A Child with UC

Introduction:

My name is Mark. I have a son who is 11 and was diagnosed with UC when he was 9. My wife and I are trying to find as much information as possible on children with UC.

My Son’s Colitis Story:

My son is currently in the middle of a flare up. It has been ongoing for a month and a half now. He is on a round of prednisone and seems to be on the way back up. This is his third major flare and is by far the worst. His first flare up was three years ago, and was preliminary diagnosed with UC, about a year later he had another and was confirmed to have Ulcerative Colitis.
We originally went to the University of Iowa for treatment but have since switched to the Mayo Clinic in Rochester, MN. His flares seem to be in the fall. All three major flares have started in late July through early August.
Our biggest concern has been the drugs that the first doctor and now his current doctor want to place him on. Last year his first doctor wanted to place him on asighaprine (not sure on the spelling) which the first line in the warning section stated that this may increase you chance of leukemia. Now the current doctor wants to place him on Remicade (again not sure of the spelling).
My wife and I do not believe his symptoms match with this harsh of a treatment. Once again because of the possible side effects. I mean holy cow this is an 11 year old boy!! I would rather approve a partial removal then subject him to the possibility of long term side effects. If he was an adult and made his own decision than so be it. Remicade was only approved for children last year. We are not going to chance it.

Is there other people on here who have children with UC? 

I would like to read or hear about their experience.

I have been looking into natural herbs and alternative treatments. I just started looking into the SCD diet. Any other suggestions would be welcome.

written by Mark

submitted in the Friends and Family of Colitis Patients section





40 Responses to A Child with UC

  1. Casey September 6, 2012 at 10:10 pm #

    My son was diagnosed at age 10. By the time he as 12 we were planning the surgery to have his colon removed. He was to the point of being dependent on prednisone and staying on the steroid, forever, was not an option. He had been on every medication available, including Remicade. Once we only had the option of Remicade I knew our decision was made for us. There wasn’t a chance I was going to keep him on such a harsh drug for any longer than he needed to be. Also, colon cancer is prevalent with the men in our family so it was never a “if” but a “when” when it came to the idea of removing his colon. We wanted to be in control – we didn’t want the disease to dictate an emergency surgical situation. And, as much as we wanted to wait for him to be old enough to make the decision for himself…it just wasn’t an option.

    He had just enough infusions of Remicade to get us to the end of his 6th grade year. During the summer, before 7th grade he had his colon removed, a J-pouch created, and was reconnected. He lived with the ileostomy for 7 weeks before the takedown and reconnection. During that time he rode roller coasters, went on vacation, played basketball – lived a normal 12 year old boy life. He was back to school on time and has since been enjoying life, UC free. His age was a blessing during his healing. Everyone was amazed. Now, he still has his share of issues. He takes a lot of Imodium daily, he goes to the bathroom 7-8 times a day but is pain free. During the summer of his surgeries there were a few times that he regretted the decision. His recovery was not text book and had a few complications. Now, over a year later – at the ripe age of 13, he would never go back to life with UC.

    Surgery is a huge decision and I am not posting to sway you toward it or against it.. but if the time comes know that there is life post colectomy.

    What he is now dealing with is his growth. Being diagnosed so young, losing so much weight, being forced to stay on prednisone for months on end – all affected his growth, and is common with children with IBD. He started growth hormone injections (another treatment that I wish I had agreed to earlier than I did…) and has seen a gradual improvement in that area too.

    Good luck to you all! If you want to contact me feel free (brookech1 (at) yahoo (dot) com)

  2. jen September 7, 2012 at 6:20 am #

    I have uc but so far my children have not. They do have a lot of stomach/gut sensitivity. My son is lactose intolerant and experience other uc symptoms. He doesn’t have blood or mucous so I haven’t taken him into specialist yet. I did take him into the regular doc and they said he has constipation. My daughter is sensitive to certain foods. I am curious what symptoms did they have and what made u decide to take your child into doc? I often wonder if my children are just mimicing my behavior.

  3. Kathy September 7, 2012 at 8:19 am #

    Hi Mark – are you on Facebook? I have a 4 year old with Crohns – originally diagnosed as UC at age 2, she had a colectomy at age 3 so I have seen the worst of this disease.

