Ulcerative Colitis Tips


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11 Year Old With Ulcerative Colitis

Introduction:

Our 11 year old son was diagnosed with Ulcerative Colitis. As parents we have learned one of the hardest things is not being able to “fix” the problem your child is having. Also making decisions for your child when you don’t know if it could possibly harm them.

Symptoms:

Son is symptom free at moment.

Colitis Story:

Our son who is 11 was just diagnosed with UC. He had never been sick growing up and so this hit hard. He is seen at Childrens Hospital Columbus, OH. They scoped him, told us it was from top to bottom in large intestines. Sent him home on 40mg of steroids. Well he continued to lose weight and still had bloody stools. Took him back was admitted with IV steroids, not working after 6 days we were forced to make a dreaded decision of Remicade.

try remicade comic

They did the remicade on day 10 and it did work. We are just so scared of side effects as this is a decision we are making for our son not ourselves. He has had his 2 wk dose and is weaning from steroids now. We are so scared of remicade but yet was told the only other option is surgery. Our son is not wanting the surgery at this point. Childrens told us they have 500 cases of UC in kids with an 84% remission rate. 100 of these kids are on remicade. We just know there has not been enough long term studies with Remicade and kids? Any suggestions?? Or anyone going through same?

Before this our son had one other time of loose bloody stool for 2 weeks but was not caught by the pediatricians that it might be UC. They were running tests for parasites, c-diff etc. It wasn’t until a month after when he had a fever I took him in and had the doctor we really like that when asked if she thought his immune system was down due to the month earlier him having bloody stool did we get referred to GI. They told us if he every had it again to call so they could scope. 7 months later it came back.

Where we’d like to be in 1 year:

With a cure!

Colitis Medications:

I have to say Remicade did work but we are so scared of the side-effects.

written by “Worried Parent”




parents

16 Responses to 11 Year Old With Ulcerative Colitis

  1. Nikki October 18, 2012 at 7:58 am #

    I can definitely relate. My son was diagnosed with UC a year ago (he is now 10). We have been very lucky. He is doing very well on Pentasa and has had no flare-ups. His GI just had to scope him again because his labs were high, and we were all puzzled because he was having no symptoms. Before the colonscopy they brought up the possibility of Remicade and I felt the same way you did. I was terrified about the side effects and sending him to school with a weakened immune system. Luckily for now his colonscopy looked great and we will just continue on the Pentasa and will monitor his labs. It is a difficult place to be as a parent because there is so much uncertainty. Thanks for posting. I would be very interested to know how your son does on the Remicade.

    • CIndy October 18, 2012 at 9:44 am #

      Nikki,

      Thanks so much for your reply. It so helps to get other parents point of view, treatment etc. We were so blown away by this diagnosis as like I said he only had two real bouts. We are very lucky as far as growth so far. His weight is good and he is tall for his age at 5’1″ right now. We were told that it would not effect his growth as long as he is in remission. We are still thinking about what to do. One question I had for you is did your son have the three surgeries? They recommended if we do surgeries we do the J-pouch so he will not have a bag for long.

      Again thanks so much and we will be asking about the probiotic.

      Cindy

      • CIndy October 18, 2012 at 9:47 am #

        OK sorry Nikki…thanks you for your post and I am glad the Pentaza is working. I meant this more for Casey in Cincinnati as her son has had the surgery.

  2. Erin
    Erin October 18, 2012 at 8:04 am #

    Hi, I don’t know your side of things but I was diagnosed at age five so I can relate to your sons point of view. I started remicade when I was 14 and it worked for 4 years with no side effects at all. I recommend to you to listen to what your son says about his treatment plans because he is going to be the one who primarily has to live with it. you have to live with it too but its secondary for you.
    Remicade can be scary at first but after a while it get very routine, I found after a while it was kind of fun, me and my mom would take the day to go up to Boston children s hospital (about 2 hours away from my home) and spend the day up there it was kind of like family bonding.
    I know whats right for one person isn’t right for everyone but it really is a very good drug
    whatever you end up choosing best of luck to you, i hope your son is feeling better

  3. Polly
    Polly October 18, 2012 at 8:15 am #

    Hello Worried Parents,

    I’m so sorry to hear about what your son is going through and the decisions that you’re having to make for him.

