Parents of Pre-Teens and Teens with IBD

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Need some advice. I have an 18 year old daughter who is in her Freshman year at University and I am trying to convince her to go to the GI, while at the same time not wanting to fully disclose how bad IBD could be if she has it. Her father went anemic last year and after finally getting a pill cam that showed apthous ulcers through out the ileum and he was diagnosed with Crohn's. He is extremely fortunate and has almost no symptoms at all unless he eats gluten (Doctor thinks he probably is Celiac also since hubby's brother has it and hubby's reaction is so strong even to cross contamination.) My husband also had Prometheus testing done which showed IBD, but not which kind because he had genetic and antibody markers for both. Prometheus looks for four genes and he tested positive for three-which even seemed to surprise the GI. Plus you add in the fact that both parents have psoriasis which is associated with Crohns.

Our daughter began complaining about night time nausea and stomach pain in 10th grade. Then she started loosing her breath and feeling faint and at the same time she started having hives and angioadema (swelling of body parts like the lips.) First thing to get diagnosed was her Chronic Autoimmune Urticaria (hives). They looked to see if the hives were autoimmune because she had autoimmune thyroid since she was nine and autoimmune hives are associated with that. I noticed they did not run a CBC and since I come from a family of people with Pernicious Anemia I asked for one. I had to switch doctors cause the guy wanted to wait three months-I'm telling the nurse that now she is having to sit in the shower and he tells me to wait three months. The new Doc saw her the next day and did a rapid test which showed a hemoglobin of 8.1. When her ferritan came back it was a 1, retested by hematologist the following week who said it was probably wrong-still a 1. Her B12 and Folate where also low normal, so they put her on those supplements also. There explanation was her period even though her endocrinologist and I had put her on birth control 14 months before any of this started to control everything and we have always reported a normal period. I repeatedly mentioned that nausea and stomach pain.

We eventually fixed everything with drugs and supplements. (Although sometime in the midst of this she developed a light case of Asthma.) Expect she still would have the stomach pains and nausea. (Which of course now they blamed on the high Iron supplementation even though we always said this came before Iron,) So I took her to the GI who ran some test for Celiacs, HPV, other critters, had us keep a food diary which showed no patterns and then told us that he did not want to do anything else and blamed her type A personality on it all-I should say the last test he did showed her ferritan had dropped to 6 from 28 while on supplements. I think he was frustrated by not being able to do food allergy testing because when you have autoimmune hives you test positive for every skin prick test.

She wanted to drop it, so I agreed and somehow magically she would have weeks without pain for no apparent reason.
Her anemia was held at bay even though her ferritan stayed in the late teens and we also found out she had very low Vitamin D. This February she began with the stomach pains again and by April we had added diarrhea four or five times a day for a month. We put her on a strict liquid and brat diet and she improved. Now she doesn't have diarrhea unless she eats certain foods-tomatoes, onions, whole corn, coffee, deep fried fat foods, high fiber muffins, nuts-does this list sound familiar? She also has to eat small amounts at a time or it brings it on.

With her Dad's new diagnosis I really would like for her to see what is causing her stomach issues. The diarrhea is a whole new symptom that will make the GI's listen. Plus her Dad's gene testing and her own two autoimmune issues should help. (I should also add she just popped up slightly anemic again while taking twice the normal dose of Iron.) She won't go. She says she will do something if she starts to have symptoms like April where she had to stop eating.

She's 18, 5 hours away, and I really have no control except emotional blackmail, which I am loathe to do. She already takes six pills a day, plus three supplements and she would rather watch everything she eats than go to the GI. I think she is playing a dangerous game with her health. Her Dad and brother tell me she is an adult and to let her make decisions. At least she is still telling me when I ask her about any issues. Any advice?
 
Michelepta, my 17 yo son is the one with CD but his older sister started showing some symptoms. Honestly, I've always thought her bathroom habits were odd but she is not one to go to doctors.

Since her brother's dx of CD I think she has been more aware of her symptoms and finally mentioned that her symptoms needed to be seen about. She had normal levels in her blood test except thy the GI said hervitamin B12 was really low. That coupled with the fact that she has symptoms and a family hx made the GI take things seriously, he now wants upper and lower scopes. We've not scheduled them yet partially because getting her to call is like pulling teeth but also because my son is in the hospital after having surgery.

