Looking for advice for son having trouble

My son, 15 was diagnosed with mod/sev UC in January of this year, he was out of school for 3 weeks, very sick. He started the med colozal with pred and it took well over a month but symptoms went away, he then flared again in April, again at his Dr. advise started mega dosages of steriods and then weaned off, again he was symptom free for about 45 days and then flared again, we are in our 4th flare this year, this time as soon as he stopped the pred wean, 3 days later he started bleeding again. Our Dr. who we like threw out Apriso but told us given the colozal not working the Apriso probably would not either and is really pushing 6MP. I am scared to death of all the side affects especially in children with this drug, some folks (mostly adults) say its great/remission but more so say it created a multitude of problems especially for kids. We are seeking another Dr's opinion on Monday, and thought about trying the Apriso in the meantime. The Dr. does not want to put him back on steroids he has been on way too much too often this year and that alone has a whole host of issues. I have read about remicade (Dr. mentioned as well but pushing 6MP) on this forum that I stumbled across but that too I find scary but in reading seems like works well for kids. We have always been healthy eaters and now have been really watching his diet eliminating foods, etc in hopes that will help as well, our Dr. has told us that diet does not play a part in UC but only Crohn's but I have been doing reading and I am not sure that is correct. Any help/advice fellow parents on teens, children can lend I would so appreciate -- thank you in advance

Hi and welcome to the forum! I'm sorry you had to seek us out and that your son is having such a hard time. My son, 16 has CD but I'm not very knowledgeable about UC. There are several parents of kids that have UC on here. I will tag Dutch941 and Myreinhard as I think they may have experience with UC and kids. I hope you find something to give your son some relief soon!

Myteenson said:

My son, 15 was diagnosed with mod/sev UC in January of this year, he was out of school for 3 weeks, very sick. He started the med colozal with pred and it took well over a month but symptoms went away, he then flared again in April, again at his Dr. advise started mega dosages of steriods and then weaned off, again he was symptom free for about 45 days and then flared again, we are in our 4th flare this year, this time as soon as he stopped the pred wean, 3 days later he started bleeding again. Our Dr. who we like threw out Apriso but told us given the colozal not working the Apriso probably would not either and is really pushing 6MP. I am scared to death of all the side affects especially in children with this drug, some folks (mostly adults) say its great/remission but more so say it created a multitude of problems especially for kids. We are seeking another Dr's opinion on Monday, and thought about trying the Apriso in the meantime. The Dr. does not want to put him back on steroids he has been on way too much too often this year and that alone has a whole host of issues. I have read about remicade (Dr. mentioned as well but pushing 6MP) on this forum that I stumbled across but that too I find scary but in reading seems like works well for kids. We have always been healthy eaters and now have been really watching his diet eliminating foods, etc in hopes that will help as well, our Dr. has told us that diet does not play a part in UC but only Crohn's but I have been doing reading and I am not sure that is correct. Any help/advice fellow parents on teens, children can lend I would so appreciate -- thank you in advance

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I want to express my deepest apologies about your sons health. I understand totally what you are going through. As a mother the hardest thing to experience is an "unhealthy" child. I try not to use sick because it's so darn depressing to use that word. So depressing I don't let the doctors use it when referencing my child.

Ok, so we are tackling UC with your son, which means that he is currently dealing with ulcers in his intestines. Do you know exactly where the ulcers are located?

The first thing I want to express is to not allow anyone to tell you that diet doesn't play a big part in these digestive problems. It has always made me angry when doctors say such a uneducated statement. It's not like we are dealing with a muscle problems or a foot fungus. We are dealing with the digestive tract, which in turn deals with what we digest.

Secondly, your baby boy seems to be taking a lot of different steroids and medications. You have all the right to be scared. Switching between medicines like that can be a dangerous thing.

Your son seems to be not responding well to the medicines he is being given but at the same time, I'm sure it has a lot to do with what he is taking into his body. I feel like the objective of these medicines should be to help you figure out along the way what is truly wrong, so that eventually you can ween off the medicines and STAY off the medicines.

I've had my experience with Remicade and it's a great drug. My 9 year old started on Remicade when it was 7 or so. He started on it every 4 weeks, then we got him slowly weening off of it. He is now getting it every 12 weeks,respectively.

I don't have any other experience with any other drugs at this time. I do plan on switching over to the pill because it costs less.And plus he hats the needles. Remicade is $9000 a pop, which is a lot of money.

