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05-01-2014, 03:14 PM   #1
joey123123
 
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Crohn's or Not??

Hi everyone... this is my first post. I appreciate all replies / guidance.

My 13 yr old son has been in pain for 7 weeks. Lower right side of belly button. Our first GI doctor said it was either appendicitis or Crohns. Fearing the worse, we changed doctors and went to one of the top Pediatric GI centers in the US. We were lucky to get an appointment with a very well known and highly regarded doctor.... we felt very comfortable with her right from the start. She ran our son thru the usually tests including stool test for bacteria and inflammatory enzymes. He has also had.. CT scan with contrast... MRI with contrast.... endoscopy and colonoscopy. What was discovered was: 1) inflamed lymph nodes in small intestine (lymphadenitis) and 2) retrosternal mesenteric hernia. That's all. Biopsies were normal..

The GI doctor has all but ruled out crohns. However, she doesn't know what's causing his pain and she has not seen inside the small intestines. So she sent us to a surgeon who will: 1)inspect the small intestine from the outside, 2) fix the hernia and 3) he wants to remove my son's appendix for no reason. I'm against this move.... however, the GI doctor supports removing it. Why if it is not infected or inflamed?

My son's surgery is scheduled for Monday. I need help with:

1) has anyone been diagnosed with Crohn's without inflammation and with a normal endoscopy and colonoscopy?

2) should I allow the doctor to remove my son's appendix for no good reason at all?

THANK YOU for reading my post.... THANK YOU for your replies.
05-01-2014, 03:20 PM   #2
theOcean
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I'm going to leave this post in the General IBD section for now in the hopes that more people see it, but I may move it later to Undiagnosed Club since there will be more people struggling with similar issues there who can hopefully give you advice.

Pain in the lower right is often indicative of pain in the terminal ileum, so it's good that you're getting the small intestine checked out.
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05-01-2014, 03:25 PM   #3
joey123123
 
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Thank you Ocean.

I think it is Crohn's as no one can figure out the cause of his pain.... swollen lymph nodes and mouth sores.

It's amazing how quickly our Pediatric GI doctor .. gave up.
05-01-2014, 03:30 PM   #4
theOcean
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That's frustrating, I'm sorry to hear that. There's a lot of people on this forum who are struggling to find a diagnosis as well. I hope that you get an answer so your son can get treated soon.

Mouth sores are also another indicator of Crohn's, since it affects the whole GI tract. I used to get them a lot when I was in flare, as well as swollen lymph nodes, actually.
05-01-2014, 03:45 PM   #5
joey123123
 
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Ocean: can I ask which test or observation led to your diagnosis. I realize there's no simple test. However, many folks whom I've spoken to were diagnosed by colonoscopy -- very visable.
05-01-2014, 03:47 PM   #6
theOcean
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For me it was a combination of stool samples, colonoscopy and biopsy. At the time I was originally diagnosed with Ulcerative Pancolitis, and then last year my diagnosis was changed to Crohn's because I developed a fistula, which is a complication common to Crohn's.

I also have Crohn's in my family, so my father and his father had it. So it was pretty clear between medical history, tests and active symptoms at the time what I had.
05-01-2014, 03:53 PM   #7
theOcean
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Also, I should have done this sooner, but here is our section for people who are undiagnosed, as well as a thread for parents with undiagnosed kids. I've posted in the thread to try and redirect some parents to you, but feel free to browse, as well.

We also have a very active section for parents of kids with IBD.
05-01-2014, 03:54 PM   #8
joey123123
 
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The odd thing with my son is there's no "inflammation". However, the lymph nodes in the ileum are raised. The doctors said that's common in children and not to worry. He was very constipated and had to go on laxatives for 5 days ... he is finally normal. But was definitely blocked up.

My son has been in pain for 7 weeks..... no one can figure out what's going on.

How long to 'flares' last? Could he be going thru a flare?
05-01-2014, 03:56 PM   #9
theOcean
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Is he off the laxatives now? How are his BMs since?

