new diagnosis crohn's colitis, child

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anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/8/2007 10:07 AM (GMT -7)   
my 10 year old has just been diagnosed yesterday with crohn's colitis and i feel lost, the doctor started him on lialda and it made his diarrhea much worse and the pain tremendous. I want to take him off but cannot get a hold of the doc. please does anyone have thoughts on this and has anyone tried treating themselves in a holistic manner/ thanks, A

Post Edited (anna paradise) : 9/8/2007 11:25:44 AM (GMT-6)


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/8/2007 11:45 AM (GMT -7)   
welcome to HW. Sorry to hear about your child, I too was Dx when I was a child I was 8 when Dx. I have never been on lialda, and my CD has always occured in my ileum. I would go to the ER if you cannot reach your child's Dr. Sorry I cannot help you any further with your qusetions but I am sure others may be able to answer some of your other questions.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2044
   Posted 9/8/2007 12:22 PM (GMT -7)   
Most dr.s have an emergency number just for this reason, but it sounds like yours hasn't. If I'm not mistaken, Lialda is a newer version of mesalamine. Mesalamine has been around for a while and while safe for many patients, some cannot tolerate it. If it were my child, I would stop the medication and head to the ER.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 9/8/2007 2:11 PM (GMT -7)   
Hi and welcome to Healingwell. I am sorry to hear about your son. I am glad that you found our forum though. I agree that the Lialda should not be making him feel worse.
If you haven't already, I would suggest reading back through old posts on the forum. Most of us have learned more about this disease from each other than we ever learned from our doctors. Just remember that we are not doctors, and you have to decide which information/ advice etc. is suitable for you and your son.
You may also want to visit the Ulcerative Colitis Forum. I also have Crohn's Colitis, and I can relate to the people with UC just as much as the people with Crohn's.

Keep trying to get ahold of that doctor.
Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
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anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/8/2007 3:24 PM (GMT -7)   
Thanks for your replies, my son is doing better, we halved the medication, the doc wants me to try another day.....I will look at previous info on this site, but my main question which I do not seem to get a clear answer for is: what is the main difference between crohn's, ulcerative colitis and crohn's colitis. before my son's diagnosis yesterday, i had only heard of the first 2. I would really appreciate your imput as i feel so overwhelmed..thank tou and all the best to you all, A

Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 9/8/2007 3:39 PM (GMT -7)   
Hi.  I have crohn's colitis also.  From what I have been told and learned about, it is both symptoms of crohn's and of ulcerative colitis.  Crohn's disease can effect any part of the digestive tract, and ulcerative colitis affects only the colon and lower.  I, too have often wondered if crohn's can effect any part of the digestive tract then why isn't the inflammation in my large intestine (colon) just included in my crohn's diagnosis?  My disease is in my terminal ileum and in my large intestine...
 
So, I guess i don't really have a straight answer here...  Anyone else??
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/8/2007 4:04 PM (GMT -7)   
Thanks Krysta...............i am so new at this, but it does seem that the term 'crohn's colitis' is confusing to a lot of people. i welcome any and all imput. maybe there is no straight answer.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/8/2007 5:10 PM (GMT -7)   
crohns colitis is crohns in your colon (lg. intestine).....it is not ulcerative colitis and crohns....

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/8/2007 5:53 PM (GMT -7)   
Krysta :)

chroniemomx2 clarified crohns-colitis for you perfectly...with crohns being able to affect any part of the GI tract from the mouth to the anus and UC being limited to the colon (lg intestine) and sometimes involving the rectom, that's what makes one of the major differences between the 2 seperate conditions....

Also, when CD or even UC is affecting the rectom the term proctitis is used, when CD is affecting your ileum the term ileitis is used...I too have had CD affecting more then one area at a time....when I first got sick 16 yrs ago it was in my ileum, colon, rectom and anus (perianal crohns skin tags)....but it cleared up in the ileum and hasn't returned, on the down side it's remained constant in my colon and anus, and comes and goes in my rectom...there's no rhyme or reasoning for any of that, it's just the nature of the beast...many only have small bowel involvement without ever having large bowel (colon, large intestine) involvement, but it's still crappy for everyone regardless.

Basically "itis" means inflammation.

there you have it, the straight answer you've been looking for, may still be confusing but anything with IBD is I guess...it's so frustrating, I hope your son finds relief very soon.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 9/8/2007 7:39 PM (GMT -7)   
Yeah, I know about "itis" meaning inflammation. That is one thing I remember from medical terminology from nursing school. lol. Jk, I remember more. Anyway, yeah I figured it was something like that. We didn't really learn all that much about crohn's and UC, though. They should really teach more about it, since so many people are affected by it!

thanks pb4 :-)
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 9/8/2007 8:44 PM (GMT -7)   
Anna, Lialda is a new medication, a form of mesalamine, which is an intestinal anti-inflammatory. Other medications in this class include Asacol and Pentasa, among others.