And I tell my son that we have no other choice but to become independent when it comes to these drugs because if for some reason the insurance was gone, we would be in huge trouble.

It's a great thing that you have always eaten healthy, but what do you consider healthy? I used to say these things until I figured out through trial and error that my definition of healthy was not my son's definition of healthy.

Lets evaluate your baby's every diet, that includes anything he might sneak without you knowing. (They are kids, kids tend to do those things. My son has his moments)....

Naturalhealing, thank you so much for your note. I am sorry that you too are going thru this with your child, it is so frustrating and like any Mom you would take if from them 3 fold - I would love to know what you know about diet? It makes me angry I have been told this time and time again, and not knowing alot about the disease but learning as I go from my researching it seems to not be true. As far as healthy, fruits, vegtables, fish, chicken, read meat and only whole wheat products including bread, cereals, etc which now I am learning can be the worst thing to be eating and also factor in the sugar factor! Currently we are keeping to white breads, bananas, yogurt, yogurt smoothies (as he has no issue with lactose) cottage cheese, peaches, soft foods - he loves pretzels and it is frustrating him as we are staying away from them to see if it helps, plenty of water, dried apricots for iron (he is bleeding) and we see another Dr. on Monday....I spoke with someone who told me they went to a nutritionist went on some supplements and went off ALL meds. These meds are scary and 6MP I have read horror stories. I am glad the infusions are working for you, we have terrible insurance as well - any info you can share or point me to would be greatly appreciated. Thank you so much :heart: ps my son when they did the colonoscopy had ulcers end to end ;(

Myteenson said:

Naturalhealing, thank you so much for your note. I am sorry that you too are going thru this with your child, it is so frustrating and like any Mom you would take if from them 3 fold - I would love to know what you know about diet? It makes me angry I have been told this time and time again, and not knowing alot about the disease but learning as I go from my researching it seems to not be true. As far as healthy, fruits, vegtables, fish, chicken, read meat and only whole wheat products including bread, cereals, etc which now I am learning can be the worst thing to be eating and also factor in the sugar factor! Currently we are keeping to white breads, bananas, yogurt, yogurt smoothies (as he has no issue with lactose) cottage cheese, peaches, soft foods - he loves pretzels and it is frustrating him as we are staying away from them to see if it helps, plenty of water, dried apricots for iron (he is bleeding) and we see another Dr. on Monday....I spoke with someone who told me they went to a nutritionist went on some supplements and went off ALL meds. These meds are scary and 6MP I have read horror stories. I am glad the infusions are working for you, we have terrible insurance as well - any info you can share or point me to would be greatly appreciated. Thank you so much :heart: ps my son when they did the colonoscopy had ulcers end to end ;(

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I thank you for the kind words. The journey has been long and hard but it made me appreciate his healthy days.

So if you don't mind me asking.... How are you feeling today? Did your day go well?. These were the questions that I needed to be asked when my son was going through. I was so depleted on energy, emotionally and physically I forgot about myself. I hope today was much better than yesterday for you and especially your son.

My son had ulcers in his upper intestine and rectal area, which is what made me so confused when they kept telling me he didn't have Ulcerative Colitis but he had Crohns. So I took it upon myself to treat both of them.

His Diet

Fruits- Fruits are great for his diet but we have to figure out where he is in his flare ups. Because like I told a parent earlier, raw fruits can irritate the gut. It's not really advisable to give him raw fruits during a flare up. That should be introduced once he has calmed down.

Vegetables- Vegetables are great as well. But just like fruits, they need to be cooked thoroughly. Canned vegetables I wouldn't recommend, only frozen or fresh.Vegetables that are raw can cause him diarrhea. Can veggies have added sugars.

Fish- Fish is excellent because of the omega 3's. But let me tell you this. Try to get your fish as fresh as you can because most frozen fish loose their nutrition. I wouldn't recommend buying an omega 3 supplement right now for him because his tummy hurts. And that will only irritate him more.

Bananas- Bananas are Ok but they have to be introduced in a certain manner. I tried giving my son a banana that wasn't all the way ripe and he got bad diarrhea. The bananas are good as long as they have brown spots on them because starch is another NO NO, and bananas contain starch.The more spotted they are, the less starch it contains.

Chicken and Red Meat Here is the thing about chicken and red meat. There isn't anything wrong with your son eating them. BUT think of it like this. Ball your left fist up really tight, and then take your opposite index finger and try to push your finger through your tight fist.
This is what it's like when your son's intestine is inflamed,( including the ulcers), There is a time to introduce chicken and beef to your son's diet and it may not be right now.

