Could my son have Crohn's?

[Cindy S]

My son is 15 he has suffered with constipation for his entire life; he's never had a bout of diarrhea. Sitting in school was often very difficult for him. In elementary school he was diagnosed with functional constipation and began taking Miralax. His stools have always been large, despite taking the Miralax. Other than this he had no other medical problems and has gained weight and grown always being above average in size. He is now 5'9" - 165 lbs.

Two weeks ago he woke my husband frightened when he saw blood on the toilet paper after wiping. When I learned of this the following day I made an appt with the GI expecting that I would hear he'd developed hemorrhoids from his chronic straining.

After he was examined, I learned that he had known for months that he had multiple anal fissures & hadn't told us! I also discovered that his doctor who has been in practice for 28 years had never seen an anus which resembled my son's. He called his colleague in to consult on the case. A combined 48 years and they hadn't seen anything like this before. He explained he suspected Crohn's in the perianal region & ordered lab work & a colonoscopy.

His labwork has shown a slightly elevated hemoglobin & hemocrit. ACCA, AMCA, gASCA & pANCA are all negative. His ALCA is positive (90). He is scheduled to have the colonoscopy next Tuesday.

As you can imagine I'm overwhelmed trying to gather information as quickly as I can in order to ask the informed questions. Does this sound like he could have Crohn's?

We don't know of anyone in my husband's family having Crohn's. I have no information on my family history.

Cindy

 

[jlanier]

I think one of the best things to do is to just step back, and take a couple of deep breaths. I know that the idea of crohn's is a lot to take in, and is very easy to become overwhelmed. There is a lot of information, and forums like offer a lot of knowledge from people that i have found who almost know more than some doctors about this stuff. You are in the right place, and fortunately you have found a place like early on in the process of your son getting diagnosed. I dont have anyone in my family with a history of digestive problems either. I hope that things turn out well for your son.

 

[Tesscorm]

Hi Cindy,

I can imagine how worried you are! I'm glad you found this forum - you'll find lots of information and very helpful, supportive members.

My son, 17, was diagnosed in May with Crohns. What I've learned is that everyone is so very different when it comes to symptoms and treatments! My son is just about your son's height and weight and never displayed symptoms that we 'noticed' until March when he began to have diarrhea, fever, paleness, loss of appetite, weight loss. Although, in hindsight, some of his early symptoms were canker sores, sore back muscles and night sweats - all which were easily attributed to a new toothbrush, hockey hits and too many blankets/too warm a room. There are other members who have had nausea, migraines and joint pains prior to being diagnosed.

As far as the fissures, my son has had a bit of a problem with them recently (caused by constipation) - I don't believe his were very severe but he found that sitz baths with epsom salt helped quite a bit as well as penaten lotion when it really bothered him. As you've dealt with constipation for many years, any advice I can give is, I'm sure, redundant, however, my son found that prune juice, coffee and yoghurt helped quite a bit.

I hope the colonoscopy provides you with some answers. There is a subforum for Tests for IBD - you may want to have to a look for info regarding colonoscopies. http://www.crohnsforum.com/forumdisplay.php?f=220

Good luck!

 

[DustyKat]

Hi Cindy and :welcome:

I'm so sorry to that your boy is having these problems...:hug:

He may have Crohn's Cindy and I completely understand how overwhelming and frightening this is for you. The waiting and the unknown are the hardest of all. My children never had diarrhoea with their Crohn's and I know it is the first thing doctors usually ask and look toward as a symptom but it isn't the case with all people. Unfortunately family history isn't an indicator either.

Does your son have any other symptoms aside from the fissures? Much like Tess has listed...joint aches, rashes, eye issues, headaches, fatigue, loss of appetite...

Did he have bloods done for inflammatory markers? CRP and/or ESR?

Good luck with the colonoscopy on Tuesday and I hope it gives you solid answers whatever they may be. Keep us posted!

:hang: Mum! We are thinking of you and if you have any questions don't hesitate to keep asking!

Dusty. :heart:

 

[Dexky]

Hi Cindy, welcome to the group! Let us know how the scopes go. My son has had no anal issues but I have seen that often on this site. Good luck!

 

[dannysmom]

Hi Cindy! (We are from Long Island too!)
I do not know much about the positive ALCA ... I actually never heard of that or ACCA & AMCA. I plan to research a bit more today on those tests. (If anybody else knows, please post.) My son (still undiagnosed) had the Prometheus IBD 7 test ... which has the ANCA and ASCA along with 5 other tests. (I am very curious what hosiptal/GI you are using and will PM you. We go to the city - Columbia and Mount Sinai - for Danny.)
I am sorry your son has suffered with constipation his whole life. I have other relatives (not Danny) with constipation and fissure problems but they are not diagnosed with any GI disease. Please keep us posted on the colonoscopy results.