    Here are 2 parent support groups for parents of kids with IBD – they will have tons of advice for you:

    Sorry copying the links didn’t work, here are the names of the FB groups – just type in the name under search in FB and they should pop right up:

    1. Alternative Treatment for Children with Crohn’s or Ulcerative Colitis
    2. Parents of Children with IBD

    The Alternative group will have TONS of resources/advice on SCD, supplements, etc. The parents group is more traditional based but is a FABULOUS support group.

    I hope this helps you.

  4. Charlina September 7, 2012 at 9:07 am #

    Mark, I have a daughter who was diagnosed at the age of 7 she is now 21 and a college senior. We have run the gammit with this disease, she has almost died multiple times. I would be glad to give you all of our learning lessons, as there have been many. She has never had the surgery because all indicators, tests, etc… pointed to UC but I have met so many children on our journey who have been diagnosed with UC had their colon removed only to later be diagnosed with crohns when the disease came back and were left at a young age with a permanent ileostomy. My daughter has been on almost every medication there is for UC…we had NO choice as her life was on the line and she was too unstable for surgery…I would be glad to help…:))

  5. Steve September 7, 2012 at 9:50 am #

    Hi Mark…I feel for you and the other families who have had to endure this illness with a child. They are resilient but it seems so unfair. Thank you for sharing your story and I hope you continue to search for answers.

    That said, I’m not a fan of the surgeries or medications. I understand there are those who do that and it works for them…but like you and your wife, find those treatments harsh. Have you or your wife looked at natural alternatives? Probiotics?(quality does matter). Dietary changes?(SCD, Eating raw vegan). If not, you should. Two books I’d recommend. A) Self Healing Colitis and Crohn’s by David Klein. B) Breaking the Vicious Cycle by Elaine Gotschall. Check them both out, as there is a wealth of information that will help you in every way. If I can be of any help, please say so!! Steve

  6. Cathy September 7, 2012 at 4:57 pm #

    My daughter was diagnosed at 16. Her doctor (former) wanted to put her on 6MP right away. When the doctor rattled off the list of possible side effects, I thought I was going to pass out. I remember thinking I would rather she have her colon removed that face those risks. Well, she got into remission with Colazal and prednisone- for a while. She started a terrible flare just before she turned 18. My daughter made the decision to try 6MP. she couldn’t go on as sick as she was. It didn’t work- even when increased. Then she tried Remicade, and that didn’t work on her. She was on prednisone for over a year, and it was doing damage to her body. So surgery was the only option. She had a colectomy in January, and had the ileostomy bag until May. She didn’t mind the bag because she felt so good. She got her life back. She had her jpouch surgery in May and is doing great. She only has 2 or 3 poops a day, and takes NO MEDICATION.

  7. Erin
    Erin Thompson September 7, 2012 at 8:02 pm #

    Hi, my name is Erin, i was diagnosed when i was 5 and im now 18 so i see things more from your sons point of view, i am on remicade right now and it is the only this that has been keeping me in remission, i have had no side effects on it and i consider it my miracle drug. I also like say say that i have been on it for 4 years and was only 14 when i was put on it, still a child. not saying its for everyone but it helped me a lot. the best advice i have for you is dont fear it, learn to live with it, be there for your son because he needs you, no matter ow much he might deny it. Also let him have a say in his treatment, there is nothing worse then feeling like your life is completely out of your hands, even at that age. if you or your son ever want to talk feel free to contact me day_love_green@yahoo.com
    good luck to you all!

  8. noelgallagirl September 8, 2012 at 2:52 pm #

    Hi…

    Please heed Steve’s advice. All of these UC drugs ARE too harsh…even for an adult! You are correct in worrying about what the long term effects nay be. I also don’t think that surgery is the answer. I, like Steve, believe in self healing through diet, a good probiotic, and L-glutamine, which seems to have healed the ulcers in my colon.

    Please try the natural route BEFORE anything else…you’ll be so glad that you did!!

    Cheers:)

  9. Casey September 8, 2012 at 5:37 pm #

    I do agree with the above people that recommended trying everything, natural, before any surgical decision. We did that with my son, as well. He was prescribed strong probiotics in the very beginning – VSL #3. We tried diet and went so far as natural healing methods as well. While it did not help, physically, he really enjoyed his Reiki healing sessions. You’ve received a lot of great information, I hope it’s help you see that many different types of treatments can help many different types of people. Patience is a trait that I think any person dealing in any way with IBD has to learn to practice.

