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13 year old daughter just diagnosed with uc

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Ulcerative Colitis
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Posted 8/16/2010 5:22 AM (GMT 0)
 

Hi...after almost a month and a half of stomach cramps and constant bloody diarhea my 13 year old daughters GI appointment was Friday the 13th.  He performed both a  endoscopy and colonoscopy.  Biopsies were taken and we will get those back in a week.  His diagnosis based on the colonoscopy was ulcerative colitus.  He has prescribed Mesalamine.  She also is pretty anemic so she is taking iron as well.  We just started the Mesalamine today and the iron yesterday she also has dicyclomine for the cramps which precludes the diarhea (hasnt helped much but she just started taking that too).  My daughter is a vibrant, outgoing, kind and very social child.  Our hearts are breaking with this diagnosis.  The cramps and diarhea has really taken a tole on her.  She hasnt quit seeing friends etc yet,  but I know she is afraid sometimes.  She's also extremely crabby.  (Which we dont blame her for that, who wouldnt be).  Any advice would be so appreciated.  The doctor says to give the Mesalamine a couple of weeks, she's very impatient and wants to be better right now!!!  Any experience with the Mesalamine and how long it will take before we see any change?  

Posted 8/16/2010 6:06 AM (GMT 0)
Welcome to Healing Well. You will get some help from amazing people in this forum.

Is your daughter on prednisone or just mesalamines? I was put on mesalamine -- oral (Asacol), but with that was prednisone. Prednisone stopped the flaring and Asacol was supposed to take over the job as I weaned off of prednisone. I don't think I would have gone into remission on Asacol alone.
Posted 8/16/2010 6:14 AM (GMT 0)
Hi 13Mom,
I can understand your broken hearts. Keep in mind that those who typically spend a lot of time on this forum are those of us who suffer more than most with this disease. Hopefully your daughter will enjoy long remissions once the Mesalamine kicks in!

Best wishes!
Posted 8/16/2010 6:36 AM (GMT 0)
13mom,

After being diagnosed with moderate to severe pancolitis in January2010 , I was put on Lialda (mesalamine) ONLY and within a week or so I was feeling much better and having more regular stools. Several weeks later I was pretty much back to normal.

However, 6 months later in July of 2010, I started (and am currently) in a bad flare. After a sigmoidoscope, the GI determined that Lialda worked temporarily, but isn't cutting it along. He put me on 50mg of Prednisone to try to control it and also prescribed Humira. I have been on Prednisode for about 3 weeks with a few improvements and I just started Humira several days ago.

So if your daughter is in a bad flare, or the original flare, maybe Prednisone will help her feel better sooner. However, I remember a lot of negative side effects of Prednisone when I was a teenager such as acne, insomnia, sweating, etc.

Good luck! Tell her she's not the only one and there are others who understand what she is going through.
Posted 8/16/2010 8:06 AM (GMT 0)
I never had much luck getting out of a flare with asacol. After i was diagnosed it took a course of prednisone to get me in remission. The asacol was very effective as a maintenance drug for several years however.
Posted 8/16/2010 10:57 AM (GMT 0)
Welcome to the forum, though so sorry to hear about your daughter's problems. 

I believe there are a couple of places online that focus on kids and UC, specifically check out pecanbread.com -http://pecanbread.com/p/intro/nt/introhome.html - it's all about something called the Specific Carbohydrate Diet, a special diet for people with severe digestive problems that seems to be very helpful for many people.

Good luck to you and hugs for you and your daughter.

Posted 8/16/2010 11:23 AM (GMT 0)
Hi and welcome.  I am sorry to hear that your daughter is going through this.  I often think how lucky (if that's possible with this disease, urk) I am that I was dx at 32 after I had dated, married and had children.  I cannot imagine dealing with this at 13, bless both your hearts!

