My daughter age 12 years 7 months was just diagnosed with Chron's

[iriss]

I am devastated. The Crohn's probably showed it's first sign a year ago when she failed to grow more than an inch (we are a tall family). Growth retardation persists and she has had other signs (joint inflammation, diarrhea). Tests were done: she has anemia, hypoalbuminemia, positive Guiac, and narrowing in the small bowel on an Upper GI. She will be seeing a ped gastroenterologist next week. The pediatrician said she has a classic case of Crohn's and it manifests itself subtly in kids. The bad part is that I am a registered nurse and know full well what Crohn's entails. It appears to be  a horrible, chronic illness and I have been crying my eyes out (no mother wants to see her child suffer). Stool for ova and parasites and bacteria were all negative and the doctor said it's Crohn's.
Please be truthful, doctor.  I will appreciate truthfulness most greatly and I don't want sugar coating.  Please tell me what percentage of people with Crohn's will lead suffering, pain and hardship and what percentage will barely know they have Crohn's.  I don't want my baby to suffer her whole life and I cannot take the pain I am going through.  I will see a psychiatrist for myself so that I can be strong for my daughter.
I envision rough teen years with being on prednisone and its disfiguring side effects and a horrendous adult life with fissures, surgeries, pain, fistulas and god knows what else.
Please be truthful with me doctor..I want the straight truth.
Your help is so much appreiciated. I feel the same as someone else might feel if their child was just diagnosed with cancer.
Thanks

[Kevin Pho, MD]

Hello - thanks for asking your question.

I am sorry to hear about the diagnosis.  It is great to see such support from our commenters and I strongly encourage that you follow the leads that they have suggested.

Here are some facts that you have requested about Crohn's disease in the pediatric population:

**20-25 percent of Crohn's disease (CD) is diagnosed before the age of 20.
**10-20 percent of patients have a prolonged remission after initial presentation.
**Children can develop unique complications, including growth failure and delayed puberty. Clinicians caring for children and adolescents with one of these disorders must treat the underlying disease and its complications and must also carefully monitor linear growth, skeletal development, and puberty.
**The most common symptoms are abdominal pain (95 percent), weight loss (80 percent), diarrhea (77 percent), hematochezia (i.e. blood in stool) (60 percent), and growth failure (30 percent).  Other symptoms include arthritis and perianal disease (i.e. abscesses and fistulae).
**Treatment is primarily based on the Pediatric Crohn's disease activity index.  A variety of medications should be tailored in conjunction with your pediatric gastroenterologist.

As you can imagine, Crohn's disease is challenging in an adolescent and psychosocial support is imperative.  Several outstanding support groups can be found in the comments below.  Make sure that psychosocial support is addressed when you consult your physicians.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Bibliography:
Bousvaros.  Clinical manifestations and diagnosis of Crohn's disease in children and adolescents.  UptoDate, 2003.

[kimbacat]

Monica,

I am sorry to hear of the dx.  there are some really good support groups out there and on line.  you can check out the www.ccfa.org site for adult and kids meetings near you.  ibd.patientcommunity.com and www.ibdsucks.com (has a parenting and kids folders) are 2 good informative sites.  and I think there is a yahoo club for teens with IBD.  you must remember tho, as you are going visiting websites, that the VAST majority of IBDers don't even visit sites because the are happy, healthy and out living thier lives.  even a big chunk of those on the boards are doing well but are there because they want to help others.  part of the frustration with this disease is the unpredictability.  you'll be surprised to hear how many people have an initial flare that gets controlled with meds and then are able to maintain that remission for 10 or 20 years.  

now for the GOOD news.  going undiagnosed for years, even decades is the 'norm', so getting dxd early will help tremendously.  getting proper medical treatment can help AVOID all the nasty stuff.  Prednisone is NOT the drug of choice and it's been shown that it's not effective for maintaining remission.  she probably won't be able to avoid short bursts of pred at certain times in her life, but it shouldn't be a longterm thing.  there are lots of terrific new drugs in the pipeline that can give her a wonderful, active, productive, quality life.  they reduce the complication rates and can help avoid surgeries, etc.

my Mom was devestated when I got dx'd (after 20 years of being told it was 'stress' or my favorite "working women's syndrome").  and as a daughter, I'm glad to hear you are going for counselling because I think it is really important that you get the help and support you need.  seeing my Mom so upset and hearing the sadness in her voice upset me.  one of the early stages of diagnosis is guilt (what have I done to deserve this?) and seeing my Mom upset just added to my guilt feelings because I felt responsible for her sadness.  I'm not saying to sugar coat things with her, but just be aware of how you are projecting your feelings.

take care and I wish you both the best.

[iriss]

Thanks for your support.  I did see my internist this morning since I only got 1 hour of sleeep last night due to my worries.  He started me on meds to calm me (similar to Paxil).  I know I need to be strong for my child and that's why I went.  HOw old were you when you were diagnosed with Crohn's?

[kimbacat]

Monica,

I know it's hard not to worry.  I'm glad you are getting help.  counselling and anti-depressants really do help.  depression often accompanies crohn's, so maybe your daughter would be helped by some counselling too at some point.  I found a psychologist (phD) in my area that treats a lot of CDers and he's helped me a lot (well, the drugs do too :) ).  we have a high incidence of IBD in my area.  