There is a non invasive stool test that determines if there is inflammation in the bowels. It is not diagnostic as more than IBD can cause inflammation but is a good indicator to determine if more investigation is warranted. The test is called fecal calprotectin stool test.

I hope you soon find answers, my daughter is 21, once she came to me saying things are off I haven't really given her the option of backing out of tests. She knows this can be serious and with us carrying her insurance she knows steps have to be taken.
 
michelepta,

i'm sending you support for wanting to check things out now, rather than finding your daughter in an emergency situation. we're supposed to raise our kiddos to let them go, trusting that they will make wise decisions. the truth is it's much easier to let that happen when it doesn't have to do with their health. so i'm sending you loads of support, hoping that she will hear you and take action.

(((hugs)))
 
Hi I am so happy I have found this forum as it is great to listen and share each others journeys. My daughter Caitlin (11 yrs old) was diagnosed with Crohns disease in May of this year. The doctors put her on Azothrioprine and she has a slight flare up so they decided to put her on steriods for seven weeks. She is coming off the steroids in two weeks time and they are expecting that her Crohns might flare up again so they have asked that we think of Infliximab as another meds to put her on. So that will be together with the Aza (75mg). So here I am hoping that she will not have another flare up..... but only time will tell
 
Hope the remicade and Aza work well together.
Remicade was a miracle drug for my kiddo.
He started it at age 8.
He is 10 and on humira now due to allergic reactions to remicade .
 
My so was diagnosed at 10, now 15 was on azathioprine for many years. In the end it just wasn't strong enough ad he has been on remicade (infliximab) since January and it has been a complete turn around for him. He is in remission now and looks forward to his infusions so that he can stay that way.
Hope the aza is enough on it's own to keep things under control though, for a lot of people it is. My husband has been on it for 13 years and it has been enough for him.
 
Hi my 16 year old daughter was diagnosed with ulcerative colitis in May. She started in apriso it worked for 2 months then her symptoms returned. We went to a gasternologist who scoped her again and changed the diagnosis to crohns. Now she's on imuran and starting humira injections this week. I am so confused about this. I have read till I am blue in the face. I feel like my daughter is in denial. She will not talk about it. Any words of advice???
 
Hi ShellyC. Sorry to hear that you've needed to find your way here. Have you considered a therapist? The right one can do make all the difference.
 
Shelly sorry to hear this is so difficult. The 1st year of diagnosis is the toughest. It is hard when they switch diagnosis on you. We have switched from indeterminate colitis to crohns then UC and back to crohns in the last 2 years. The difference isn't much when you are working on medications to heal and get better. It only plays a big part when surgery comes into play. There is a teen forum here and starbright is helpful. My kid will use them at times. Has she found other IBDers to talk to? It might help her better.
 
Thank you so much for the advice. So far we have not met anyone who had bid. We live in a very rural area so it's hard to meet new people with it. I have family in Portland area who knows people with it and they were going to email us but so far nothing. I know she talks more to her friends about it. I will try and talk her into joining the forum. Maybe that would get her headed in the right direction. Thanks again!!
 
We are also in the first six months post diagnosis. My son has started talking to friends about Crohn's. Hoping your daughter heals quickly, it looks as if the meds are similar to my son's and they promote healing. Hang in there!
 
Question... how do you promote positive body image? I want D to feel comfortable in her body when she gets a bag. Any good tips?
 
I have a boy so we talk about "fun" options with a bag - most he wouldn't do
Like making it "fart" etc..,
Not sure on a teenage girl.
Mine was concerned about swimming etc..,
And covers
Have you showed here the options for covers
Models and celebrities with bags .
Queen gothel little one has a permanent ostomy .
May she has some ideas .
 
Oh D will like the fart things. she is a tomboy at heart for sure. She is asking things like "will it smell if someone is near me? & can people see it under my clothes?" We are meeting Jessica Grossman Monday at her talk & I think it could help. Thanks for the booklet link. What other fun things can you do with a bag? How does he handle it in social situations?
 
He doesn't have a bag but at one point the docs were talking a lot about rectal surgery -most doc said if we let the surgeons fix the rectal prolapse the odds of him getting a permanent bag were good. Other docs said it didn't increase the risk . No one could agree except that it wouldn't really help his crohn's only make it worse.
At that point he was in a lot of pain , creams and suppositories weren't working -already on humira etc... Rectal prolapse was getting worse and trying to avoid emergency surgery.

So we decided to just talk with him about fun things you could do with a bag just in case .

