Son with chronic GI issues...maybe Crohn's?

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Joined
Jun 28, 2012
Messages
5
Location
USA
Hello everyone,

I am so excited to find a forum to find out information from other parents about GI issues. My son is 10-years-old. He began having GI issues around the time he started solid foods. He started having diarrhea regularly, sometimes as much as 10-20 times a day. His poor little bottom would bleed from irritation. We were sent to a ped GI doc who just said I gave him too much juice. I tried to explain that my son couldn't even have juice because it caused so much diarrhea but he reassured me that I was just being an overprotective mommy. A year or so later my son began vomiting at night. It became fairly regular and finally he stopped eating because his tummy hurt so bad. The GI doc didn't think it was anything but agreed to scope him to calm me down. Well to his surprise my son had a rather large stomach ulcer. The biopsy came back negative for H.Pylori. Also his colon looked perfect. We began giving him Nexium and altered his diet. He started feeling better. He has still had issues on and off with diarrhea and vomiting but it has usually been related to eating something that doesn't agree with him.

Fast forward and few years and now he is experiencing severe lower abdominal pain. Took him back to the GI and he tells me that my son is just holding his pooh and to give him Miralax to get him moving more frequently. It seemed to help. The doc has said that my son definitely has IBS. Now we are seeing vomiting and diarrhea at odd times that have nothing to do with diet. On top of that he has begun having fevers as well. Usually they are in the 100 range and yesterday it was as high as 101.4. Along with that he has lost about 2-3 pounds this month. It may not seem like much but he only weighs 54 pounds. He is at the bottom of the growth chart. The last two incidents have been within less than 2 weeks of each other.

My son is a competitive gymnast and needs all the calories he can get but with his stomach upset all the time it is hard. We have another appointment with the GI doc on July 9th. I want to find out what is causing my son to now have fevers and weight loss accompanying vomiting and diarrhea.

I'm so frustrated! I hate seeing my sweet boy in so much pain. He is not a complainer at all. He usually just gets really quiet and still and that's when I know his tummy is upset.

I don't want to be overreacting. I know that others with IBD have symptoms that are much worse than my son but I am still worried.

Does this sound more like IBS or IBD?

Thanks so much!

Elise in NC
 
Forgot to add that after son was diagnosed with the stomach ulcer he began taking Nexium regularly. He still wasn't getting better. The GI doc ordered an emptying scan and found that our son's stomach was not digesting his food. No wonder he was vomiting undigested food hours after he had eaten. He took Reglan for a while and son's motility issues seemed to improve.

Elise in NC
 
Hi Elise and welcome :)

I'm so sorry to hear of all the problems your son has been experiencing. That must be so hard on him and your whole family :( My heart goes out to all of you.

If I had to guess, I would say it sounds much more like IBD than IBS.

Has he had any of the following tests and if so, what were the results:

MRE
CTE
Fecal lactoferrin or fecal calprotectin
CRP
ESR
Fecal occult blood test

And have any of his regular blood tests come back abnormal?

This forum is full of amazing people who you will find extremely supportive and kind. Set up shop, we're here for you!
 
Sorry to hear about your son, it is hard watching them in pain. I know how you feel, my son was 11 when he started issues with tummy pain - it took them about a year and a half to diagnose. During this time, I was constantly trying to get them to do something - most docs dismissed it as stomach migraines or as one horrible doctor said - sometimes you just have to live with a sore stomach???? :voodoo::voodoo:
I agree it sounds more like IBD - it's definately worth asking for a faecal calprotectin test which measures the inflammation in the bowel. It is the only test that ever showed anything for my son (all blood tests were normal). At least it is a test that can be done easily and with no pain for your son - just the fun bit of collecting the poo :shifty:
Good luck hope you get some answers soon.
 
Hi Elise and :welcome:

I'm so sorry to hear about your boy...:hug:

I think your son has definitely reached a point that the doc needs to rule in or out all possible gastrointestinal disorders before resting on a diagnosis of IBS. His symptoms certainly do have the potential to fit IBD and my concern would be that it sounds like his small bowel hasn't been examined at all. I too would be interested if he has had any of the tests done that David has mentioned.

