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Crohn's Disease
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Posted 10/7/2007 12:57 PM (GMT 0)
I suspect my daughter has crohn's and she is having a colonoscopy tomorrow. We will be starting the prep of miralax in a few hours then the enema tonight. I am so afraid this is going to set whatever this is off. Can these preps give you a flare? She has had a really bad week already. I just can't believe her strength! I am so stressed out about this. This is our last hope for an answer. I have woke up in the middle of the night the last two nights in a panic that I forgot to do her prep and we could not have the test. I am so crazy! confused
Posted 10/7/2007 2:20 PM (GMT 0)
Pattymary,

I've never used Miralax for a prep, I've had Go-Lytely, and Fleet Phospha Soda. I had some cramping, and of course, diarrhea. The enema's no treat either. The first time I had a colonoscopy, I had some ulcers in my rectum. The enema burnt, but I made it through it.

Good luck tomorrow, I hope you get the answers that you need.
Posted 10/7/2007 2:41 PM (GMT 0)
Pattymary, oh I feel for your daughter. We've all been there with one prep or another. I've never heard of anyone flaring with it.
Cramping and nausea are common, and lets face it Patty, if you daughter does have some flaring, she'll be in the right place
tomorrow. It's all very daunting, but please try to relax, these tests are done very frequently, and most of us have had lots.
By the way how old is your daughter?
Posted 10/7/2007 4:37 PM (GMT 0)
My daughter is 7 soon to be 8. I know today will be hard but I hope we get the answers we need tomorrow. If it is not crohn's I think they are going to call it ibs. This is really bad ibs. I don't want it to be crohn's but there is no treatment for ibs. We can't find any triggers except nothing in excess. One meal out does not bother her but maybe many meals out. Too much of certain things. I am journaling what she eats but nothing so far. I just don't know how to help my baby and the docs don't seem to know either. The only thing I can give her is lortab but that doesn't really work either and you can't give too much of that. I just keep praying! I FEEL SO HELPLESS!!!!!
Posted 10/7/2007 7:34 PM (GMT 0)
Oh my goodness, my heart goes out to you. To me it does sound a little too severe for IBS, but you can hope. There are certain treatments
now for IBS, how good they are, I don't know.
I will keep you and your little girl in my thoughts. Please let us know how things go!!

Ps. What is you little girls name?
Posted 10/7/2007 8:13 PM (GMT 0)

i had the miralax prep and it was very gentle on me. i had no cramps from it so try not to worry abou that at least. i had my scope this past week and i was really sore for a few days afterward but that is completley normal for me. mostlikely becasue the scope scrapes a bit in the inflames intestine. but i dont think it will cause a flare, it never has for me.

bunny

Posted 10/8/2007 12:26 AM (GMT 0)
I never used miralax as a prep but when it was still a script I was on it for my CD since b4 my Sx I usually had C. It did not cause cramping but I was only doing the 1 dose. Hope all goes well
Posted 10/8/2007 2:27 AM (GMT 0)
aww poor kid! and poor mom, too! i hope everything goes smoothly, as smooth as these things can go :/\

