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Hugo's Mom
New Member


Date Joined May 2010
Total Posts : 6
   Posted 5/13/2010 1:12 PM (GMT -7)   
Hi Everyone,

I started peaking around, and decided to join.

My son will be 8 in a few weeks, and starting the week before Xmas, he has serve constipation and stomach pains. Then he started to go after lots of OTC and many visits to the ped. He still was having very bad stomach and anal pains. So finally we went to a specialist. They started with a colonoscopy and endoscopy. Originally they said all looked good except his esophagus was swollen which was odd since he didn't complain about that area.
Then the biopsy came back and they said he had mild CD. But wasn't 100% sure. So after many arguments with the insurance company he just did the Camera Pill at the end of last month. We are still waiting to hear on that.

He has terrible constipation. Then if I get him to go he has leakage problems. Terrible for a little boy in 2nd grade. I am open to learn more, and try new things, to keep him more comfortable. I just want him happy and healthy again and to start putting on some weight.

Thanks in advance for any help.

Hugo's Mom

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/13/2010 1:35 PM (GMT -7)   
Hi and welcome
i am so sorry for what yr lil guy is going thru it has to be hard i go thru this and im many many yrs older
know we are here for you to come to cry to n get input help n support this place is great
the ppl here are very knowledgeable n supportive
stay with us i know you will get some great input

huggs
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/13/2010 1:39 PM (GMT -7)   
Hi Hugo's Mom,

And welcome to Healingwell. Only sorry to hear that your little guy has this darn disease. I suffer with more constipation that I do diarrhea, and I have to take stool softners nightly in order to keep things softer and easier to pass. At this point, I would not use laxatives on him until he has a firm diagnosis, I think they might cause more problems for him. You might ask his doc about him using stool softners. Good luck and we look forward to hearing how his pill cam comes out.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 5/13/2010 8:55 PM (GMT -7)   
Wow, 8 years old. So sorry he has to go through this . There are some moms here with youngsters that have CD. I'm sure they will show up with some words of wisdom . Best I can offer is what I did. Keep a log book of what he eats and how it effects him. Also keep track of any meds he is given and any effects or side effects, plus any tests he has . All this will come in handy later and you will be glad you kept track when the doctor asks you questions and you have to strain your brain for answers. Hope he feels better soon and can get back to being a kid again.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/13/2010 9:48 PM (GMT -7)   
Hi, and welcome! 
 
My daughter used to have constipation, but it settled down after she started eating yogurt each day. She makes homemade yogurt, aged 24 hours to get rid of most of the lactose (plus is more powerful, with more good bacteria). But even store-bought helped. 
 
 

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/14/2010 8:27 AM (GMT -7)   
 
Hello,
Sorry I missed this post :( I'm another mum whose son has been diagnosed (last Nov aged 16) Although he had it for a few years prior to diagnosis :(
 
You must be feeling quite gutted about this possible diagnosis, relieved(at a diagnosis) but gutted!!
My son too had the pain and constipation and due to the inflammation internally so little was getting through his system(all backed up) that despite being hungry he could never eat more than a mouthful or two.
If he is inflammed the chances are that he will not put on too much weight, once they have that under control you have half a chance.
A lot of children are given enteral nutrition to help(liquid feeds that contain calories and nutrients the body needs in a partially digested form) Some children manage to drink them quite happily but others may need a nasal tube that runs down into the stomach. In some cases it is given as an alternative to drugs but sometimes the drugs are needed too (as in my son's case) Once my sons inflammation was tackled he gained approx 22 lb which was great
 
If like me, you will be reading all that you can find-treatments,drugs, theories on what causes it, outlook etc but try and take one day at a time, too much info at any one time doesn't do you any favours. Little by little :)
 It may be a bit of a journey but with a great medical team behind you, a little knowledge and lots of questions(never be afraid to ask questions of them) your son's condition should improve. More than likely there wil be ups and downs along the way until they hit on what is right for him (seems to be different for everyone) but it will get there!!

Hugo's Mom
New Member


Date Joined May 2010
Total Posts : 6
   Posted 5/17/2010 10:58 AM (GMT -7)   
Well I got the phone call this morning from the nurse. They have reviewed his his pictures from the cam pill. and they have confirmed he has CD. We go in next Monday to review the results and I guess start some kind of treatment plan. I just can't believe my little boy has this. Not that anyone should have it. But I wish I could instead of him. Time to start writing all my questions. so I don't forget!