  10. Mark September 9, 2012 at 12:26 pm #

    Thanks everyone for the responses. Jen, his symptoms started three years ago with stomach aches, then he started having diarrhea, then the blood showed up in the stool. He underwent all the usual tests and then the vomiting started. Our pediatric Doc. referred us to the University of Iowa Hospital since ours didn’t have a pediatric GI. They initially said UC. Two years and 3 scopes later they confirmed UC. His flares have been fairly minor except the one he is recovering from now. We believe this one was bad because of a combination of different things that weren’t a normal part of his routine, including participating in a study drug that we think made a minor flare into a BIG one. He is getting better now.

    I wanted to also add that I have a friend who informed me she had UC and participated in a study at the U of I hospital 8 yrs. ago and has been in remission ever since. The study was conducted by orally taking microscopic worms. I did at little research and have found out that this is pretty amazing. It has a high success rate with both CD and UC. There are even some trials for MS patients as well. But it also seems that big Pharma can’t make huge profits so it is up to individuals to seek this treatment out. I am going to ask my Dr. about it and see what the response will be.

    • Laurie April 26, 2013 at 12:28 pm #

      My son, Kyle was diagnosed a few weeks ago with UC. He is 12 and has been having really bad abdominal issues for a couple of years. At first started out with pain for a week and then 6 months of normal and then a flare up again for a week. His last flare up started in February and has not gone into remission yet. He is on a very low dose of prednisone, half of what he could tolerate. This is day 13 and we aren’t seeing a difference. Has anyone else experienced this?
      Also, he doesn’t have diarrhea or bloody stools, just abdominal pain. Anyone else in that boat?
      Colonoscopy and biopsy indicated swelling throughout the colon.
      My question is this, do most people respond to prednisone?
      And how do we sign up for the worms? I hear it has GREAT success from many sources.
      Also, he has pain immediately after he eats, so it’s difficult to see what foods he is reacting to.
      When he goes into remission, will we be able to tell what foods are bothering him more easily, or is this done with testing? I’m overwhelmed.

      • Jackie April 26, 2013 at 2:41 pm #

        My 12 yr old son gets pain after eating to.He has just had a flare and was on Prednisolone . He was recently prescribed Mebeverine for the pain and this seems to be working.We also tried extra Vit D . When having a flare we put him on a low residue diet and this was amazing !!!! My son gets very down and fees very alone he has never met or talked to anyone else with UC
        Jackie

        • Laurie April 26, 2013 at 7:01 pm #

          Thank you SO much for responding. This is the most difficult thing I’ve ever experienced. It’s so hard to watch your child suffer. It’s hard to find people that can relate. I’m so grateful to have found you guys. In fact, I think I love you!
          Jackie, what are the side effects of the meds that your son takes?

          • Jackie April 27, 2013 at 2:21 pm #

            Hi Laurie
            Innes has little to none side effects .when on Prednisolone he had the usual round face but when not in a flare he is fine.The Mebeverine takes the cramps away but no he is great x
            Would you like my email so we can keep in contact about the boys x
            Jackie x

        • laurie April 27, 2013 at 7:37 pm #

          Jackie,
          i would love to have your email.
          that would be great!

      • Angela April 26, 2013 at 4:22 pm #

        Hi Laurie,

        I was diagnosed at 13 (now 24). I also had abdominal pain after I ate. If he doesn’t have bleeding or diarrhea I would take that as a very good thing. It probably means that you caught it early and it hasn’t progressed that far. Some people don’t respond to prednisone, that is normal as we are all different. Try prednisolone. When you take prednisone your body “breaks” it down into prednisolone and that’s what does the work. By taking prednisolone itself it skips that step as its already in the form that your body needs. Don’t get discouraged by him not getting into remission yet, its still VERY early and it does take time whether its diet or meds for the body to heal. I took around a year for most of the symptoms to go away, and 4 years to enter true remission. Stay strong and you will get through this. While it might be hard to see the light at the end of the tunnel now it’s coming…and we’re all here to help! :)

        I agree that maybe your and Jackie’s son should talk, having someone to talk to allows you to laugh at this disease…which we all should do! It’s keeps us in a good mental state and helps our bodies.

        • Laurie April 26, 2013 at 7:11 pm #

          I am overwhelmed by your kindness to even respond. Sometimes I feel like we’re walking through a desert looking for an oasis. There just aren’t many people that even know what this diagnosis is. I felt relieved to finally have a diagnosis, and then didn’t sleep for two days after I read all the information on the web about it. Tell me how are you able to figure out what foods bother you if everything bothers you after you eat?
          Kyle took so many different food allergy tests and sensitivity tests, that it appears he’s allergic to everything!
          And yet, the only thing that bothers him is sugar, fruit, and maybe tomatoes. Tell me how did you sort this out?

