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Son just diagnosed with Crohns

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Crohn's Disease
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Posted 10/3/2009 1:10 AM (GMT 0)

Me and my son were just released from the hospital after 5 days.  He has been in severe pain with steady diarrhea for a month.  After many Doctor apt we actually took him to the ER, he was extremely dehydrated.  The Doctor diagnosed him with IBD and started him on steroids and Apriso.  I am at a loss and very scared.  I would love some insight from others.  I just want my son to feel better.

*just gave your post a title so you would get more responses*

Post Edited By Moderator (Nanners) : 10/3/2009 8:11:47 AM (GMT-6)

Posted 10/3/2009 1:38 AM (GMT 0)
Hi Angie, I am sorry to hear your son has been ill...nothing scarier or more worrisome than a sick child! How old is he? I hope he was seen by a good gastroenterologist. While DH has Crohn's disease, I have IBD and it is no fun. My has been somewhat in remission for several months, but when it does raise it's ugly head it certainly gets my attention. While there is no cure, there are meds which can help to alleviate the symptoms. Work with a good gastro to get your kiddo back on his feet soon! Keep us updated on his progress. I am new here as well, but will check back to see how he is doing! Prayers and hugs to you and your kiddo!
Posted 10/3/2009 2:47 AM (GMT 0)
((((Angie)))). I am so very sorry that your son has been diagnosed with IBD. I wish that wasn't the case, but I am glad you found this board. The people on this board are a wonderful bunch of compassionate people who will give you support, and advice, and help you through these tough times. I know that the folks on this board helped and continue to help me through my husband's illness.

I am guessing your son is doing better on the steroids. Did the doc say whether your son has Ulcerative Colitis or Crohn's disease? It may take some time, sometimes years, and biopsies to be able to tell the difference between the two. But thankfully the treatment for both is very similar. During a flare, our GI recommends what he calls soft white foods - like white rice, and plain chicken, white bread, basically avoid foods that can irritate the colon. Also, Ensure is a good drink to give the body nutrients when it is not able to tolerate a lot of solid foods. Also, probiotics are a good idea - yogurt (if he can tolerate it), or some other probiotic supplement like maybe Align or VSL#3.

Both UC and Crohn's are diseases that have periods of flare ups and periods of remissions. In UC the disease is limited to the colon, whereas Crohn's can affect any part of the digestive system. Lookup the CCFA website, (http://www.ccfa.org), and you'll get a lot of information about both the diseases, and the treatment options.

I hope your son's flare up is controlled, and he has long periods of remission.

My hugs for you and your son. Keep us informed on how he does.

PV
Posted 10/3/2009 2:19 PM (GMT 0)
Hi Angie,

And welcome to Healingwell. I am sorry you have to be here though. We have alot of wonderful and supportive folks here trying to live with this darn disease too. I myself have lived with this for over 34 years. I have been at the same job for 20 years, married with three grown daughters and five grandchildren. I tell you this to show you that you can still have a life even with Crohns. This is not a death sentence, though it is something he will have for life. But on the right treatment, your son can still have a good life. When first diagnosed, it is usually the hardest time for us as it takes time to diagnose and then to find the right treatment. Once you find the right meds and adjust his diet to what works well for him, things will get better. Diet is very individual for each of us. Some follow the SCD diet/Maker's Diet and some like myself do well on a less restrictive diet such as a low residue diet. My diet is easy to chew, easy to digest. You can google it and get some ideas. Somethings most of us have to stay away from are raw veggies, corn, popcorn, and many are also lactose intolerant. You might also want to add probiotics into his routine. Most of us have some bacterial imbalance and the probiotics help to even out the good and bad. I take Primadolphilus Reuteri by Natures Way and it works well for me. Others use Culterelle, Align or VSL#3. I also just recently started taking Vitamin D as most of us are found to be low on it. I hope I have helped some.

Hugs
Gail*Nanners*
Posted 10/3/2009 3:32 PM (GMT 0)
Thanks for all the much needed information. My son is only 3. The hardest part is seeing him hurt and being so skinny. But it does make you cherish those few times when he is doing well and back to old entertaining self. Even though the selection for pediatric gastro doctors is limited, I feel like our gastro doctor is one of the best in our area. He is well known, we live in Shreveport, LA.
Posted 10/4/2009 12:34 AM (GMT 0)
Angie,

One other place where you might find some help is http://www.dragonpack.com/ibdsupport/parents/       It's a support group for parents of kids with IBD.  I know there are parents on that board that have young children, also.  They might be able to offer you some good advice.  I am on both boards almost every day and I am always learning something new.

Best of luck to you and your son.

Take care,

Nancy (son Ben,15; double Remicade every 6 weeks, milk thistle)

Posted 10/4/2009 12:47 AM (GMT 0)
Angie,

HUGS to you! I was diagnosed at the age of 24 so don't have much experience with Crohn's and children but want to let you know that with your support and love he will get through this and be okay! It is definitely a lifestyle change, but one that is manageable! He will still be able to play sports and do kid things, it just may be a little harder sometimes for him...don't worry!!

I was extremely unstable my first few years with the disease, and my body has started calming down a bit. I am sure that eventually you will figure out what agrees with his system/what foods he can and can't handle. It is a trial and error process, and one that took me nearly two years!

I also totally agree with Nanners and think you should get him to eat foods with probiotics! For me goat kefir and goat yogurt are golden and work for me (I recommend the vanilla flavor)!

Again, HUGS to you, your son, and your family!
Posted 10/4/2009 2:24 AM (GMT 0)
Angie-Just wondering if your son had a colonoscopy, endoscopy, camera pill, or something else? Just wondering how your doctor diagnosed your son...

I'm really sorry about this diagnosis. It's difficult for sure, BUT a semi-normal life is possible. Support from family members is crucial, but it sounds like he gets a lot from you.
Posted 10/4/2009 3:34 PM (GMT 0)
I am surprised at how helpful this board is. I have never been on anything like this. But I am glad it's out there.

L Mills,
The Docs did lots of blood test, CF test and ultrasound, but was diagnosed by endoscopy upper and lower. They are not saying what type of IBD he has right now. They said it could takes months before we know.

Again thanks to everyone for the much needed advise.
Posted 10/5/2009 2:37 AM (GMT 0)
I wish you and your son all the best. Stay strong!!
Posted 10/5/2009 5:31 AM (GMT 0)
The biggest heartbreaker about IBD is when it hits children and the younger the child is the more my heart just breaks....I don't do well at offering much advice when it comes to children with IBD cuz I was just turning 24 when I got sick and at the age of 42 now, I'm still finding days that I just can't get my head around it so I can't even begin to imagine what it's like for a child or their hurting parent but I do hope your baby finds relief soon and I hope they find a cure even sooner so no more children (or anyone for that matter) has to suffer.

Thoughts are with you and your precious babe :)
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