As much as I don't like to suggest children having invasive tests it sounds like another colonoscopy and endoscopy may be necessary. You know your child better than anyone, run with your instincts Mum and I think your instinct is telling you this isn't just IBS.

Good luck hun, we are here for you!

Dusty. xxx
 
Hi Elise and welcome. Sorry your son has suffered so long. I hope the GI does more testing for your son. A pillcall is also helpful with diagnoses for some. This sounds like more than IBS to me. Please keep us posted.
 
Thank you all so much for replying. My instincts are telling me that something else is going on. We have an appointment with the GI doc on July 9th. I'm going to push for more testing. I'm going to write down everyone's suggestions. I appreciate it so much!

The hardest part is that my son, Ben, has never been sick or in pain when he has been at an appointment with the GI doc. I think if he could see that it's not just a tummy ache he would be more responsive. We may need to look for another doctor. In our area there are few pediatric GI physicians. I've begun keeping a log of when he has issues and what the symptoms were. I wish I had done that long ago.

Ben does have times when he feels fantastic. He may go weeks without any issues at all. Then all of sudden it's back. He might have several nights that week that he vomits. He is now having vomiting during the day as well. He has always had diarrhea so that's nothing new. It's the fever and weight loss that have me alarmed.

Anyway, I know I'm rambling. I just want to get this resolved. Ben is becoming very sensitive about his size and the reactions other children and adults have when they find out he's 10.

Thanks again for all the encouragement and suggestions! I feel like I'm going into our next appointment armed with good information!

Blessings,
Elise in NC
 
Good luck with the appointment Elise!

If you haven't already found them have a look at the diary suggestions we have in the wiki...

http://www.crohnsforum.com/wiki/Diary-Inclusions

It is possible for symptoms to be cyclic in nature, my daughter was like. Eventually the length of the well times between episodes became less and less.

If you have any further questions prior to your appointment please don't hesitate to ask. :)

Dusty. xxx
 
Thanks to everyone who responded. We saw the GI doc today and he agreed we need to figure out what is going on. He ordered an upper endoscopy to see his stomach. He had a stomach ulcer when he was younger. Also he ordered blood work. The tests he ordered are CBC w/diff & platelets, CRP (C-reactive protein), and Multi-chem (CMP, AST, ALT). I have no idea what those tests are but he explained that we would do these first and see if there is a need to do a colonoscopy.

There was an opening tomorrow so we should have some information tomorrow. Hopefully the blood work will be back quickly and will let us know what the next step is.

Thanks so much!

Elise in NC
 
It seems like the GI doctor is doing the right thing! Have they tested his stools for cdiff/occult blood? The occult blood for the stool tests are what got my doctors more 'motivated' to find out what is wrong.

I wouldn't worry too much about his weight. My brother is almost 4'11 and will be 12 in October. He is very active with football and weighs 53 pounds. He eats all day long & although he's 'under weight' and doesn't have too much muscle, all the specialists have said this is normal.

Take care! His symptoms sound a lot like IBD to me & the GI sounds on top of things. Hopefully he can get a DX soon so he can get on the way to feeling better!
 
Thanks for the responses!

We were in and out of the hospital very quickly this morning. The upper endoscopy showed that my son has several stomach ulcers. One was particularly large. His esophagus was very inflamed and swollen as well. I asked the GI if this would explain his fevers and he said probably not.

I am hoping we will get the lab results in the next day or two. Part of me is hoping that they all come back normal but the other part wants to know what is causing my son's symptoms.

Thanks,
Elise in NC
 
I'm glad progress is slowly being made Elise. Please keep us updated and let us know if there's anything we can help you with.
 
Im so sorry about your son! So hard to feel so helpless when our kids our sick :( You might try him on a SCD, GAPS or Paleo diet? I started the SCD 2 months ago and have been symptom free with no meds now since... and I had Crohn's bad :) There are tons of great blogs with recipes your kiddo will love.
www.againstallgrain.blogspot.com
www.heal balance live.blogspot.com
www.foreverscd.blogspot.com is mine but its super new ;)
here is a legal illegal food list for SCD. The whole site has great info, no need ot buy the book. Good luck to you and your baby boy ;)
http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm
 
Hey speedmom4,

Any news on the blood results? I hope all is well. :hug:

Dusty. xxx
 
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