          • Angela April 27, 2013 at 6:24 am #

            I completely understand, I remember seeing my parents’ right after my diagnosis. The sugars make sense, they’re hard on digestion. I’ve never done allergies tests so I just did a trial and error process. The best way to do it is to remove one thing at a time from his diet and wait a week or two, see how he feels and then reintroduce it. If it’s a trigger food once you reintroduce it it should show some signs. You have to do it one at a time so that you can truly pinpoint the triggers. It might be a little difficult to see the results right away if he’s still very symptomatic but you should still try. For me my trigger foods are highly processed carbs (I’m fine with whole wheats, and a special low-carb pasta, and use honey over refined sugar when I can), artificial food colorings (these are horrible! try to only buy things that use beet juice, carrot juice etc on the label), and I eliminate foods that have high amounts of preservatives in them (these are the worst for me, box foods or a can of campbells soup can affect my colon in a matter of hours) so I’m always making homemade things now. I started with these things because they’re the most “unnatural” parts of our diets. I know there are diets like SCD out there but I always worry about those for kids because you’re still growing and need a well-balanced diet. Ask your doctor though to run a blood test to check and see what vitamins he might be low in as UC affects your absorption. From there you can make sure he;s taking the right supplements.

            I should mention that I’ve been on remicade for 9 years. Diet alone wasn’t a solution for me but it has definitely made an impact.

        • Laurie April 27, 2013 at 11:53 am #

          Angela,
          How long should I wait between bringing back foods that might be causing the problems?
          I appreciate you SO much.

          • Angela April 28, 2013 at 8:14 am #

            Aww thank you! I’m just glad I can help! There isn’t a definitive answer to how long but I would say at least wait two weeks before reintroducing. The best way to do all of this is to have a food and symptom log. Write down the times and amounts of things he’s eating as well as symptoms. That’ll help you to start seeing links. Usually, in a healthy person what you eat at night you expel in the morning. With UCers when they’re in flares that can be accelerated. So if he eats something track the symptoms he has for the next couple hours. If he gets a pain or a seriously bathroom trip mark down the time and trace back through your food log. Eventually you won’t need the log anymore.

    • Jackie April 26, 2013 at 2:36 pm #

      Hi my son is 12 yrs od and had UC since he was diagnosed at 5yrs.He takes Pentasa and Mebeverine and we do the extra vit D , Alovera juice and have now started L- Glutamine. He has had various flares but touch wood he is coming out the other side of one .He has never met or spoken to anyone his own age with UC maybe he would like to email my son to talk to each other
      Jackie

    • Laurie April 27, 2013 at 11:29 am #

      Yes! The whip worm Gatorade!! It has been purported to be the miracle for this. I read that it costs 2900 per treatment. Iowa has it and I read that here in Texas, Baylor is conducting some studies with it. I just emailed them to see if we could do this. Dies anyone out there have more info on how to get this done easily?

      • Mark April 27, 2013 at 3:48 pm #

        Hi Laurie.
        I just wanted to try and answer a few questions I’ve seen pop up up since my last post. The SCD diet I placed my son on has been great for him. After finding out about the diet on here and other sites I researched and found lots of people have had success with it. I purchased the book Breaking the Vicious Cycle by Elaine Gottschall. She wrote this book after doing follow up research from another doctor and having her own child use the diet. It put her child into remission. It isn’t that hard to follow unless you are a sugar junkie. Luckily for me my son has never been that fond of sweets. we just had a follow up visit to his doctor at Mayo Clinic, Rochester. His blood tests came back great! Along with the diet he also takes a multi-vitamin with iron. He still takes his maintenance drug balsalacide. Since starting the diet he was able to go into remission and get off prednisone and omeprazole. He gained back the weight he lost from his last flare and has had no symtoms for 7 months. The diet basically has you remove ALL milk, wheat, starches, and sugars. He can still have all kinds of cheese and I make homemade yogurt, mayo, and use almond flour for his bread. Unless a person has a nut allergy it isn’t that hard to follow. I HIGHLY suggest everyone to give it a try. I am not a big beliver in some of the medications that the doctors try to use. I have done research into fecal transplant and the hookworm therapy. The fecal transplant will probably be our next course if he has another flare. The hookworm therapy is still in clinical trials, unless you go outside the U.S. Check out the clinical trial website. I hope this helps.