Flares vary from individual to individual, and it depends on that as well as the severity of their illness and their treatment.
05-01-2014, 03:57 PM   #10
Farmwife
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Hi and welcome.
I'm so sorry to hear about his pain.

I'm going to start of with paging DustyKat . I know her dd was dx after surgery.

YES, it is possible to have only small bowel Crohn's.

I think your right to push for the whole answer.

Hugs, we have a wonderful parents section on the forum. Your more then welcome to stop by.
http://www.crohnsforum.com/forumdisplay.php?f=49

Please keep us updated.
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05-01-2014, 04:02 PM   #11
Jmrogers4
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Welcome Joey123123,
My son is 14 and was diagnosed when he was 10 through colonscopy/endoscopy, biopsies and inflammatory markers in his blood work.
How has his weight, growth been?
Another test to consider would be a pill cam, would basically take pictures along the intestinal track so would include insides of small intestine.
There have been other kids who ended up being diagnosed with Crohn's even when scopes were clean.
A lot of the kids don't seem to follow the "rules" when it comes to symptoms diagnosis. My own son for example other then original blood labs are always in the normal range even when we know inflammation is present as shown in MRE (MRI Enterography) and fecal calprotectin tests. He has also been virtually symptom free other then lack of growth, and no appetite.
I hope you can get some solid answers whatever may be causing his pain, please let us know how everything goes. I'm going to tag some of the other parents to chime in my little penguin, farmwife, mehita.
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05-01-2014, 04:02 PM   #12
joey123123
 
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how was your child diagnosed? I can't believe a high profile Ped GI doctor from a nationally ranked hospital cant make this diagnosis? In fact, she's "almost" completely ruled out crohns. BUT... the first doc we saw said it's either crohns or appendicitis.
05-01-2014, 04:03 PM   #13
Clash
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So sorry to hear of what you and your son are going through.

Has he had a fecal calprotectin test? It can't diagnose crohns or IBD but is sensitive to inflammation in the GI tract. Also, an MRE(magnetic resonance ethnography) could provide imaging of the small bowel as well as a pill cam to see the inside of the small bowel. Has your son had any tests that look into GI motility?

Other than GI symptoms are there any other symptoms that have presented themselves beyond the mouth ulcers?

A flare can vary in length some can go a year or longer with symptoms if not properly medicated. Since flares can be cyclical in nature then symptoms may subside and then start up again.
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05-01-2014, 04:10 PM   #14
joey123123
 
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Yes.. the fecal calprotectin results were NEGATIVE. Our second GI was very focused on this. In fact, she relied heavily on this test along w/ endo / colonscopy results. My boy sleeps with his hand on his stomach. When he sneezes... he grimaces and cries. This is awful
05-01-2014, 04:14 PM   #15
joey123123
 
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Thx Jacqui... He can eat.
05-01-2014, 04:18 PM   #16
Clash
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Have they investigated for other illnesses such as:

[Yersinia enterocolitica. This is the most common cause of mesenteric lymphadenitis in children. This bacterium can cause gastroenteritis and other problems. Itmay "look like" other conditions. Two examples are Crohn's disease and acute appendicitis.
I would still push for a pill cam but you may want to widen your search to other specialists in the case that your boy is dealing with something other than IBD. Could you possibly talk to the GI about getting a team approach to your son's care at the children's hospital. It may be that one of the other specialties could pick up in something.

Also there is a possibility that the surgeon will be able to tell you more after doing the surgery on his hernia, sort of an exploratory type situation. There have been kids who have been dx'ed when the docs went in to take out what they thought was a bad appendix only to find appendix was normal but areas of bowel were inflamed.
05-01-2014, 04:25 PM   #17
joey123123
 
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Funny you mention that......... they want to repair his hernia (retrosternal / behind seventh rib) and remove his appendix (which is fine). I really don't want them to remove his appendix. No reason to.
05-01-2014, 05:13 PM   #18
DustyKat
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Hi Joey and

I am so very sorry to hear about your lad and what he is going through.