I started having symptoms about the same time your daugher did, 10-11 (it's the puberty thing).  about 2 yrs later my mom took me to a specialist who said that I had a spastic colon and was swallowing too much air when I ate.  no treatment, no testing, nothing.  docs poo-poo'd me for 20 years until the disease was totally and completely out of control.  I'm one of the 'horror stories' you are probably thinking of (abscesses, fistulas, lots of surgery, permanent ileostomy, etc).  but my belief that early intervention with meds is important has been strengthened by all the other people that I have met that were dxd and treated promptly and haven't encountered any of the problems I have.

it's not a fun disease.  and bowel issues are rarely a topic of normal conversation :)  it's a big deal and it's going to take some time for you and your daughter to come to terms with things.  you're a mother and a nurse, a caring and unbeatable combination.

[GI.PA]

Being actively involved in treating the Crohn's population (both adults and kids over 12), I can tell you that this disease (for most people) has more ups than downs.  It will never truely go away but may go into remission.  And that, in all likelyhood, your daughter will need medication to control this disease long term if not forever.  Accept it today and you will buy you and your daughter a much smoother course in the future.

I cannot stress how important a good GI (peds GI even better!) is going to be to her course.  Become a memeber in the Crohn's and Colitis foundation ASAP.

In this disease, through the alternative medicine out the window.  It may be an "adjunct" to traditional therapy but have seen kids get even close to deathly ill because a well-meaning mom or dad pulled them from their stable maintance dose of Pentasa (I dont want Jane to be "medicated" when she is feeling fine!) and put them on the newest "colon clense" from GNC.

Be educated, be your own (an your daughter's advocate) and keep on top of this.  There is a very good chance with good care she will lead a normal active life!

Erin

[iriss]

Thanks GI.PA..Are you a GI doc living in PA?  We live in NJ and I'm a nurse (BSN).  I'm not a health food, alternative type of gal, so I would never have my child try those things.  If you are a GI doc, then you have offered some hope in telling the truth about what you see out there in the Crohn's population

[GI.PA]

I am a PA (physician's assistant) in GI (Texas).  I follow a good deal of our IBD population, including a fair number of Peds (we only have one Peds GI available).  GI is the only specialty I have ever worked in and have over 4 years experience.  Feel free to hollar at me if you have any questions.

***@****

Erin
GI.PA

[crohnszone]

Hi Monica,

I am a 25 year old woman with Crohn's-colitis. Having had severe disease and most of my colon removed, I am now in remission. The disease can be challenging and painful, but it is surmountable.

I'm currently healthy and completely pain-free. I take no medications. The disease does come and go, but your duaghter won't always be in pain. There is a way round everything, and it's unfortunately something she'll have to learn to live with. As with any challenge in life, you get on with it. From a personal point of view, I get frustrated if my family baby me and pity me. I would advise you support her, of course, but this is something she needs to adjust to without a huge fuss. In my work on the net, I come across loads- and I mean loads- of teens with IBD who live a full, active and happy life despite having Crohn's or colitis.

Half the battle is in the mind- let the doctors deal with the medications, you can help with her adjustment to the disease. Let her read about it and meet others. To know a little about this, gives you a feeling you have some control over it. It gets you through the tougher aspects of the conditions like the gut pain and diarrhoea.

Kez
xxx

[iriss]

Crohnszone,
Regarding a normal life with Crohns: I know there is always meds for pain and meds to control the crohn's. But, my biggest fear is my child being able to eventually marry (if she chooses to do so). I'm concerned that her disease will be a problem.

[Poj]

Hi!  I'm sorry to hear about your daughters diagnosis with crohn's disease.  I also have this disease and started having symptoms at age 13, however I was not diagnosed until I was 24 (after the birth of my first child).  This disease is difficult to deal with but not impossible, I have had a lot of complications from it including fistulas and fussures.  I do not take daily meds, I have had a med called remicade administered to me through an Iv in the hospital every two years for the past four years.  This med has helped me more than the 16 pills i was taking daily.  I understand your worries about your daughter and marriage, I too had those concerns, but I have a wonderful husband who loves and supports me and we now have 3 small children, and each pregnancy was uncomplicated.  The best advice I can give you is to stay on top of the disease, keep track of foods or activities that you think may trigger it, make sure you have a Dr. that you feel comfortable with and who has a lot of experience with crohn's disease.  The worst part of this disease for me was not knowing anything about it.  When I did not know much about the disease, I was scared to death of it.  This disease is also a private disease, no one wants to talk about a disease where you spend a lot of time in the bathroom. Please keep the communication lines open with your daughter, you are a lifeline for her.  Best of luck!

[Arete]

Hi Monica,  I can simpathise with how you are feeling.  My 11 year old daughter was just diagnosed with Crohn's 2 months ago in May 2003.  I too fell apart, it is a very dificult diagnosis to accept for our children and it completely knocked my legs out from under me.  I am also in couseling because I was unable to tollerate any meds for my panic.  I have found peace by talking to many others who have crohn's.  After my daughters diagnosis I had her put on the prayer list at out church and than had at least ten people come up to me and tell me that they too had crohn's.  These were people I would have never guessed had any health issues at all.  They are healthy, happy, active teens,husbands and wives.  That was the bigest help of all.  Crohn's is not a topic people talk about so you usualy only hear of the worst cases.  As a nurse I am sure you have only seen the worst cases.  Just remember that for every flare up you have seen there are many living the same average lives that we live.  I to was crying one night about who would marry my daughter with this condition, and my wonderfully optomistic husband said "A realy great guy, this will fillter out all the jerks!"  Just remember that God loves our daughters and will provide.