        • Laurie April 27, 2013 at 6:44 pm #

          We’ve been paleo since the end of February and haven’t seen a remission. That’s whats confusing me is that we’ve been eating clean so I thought once we got on prednisone and balsalazide that we’d see a difference. Can it be this hard to find your way to remission? Does anyone ever hit the jackpot with the first pharmaceutical cocktail they try?

          • shelly in maine April 28, 2013 at 3:25 am #

            hi Laurie,
            Another thing abut SCD and paleo is that sometimes you can be allergic or just intolerant to certain foods especially eggs, milk products, nuts, nut flours. On the SCD lifestyle site Jordan talks about the four dark horseman of SCD…if you Google it you will find it…if not I can give you the link(it slows the response down so i won’t include it now). That may help.
            Meds are a sort of pot luck and there is not really a one size fits all with this disease so you’ll just have to keep trying.
            A probiotic is a must and I mix mine Vsl3 in my smoothie or with applesauce…I also have added Bev’s renew life ultimate flora, because it has a delayed release capsule. I also did Metagenics before that, recommended by my primary care Dr.!
            Just fyi, I was diagnosed by 15, symptoms forever before that and here I am 30+ years later…hang in there, keep reading and keep fighting…you are on the perfect site!
            Best, Shelly

  11. Cathy September 9, 2012 at 1:52 pm #

    Sometimes surgery is the only option. It’s not the end of the world. When you’ve tried the diets, tried all the medications, tried probiotics (that your researched like crazy- read studies from all over the world) and it doesn’t help– you do what you gotta do to live your life. Not everything works for all people

    • Steve September 9, 2012 at 2:28 pm #

      I hate that Americans are led to believe surgery is the only option if nothing they try works. It takes time and patience to discover the cause of an individual person’s UC. And some people would rather be sick than change bad habits. I know surgery happens and to avoid death there is other choice, but what about the choices that brought them to that point? What about the people who are near death but do not chose surgery and go on to live healthy lives once they attack the cause of the illness? What about way back when when our food was not nearly as processed and the idea of a tv dinner was a not yet invented? Back then, UC was not as common as it is now. I could keep going but I mean no harm.

      I just think by saying sometimes surgery is it, you close doors of hope for those who are willing to look. I mean, in my experiences, UC is a manifestation of bad health. If you remove the cause of the problem, the symptoms always go away. Plus, surgery does not always have the fairy tale ending. I’ve seen people get it who were no better off and still spent weeks on end in the hospital every so often. But I would never say, “Dude, you should never get the surgery because the illness can move to other parts of your body, infections can be common”, etc. That is their option and choice to make and for me to knock down any hope…it doesn’t seem right.

      This may be a nasty illness but it teaches us three things…we can never take a day for granted, we are a lot stronger than we think, and there is always hope because there are so many parts of life that can bring about UC symptoms…so there are just as many options to remove it from our lives.

      • shelly in maine September 9, 2012 at 5:17 pm #

        Hey Steve,
        Ironically, the info. from others who have had surgery because they have NO other options and yes that is a reality has actually empowered me to continue to fight and stay off meds…because I no longer fear it. If you get a chance, you should read some of the stories under surgery like? Curtis, Vinny, Blake, and now Isabel. Sometimes there are other factors we can’t control and cause the uc to rear its ugly head. That is the reality of uc. If we could control it so easily there would be no uc-huh?
        Food for thought! :-) Shelly

        • Steve September 9, 2012 at 7:53 pm #

          Hey Shelly…been a while! Hope you are doing well. I don’t know what I said that was wrong but I need to clarify. I’ve seen people get surgery because they were told they had no other option even though they did. These same people would swear to me that eating raw fruits and vegetables are a death sentence for a UCer. In other words, the people I am referring to I know personally and they had options that went unexplored.