(I am glad your son does not have any other symptoms! My son will be 15 next month and is almost the same height and weight as your son.

 

[Cindy S]

Ben definitely doesn’t have a loss of appetite, that boy eats! He hasn’t complained about achy joints and hasn’t has rashes or eye issues. There are times when he is extremely tired and goes to sleep in the afternoon after coming home from school, but we usually dismiss it as he’s been up too late studying the night before or exhausted from sports. He did not have the ESR or CRP test done. I am going to look into these tests.

 

[DustyKat]

It is more common to have extra intestinal manifestations (EIM's) if there is large bowel involvement.

I think it would be worth having the ESR and CRP done along with B12, Iron Stores, Folate and Vit D.

Dusty. xxx

 

[imaboveitall]

My daughter never had diarrhea. She has no GI symptoms presently, though she does have generalized weakness and most of her labs consistent with inflammation, though normal CRP.
Crohn's can present in many ways other than the typical diarrhea/weight loss. She passed a kidney stone last Sat; kidney stones can be an extraintestinal manifestation due to malabsorption.

Ask for a fecal lactoferrin; noninvasive test, done on stool, specific for gut inflammation. My daughter's GI does this test frequently and puts much emphasis on the result.

 

[dannysmom]

I found this article on the different serological markers:
http://onlinelibrary.wiley.com/doi/10.1002/ibd.20226/full

I will request Danny have those 3 new markers tested.

Thanks!

 

[imaboveitall]

Dannysmom, I read your son's story via the link and I am surprised the docs are not calling it Crohn's, with a pos Prometheus 7. That was one of the first tests done on V at dx and hers was NEG for all 7 markers. I'm told that test can have false neg but never a false pos, and with everything else you describe it sure sounds like Crohn's to me.

I too went down the path of differential dx as V's sx are also "atypical", her biopsies always NORMAL and she is scoped top and bottom yearly. She had a SBFT and a capsule endoscopy, finally this past fall, and the cap endo is what revealed significant TI inflammation. Her GI said many w/TI inflammation take years to get a proper dx, as they DON'T have "typical" Crohn's sx. Her presenting sx at dx were:anorexia secondary to dysmotility, extreme weight loss, low grade fever and night sweats. She was having one perfect stool per day and I thought she likely had lymphoma. To this day she has continued to have one perfect stool per day, and no abd pain nor appetite issues since dx.

As I posted earlier, request a fecal lactoferrin as this is SPECIFIC for inflammation located in the gut. Serological inflammatory markers can be elevated in other conditions, but lactoferrin in stool means GUT inflammation and nothing else. Her GI relies heavily on this test to assess V.

( I keep trying to edit to correct "endoscopy" but it keeps showing up misspelled)

Julie

 

[dannysmom]

Thanks. I will ask for the fecal lactoferrin (he has not had that one done ... we did the calprotectin recently) and also for these new ALCA, ACCA, AMCA and anti-glycin anitbodies too. I agree with you in terms of false positives ... after reading the high specifity numbers for these tests. ....
thanks again!

 

[imaboveitall]

You're more than welcome, I "feel" for the mothers w/atypical kids as I STILL question V's dx.
She has dysautonomia and urticaria pigmentosa as well and from Oct-late Jan when new labs came back, I attributed her new level of weakness to that. Had a cardio consult, tried a beta blocker, tried Florinef, to treat her POTS. I have asked for and gotten an endocrinology consult and had her tested for Addison's, I asked for a tryptase level in case it was her mast cell disorder causing problems, I asked for and got any lab test I requested and I covered any possible dx I could come up with ( I have a med/sci background). In the end it seems Crohn's is the reason she is living like an invalid since Oct.
Many, many people including med professionals think Crohn's MUST present w/bloody diarrhea. We have friends who are physicians (not GI docs though) and they STILL question her dx.

 

[Cindy S]

Thank you so much for your suggestions. I am going to speak to his doctor when I bring him for the colonoscopy this week. I am going to request a script for the additional blood work. We have a follow-up next week to get the results; I’ll speak to him then about the fecal lactoferrin test.

 

[imaboveitall]

Good luck. I hope they are doing an endoscopy also. The lactoferrin is a cheap and easy test, her doc does it often. It's very reliable for gut inflammation.
Interesting, about his labs, V's hgb and hct are always low.
This is the most individualized disease; I used to think, like most people with no personal exp with it, that all Crohn's pts had diarrhea galore.
I have an adult neighbor with it who has just perianal disease. Oddly, she just started Humira a few weeks ahead of V; she lives three houses down.