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Posted 1/19/2011 2:06 AM (GMT 0)
MTK957

Thank you for your advice!! I will definitely have to try the clear liquid diet. It really kills me to know that drs today will not search for the proper diagnosis for their patients. Instead they take your money and send you on your way. I am tired of fighting. I have health issues myself and it is very irritating that I am having to fight with these drs to get answers for my son, when they should just do what they are paid to do. They don't care about patients anymore. it boggles my brain. I am glad that you were finally diagnosed and you are receiving the treatment you need. I hope you are well and I hope you continue to be well. From what I have read on here, Crohns sounds like a scary disease to have. I don't know what I will do if my son has it. I do know... I will deal with it and teach him how to cope with it in his lifetime. My family means the world to me and I will not continue to allow this "disease" to haunt my son and his childhood.

Enough rambling... His appt is on Thursday morning... problem with the clear liquid diet is they will not follow that at school...

Thank you MTK957, for your input. Its very much appreciated.
Posted 1/19/2011 2:19 AM (GMT 0)
My son would go DAYS without going #2 and would scream and suffer and I had to bring him to the hospital for an enema that didn't work too.

Here's what I did that helped (I did all of them daily for 2 weeks and now as needed):

1-2 tbsp of lactalase: which breaks up the poo

1-2 tsp. mineral oil: which makes it nice and slippery so it will come out easier and gets the intestines movine

metamucil: I can't remember what this did, but I think Nanners explained?

Udo's children's multi-probiotics: good intestinal bacteria that also helps regulate

Hope he gets relief soon!
Posted 1/19/2011 2:40 AM (GMT 0)
Roni

Thanks so much for your advice... did you ever take him to GI drs? I am so sick of going to dr after dr... they don't do anything other than tell me to try this or try that... I have tried everything and even what you are describing i have tried... except for the lactalase... never heard of that.. and i give him miralax instead of metamucil.

Anyway, Thank you again... I will definitely try the lactalase with the miralax...
Posted 1/19/2011 3:12 AM (GMT 0)
I took him to a pediatrician who knew what he was talking about.

But if you think this can be something more serious, by all means, take him to a GI and get bowel xrays to look for blockage or narrowing.

The other think I did with my son is feed him lots and lots of blueberries and temporarily take out foods that bulk, like bananas, rice, oatmeal, etc.

I think part of his issue is he either didn't get the urge or he kept ignoring the urge. And when he finally pooped after days and days of not going, his poop was so humongous, it was scary!

So I was so glad when the pediatrician told me to do the lactalase, mineral oil, and metamucil combo. Every since then (about 2 years now), it's not nearly as bad. Now, every day or every other day, I make him sit on the toilet and try to push out a poo. We're both happier now. :-)

Ah, these poor kids...
Posted 1/19/2011 9:16 AM (GMT 0)
One other thought-I have heard of children(especially younger ones) having a fear of going to the loo and this fear is so great that they can actually stop themselves going. All it can take is one uncomfortable experience/pain and the child literally 'puts the brakes on' going anymore. Eventually some will make it's way out either through seepage or with pain(cause of holding so long) and the whole cycle starts again.
I would imagine that this prob most unlikely because of what he has had to 'make' him go but it may be another avenue to explore.
Posted 1/19/2011 3:35 PM (GMT 0)
Metamucil is a fiber supplement that will bulk the stool. Miralax is a laxative? stool softener? The two have nothing in common.

Sorry this has been such a challenge to you. I hope you find a resolution soon!
Posted 1/19/2011 10:02 PM (GMT 0)
kjones27, A relative of mine had a condition called intessuption:

Intussusception (in-tuh-suh-SEP-shun) is a serious disorder in which part of the intestine — either the small intestine or colon — slides into another part of the intestine. This "telescoping" often blocks the intestine, preventing food or fluid from passing through. Intussusception also cuts off the blood supply to the part of the intestine that's affected.

Surgery corrected the problem. I would suggest you ask your sons doctor about possible explanations. 45 days seems too long to be brushed off. I hope you get to the bottom of this.
Moodindigo
Posted 1/20/2011 12:21 AM (GMT 0)
moondindigo

Thank you for your reply. I will definitely talk to his dr about this. He is actually scheduled for an appt in the a.m. with the pediatric GI. I am sure they are going to want to do the Barium Enema so they can do the lower GI xrays. I am very nervous, as this is finally a step to finding an answer. I also took him Monday for blood work, the only thing i remember that is on it is celiac disease. Hopefully everything turns out normal, but i almost pray that it shows something so I don't feel like I am at a dead end street again.