          I was not condemning surgery as an option…I read Isabel’s story yesterday, Brett shared how she is hoping for good results with surgery if I remember correctly, and Dede shared her story as well(I remember Blake too). I am happy for anyone who achieves good health, no matter what they do to get there. I made a comment there about all the strength they show and any time I face a hardship, health or otherwise, I will remember what they have gone through. Just like Cathy’s daughter and anyone else. My point is I am all for whatever anyone chooses in their fight against UC…but this is a place of hope and to tell someone sometimes it is the only option, well, is that hope? I know there are many factors in UC and not all of them can get explored before it is too late(Justin was diagnosed and only had a few months before he was near death). I was one of those people too. I just believe in people here exploring all options for themselves. Asacol made me a horrible mess…am I on posts telling people not to take it? No. That defeats the purpose of ihaveuc. Hope that makes some sort of sense and clears up any confusion.

  12. shelly in maine September 9, 2012 at 2:58 pm #

    Hi Mark,
    I won’t go on and on either way, but you you should read up on all meds. And note there are extra warnings for kids on those types of meds. And especially in combo. with some others…it is right on the ccfa website itself. It is important to read all the warnings and potential side effects for patient and doctor info.
    No matter your choice, and hopefully you/your son are still able to make a choice…diet is key and probiotics….both 100% safe! Keep track of EVERYTHING-from input to output and try and change 1 thing at a time otherwise if you may not know what is working or not.
    Remember to be careful with alternative meds…they are meds too!
    Best of luck and health, Shelly

  13. Cathy September 9, 2012 at 3:39 pm #

    Hi Steve. You really need to take a long walk in somebody’s shoes before you judge them. Remember- there are a lot of different ways to deal with UC. Your way is not the only way. I am so sorry you think Americans are ‘led to believe’……..Some of us make our own health decisions, as my daughter did. My daughter tried EVERYTHING. Surgery wasn’t her first choice. She ate a healthy diet, she tried SCD, she tried probiotics, she tried meditation, she tried every medication approved for UC. Yet, she still vomited all day long, still had joint pain so bad she could barely walk, still pooped bloody diarrhea, or just plain blood, still had fatigue so bad she could barely get through a day. Now she is able to attend college and work. After her surgery in May she was able to work a full time job all summer, come home at 6:00 p.m., and ask who was up for a game of tennis, or a bike ride. She was able to hang out with her friends and boyfriend til late into the night- like 19 year olds are supposed to do. Please– tell me again why my daughter’s way was the wrong way!

    • Steve September 9, 2012 at 7:30 pm #

      Never once did I say your daughter’s way was the wrong way nor did I condemn her choice. I said in not so many words, this is a place of hope. For you to say “sometimes surgery is the only option” to someone looking for hope in all ways possible, it defeats the idea of this being a place of hope does it not? That was all I said and all I intended to say. I used my position as an example, showing you how silly it would sound if I said what I think about my experiences with UC—because that would make me a bit of a jerk and I’m not one. I don’t judge other people for their choices nor do I want anything but happiness for someone who makes a choice…if you missed that, my bad but I stand by what I said. This is a place of hope. Don’t take away hope for others because it didn’t work for your daughter. After all, she is in good health yes? Others are not and going through exactly what you and your daughter have in the past. They are killing for anything to work, suffering each and every day as many of us have. Sorry if that point is missed on you and have a good day. Steve

  14. Casey September 9, 2012 at 9:35 pm #

    I don’t mean to speak for anyone else that posts comments regarding surgery, but, I’m going to. I really believe that anyone that shares our stories that involve surgery (in my case my 12 year old son) are only sharing to encourage people that IF the time comes and you have no options left but surgery… life does go on and in a lot of cases, life is better. That is hope.

  15. Cathy September 10, 2012 at 6:26 am #

    Steve, I’m sorry you felt, that I felt, you were condemning my daughters choice.That was the feeling I got from your statements. Honestly, I don’t understand everything you discuss. I don’t believe my daughter has UC because she has bad habits, she doesn’t. You stated, “And some people would rather be sick than change bad habits” She has an autoimmune disease- that flared for an entire year. I am well aware of the Hygiene Hypothesis, to which I think you refer. The theory makes complete sense to me, it just doesn’t help. I know of the theory because I have read and researched ANYTHING AND EVERYTHING I could find on UC. That is what a parent does when a child is diagnosed. I hope that you can consider sometimes surgery IS hope, not lost hope.