    In addition to what you are currently trying, I would suggest going to the AHMA (American Holistic Medical Association) and looking for a provider near you. Many Docs have no idea how to treat UC, and maybe a nautropath would have some other suggestions for supplemental treatment for your son. Like you said, your little guy is so young and the long-term side-effects of Remicade are not yet known…

    As you will see on this site, many of us are believers in lifestyle changes to treat our UC. Probiotics, natural anti-inflammatories (turmeric, Vitamin D, Glutamine, Fish Oil, Omega 3, etc) and of course, DIET. We have many people following the SCD diet, or the GAPS diet, the anti-inflammatory diet, etc.

    Don’t be shy to get a second opinion.
    Hugs to you and your son!
    All the best,
    Polly

  4. Casey October 18, 2012 at 8:28 am #

    Hello neighbor! I’m in Cincinnati and my son goes to Cincinnati Children’s Hospital.

    He is soon to be 14 years old and was diagnosed at 10 years old. From the ages of 10-12 we tried everything. Certain meds would work for a short period of time and then suddenly stop being effective. Other meds his body couldn’t tolerate. Not only was the UC affecting his general health but also his growth. At 10 years old he was 50lbs.

    At 12 yrs old, we were at a point where he was steroid dependent (symptoms would immediately return once weaning down) and we were looking at Remicade or surgery. The side effects of Remicade terrified me…especially those side effects that *may* occur in adolescent boys.

    Because of a family history of colon cancer we always knew it was a matter of when, not if, he was going to have his colon removed because of the increased risks there. This was one of the hardest decisions I’ve had to make as a parent. In my head, I would rationalize that he could live without his colon… but not Hepatosplenic T-cell Lymphoma. I was told that the risk was really only prevalent when combining the Remicade with azathioprine or mercaptopurine (which my son was not taking) but I didn’t trust that. The word “cancer” scared me so much more than the thought of my son going through life without his colon.

    We knew we wanted to get my son to the summer so we did the initial induction of Remicade and 3 more treatments (it was the only way to get him off the steroids for the 6 months left in school). His colectomy was schedule in May of 2011, at the age of 12. He had his take down (reversal) surgery in July 2011 and he returned to school, on time, in August. It was amazing!

    During recovery he had a few moments of regret.. but they didn’t last long. He’s happy, healthy and active! He lives his life pain free. Because of the issues with being on steroids so many times and the constant on and off flares his height has really been stunted. His height is what has bothered him more than *anything* at this point. He’s currently giving himself growth hormone injections.

    If I could tell you one regret? It would probably be not acting sooner with the growth issue. Boys are so sensitive when it comes to their height..much more so than girls (when we’re talking short!). If that topic ever comes up, push to see Endocrine. Start questioning about hormone options. But, there is no time for “if I had known then…” moments. As parents, we do what we feel is right for our kids at that moment.

    Have you tried VSL#3 yet? It’s a probiotic that my son has been on since his diagnosis. If you haven’t, it’s definitely worth a shot. It’s prescription. Good luck to you! This forum is a great place for support and resources.

    If you ever want to contact me, for any information or concerns, you can reach me at brookech1 (at) yahoo (dot) com.

    • CIndy October 18, 2012 at 9:50 am #

      Hi Casey,

      Thanks for your post…I accidently responded to wrong post (Nikki) but if you could check out my post to her you will understand. My question about J pouch is to you. Sorry guess was just to quick to get my response out. This site has been great for us and especially since I decided to reach out by writing.