I would continue to push on with answers and not rule out Crohn’s just yet for the following reasons:

1. The lymph system is quite extensive in the bowel and one area where there an abundance of nodes is around the appendix. It is true that it is not uncommon for children to have swollen lymph in this area but it can also be indicative of inflammatory response in that area.

2. Unfortunately with Crohn’s the extra intestinal manifestations, like mouth ulcers, often appear weeks/months and even years before the intestinal symptoms show up. Aside from mouth ulcers does he have other symptoms…headaches, joint pain, back pain, rashes, eye problems, growth/weight issues.

3. The terminal ileum is the most common site for Crohn’s, either on it’s own or on conjunction with the large bowel.

The appendix: It may be that they are thinking of a grumbling appendix and so whilst in there remove it to rule it out as a future cause of problems should things not settle. Would I want my child to have it removed if normal? I think that very much depends on where you are at with things and I will explain what I mean by that…

My daughter was undiagnosed for 18 months. Her symptoms did not match Crohn’s so it was never on the radar hence the lengthy delay in a diagnosis and the lack of appropriate diagnostic procedures (scopes). As time went on the period of time between symptomatic relapses became increasingly less until finally they were constant and it was at this point they became increasingly severe. No one had any idea where things were headed so going in was the only choice. She had had an abdominal CT scan the week before and everything appeared normal, another reason why more invasive tests weren’t done at the time. The scheduled procedure was laparotomy and appendectomy. I agreed for them to remove the appendix because to be honest I was at my wits end by then and just wanted her pain and suffering to end. As it was she was a mess in there and the surgeon knew immediately she had Crohn’s disease and she ended up with a resection.
As a side note, this is how my husband’s cousin was diagnosed too. They had been treating her for Rheumatoid Arthritis for 4 years as joint pain was the overriding issue for her but then the abdo pain started up. They ended up doing a laparotomy on her and again the surgeon immediately identified it as Crohn’s. She didn’t have fistulising disease so a resection wasn’t necessary, he just closed her back up again.
My children and the cousin all have terminal ileum disease.

What bloods has he had done? Are there any abnormalities?

Has any imaging been done?

Dusty. xxx
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05-01-2014, 05:15 PM   #19
DustyKat
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I see that imaging has been done.
05-01-2014, 05:23 PM   #20
joey123123
 
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Dusty.. Thank you so much for sharing your experiences with me. My son has asthma.. so does my daughter... so does my mother. Not me.

Labs: blood tests all normal..... stool test (including fecal calprotectin) normal. MRI with contrast.. normal.....CT Scan normal...x-rays (many) showed constipation. He was on laxatives for 5 days... stool was coming out like pebbles. Endo and colonoscopy with biopsies were done. Normal.

My GI doctor who specializes in IBD is giving up. I feel it. Hence, she's referred us to a surgeon to repair a .. retrosternal mesenteric hernia. The surgeon will look at small intestine inch by inch to see what's going on. He wants to remove my boy's appendix. I ask why if there's nothing wrong with it.

Why they haven't prescribed something to reduce his pain / swelling ... I don't know.

Monday will be a big day for us.

thanks again!

Joey
05-01-2014, 05:56 PM   #21
DustyKat
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It will be up to you if his appendix is removed and you could say to the surgeon that if in his trained eye it is grossly normal then do not resect it. It can be a difficult at times to tell though if lymphoedema is present around it.
Just bear in mind that all the imaging in the world can’t replace a surgeons eye so what appears normal on a scan may not be so when seen in real life.

I am not sure about the analgesics but if what is required is something stronger than what can be obtained over the counter then those sort of drugs can often slow the bowel down (constipate). Since constipation has been an issue perhaps they want a clearer picture of what is going on before prescribing.

As you are in a grey area at present I would start keeping a diary of things. They can be useful at pulling the pieces of the puzzle together and are much better than relying on memory alone when you are in stressful situations like consultations and ER visits. We have one in the wiki that has suggested areas you may want to start documenting…

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

Good luck for Monday!