These medications are generally mild and have few side effects. HOWEVER, a small portion of people (maybe 5%) are hypersensitive to mesalamine and have bad reactions to it. This can manifest as worsening diarrhea, pain, etc, similar to the symtoms of Crohn's. If your child is having significantly worse symtoms after just starting this medication, it's quite possible he/she is hypersensitive to mesalamine. Some doctors are unaware of this possible reaction, but it definitely happens now and then and could be what's going on with your child. This should definitely be mentioned to your doctor.

As for Crohn's colitis, it's simply Crohn's disease that is affecting the colon. Crohn's disease can affect any part of the digestive tract from the mouth to the anus, but there are three most commonly affected areas, and hence three most common subtypes of Crohn's based on location of disease activity: (1) Crohn's colitis (Crohn's in the colon) (2) Crohn's ileitis (Crohn's of the ileum, the end of the small intestine), and (3) Crohn's ileocolitis (Crohn's of the ileum and the colon).

anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/9/2007 11:39 AM (GMT -7)   
Thank you all so very much, as devastating as its been to hear what my child has, this info helps. truly hope they get a cure..............love to all

sanfran
Regular Member


Date Joined Jul 2007
Total Posts : 56
   Posted 9/9/2007 12:30 PM (GMT -7)   

I'm sorry to hear about your son's diagnosis. I too have Crohn's colitis. Here's my understanding at the main differences.

Crohn's Colitis affects all layers of the colon, where as UC is just the surface layers. Also, surgery is a cure for UC. Remove the colon and your remove the disease. This is not the case with Crohn's colitis. Since Crohn's can affect all the different areas of the digestive tract, removing the colon does not cure it. The Crohn's could just show up someplace else. There are things that doctor's look for to diagnose CD vs. UC. It's important to understand and make sure that your son does in fact have CD. Though the treatments and symptoms are similar, there are some complications of each that are somewhat unqiue.

There is a ton of information of both Crohn's disease and UC available online. Google away and use this site as a starting place. I'm glad to hear that adjusting the Lialda has helped. I'm on Asacol which is the same stuff but you have to take tons of pills, 3x per day. Probably not the best for a 10 year old :) but there are other options out there if he can't tolerate that medication.

As other things that help, search this board for info on probiotics which naturally help stop the D and regulate the digestive tract. Also, my GI recommended that I keep a food diary so that I can keep track of what works and doesn't work for me. It's really helped me to identify and avoid those foods that cause problems.

Best of luck.

 

 


Dx with Crohn's Colitis July 2007
37 yr old working Mom with two beautiful little girls (2 and 4)
Prednisone (down to 15 mg), Asacol (4800mg), Vicadin, Imitrix and Ambien as needed
Just starting probiotics - Florastor (500mg)


anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/9/2007 12:46 PM (GMT -7)   
Thanks, actually trying to get hold of the doc again, hate weekends, because i feel lialda is the wrong drug for him (still making him poop more than before, plus much more liquid). I find that though google is certainly a great source of info, its also very depressing to read about. I'm going to post another question as I am very concerned regarding all this medication people seem to be on, to no avail. At this point, he was going 3 to 4 times a day(before lialda) and my thoughts are thats better than putting through all sorts of side effects. love, A

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/9/2007 7:55 PM (GMT -7)   
anna paradise,

So sorry for you son's suffering.

We all know there is no cure for this disease, but his crohn's symptoms will improve if you modify his diet and give him probiotics. Cut out sugar, preservatives, processed food, give sourdough or sprouted whole wheat/grain bread, and yogurt with probiotics. It's important to give him food that will assist with healing, not hurting. You can try the Maker's Diet, it helps too.

When it comes to kids suffering with this illness, I feel more awful for them. I hope your son gets better very soon.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/10/2007 5:39 AM (GMT -7)   
Hi and Welcome one of the reasons we take the meds sideeffects and all is to stop the progression of the disease and avoid complications as in abcess and fistula's and intensive surgery. Sometimes a med does not work so we try others to see what does .Also diet is something I find helps I follow low roughage it helps me I don't have the pain now.Some people here are taking the bigger meds because of complications they have had or the other ones were not working. It may take a bit of time to get things improved for your son but wishing you both all the best. I read the forums here and learned alot from others keep in touch and let us know how he is doing. lol gail
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