Again, thank you to everyone on here for expressing their concerns and love.
Posted 1/20/2011 2:25 PM (GMT 0)
Hi there, just a quick reply to your question about my son. He was diagnosed last year. It started with him having an anal fistula which he had surgery on. We thought nothing about it afterwards as he healed quickly and well. He started complaining of sore tummys now and again and i also noticed his tummy got really bloated looking so i took him to his doc and they sent him to hospital for colonoscopy, endoscopy and camera capsule. Came bak that that he had crohns. That was his only symtoms as he doesnt get diarhoea or tummyaches often( apart from last couple nights after he drinks the tea n biscuits). As for your doc saying about 6 year old cant have crohns, well, my friends little girl was 2 years old when she was diagnosed, she is 17 now with her own baby!! Also, my son can get constipated too, but they say it goes one way or the other, he never had fevers etc either. I hope you get answers soon for you son. take care. xxxx

 Forgot to say my husband also has mild crohns. xx

Post Edited (dodie) : 1/20/2011 7:28:50 AM (GMT-7)

Posted 1/20/2011 9:52 PM (GMT 0)
Hi Kjone27,
I'm so sorry about your little man. I want to tell you about my daughter. She just turned 3 and all of 2010 was the worst year for our life. She had the same sever constipation as your son. Nothing was done until she had bladder pain and wouldn't drink. She was than sent to the best pediatric gastroenterologist in our town. He immediately took her off all cow's milk, and said she should only have soy products. He said it is usually an allergy. He ran blood test and called me in 2 days and scheduled an egd and colonoscopy because she had IBD and celiac markers. It came back she didn't have either, but had some sort of allergy. He told me she was to young to be tested for allergies. Shortly before her test she went to a pediatric urologist who said she was going to have long term bladder damage if her intestine didn't shrink back to normal. He upped her Miralax and Krystalose to the point I was scarred she would overdose. At 2 years old she was taking 4x the adult dose and still nothing. We went back to her general pediatrician for a well check and I was telling her that I was scared nothing was working, and the urologist seemed angry that her bladder was still being harmed, as if I wasn't following directions. She reviewed all her charts with me at that time. She agreed her colonoscopy looked like an allergy, but didn't think she was to young to be tested. She immediately sent her to a pediatric allergist to be test. So after a year of thinking that my baby girl was going to die(I truly felt her intestine would rupture), no one was going to help her, and she was just getting worse.... Well, with in 30 minutes of her allergy testing she had a very strong allergy to SOY. It was that simple. She is now 3. healthy, happy, goes everyday and had a clean bill of health from her urologist and she gained 4 needed pounds in 6 months. Sorry for the long post, but it's been a long year. I wont tell you not to worry, that's what helps parents fight for their kids. I wish the best of luck and hope your little man feels better soon.
Posted 1/21/2011 12:25 AM (GMT 0)
Nelsyd

Thank you for your post! I am very glad that your daughter is well again. I know what you felt when you were going through that. I did however take my son to pediatric GI today, i have to give him 12 doses of miralax on saturday along with 2 other medications to "clean" him out. Then they want to do some test where they will put a catheter in his rectum and blow up a balloon to see how much his colon has stretched out. then an MRI to check on something with his spine... they want to run all other kinds of test too.. As stressful as this sounds, i am actually relieved because i feel like i am finally getting somewhere with these drs.
Posted 1/21/2011 12:52 AM (GMT 0)
Hope you get an answer soon, kjones.
Please let us know what they find. Hopefully, it won't be very serious. :-)
Posted 1/21/2011 12:53 AM (GMT 0)
I'm glad you found someone to help. I will be thinking of him, and hoping it's something minor. Please keep us posted.
Posted 1/21/2011 4:47 AM (GMT 0)
I just want to thank everyone on here for their prayers and concerns. I will keep you all updated with his condition and diagnosis. I am very glad that i found this site... gives me a little peace!

:-)
Posted 1/21/2011 6:55 PM (GMT 0)
Kjones, I think you have found the right DR. Let us know how it works out!
Posted 1/23/2011 1:43 AM (GMT 0)
Hi KJ. Sorry I didnt get back to you last week. I just got back, was in the hospital for my first humria dose and getting more blood and iron. You ask about when I was nine. I had lots of pain, cramping, bad constipation, fevers, fatigue, and no food look good. After a year of misery they found my blockage/ fistula by my rectal area. I was told I had stomach flu, a bacteria infection, sprue, cancer, and my favorite bad genes. The difference was when I went to adult dr. because in my city I lived in there was no kid dr. My parents took me on vacation to Utah and when I was there, I got sick and went to a Kids GI. She caught what I had and thank goodness ( not to scare you) ], if the blockage went untreated much longer, it would have killed me. Any more questions, please let me know. Good luck to your Kid. Mr.d
Posted 1/24/2011 2:17 AM (GMT 0)
Mr. D

Thank you for your response! Sorry to hear you that you were in the hospital again... I hope the humira works for you! I have been to yet another kid GI and they want to do some further testing... Hopefully it's nothing. I had to give him 12 doses of miralax over this weekend and he did finally go (what a relief) and i make him sit on the toilet every night before bed to get him to go... it has been a success! But that doesn't mean it doesn't happen again... this is the same routine every month and i think we are better and 2 weeks later we are back to the same thing. I am not sure why, but the doctors insist that it is not crohns and they won't test for it. I want to test every possible avenue. just to be safe.

Again thank you for your response, I hope you are well soon!!!
KJONES
Posted 1/24/2011 4:33 PM (GMT 0)
KJones, I think the new GI is going to look for a neural tube defect on the spinal MRI. I hope that you get some answers soon!
Posted 1/26/2011 2:25 AM (GMT 0)
kazbern

Thanks for that info... I totally drew a blank on what it was that they were going to do... I am not sure i understand what this has to do with constipation though...
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