Dusty. xxx
05-01-2014, 06:14 PM   #22
Catherine
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I believe there is parent on here who child had a normal appendix removed and symptoms improved greatly for that child.

If my memory services me correctly that child does not have a dx of Crohn's but their brother has?
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05-01-2014, 06:17 PM   #23
Farmwife
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Paging Sascot. I think it was her dd that had the appendix removed?
05-01-2014, 09:01 PM   #24
my little penguin
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Yep that would be Sascot.
As far as normal or top doc a lot of docs are very good but some only like kids who fit in boxes.
My kiddo does not fit a box at all.
He had normal upper Gi series with small bowel follow through - could even visualize TI region at all - radiologist stated the one thing they knew he didn't have was crohn's since the TI didn't light up .
Bloodwork was normal
Fecal cal while really sick after dx was normal .
Ct scan only mild thickening in ti which was described away.
Scope looked perfectly normal as well .
Only the microscopic changes and the very well needs non caesating granulomas found in the small bowel - large intestines got the crohn's box checked.
Mre is different than a MRI with contrast - you need an mre to get a good look .
One kiddo only showed Ibd on the pill cam .
That said you need a Gi who is willing to listen and keep digging to get answers.
DS has seen multiple GI since including top Ibd specialists .
The two Gi who did not specialize in Ibd were the best since they listened and looked at DS and his history not what typical for an Ibd kid .

Hope the surgery goes well.
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05-04-2014, 08:14 AM   #25
Sascot
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Yes, my daughter had her appendix removed as a last resort after years of severe pain in her "bottom". They did a laparoscopy and found nothing but removed the appendix just in case. Thankfully they did as she has been great ever since. The docs still do not believe it was the appendix that caused the symptoms, they found only mild inflammation, but she has had no problems since so I am happy! She is checked for Crohns now and then (faecal calprotectin), but thankfully no sign. I have also recently had my appendix out after months of on and off pain. GP didn't think it would be the appendix, but the surgeon took it out, also just in case. I haven't had pain since. My appendix was at reached to the tubes around it, which may have caused some of the pain
I would say it might be worth getting the appendix out, if he is going through an operation anyway, at least you can rule it out.
05-04-2014, 12:19 PM   #26
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My son had his (perfectly healthy) appendix removed when he had his small bowel resection. The thought was that if he ever complained of stomach pain again, we could immediately rule out appendicitis, BUT the difference between our kiddos is that we have a definitive Crohn's dx. There is a good and reasonable chance that my son will end up in the ER someday with stomach pain.

If I were in your shoes, I think I'd let the surgeon know my concerns and ask him to explain the pros and cons, but if during surgery he strongly feels it needs to come out, I would default to his expertise.
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05-04-2014, 04:31 PM   #27
joey123123
 
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Thank you all for sharing your thoughts, stories and concern. Tomorrow we'll get a closer look at my boy's intestines as he's having his retrosternal omentem hernia repaired. If the doc thinks the appendix should come or doesn't look right... I'll let him.

Question: How long do flares last? What makes them go away?
05-04-2014, 05:12 PM   #28
ronroush7
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I am knot sure about the rest but I would say leave the appendix alone. Hope you get some good answers soon.:thumbup:

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05-04-2014, 05:25 PM   #29
joey123123
 
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Thx. RonRoush. Thanks my STRONG view. But... if doc comes out during procedure and say.. I think we should remove cause there's inflammation or near the pain area.. I may loose the argument with my wife and doc. We'll see.

Thank you for sharing your thoughts and concern. Have a great day.
05-04-2014, 05:55 PM   #30
Mehita
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Question: How long do flares last? What makes them go away?
It really varies by individual. It could be weeks to months depending how quickly you seek treatment and how well that treatment works.

For us what has made them go away in the past was prednisone. It usually kicked in within a day or two. After five rounds of pred though within two years, I had to put a stop to that and my son switched to Remicade. He's been great ever since.

For some kids, switching to a liquid diet or doing EN or EEN works.

I'm not very familiar with hernias. Could it be possible that is where the pain is coming from?
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