      Thanks,
      Cindy

      • Casey October 18, 2012 at 6:27 pm #

        We were told that normally, the surgery is done in 2 steps. Usually only in emergency situations would the need for the 3 step procedure be necessary. For my son, it was the 2 step. His entire large intestine and lining of the rectum was removed leaving the rectum muscle. During that same first surgery the jpouch was created. He went home with the ileostomy (bag) for 7 weeks. Actually, because he spent the first 2 weeks after surgery in the hospital, he was only at home 5 weeks with the bag. Then, he had his second surgery which takes that piece of small intestine and connects it to the jpouch. The first surgery usually lasts anywhere from 3-5 hours and the second is about 2-3 hours. My son had a little tougher road because he had previous GI surgery as an infant so he had loads of scar tissue, internally, to contend with – but his young age was a great thing when it came to things. 2 days after being home from his first surgery he was riding roller coasters! :)

        Even with his extra complications and extended hospital stays (during both surgeries), when asked, he’d never go back to all the medications (he was taking 26 pills a day at his worst) and the pain of UC.

        Please don’t take my post as trying to convince you to push for surgery. It’s what we had to do because medications just weren’t working anymore. I just like to let parents know that, while surgery is so scary and such a huge decision, there is life afterward.

        • Patti October 18, 2012 at 9:04 pm #

          Hi Casey,

          My son had severe UC and went from diagnosis to surgery in 4 months. Absolutely nothing worked, not even Remicade, and by the end he had a double Picc line for IV steroids, IV morphine and IV antibiodics for the C diff that he could not get rid of. He had his surgery in September of 2011 at the age of 9. It has been a rough year but I don’t regret the decision for surgery at all….I almost wish we did it sooned due to the incredible pain he was in and to the effects that all the steroids did to his body.

          Our surgeon said that my son will need 2 more surgeries but won’t do them until he goes through puberty to optimize growth. We are also looking at growth hormones. Have you seen any results with the growth hormones???? How is your son adjusting to the J pouch.

          Take Care,

          Patti

  5. Kyle
    Kyle October 18, 2012 at 1:00 pm #

    My heart goes out to your son and your family. I know how he is feeling, diagnosed UC in summer, on Remicade now, been on steroids for 3 months, tapering off now, Please let me know if I can be of any aid or encouragement to him, even to have a conversation please let me know. Praying for you guys!

    Kyle

  6. Peter October 18, 2012 at 2:39 pm #

    From my own experience. I was diagnosed with UC at age 12, and lived with the disease for 41 years. I never took steroids nor had surgery, but controlled my flare-ups with meds. For the first 8 years, I used Azulfidine, then switched to Mesalamine. When flare-ups were bad, I used the Rowasa enemas.
    I focused on diet to help my GI track, avoiding pepper, nuts, corn, popcorn, etc. Later in life, I found that avoiding dairy products helps (due to lactose sugars)
    I also started a program of daily aerobic exercise and continue to this day – I do believe that stress is a factor in this disease.
    I never let the disease dictate my life.
    The only side effect – I am the shortest sibling in my family (5’6); there is data that azulfidine can slow growth. Everything else – no problems. Good luck

  7. Adam
    Adam October 18, 2012 at 7:54 pm #

    Worried Parent,

    One thing I think might benefit you is to check out the Remicade Survey Results we conducted here on the site a short while ago. the link is here:

    http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    And there’s responses from 35 UC’ers who used/ or are currently using Remicade. There’s quite a bit of info there, but since its directly from the patient perspective I think its pretty valuable.

    I wish you and your son the best, no matter what, you’ve got to step back and give yourself a massive pat on the back for being your son’s medical advocate during these times. It must be so hard to be on the sidelines watching the UC play out, and I myself can’t come close to imaginging those feelings you probably have 24/7, but you are amazing for all you’re doing.

    -Adam

  8. Patti October 18, 2012 at 9:10 pm #

    Hi Cindy,

    Our son who was 9 at the time tried 3 rounds of Remicade. Unfortunately, it did not help him at all and we had his colon removed in September 2011. It has been adjustment but we are relieved that we opted for the surgery. Saying that, I hope that the Remicade works for your child. My son had no previous flare ups so when his UC presented it was so severe that nothing helped him. We were also afriad of the side effects but were willing to try anything to help our son.

    Good Luck to you and your family,

    Patti

  9. Lisa OH
    Lisa October 19, 2012 at 6:07 am #

    Hi Cindy. I am so sad your son has UC. No kid should have to go through that. It has got to be so hard to watch your child experience UC and not be able to ‘fix’ it. It sounds like you are doing an incredible job at advocating for him, which is so important.