THANKS FOR ALL THE WELCOMES AND SUPPORT!

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/17/2010 11:18 AM (GMT -7)   
Know we are here for your son n you during this rough go
ask questions for sure
we will help u through this

lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
MEDS.....LYRICA..DILANTIN.. PENTASA.. FOLIC ACID.. MTX..ATIVAN PRN..DIAZEPAM BID...TRAZADONE

DONATE TO www.Healing Well.com
LYN


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/17/2010 11:31 AM (GMT -7)   
 
Take a deep breath now!!
At first everything almost seems surreal, so many  tests, tablets, diets and a whole new vocabulary of medical terms associated with Crohns.
It will take a while for everything to sink in and for treatments/medication to kick in but it will happen-just expect to go through emotional highs and lows (especially initially) as you go along this journey with him.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/17/2010 1:23 PM (GMT -7)   
Hugo's Mom, I know it's bad to hear the dx of Crohn's, but at least you know what it is and can start treating it.  It took 8 years for my dx and I went through so many unnecessary (and unhelpful) tests and so much pain that could have hopefully been lessened had I been on the right meds.  Also, I know my mom felt guilty for so long, wondering which parent I "got the Crohn's from."  Don't ever beat yourself up thinking one of you gave this to your child.  I know you would much rather it be you and not him, but we can often deal with it better than our parents can, better than our spouses can, etc.  It will make him a stronger person and hopefully appreciate the little things in life more.  It will make him more understanding about other people's problems.  I miss less work than "normal" people because I'm used to dealing with pain and a little bit of it doesn't make me call in like other people do.  So, there are good things that will come along with this.  Try to focus on them so that he can learn to do the same. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 5/17/2010 4:02 PM (GMT -7)   
Hi Hugo's Mom, I'm so sorry for you and your little boy. the good news is that he has a diagnosis, so maybe he can get treatment and feel better. I am a mom too, and my heart goes out to you. Ask as many questions and for as much support from you need from this forum. When I was first diagnosed, I couldn't live without this site. Now I'm in remission, but I still hang out to try to help others.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 5/17/2010 7:49 PM (GMT -7)   
Welcome Hugo's Mom!
This is a great place for you to be and ask as many questions as you have! Can't imagine what you must be feeling about your little guy. At least with a diagnosis you can start to move forward!
I agree with what most people said here about keeping a diary about what he eats, meds, and tests. Seems like every time you go to the Dr. it is good for you to have a copy of what's gone on!  I have a file cabinet and I just file everything from tests, to hospital stays, and now my disability papers:(
I was dx in 05...but looking back...I was a miserable kid. I can look back in my life and see times that I was probably flaring and didn't know it. Possibly as young as 2nd grade for me.
One thing I'd like to add..is I keep a med list on my refridgerator..I update it every 3 months or so. My daughter (a nurse) insisted I do this. It's been a life saver! Everybody in the family know's that's where it is and I've used it many times in a hurry...cuz' when you need that information it's usually quick and you don't have time to go over and are usually in NO mood!:)
Heather
 
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/17/2010 10:20 PM (GMT -7)   
Welcome Hugo's Mom, you are getting good advice. Other things you'll need to follow up on is blood tests, especially for vitamin d levels and b-12 levels. Crohnies need lots of calcium way more than the average child. He'll also need vitamin d so his body can use the calcium. Hugo also may not have enough b-12 if the area in his intestines where the body absorbs b-12 is diseased. That area is called the terminal ileum which is the last part of the small(ileum) intestine. I'm glad to see you here to get yourself educated about crohn's. Remember there's no question you can't ask here that will embarase(sp?) us, we talk about some topics that are certainly not for normal conversations. Ask away. Looking forwards to getting to know you! Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Hugo's Mom
New Member


Date Joined May 2010
Total Posts : 6
   Posted 5/18/2010 7:33 AM (GMT -7)   
THANK YOU ALL VERY MUCH! there is so much to learn! I will check on the vitamin D. I have actually cut down his milk intake trying to get him to drink more fluids to keep him hydrated. And he won't let me mix the mirlax in his milk. lol So we have been trying all kinds of stuff so he will drink enough.
Hopefully we will get more answers on Monday when we go back in. I will start the food diary asap!
THANKS AGAIN!!!!
My son who is almost 8 was just dx with CD.

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