Can anyone relate?

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New Member

Date Joined Nov 2009
Total Posts : 1
   Posted 11/23/2009 11:42 PM (GMT -7)   
This is my first post on the forum. I'm a loving father of a 12-yo with Crohn's disease. My son Noah was diagnosed almost 2 years ago and it's been challenging for all of us, especially him. He takes a cockail of 6-mp, pentasa, and a few others but is sick almost every morning and frequently misses school. Last week we met with his teachers who are very accomodating but his grades have really suffered and he has almost missed 20 day so far and it's early in the year. He has a crampy abdominal pain (worse in the mornings) with nausea and sometimes it lasts all day. We took him to see his doc at Children's hospital last week and he didn't have much to offer except the same old "lets get some labs and a stool culture." I'm not really looking or expecting of answers here just thought someone might be able to relate. I really want to help him and nothing seems to be working at the moment. Any advice? I really think I'm just looking for support. It's been a real struggle for my wife and I.

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 11/24/2009 2:24 AM (GMT -7)   
I am so sorry to hear of the pain and anguish that your son and you family has gone through. I was a young man of 23 when I first really began to see the symptoms of this disease. I can not even begin to imagine what it must be like and the emotional and physical toll than it is probably taking on all of you. What you son is experiencing is somewhat normal for this disease that the problems that a flare up can have. The mornings are by far the worst time for me and it is amazing how sick you wake up and it can go away quickly also. The pentasa may also be contributing to the morning sickness as I really could not tolerate it myself. Unfortunately, you son is still pretty young and developing and I would try to stay away the stronger medications as long as he can due to the side effects. I have been on nearly all of the medications for Crohn's disease save it Tsabri, and have found Remicade to work best for me. These medications due care a high risk of things particularly in children and this is something that you would carefully want to weigh the options with his G.I. before going that route. It seems that everyone here tolerates different medications and diets differently and it is really a game of trying to find which one works for him. If the pentasa is not working then you probably need to look at some of the other 5 asa medications and first level drugs. Also, if his doctor does not seem to be treating his condition adequately, I recommend considering a second or third option with a different G.I. Believe it or not, there are G.I.s that know very little about this disease and really should not be treating patients for it. I had one of those G.I.s and it was a trial that I would not wish upon my worst enemy. I have finally found a doctor that believes in me and is working with me to get my disease under control but it took going to 5 different ones and an incredible internal medicine doc as my primary care to get that accomplished.
If I were to give you any advice it would be to continue loving and supporting your son unconditionally. The emotional strain is hard on the strongest of people, let alone a boy still finding his place in life. If he says that he is sick, believe him. If he says that he is in pain, believe him. There is nothing worse than having someone second guess you and how you are feeling. If he has you support it will help with his confidence as he battles this demon of a disease. His teachers may not be as understanding in the future and the best way to battle this is to educate them. I have found with my own professors and people in general, that the public knows little about Crohn's disease. Finally we are starting to see some commercials and some money is being spent on a cure and research but people do not know about this disease. Most will say that they know someone with it but will try to pass it off as a bad case of the flu. They have no idea. Prepare your son to be strong and ignore mean things that will be said and to be proud that he is strong enough of a person to fight this. If there is a kids support group in the area I recommend joining it so he can be around other children and teenagers with Crohn's. There is a summer camp that is advertised by the CCFA for kids with Crohn's and Ulcerative Colitis. You may want to look into that for him if possible. I did have a close friend whose son had a severe case of Ulcerative Colitis in the 8th grade. It was very hard on him because he was a star athlete at the junior high level and the high school would probably have started him varsity in both basketball and football his sophmore year. He got so sick and the steroids gave him that dreaded moon face. He never gave up to the love of his parents and had to miss his 9th grade year to be homeschool because he had his colon removed. He was told that sports were not in his future, but he proved them wrong. He was not able to play Qb in Football or pointguard in basketball, but he did become the top catcher in our state for baseball. He grew into a fine young man and even though he was still sick, he never gave up. He is now serving as a missionary for our church that we attend.
If your son keeps his head up he can't still live a great life. He is young enough that he can still obtain remission and have a lot of life to live. Don't ever give up and give in. There are a lot of options still there for you all such as diet and eventually the larger medications. Just continue to love him as this will be the best medicine he can get. It may not take away all the pain but it sure makes it easier to endure it.

Regular Member

Date Joined Sep 2008
Total Posts : 457
   Posted 11/24/2009 4:43 AM (GMT -7)   
I am so sorry your son is struggling. This disease can be so baffling to most people. I hope you find a light at the end of the tunnel very soon.