Now, to the mesalamine...I started off on Asacol and put myself on a probiotic...this HELPED after about a week or so but did not make me symptom free.  I then added in the Rowasa enemas (I'm not thinking a 13 year old is going to go for that, but all I can tell you is what I know) and am in complete remission. 

What med and how much is she taking?

I hope she feels better soon!

 

Posted 8/16/2010 1:34 PM (GMT 0)
Truly feel your pain-all of our roads are a bit different. I have learned so darn much these past two years, and still don't know where to begin when a new teen is diagnosed. A few tips-if the colon is significantly inflamed, the Asacol or any 5ASA's have a slim chance to hold it. It needs to heal and that takes time. Teens immune systems are strong, so it's a tougher illness to get under control with the beginners drugs. Pred. has awful long term effects-my daughter hated it, but it may have saved her colon. Don't stay on it long, but keep the flare under control. Get to a EXPERIENCED, pediatric GI at a teaching hospital if you can get there-make the appt. today, in case it takes months. At least you'll have it-cancel if she gets better easily or quickly. Don't let the flare get too out of control, it can take months to get contained. Get the bllod tests ASAP for the next round of drugs-probably 6mp. The tests take weeks to get back, and the drug takes months to kick in-you won't have that kind of time if you wait too long to start the process. The 6mp, along with a small dose of Pred. and daily Asacol/Colazol may be the route for a tough case---and if even that is not enough, you can go the route of the biologics. But, one day at a time.... My daughter turns 17 next week, and this has been a daily struggle since 14 1/2."We" are in remission and considering colleges-there is light at the end of the tunnel.
Best,
Posted 8/16/2010 2:18 PM (GMT 0)
Hi, and welcome to the forum!
My son, also an outgoing and social kid, was diagnosed with severe pancolitis at 13, just over 3 years ago. After we took care of that initial flare, he's done fine, except for one blip this spring, which was addressed easily with a few minor tweaks of meds.
My son was put on prednisone as well as Asacol (mesalamine) so I can't guess at how long it will be until you see results.
My son's GI has promoted probiotics and has amazing stories to tell, of how they've helped.... has your GI mentioned them?
I agree with what Katmom said about a pediatric GI. We drive a distance to one affiliated with Yale. Even though I have lived with UC for 2 1/2 decades and am fairly knowledgeable about my disease, I am impressed with the slightly different tactics used on kids, and how differently kids can respond to meds.
Are you in the US? Our GI had insisted we get a 504 Plan in place to protect our son in school, and it's been a lifesaver when he has missed too many first period classes (morning tummy ache or bathroom time...) check out ccfa.org for a template for that, a brochure for teachers (I printed several and gave them to his guidance counselor) and other tips.
As you have other questions, please ask! And I hope the meds kick in pronto and help your daughter.
Posted 8/16/2010 3:22 PM (GMT 0)
My son was diagnosed at 15.  He started out on Asacol, and it would work for him off and on.  Asacol totally quit working and he was very ill for a relatively short period, his junior year of high school.  He managed to keep up a modified social life some how. We finally switched doctors, and voila.....all is well.  He takes 6 MP now, and it works wonders for my son.  He is a sophmore in college, and you would never know he has UC.  Some people suffer much worse than others, so for now, find a great doctor for your daughter that can help. If you don't like your doctor, find another.  It took 3 for us:)  Good luck, and think positive.  This does not have to be the end of her world.
Posted 8/16/2010 3:22 PM (GMT 0)
Very sorry to hear about your daughter's diagnosis. One thing to keep in mind is that the vast majority of people with UC end up with a good outcome, sometimes it just takes a while to get there.