Me personally I'm weening my son off of these meats slowly. But for now he can tolerate them because I have gotten his inflammation down. So for now it's fine. For you, I would be easy on this until he calms down.

Yogurt- Yogurt with Lactobacillus acidophilus might be a better yogurt for your son. Mountain High yogurt is a suggestion. It helps put back the missing bacteria in his intestine.(possibly) My son didn't do well with yogurt, it made his tummy overly active, so we stopped giving it to him.That was the sing that he had way more than enough good bacteria in his intestine.

Bread/Wheat/Cereal- From my experience, all of these things are a NO NO. The bread (yeast) builds mucus barriers in your sons intestine, wheat and cereal usually contain flour of some sort. It may sound hard to do but no bread, no wheat and no cereal is the way to go. And yes it was hard at the beginning because, what about those peanut butter sandwiches? There are other routes for bread but once you take it out the picture, you won't even know it's gone.

Note:
(I'm sitting here looking at my son run through the house after eating all of his dinner.And he says its because he just got his new beyblades:shifty-t:. I sit and smile at him in awe. My husband tells me it's a thankless job but someone has to do it. It feels good to finally see him getting back to himself.)


So here is the deal:- This is where it gets difficult for you, but easier for him. This is you taking it away from him 3fold. Changing his diet means changing the way you prepare his foods. Meals need to be made fresh, no processed, or frozen foods.

Juices need to be 100% juice, no sugar added. Welchs is the juice that I purchase for my son. But honestly on a regular basis my son drinks 100% fruit and vegetable juices and he loves them. WHY? because he loves how he feels everyday, so he doesn't mind making better decisions. Over time I have drilled this into his head, I've gotten mad, I've yelled, I've cursed and I've told him that He has to want this for himself. He finally realized at the age of 9 that it feels good to feel better. I don't have to work as hard anymore.

But at the beginning it was a long journey of fighting and forcing. It's not going to be easy for you but it will be so worth it, when you are making less trips to the doctor, and he is having solid poops.

I'm going to start putting the recipes that I cook for my son on my blog for my parents with kids who have Crohns.

The goal and objective is to go natural, not just healthy.But I am more than willing to help you through the entire process. I want you to make it to the day where you can say your son is out playing soccer right. And believe me he will get there.:thumleft:

Our daughter was diagnosed with Crohns in January of this year too. She had to take Prednisone twice. She is on her 5th treatment of Remicade tomorrow along with taking Asacol, antibiotic and vitamins. It has gone from mod/severe to mild. We have also eliminated lactose and milk fat which we believe has helped. There is still some bleeding and cramping. It has been a tough road but we believe we are on the right path to help her go into remission. There has been no side effects with the Remicade, although it brings down the immune system. I would recommend the Remicade and would be willing to answer any questions you may have. Keep in touch and let us know how your son is doing.

Hi my DD is 4 and had UC. She since has had the colon removed. The doctors are pushing for your DS to take 6mp bc Remicade is more of a last ditch effort to stop the bleeding. It also works better for small intestines than colonic inflammation. We tried it and fail. Never got to use 6mp bc the Remi did not achieve remission well enough for the time it takes to get the 6mp in. The predisone stopped helping in the end.

Diet can play a role but it really depends on whether he has typical UC or not. By typical I mean never constipated always has the runs. If this is the case the suggestions above are good suggestions. Now that my DD doesn't have a colon I have to bulk up her stools, I use psyllium husk powder, tumeric, real mashed potatoes, bananas, homemade yellow rice, lot and lots of yogurt with VSL sprinkles.

My DD was always constipated with her UC. So fruits and veggies were her friend... Cooked of course. Whole grains were too but she was not typical had to always give her miralax.

Also would like to add that I think a second opinion is a great idea. It always is helpful to have as many eyes on the ball as you can. If you ever have to do the surgery you will feel better with getting as many opinions as you can get.

I am sorry you are going through this but just remember this too shall pass. Keep us informed, sorry for my late response for I don't get an email when I am tagged for some reason.

Hi there and welcome

I'm so sorry to hear about your son. That must be so tough and my heart goes out to your entire family.

You'd already received some great advice so I simply wanted to point you in the direction of our Parents of Kids with IBD section. Connect with other parents there. They're truly a great bunch of people.

All my best to you and your entire family.