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crohn's DIAGNOSED

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Crohn's Disease
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Posted 2/27/2012 3:02 PM (GMT 0)
hi my daughter has recently been diagnosed with crohn's. im still uncomforatable with this diagnoses. this is a perfectly healthy 18 yr. old no previous signs, none. she became ill in december with stomache pain and diarehha. she also had pain in her sternum area. after testing with our family doctor, he sent us  to a g.i. there she had a upper and lwer g.i. done, it showed ulcers in her esauphagus are as well as some in her stomache and bowls , not too bad in these areas but more on the esaphagus area. She is on previcid 2 times per day 30mg. We go tomorrow for more test results that she had ( a ct enterography). it is hard for me to accept that this could come on like this with no previous symptoms just boom, she is acually feeling  a little better, her g.i. doctor has her on a 80/20 diet right now, 80% boost or ensure then 20% food, she is taliking about putting her on mexothrethate, i know this a strong drug that can affect the liver so im not sure what to do, it is alot to take in right now but, she also lost about9 to 10 pounds but is slowly gaing it back. thanks for listinging just cant seem to thinkk maybee she is misdiagnosed
Posted 2/27/2012 3:11 PM (GMT 0)
It is unlikely that she is misdiagnosed, especially if there were biopsies done that confirmed the inflammation found on scopes.

It is hard to take in, that your beautiful daughter has a chronic illness. I understand. But this illness is typically diagnosed in young adulthood or adolescence, and can sometimes take years to get to a conclusive diagnosis - perhaps your daughter has had minor compliants for a few years that no one took notice of because they didn't add up to much - she was tired, or achy, or lost her appetite here and there, or had some minor diarrhea - all of these symptoms are consistent with Crohn's but also consistent with regular life for many people.

Now that she is diagnosed she has a good chance to get to remission and move past all of that - no more fatigue, no more random aches and pains, no more problems with her appetite, bowels, etc. It may take a while to figure out the best medication plan, and she may need to play with her diet to figure out what works best for her.

Since she's 18 she should be seeing an adult GI, but there's no reason you can't get 2nd opinions on the medical options. A lot of the decision criteria depend on your and your daughter's tolerance of risk, how good she'll be at taking a regular medicine, how well she is going to be able to follow a routine. This is a chronic illness and really must be treated for the rest of her life, no kidding.

I'm glad you found this forum. Encourage your daughter to post here as well!
Posted 2/27/2012 3:51 PM (GMT 0)
thanks for the input, i will also get her  to join this site as well, tomorrow we go back to the doctor so i will know more, also she is 17 and will be turning 18 in1 month so i will ask her doctor about this because she is at a children hospital. i am curious if anyone out there has also had ulcers in the esaphagus area most sites i go to about crohn's talks about ulcers and inflamation in the lower bowel mostly. thanks again have a good day.
Posted 2/27/2012 4:14 PM (GMT 0)
I've had inflammation in the esophagus, including a stricture which required a balloon dilation. Every scope I've ever had shows inflammation in my stomach. At the other end, I've had inflammation in the rectum and cecum. I've never had a pill camera exam, so I don't know the condition of my small bowel.
Posted 2/27/2012 4:40 PM (GMT 0)
Laudy, I can completely relate to ur daughter, I was diagnosed with crohns at age 15...it's not fun, but it's my life and I'm still learning to deal with it at age 26. The more positive u are the better the disease is. I still at bad times cry and hate my life but I just tell myself tmrws a new day. It does get better. Also, working out really helps with the disease. Just walkin for 30 min each day really made a difference for me, stress is my #1 trigger and walking helps me control my stress. Hope all goes well tmrw
Posted 2/27/2012 4:44 PM (GMT 0)
Welcome to HW. Sorry your daughter is getting this diagnosis but the upside is she will be under medical care should any other issues develope. I was DX at 21 after going down hill over a 6 month span, I never had serious issues before but I did have a lot of "tummy aches" growing up. (That was 30 years ago)

Anyway, I was dx with crohns in my esophagous about 6 years ago. And it is very frustrating not being able to find information when you have questions --- hopefully we can help with that. My GI said less than 7% of CD patients have disease outside of the bowel, maybe that's why info is so hard to come by. The Previcid is a good idea as it will aid with reflux that could aggrivate the ulcers.

You might want to check to see if there is a local teen support group for her. She might feel more comfortable talking with other kids about CD. How is she handling the diagnosis? Take care.
Posted 2/27/2012 5:05 PM (GMT 0)
So sorry about your daughter...I was a perfectly heatlhy 24 yr old when crohn's struck me, unfortunately it often comes about that way.

Of course mistakes can be made and a second or third opinion often comes in handy, though chances are they may likely find the same ulcers that have already been found.

It's truly heartbreaking for everyone involved....I have 2 kids and my daughter is 22 with bowel issues (confirmed Irritable Bowel Syndrom to date) and I hope she doesn't end up with an IBD cuz her IBS is beating her up as it is. So far my 19 yr old son is good (touching wood) and hopefully he stays that way....My mom had ulcerative colitis and with me having crohn's it's clear that it's familial, although none of my other 5 siblings have an IBD yet.

I hope she gets excellent care and is able to manage her disease, my heart goes out to both of you.
Posted 2/27/2012 10:27 PM (GMT 0)
I'm 15 & my Crohn's affects my mouth, esophogus & stomach, a few parts in my small intestine and most of my colon. My flares tend to come out of nowhere as well. I use 'magic mouthwash' my GI prescribed me and it numbs the sores in my mouth/esophogus. I know a lot of GI's that use 6mp with their Crohn's patients.

I have lost 85 pounds with this flare and am trying to maintain it so I don't have to go back on the NG tube. It is common to lose weight with Crohn's because of pain or malabsorption.

Hope she gets well soon!
Posted 2/29/2012 1:44 AM (GMT 0)
thanks to all of you who responded, went to the G.I. doctor today, my daughter was put on methotrexate 9 pills once per week and also mesalamine, also a drug that may help stomache upset ig needed after taking the methotrexate. The c.t. scan did show gradulomas giant cell in some part of the upper stomache, still the ulcers in the esaphagus but we thin getting better. There is very little in the colon area no fistules or narrowing so this is good.Our doctor told us that a polymiric diet has showed signifacant results in improving this condition and in alot of cases deep healing as well. That would be to drink most of your meals like boost or ensure. This is very hard to do so she suggested that we continue with the 80/20, meaning 80 percent drink and 20 percent food, it is important to get the proper amount of nutrients and vitamins with this but so far the past 2 weeeks has showed a great improvement and my daughter has gained most of her weight back, she only lost around 9 to 10 pounds, i know this is new for us and i hope and pray that all of you will find somthing that will work to put you in remission, that is what we are praying for as well. We are trying to stay off steriods too, at this point we are just doing this day to day i guess that is all can do. thanks aging for your support bless you all
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