I remember the doctor telling me that asacol can take a few weeks to fully kick in. Sounds like he wants to start off conservatively which I think is a good idea. You daughter is likely strong and in overall good health, so he has some time to slowly ratchet up the levels of medicine.
Posted 8/16/2010 10:44 PM (GMT 0)
My 17 year old daughter was diagnosed severe pancolitis Nov 09 and finally worked through that first flare (HB6.6) with pred and mesalazine. She has had other ups and downs, and is now on a low dose of 6mp(25mg) and weaning pred(currently 5mg) - but the single thing that has made the most difference to her symptoms is going onto a low fat/low carb diet. She is not on a pure SCD diet but the book and web pages give lots of good recipes and ideas. Although the rules looked daunting to begin with we have been getting closer to the pure SCD diet over time because it is not as difficult as it first appeared, and the allowed foods have been fine for her and she is now in full remission of symptoms. It is much too early to say diet has absolutely worked for her but the wind/cramping/urgency/blood/mucus have stopped since we changed diet and her most recent blood results are now at normal values. I will be finally convinced when she is completely off the pred.
It is absolutely the worst thing to watch your child dealing with this horrible disease, and at times you may begin to doubt if things will ever get under control, but make sure you find a doctor you can trust and read as much as you can. Concentrate on the paediatric picture, keep a food/symptom diary and keep asking any questions.
Sue
Posted 8/16/2010 10:56 PM (GMT 0)
I'm so sorry your daughter has received this diagnosis. While it is life-changing, most people with UC live full and fulfilling lives, and are well most of the time. As someone else said, those who come here are usually the ones having trouble. I have been in remission since 2006 with only occasional issues, usually when I take antibiotics.

You will find that some people are very reactive to diet, while others are not. I, for example, can eat whatever I want when I'm in remission. When flaring, I avoid foods that are hard on the colon - primarily high fiber, high fat or spicy foods. You may want to try keeping a food diary to see if there is a correlation between certain foods and increased symptoms.

This site is specifically for parents of children with inflammatory bowel disease (UC or Crohn's):

http://ibdsupport.dragonpack.com/

Good luck, and I hope your daughter soon becomes one of the majority of IBD patients, living a normal life.
Posted 8/17/2010 1:36 AM (GMT 0)
Thanks to all of you for your insight and suggestions in dealing with this.  The GI people in our town said that our daughter  was too young for them to diagnose/treat.  We had her consultation and endeoscopy and colonoscopy at Seattle Childrens, the doctor came recommended by a young person we know that has chrones/UC etc.  We really like him so far.  We do have a follow up appointment next week to get the blood work and biopsy results.   Thanks to all of you I will be armed with lots of questions, it was a little overwhelming on Friday so I feel a little bit more prepared for our appt next week.   I will definetly check out the forum for parents of children with UC.     Anybody know of a good forum for kids with IBD.  Maybe that would provide my daughter with some insight that things can be normal again.  Thank again.        
Posted 8/17/2010 6:41 AM (GMT 0)
I've had UC since I was a teen. Back then I was able to get into remission very easily with just mesalamine. It does take a few weeks though. I've had years inbetween flares and have lead a very nice life. She will get used to it and be a very strong girl because of it. I hope she responds quickly to treatments.
Posted 8/17/2010 3:05 PM (GMT 0)
If you have good insurance and she needs to go on a steroid, ask for Entocort. It still has scary side effects, but it's taken in the body differently than Prednisone and doesn't cause the scary on the outside and inside side effects a teenager would want to hide at home for.

As for the mesalamine, I started out with Asacol, and I moved onto Lialda (larger dose per pill, same as Asacol though). I've taken Lialda for 3 or so years. I did have medication induced pancreatitis, but that went away...and I still take it. It helped me A LOT in the very beginning, and I didn't need to take a steroid for a while, which was nice.

Sorry this happened at such a young age. I know the feeling...I was diagnosed at 19, but I had it for a while before then. =|
Posted 8/17/2010 3:42 PM (GMT 0)

laura220 said...
If you have good insurance and she needs to go on a steroid, ask for Entocort.

