the parents than on the kid who has it.
Posted 8/26/2014 12:02 AM (GMT 0)
No NSAIDS. Nothing but vitamins.
And yes, strong meds would be good if it helps-just prefer not to have him on that forever... Hoping for a cure or better treatment in his lifetime.
Thanks for your insight. I'll take it one day at a time and do what seems best for my son based on the info I have at the time. We'll see how the second opinion dr goes on Friday and go from there.
Thx.
Posted 8/26/2014 2:08 AM (GMT 0)
My brother started remicade at 15. It worked amazing for him and he gained the weight to where he should have been. He went from barely any pain to a severe case quick. He had surgery and started remicade right away. He doesn't seem to have any problems since. He is like any other healthy 18 year old (except he has to sit at a doctors office for 3 hours every once in a while for the medication).
Posted 8/26/2014 4:47 AM (GMT 0)
Try not to think of it in terms of your son will be on something like Remicade "forever." First, it's likely he'll only tolerate it or have it help him for a few years. Second, better treatments are likely to eclipse it in the next few years. So just think of it as the best treatment to start with for the time being - something that might really help him through his teens.
Posted 8/26/2014 1:42 PM (GMT 0)
Scattered ulcerations are not really minor. Compare that to my first scopes - rectal inflammation, with ulcers, and redness in my stomach and cecum, a few ulcers in my ileum. It took me another 7 years to get into a solid remission using Pentasa and dietary changes plus one gigantic dose of steroids (3 months on pred, 3 months on entocort).

Your son's anxieties no doubt stem from the digestive problems, not the other way around. Sure, being anxious can upset your stomach, but being sick for a long time can wreck your outlook in a big way. Is it possible that your 11 year old son is not able to communicate clearly about how he's feeling? Or maybe he is embarrassed to share with you all of his bowel trials and tribulations? I applaud you for taking on therapy and I hope that he learns some good relaxation methods and ways to communicate more clearly, but I do want to stress to you that from what you've described (failure to thrive, ulcers throughout the bowel) your son's case isn't really "minor."
Posted 8/27/2014 1:10 AM (GMT 0)
Don't be afraid of the biologics. Yes, they come with risks, but leaving this disease un- or under-treated is riskier.

On a personal note, a friend of my family was diagnosed at 17 with Crohn's. He was always a very underweight kid, but it took a while for his symptoms to get bad enough that the doctor was wiling to pay attention. (This was in the late 90's.)

Their first line of treatment was Remicade. I think it took him a little while to get into full remission, and I believe they used an infrared sauna for a time with him, but once he was into remission, it has basically continued to this day. He feels good to the point where he only checks in with his doctor when he absolutely has to in order to continue his treatment, he doesn't take any additional meds, and I don't think he even takes any supplements other than maybe a multivitamin (he went through a big "supplements are a scam" phase a while back.) :)

Anyway, I just tell you this because he has had such a long remission, and it is due to sticking with his treatments all these years. He got through college in 4 years, he has a full-time job, got married, and just had his second child. And as a mom, I know that's what you want - for your son to be able to lead as normal a life as he possibly can. If the doctors thing his best chance of doing that is going to be through treatment with biologics right now, you've just got to keep your eyes on the ultimate goal and do your best to trust that you and the doctors are giving your son the very best care you know how to give.

When I'm having a bad day, it is comforting for me to think about the fact that I'm lucky I'm not battling cancer or something like ALS or Huntington's. And it's a very hopeful time for people like us - with all the research that is going on with the biome and new treatments being developed, there may very well be more successful treatments not too far on the horizon!
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