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Crohn's Disease Forum

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Ohio
:eek: My daughter Emilee is 15 yrs. old. Kind of long story short.

Since she was about 12 her Pediatrician told me she had irritable bowel syndrome and to give her Imodium. And she also was what we call spitting up after she ate or drank certain things. The ped. doc put her on Zantac. Doing as told, i did so. It never helped all this time Emilee had diarrhea and some stomach discomfort and she complained about her back hurting. I just thought the back pain was something to do with something she did that day or something at school.
So October 2012 she was vomiting and diarrhea. I thought ok she has a stomach virus & off to urgent care we go thinking they would check to see if she had the flu that had been going around. The dr. there said yes a stomach virus. Well Emilee kept vomiting & the as usual diarrhea for over a week. I am like gosh this has lasted a long time!! I take her to her pediatrician and she ordered an ultrasound of her gall bladder. Which only showed some sludge in it and so she ordered Zofran for the vomiting but said not to give to her every day. So ugh didn't know what to say to that. :ybatty: Emilee continued vomiting & all for another week we are on 3 weeks and no relief. And still no referral to a doc to see if the gall bladder needed taken out or what. I take her to the ER. They do a CT Scan & just tell me she has a cyst on her ovary that she will be fine. SMH I was very upset then because the ER doc never came in to explain anything to me sent a nurse in that had no manners at all. That afternoon after many calls i was scheduled with a dr to check the gall bladder out. So gall bladder comes out & Emilee has lost 11 pounds. I take her to all her follow ups & keep reporting vomiting and diarrhea is still bad what is causing this. My answer was i don't know. It should stop in time her body needs to adjust. UUMM weight is still coming off. As of today she has lost 58 pounds from October 2012 to 1 week ago when we finally was able to see a GI doc.
Blood test have been done. And we done the gastric emptying test 2 days ago.

I call today for blood work results. Her inflammation was 39 which is not supposed to be higher than 20 the nurse said. And a couple test weren't back yet but as far as they can tell she has some type of Colitis. Won't know a positive answer on colitis or crohn's until all test come back. From a family member that has crohn's and lost a massive amount of weight bc unable to keep food in or even water i fear she has crohn's. She will eat and about 10 minutes later she is saying she feels like she is choking starts coughing & then vomits all the food or what ever that she has ingested. I am beside myself not knowing and we don't go back to the doctor until May.. I need answers or how to adjust her diet or something now not May.. She has lost so much weight & I fear that losing more by not keeping food in she is going to lack vitamins & tear up her throat and stomach or something..

I am praying i find answers soon.. Thanks for reading :ybiggrin:
 
I am sorry to heard that your dsughter is having rough and hopeful now GI on board she get some relief. I would suggest you look that the diet sub forum for help with her diet. Good luck. xxxxxx

Welcome to the forum.
 
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I am sure that you will find the FORUM to be a VERY HELPFUL place to be !!!
 
I am so sorry, Jenilynn. I wish I could reach through the computer and hug you and your daughter, but I bet that sounds creepy so just ignore that last comment. ;) I'm a mom and couldn't imagine having to watch my child feel so ill and have to wait so long for answers. Have they scheduled her for an endoscopy and colonoscopy, yet? I get upper back pain from my gastric reflux and my doctors have always said that was weird because people usually experience heart burn at the front of the chest. Maalox is a huge relief to me. Also, you can lift the head of her bed six inches to help her out at night by putting blocks underneath the feet of the bed. If you use pillows, it just causes you to bend your stomach which isn't good. Ensure is also good to help with weight if she can keep it down. They have a weight-gaining formula. I am sending positive vibes that this new doctor is the one to help!!
 
Thank you all so much. When Emmi had her gall bladder surgery done the doc did do an endoscopy on her. But said look fine, gi doc said he would more than likely repeat. Waiting until May i wish he could schedule & figure all this out. But i suppose that is why i am mom & he is doc.. I never thought of ensure i will try that couldn't hurt at this point.

I think this forum is awesome & the diet part would help alot because i have no clue what she should not eat at this point.


Thanks again!! :ghug:
 
Have her keep a FOOD JOURNAL and keep track of all that she eats and that will be a BIG HELP for you when your needing to figure out if there was something that made her sick !! So once again we are all here for you !!
 
Welcome to the forum, so sorry you had a need to seek us out though. It really sounds like your daughter is having a rough time.

We have a Parents of Kids with IBD forum(<--click here). You may want to ring the GI nurse and discuss Enteral Nutrition(<--for info click here) if she continues to lose weight, although EN does have the ability to quell all the inflammation and that wouldn't be good if she has an up coming colonscopy or endoscopy.

If you are concerned that she is only getting worse and will be hard pressed to endure the weight-loss and pain up until May then I would keep pushing the GI nurse to get moved up as well as utilizing the GP and even ER at times when she is in visible pain and distress. It is the squeaky wheel that gets the grease, kwim?

I do hope she starts to feel better soon and you are able to get her in sooner than May. Sending hugs and support your way!
 
I called the doctors office back today to talk to a nurse again. I just couldn't sleep at all last night millions of things going through my head. Her gastric emptying was delayed. No more info was given to me about that. Ulcerative colitis came back in one of her blood test & she said there was 4 more they are waiting for they will be in any where from tomorrow to sometime in the next couple weeks. I am surely not understanding none of this at all. She also said that if the gi doc wanted to do anymore testing that he would order them before she came back in May. But he hadn't looked at anything yet or anything. More and more i am frustrated by all this and i guess it is the not knowing a positive answer. :/
 
So the doctor's office called again today. Gi doc left a note for the nurse to call me. Emilee has tested positive for Ulcerative colitis, Crohn's & she has delayed gastric emptying. The nurse said the hospital will call me Monday and schedule her endoscopy & colonoscopy. And then he is going to have her do the smart pill. Still learning to navigate through the sight & get reading all the posts. Kiddos are on spring break so it is hard to figure stuff out. lol
Anyone have any suggestions or opinions on schooling for next year. Emilee has missed over 50 days including her gall bladder surgery and home instruction this year. We don't have a school board that will understand there are days she can't or doesn't feel like getting out of bed. So question is regular school or home schooling? Opinions
 
I did find out today that the school will let her continue school & home instruction when needed. So she isn't home all the time & if she needs help she will have it.
Thank you Josephine!! <3 I am slowly and i mean slowly learning stuff. We did find out today that with the gastric emptying test done there was 66% left in her stomach. So not sure what all that means. I do know that anything over 10 bites of something is to much sometimes and it will not stay down. She started Pediasure(sp) the other day. Kept it down fine unlike most stuff she drinks. PTL :)
Still no appointment for endoscope or colonoscopy (sp) supposed to schedule this week sometime.
 

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