I don't mean to hijack this thread, but if you are in the U.S., how do you get Entocort? My pharmacist tells me it is not available here. I would love to switch to it from Cortifoam because less of the steroid gets into your system.
Posted 8/17/2010 3:51 PM (GMT 0)
C_G_K, oral Entocort also can help UC. I think that's what she meant. I think you're right about the enema.
Posted 8/18/2010 2:53 AM (GMT 0)

I am so sorry that your daughter has ulcerative colitis ...My son was diagnosed with proctosigmoiditis a little over 2 years ago when he had just turned 13. He is 15 now.    I remember all too well the shock and grief, and my heart goes out to you.

   

We have been through many medication changes since that time in an effort to find the combination that works the best.  My son couldn't even swallow pills when we started all of this and now he is much better at it than anyone I know...

There are so many differing philosophies in treating this disease.  Many times I’ve had to request that we be able to trial new things. 

Some lessons we’ve learned by trial and error: 

Not everyone has the pH in their intestines to be able to break the shell and dispurse the medication in Asacol and Lialda tablets.  My son's would come out whole.  The pharmaceutical reps tell the doctors that this is normal and fine, but common sense tells me that if a pill comes out whole and hard with the inner medication intact that it’s not doing anything!   We tried Apriso, but found that Colazal has seemed to work the best for him.  These are all 5-ASA medications.  

Another thing I have learned (from this site, I think!  Thanks, Quincy!) is that ulcerative colitis heals from the top down.   Meaning that the rectal area and the sigmoid colon are the first to flare/last to heal during a flare.  My son has used  Rowasa enema solution and Canasa suppositories, trading off with a night off in between each.  This seems to have worked well for him to keep that area “calmed down.”  Now we have moved to just Canasa suppositories every other night.  I was worried if a 13 year old would be willing and able to do this for himself, but he has been a trooper and has handled it very well.  He does it before he goes to bed at night. 

I have my son taking the probiotic Culturelle.  We’ve tried a few, including the expensive VSL#3, but Culturelle seems to be the one that works the best for now.  

One other thing that I would do in the future is to have stool samples sent for O&P and C diff toxin any time that there seems to be a flare up that is hard to control.  My son seemed to get worse and worse, so I called and requested that they do this.  Sure enough, he had C diff.  We put him on Alinia instead of Flagyl (due to the metallic taste that he can’t stand!), and I have him on Florastor twice daily in an attempt to prevent any further C diff infections.  

We kept a food diary for the longest time and have really only found a few foods that are pretty consistent in causing him problems.  Corn is the biggy.  Even when he’s doing well, this can cause stomach cramping and even a little blood the next day.  I was worried about too much milk during a flare, but he seems to do absolutely fine with it.  I try to give him eggs for protein and iron.  He was a little anemic for a while when the bleeding was bad, but now is off the iron pills.  (Another trial: to find iron pills that didn’t make him sick to his stomach.  We found that Bayer Fergon was the one he tolerated the best.  It is ferrous gluconate with a coating.)

He also seems to do better when he gets enough sleep....

I hope that your daughter does well with this and that the medication starts to help soon...

Sincerely,   Jo

 

 

 

Posted 8/18/2010 3:12 AM (GMT 0)
I was diagnosed at 18 after suffering for a long time with symptoms. I immediately went on Asacol (2 pills 4x daily) and Rowasa enemas am and pm. It took a month or so, but things got back to "normal" quickly. I still had to take a nightly rowasa for awhile to ensure everything was under control (fun times as I was going off to college, let me tell you!)

My advice would be to make sure your family doesn't act like poop is off-limits. I know that I never said anything about my symptoms for a long time because we didn't talk about poop in my house, and I was horribly embarassed about it. It sounds like you're a loving parent and only want what's best for your child, so keep listening to her and make sure she knows you're there for her (even when she's a crabby grump!). From the sound of it, I don't think you'll have a problem with that. :)

Good luck to you! I'm currently in a flare; however I will say that once I had gotten my initial flare under control, I was good to go until now. So it is definitely possible to stay in remission for long periods of time.
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