FYI - Pentasa also gave me severe morning sickness. Several times I got sick on my way to work. I switched to Azacol and the morning sickness went away.

Best of Wishes
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/24/2009 7:31 AM (GMT -7)   
Good point by Irishmom, maybe his meds are making him sick. Another thought is has he had a small bowel follow thru lately or a Catscan? I am wondering if he might have a stricture or some narrowing going on. You might want to ask them for one of those tests. Good luck and big hugs to your little guy:)

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/24/2009 9:59 AM (GMT -7)   
Hi sorry to hear your poor son is going through this i can relate to what your son is going through i was diagnosed at 13 and lost alot of schooling .Back then crohns wasn't that common it took the docs over a year to diagnose my parents were told allasorts, that i had a nervous stomach, eating disorder. finally i was put on anti inflamatories Salazophrine which did ok till i got to the age of 26. i was recently on asacol but that made me feel sick with headache i then went on to the sister drug Pentasa and seem ok on that hope they get you son sorted out soon Bev xx
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/24/2009 1:03 PM (GMT -7)   
Santoria...I know just how you are feeling..or I should say how your son is feeling.  I got sick when I was 15 and missed my part of my sophmore year and all of my jounior year of HS.  I was sick all the time with nausea and pain.  What helped me though was my parents got me on home schooling.  NY has a program where kids are too sick to go to school they have a teacher come to your home to give you lessons.  I did this my senior year and graduated on time because of it.  It also helped me mentally as it was on my terms.  If I needed to go to the bathroom..I could.  You might look into this for your son.  Once he starts feeling better you can always stop it.
Good luck and I hope he feels better.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Veteran Member

Date Joined Oct 2009
Total Posts : 1070
   Posted 11/24/2009 9:07 PM (GMT -7)   
I was thinking the meds could be responsible for some of his symptoms also. Would it be possible to moderate them and see if some of his symptoms subside? Ask your doctor. Try to watch his diet. That is something I failed to do in my young life and I think it could really help. Home schooling or a tutor might help with the school grades.
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help, especially the youngsters.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 11/24/2009 10:07 PM (GMT -7)   
Please be aware that 6mp is a pretty harsh drug, and has the ability to affect the pancreas. If his pain is high up in the stomach
region, and he continues to be nauseated, I would ask to get him checked. I was badly affected by 6mp and would not want it
to happen to anyone, especially one so young. I know we all react differently, but better to be safe than sorry. I hope I didn't
frighten you, and I'm probably wrong, but just wanted you to be aware. Good luck...

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 11/25/2009 12:36 AM (GMT -7)   
I did not catch that your son was on 6mp and that is really something that needs to be considered at such a young age as a risk. Even though I had great relief when I was a mixture of 6mp and remicade, I was always nauseated.Is your son taking a folic acid supplement with it? I know that when i started taking the folic acid, it really helped with the side effects. I also found that I had elevated liver enzymes and it had an effect on my ability to have children now. That is why I would really look into if it is really giving your son enough relief to make it worth the risk. Although it supposedly did not eliminate the chances of my wife and I having children completely, it has made it so that i am now on testosterone injections monthly. If he is already on 6mp you may want to ask your doctor about remicade, humira, or cimzia.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 11/25/2009 1:08 AM (GMT -7)   
Oh my goodness, my heart just goes out to kids who get this so young. Mornings are TOUGH for a lot of Crohn's patients. The earlier I get up, the longer I'm gonna be in the bathroom. Sometimes it's just a cramping up attack, and others it's diarrhea. But getting up early is not my friend, even though I'm not in a flare.

I think the others have given some great advice, and things you can look in to. There are other educational options out there if need be. They have virtual public schooling that can be really nice, since you don't have to get up early, and you can use a bathroom any time you want. Do school work any time you want (when you feel good enough to). A lot of them provide everything for free, including curriculum and a computer. They have field trips and get togethers for the kids. Just another option to think about, if it comes to it. We homeschool our son (not for health reasons), and it has many advantages. Good luck!

Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 11/25/2009 1:11:03 AM (GMT-7)

Regular Member

Date Joined Feb 2004
Total Posts : 53
   Posted 11/25/2009 2:48 AM (GMT -7)   
Sorry to hear that your son has been so sick, and that you and your wife are having a hard time with it all. I wish your son the best of health. It is awesome that you care so much.
Symptoms since 99', Dx 2003, Right Hemicolectomy 2004, Trying to find the magic combination to manage this silly disease :)

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