    I was diagnosed earlier this year, none of the meds worked, including 3 Remecaid infusions, so I had a colectomy (on the road to jpouch). Also, I experienced recurring C Diff, which I’m finding is not uncommon in people with UC. Although I didn’t have much of a choice and the surgery route has not been easy, my quality of life has improved 150% NOT being sick, not worrying abt what agony UC has next, and not worrying about a compromised immune system.

    Sending healing thoughts your son’s way,

    Lisa

  10. Casey October 19, 2012 at 3:50 pm #

    Hi Patti!

    Since surgery my son averages about 6-8 bathroom trips a day. Having said that, there is no pain or blood associated with going. He’s never had any accidents and never complains about the frequency. The medications that he currently takes is imodium, vitamin D, a multivitamin, and the probiotic VSL #3. He’s had a couple bouts with pouchitis but a couple weeks on the antibiotic and it has been resolved.

    As far as the hormones, we are seeing slow progress. Like I mentioned above, that is my one main regret. I wish I started the hormone process sooner. We waited and waited because of my fear of side effects. I was then told that these hormones are just supplementing what his body is missing, nothing more. If I could do it over again, I would begin around the age of 11 or 12.. not 13.

    To be totally honest, I asked my son if he would rather go back to the UC or be stuck with the ileostomy… he said he never wants to go back UC. He’s sooner be “stuck” with a bag than the pain of Ulcerative Colitis.

  11. Sherry April 10, 2017 at 11:19 pm #

    I hope that someone here can offer some advice. I have 3 sons, ages 22, 14 and 12. When my oldest son was about 4, he started having “accidents”. We thought he was just rejecting his potty training and being stubborn. It took SO much patience….but he finally stopped having those accidents around the age of 10. He has had other intestinal issues over the years. But, we chalked it up to childhood problems that would resolve on their own because the doctors treated them as nothing.
    When my middle son was 6, he too started having the same issues of “accidents”. He was sent to a Pediatric Gastroenterologist. She never specifically used the term “Colitis”. But, she described colitis to a T. He was on medication until he stopped having the “accidents” around the age of 11-12. Again, he also had other intestinal issues that have been blown off by doctors.
    5 years ago, at the age of 44, I was diagnosed with Ulcerative Colitis. It took 2 months to get that diagnosis. And, by that time, my GI said it was the worst case he had ever seen in a first time patient. I’ve had constant flare ups, taken different medications, had precancerous polyps removed and had to have iron infusions for severe anemia.
    Today, the school called to tell me something was wrong with my 12 year old son & I needed to come to the school. They thought he was having an allergic reaction to something or having a seizure. When I arrived at the school, I saw my son….pale, trembling, doubled over in pain and having trouble breathing (the EXACT symptoms I have with a severe flare up). I immediately called an ambulance to take him to the ER. It was a waste of time. The ER doc found nothing because the pain was mostly on my son’s left side…..just like mine. I told the Doc about my own experience as well as my other son’s in the hopes he would check for colitis or at least refer him to a Ped GI. He blew off my concerns telling me that it is extremely rare for someone that young to have Colitis, even though his brother developed it at the age of 6. I’m not wishing this illness on my sons. It’s just that I have seen other signs in them and am concerned that if they do have a problem in that area, it will go untreated. All 3 of my son’s have been extremely healthy their entire lives. My husband and step son’s come down with colds, viruses, flu, bronchitis…..but, my son’s and I seem TOTALLY immune to it. Each of them has taken antibiotics only once in their entire lives. They are all VERY small for their age. My 22 year old is only about 4ft 4in. My 12 year old will soon be 13 and is the size of an 8 year old….weighing only 70 lbs. And, without a shirt on, he looks like skin and bones even though he has a healthy appetite. My gut instinct is that he needs further testing. But, my concerns kept being blown off. I’m convinced that everyone thinks I’m being over protective or that I wish this terrible condition on them. I pray that I’m wrong. But, I fear that it could go undiagnosed and they would be denied needed treatment. Since others on here have had experience in this particular area, I wondered if anyone can tell me if I’m just being paranoid or if my concerns may be legitimate. Thank you for any info you can give me.

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