  16. Kristin
    Kristin October 3, 2012 at 12:46 pm #

    Mark- I just wanted to let you know that I completely understand your heartache and frustration. My 6 year old has been battling UC for almost a year now and thankfully we are winning the war right now. There was a period of time where we definitely were not. She does take VSL #3 and we stick to SCD as much as possible. When she eats something she shouldn’t she flares but we have been able to get two mini flares under control with diet alone. you asked for other suggestions. I know there is a clinical trial going on for fecal transplant for children suffering from UC. Maybe you have heard of this therapy-it has been used for C diff very successfully and so far pretty well for UC also. I bet if you google it you will come across the clinical trial. I know that i personally would explore that option before I EVER put my daughter back on prednisone or any of those other harsh drugs. Good Luck! You and your son are in my prayers.

  17. Pacita January 8, 2013 at 9:46 pm #

    Hi everyone,
    I just need to vent. I’ve seen all of your post and I feel your pain. My son is 9, he got UC last year around this time
    It was the hardest thing to see him go through. He was in the hospital 2 times last year to get a blood transfusion. It has change him for life. I miss my happy go lucky guy. We are trying to get him off the steroids. But now since we were on Christmas break his stomach has started to hurt again. No blood in the stool, and no diaherra. I just don’t want another flare up. I wish I could take this away from him. I think I may try some probiotics. I just want this stomach pain to go away

  18. Reverie March 25, 2013 at 6:34 pm #

    It is helpful (though sad) to read the experiences and many cases anguish of others who are dealing with a child with IBD; it makes me feel less alone and also less “crazy” for all that we have attempted, how hard we have tried and continue to try, and all that we have tried our best to avoid. We have a daughter who was diagnosed at age 2 with UC. She is now 10 and is small for her age, which I know can be an issue for children and adults with IBD. I am glad I found this forum. I notice mention of VSL #3 in some of the posts. My daughter has strange reactions to things as far as probiotics go; her colitis was severely aggravated by VSL #3; she had a similarly adverse response to bifidobacteria strains supplement. Lactobacteria has a better effect for her but has never made a lasting or progressive difference.

  19. Mark April 24, 2013 at 12:57 pm #

    Hi everyone! It’s Mark again.
    I would like to thank everyone for there comments and support! I thought I would give an update on my son. Last fall he had his worst flair since being diagnosed with UC. He lost 23 pounds in three weeks, was out of school for 2 months and was pretty miseable. He couldn’t keep his meds down and the Dr. wanted him to start Remicade, they also wanted him to come in for a scope. We said no to both. At the time he was going to the bathroom every 15 to 20 minutes and getting sick at the same time. Wasn’t going to take him on a 5 hour roadtrip just so they could take pictures. I started him on the SCD diet in the middle of September, 2012. Wow what a difference. He went into remission in a couple of weeks and so far is still there. He gained back his lost weight and was able to finish out his last couple of soccer games, a little wobbly but outside running around. It has been difficult trying to keep him focused and on track with the Diet. He has cheated and not told us until later but it is still a work in progress. School lunches were the hardest to work around. But we get the menu a month in advance and go thru it with him and his school will make a salad for him on days he can’t have anything. For anyone with a child in public school that has ANY type of physical or mental disability, there is a federal law that allows you to set up a plan to work around the disability. In Iowa it is called an IEP plan or a 504 plan. You set down with the staff and draw up a guideline they have to follow. We set it up for our son and he has liberal bathroom priveledges and allowed to carry water with him everywhere. His abscences due to his UC cannot be held against him. We review it with the staff yearly and can make ongoing changes whenever it warrants. It has helped with dealing with the school system. PLEASE check into this. Anyway, the diet has been awesome. He has even stopped taking his omneprazole because he no longer has indegestion. If you haven’t tried this diet I highly encourage you to do so. The rest of the family hasn’t had any complaints either. We eat what he eats so it helps him stick to it. It is not easy but the benefits for my son make it all worth while. It makes shopping a challenge, takes a little longer because I read the list of ingredients on everything I pick up. But once again it’s worth it. A big shout out to Adam and this site for helping in my research on UC and the SCD diet. Thanks so much. Will keep everyone udated and Thanks again for the feedback.

    • shelly in maine April 24, 2013 at 4:02 pm #

      Awesome Mark…thanks for the update. Kudos to you and your entire family….the secret to your success! :-)
      Continued good health, Shelly. :-)
      Oh keep checking the web there are soooo many SCD friendly sites and recipes now…comfybelly is one I found that uses different ingredients and other kid friendly recipes. (I prefer coconut flour or mix with the almond flour for some recipes-although I am not 100% SCD).

Leave a Reply to Mark Click here to cancel reply.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

iHaveUC.com is located in Menlo Park, California - United States 94025