Uncertainty

[confused-dad]

My son has just turned 15. For the last 10 weeks he has been suffering from symptoms which correlate to crohns. He woke up one morning and said that he didn't feel well. He complained of feeling sick with stomach pains on the left side. Not being one to complain we took these symptoms seriously and visited his doctor. The doctor prescribed medicine for dyspepsia. After a week of taking the prescribed medicine and no improvement we went back to the doctor who asked if my son was being bullied at school. He wasn't/isn't being bullied and the symptoms were all physical. He prescribed Movicol (2 sachets a day) as our son told him he wasn't going regularly to the toilet.
A trip the following week to another doctor resulted in a physical examination and blood tests. The comprehensive range of blood tests came back normal. This was reassuring but still we didn't have answers. With the symptoms persisting we made sure that we would take our son to the doctors on a weekly basis. Our son was noticeably losing weight and his energy levels were very, very low. Apart from visits to the docs he had only been out of the house about 3 or 4 times for a short walk which left him exhausted.
At the 5 week stage the doctor arrange an appointment at hospital with a paediatrician. The paediatrician gave our son a full physical examination and more blood tests. The blood tests all came back normal. He was also x-rayed which appeared to show that our son had severe constipation. The doctor was convinced this was what the problem was and prescribed Movicol (8 sachets a day for a week the paediatrician arranged for an mri scan. With the symptoms persisting and regular pain being a recurring theme after eating on the right side as well as the left now, along with continual nausea, we asked what the next step would be.
At the 9 week stage with no improvement and the paediatrician suspecting crohns, our son had both a gastroscopy and a colonoscopy this past Monday. There was nothing apparent but we're still waiting for the results of biopsies and the results of the mri scan taken at week 7. We've an anxious wait ahead and are very concerned about the whole thing. We just want answers.
I fully appreciate that many on this forum have suffered for a lot longer than our son and I sympathise with anyone who does or has suffered in this way but if there is anyone out there who can shed a little light , it would be greatly appreciated!

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that your lad is not feeling well at the moment. Whilst the scope did not show anything the biopsies may be able say what is going on. I would definetly advise that you have a look at our parents of undiagnosed kids thread as there are other parents here going through the same struggle as you who can truly emaphise and certainly give some advice: http://www.crohnsforum.com/showthread.php?t=18372

I will keep my fingers crossed that you can get some answers soon and your son can then be feeling better, pls keep us updated on how things go.

AB
xx

 

[confused-dad]

Thanks for the welcome AB-much appreciated! I'll check out the forum thread you suggest and I'll keep you updated on how my boy gets on. Thanks again, Ian

 

[David]

Hi Ian and welcome to the forum. I am so sorry to hear about your son. I can imagine your worry and frustration. My heart goes out to your entire family. I'm going to throw a few questions your way. My sincere apologies if they are overwhelming.

1. Do you know if they were able to view the terminal ileum when they did the colonoscopy? This is the last part of the small intestines and the most common place Crohn's Disease manifests. Though that your son's pain first started on the left side makes me think there would be issues elsewhere as well.

2. Have they tested your son's vitamin B12 levels. That he is experiencing fatigue and all his regular blood tests came back normal makes me wonder about this. If he IS deficient, it could point to Crohn's Disease as people with Crohn's Disease are commonly deficient and one symptom is fatigue.

3. Have they done any specialized blood tests to check for inflammation? These might include CRP or ESR.

4. Has your son been eating normal amounts of food despite all of this?

I wish your son well and your family all the best.

 

[confused-dad]

Hi David,

Thanks for your kind words - all very much appreciated at his time!
Feel free to ask as many questions as you like. If any of the answers can lead to enlightenment that's all to the good.
I'm not sure if the colonoscopy viewed all or any of the terminal ileum but I'll find that information out.
My son had the following investigations:
Abdominal ultrasound
Glandural fever screening test, full blood count, plasma viscosity, glucose
TSH, Us and Es, LFT's, amylase -all normal.
Abdominal x-rays showed faecal loading throughout colon
Urine culture.
We are still awaiting results of stool calprotectin and Urea breath test for helicobacter as well as results on biopsies taken at time of gastroscopy and colonoscopy.

My son is not eating nearly the amounts he did before and as a result is losing weight. My wife and I are keeping a diary of how much he eats and drinks.
He is very athletic and before this illness was playing soccer at elite level.

Maybe this additional information can assist in providing us with some answers. All assistance/opinions/suggestions is appreciated!

Kind Regards,

Ian

 

[Catherine]

Hi ian

My daughter also had x-ray showing faecal loading though out the whole colon between christmas and new year. She was dx with crohn's in late january.

Your son sounds very like Sarah, my thread is called Sarah's story.

Good luck

 

[David]

It sounds like your doctors are being pretty thorough though I'd be interested in B12. As tough as it is, I think now it's waiting game for those results If it's still inconclusive there's plenty of other tests they can do such as get a look higher up on his small intestines to see what's going on up there.

 

[Catherine]

While waiting dx Sarah was put on Ensure supplement, this least slowed the weight loss. She had three times a day.

 

[dannysmom]

Hi Confused-Dad & welcome. This forum is wonderful for undiagnosed and confused people too. My son also just turned 15 and we (family & doctors) are all still confused (Danny's story is on the link below). I hope you get some answers from the biopsies. Please stick around and let us know when you get more results in.

 

[Slim Johnson]

Hi confused-dad,

Has your son done a barium small bowel follow through?

CD can be a tough disease to diagnose. I had a colonoscopy due to symptoms in '04, with biopsies. It showed nothing abnormal, and the biopsies were also normal, (and are every time I have a scope.. I have had 4) leaving me with an IBS diagnosis. The Dr. also neglected to go into the TI for further study..

Long story short, two years later I needed a CT scan of my abdomen to see if I had a hernia. Turned out I had inflammation in all three parts of the small bowel, an scarring in the ileum, which was narrowing the intestine. A few weeks later, I get my second scope, and my Crohn's diagnosis. Interestingly enough, the GI of the second scope also didn't get into the TI. This was due to me not having a clean prep. My first barium series showed the real story... It also took over 4hrs. This is a test that normally takes about an hour or two at the most.

I hope for your son's sake that they figure this out soon. It sounds like the Dr.s aren't leaving out much in the way of tests. Just know that these tests don't always show what's going on.. as they failed in my experience.

In my story, it was the imaging studies that exposed the disease.