best of luck!
Posted 10/8/2007 5:24 AM (GMT 0)
i can help you with this question and totally relate to the fear. i have had crohns since i was 13 years old and am 40 now. the test are still the same as when i was a little girl. the prep is not fun. not fun at all. the prep cant throw you into a flair. if she is in a flair already the prep can be tough but just sit with her a remind her this is how the doctors can make her better and when you go to the doctors go prepaired. some times the prep still is working up until the test and she might have to go to the bathroom on the way to the doctors so you might have to pull over or just bring some t.p and a bowl and a change of clothes and remind her no matter what its okay what ever happens. there is nothing worse then not feeling safe when you have to go to the bathroom and you cant make it.
there have been times when i didnt clean out enough on the prep and the doctors still did the test. they will see what they need to see. dont stress out. she will feel it. they will make her well i can promise you that. if they had the knowlege and the meds that they have today when i was a child my life would have feen soooooo different. this is a lonly disease. just dont let her feel lonly and remind her that no matter what everything is okay. because it is.
i just had a beautiful baby girl three months ago. i am in a really bad flare right now and as i write to you i am remembering that im going to be okay. good luck and dont worry
Posted 10/8/2007 5:25 AM (GMT 0)
i can help you with this question and totally relate to the fear. i have had crohns since i was 13 years old and am 40 now. the test are still the same as when i was a little girl. the prep is not fun. not fun at all. the prep cant throw you into a flair. if she is in a flair already the prep can be tough but just sit with her a remind her this is how the doctors can make her better and when you go to the doctors go prepaired. some times the prep still is working up until the test and she might have to go to the bathroom on the way to the doctors so you might have to pull over or just bring some t.p and a bowl and a change of clothes and remind her no matter what its okay what ever happens. there is nothing worse then not feeling safe when you have to go to the bathroom and you cant make it.
there have been times when i didnt clean out enough on the prep and the doctors still did the test. they will see what they need to see. dont stress out. she will feel it. they will make her well i can promise you that. if they had the knowlege and the meds that they have today when i was a child my life would have feen soooooo different. this is a lonly disease. just dont let her feel lonly and remind her that no matter what everything is okay. because it is.
i just had a beautiful baby girl three months ago. i am in a really bad flare right now and as i write to you i am remembering that im going to be okay. good luck and dont worry
Posted 10/9/2007 8:58 PM (GMT 0)
Hey :)

I've had a fair few colonoscopies, and if she is scared you can ask for sedatives which make the whole thing go fast with no memory. And bowel prep is always going to be uncomfortable but afterwards you can still eat clear jelly (I think you US people call it Jell-o :P), I think anyway, so that might cheer her up..?

I had Crohn's from a young age but no one was able to diagnose it until last year (when I was 17) so she's very lucky to have you sorting it out for her. I hope she's okay :)
Posted 10/9/2007 11:50 PM (GMT 0)
i was reading all of your posts. and it gives me a flash back of my whole childhood. if you ever need to talk just let me know. i dont know where you live but i live in Los Angeles and i go to the IBD center. they are very well know and the doctors i see are reserch doctors and specializ in crohns. they are a phone call away. your daughter is so young. she has hope that i never had when i was her age. They can help her i am sure of it. Being reserch doctors they have the meds that have been approved for crohns available the day they are approved. your baby will get better and have an amazing childhood. she is in my prayers.
Posted 10/10/2007 12:02 AM (GMT 0)
When I was in the hospital before my colonoscopy when they initially found out I had CD, they gave me 2 glasses of water mixed with Miralax. I was so mad because I had already pooped my guts out. I thought what else could be left, but it's just the process that everyone has to go through. I did have a lot of cramping after I drank it and of course was on the toilet every five minutes. I thought I was dying b/c I was too weak to even get up. As soon as I would lay down I'd have to get up again. How frustrating and they say when your sick you need rest. I don't know about anyone else but there's never been a time that I have been able to rest in the hospital. Good luck to you and your daughter and I hope every thing works out for the better.
Posted 10/10/2007 1:59 AM (GMT 0)
sad
Oh, I feel so bad for your little girl, she must be so scared...and poor mom, you sound more worried than her (and probably are...haha). Be strong for your little girl and she will handle the procedure a lot better. The prep is no fun but it won't make her flare any worse than she already is, so don't worry about that. I hope that the colonoscopy provides some answers to why your baby is so ill. Our prayers are with you and your family. Remember, put on a strong, happy face for your little girl so she won't be so scared. Take care!
Posted 10/10/2007 4:39 PM (GMT 0)
Pattymary,

I have been thinking of you for the past two days. How did your little girl make out with the prep and the test? I hope everything went well.

Just wanted to let you know that I have been thinking and praying for both of you.
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