Things to do:
Farting
Seeing your food later
Never getting up during a wii game /movie to have to go
Throwing /pretending to slip and have it get on any one mean.
Watch people freak if they saw some leak on the sidewalk :)
Fancy homemade covers - with super hero patterns .
Naming it .
How he could still swim and what type of suit he would use .
Showed him pictures of what they look like .

He was only 9 but ....
He still has prolapse which still get really bad when he flares and is the last to heal .
So may be a future conversation but for now fingers crossed.
 
I thought I was missing something because I didn't think he had one and thought i missed a big part of your story. Our doc at SickKids said Jessica is amazing to speak to & has been a great motivation and spirit lifter for many. http://uncoverostomy.org/ is her page. I am trying to show her others that handle it well in hopes it keeps her positive. Some of Sara's videos have spoken negatively about her ostomy experience but I think it is because how she got the bag, and has had many health issues lately. D follows her & I think some questions have arisen from Sara Ringer's health. I have told D we should document this journey for her that may give someone else some hope. She wasn't ready for that. I think she is nervous about school dances & down the road getting close to a boy and knowing how to share it because unlike IBD itself, it is out in the open in her opinion. She chooses how & where she shared her crohns but I think she thinks of a bag like a scarlet letter that everyone will see.
 
Google Blake Beckford, he is a male excercise model with a bag, I think there is a female model as well.
Blake-Beckford-Matt-Marsh.jpg

Here's the model
bethany-townsend-1-300.jpg
 
Need some advice. My too smart for her own good teenager found a way to reduce her bathroom trips from 7-9x a day to 3-4x. For 2 days she went on a "saltine cracker diet". All she ate each day was a sleeve of crackers and enough water to take her pills. She finally told me why the change of bathroom visits ( I got hopeful the meds were working) and I lectured her about why she can't do this" diet" because the short term gain would not be worth the long term pain. If I didn't discover this I think she would have continued with this diet.

I think she listened, as she went to subway with her sister for dinner. ( and as soon as she ate she ended up going 2 x during the meal. Wishful thinking something else was the reason for the sudden decrease in bathroom trips). Now I am paranoid she will try this again. I can't hover around her at every meal and monitor her every move but I am worried.

Oh year, scopes and surgery consult moved up yesterday afternoon to Wednesday as an inpatient. Told to clear our schedules potentially for next weekend because if they can they will do the surgery too. In for 3 days for sure no matter what. Potentially another long weekend in the hospital. If we are in for the long weekend and Canadian Thanksgiving this will only leave 2 holidays we have avoided being in the hospital during, Christmas & 4th of July. I feel my hair turning more grey by the second.
 
Poor kid, she must have been feeling desperate. And poor family to spend another long weekend in the hospital.
 
Where did you get information about the diet? Our doctor said that my son could try diet changes but gave little information as he needed pred and 6mp to turn things around. I am curious about the diet but my other child has celiac so we are already doing this for her. So many questions?!? I really feel for all of you out there and send my support and admiration to you all! <3
 
Most of the diet we have learned through elimination /trial & errror. I have read almost every IBD book and the only one that helped was the gluten free, but for me, not her. That and we eliminated dairy completely which helped. With crohns there is no standard recommendations because the disesse varies so greatly. Seeing a nutritionist helped us.

When in a bad flare we follow the BRAT diet which helps. ( bananas, rice applesauce & toast)
 
Poor D. She must want to feel better more than anything. Thinking of you both and your family:ghug:.
 
Your poor girl. I can understand though not wanting to run to the bathroom all the time. It is so hard for our babies. Good luck with the scopes and everything. Will be waiting to hear how it goes.
 
My mom is right, teenage girls are hard to raise! D ate yesterday, but very little (it was Yom Kippur where all jews are supposed to fast for 24 hrs) even though she was exempt from the fast. She threw up last night at services which was a bit embarrassing to her. She said some old lady kept asking her if she was ok and if she wanted her to find me. The old lady thought she vomitted because she had fasted. D was happy not to have to explain she wasn't contagious or needing medical attention that the reason was already assumed. Now I'm working on her diet with her in hopes to get this hickup behind her. I like my teenager much better when she is honest with me than keeping secrets!
 
I just want to say I hope it goes well for D when she goes to hospital and the surgery too. Never easy to deal with. Tell D Josh and I wish her well.

I think with the bathroom visits and diet, it is something that everyone, children and adults may try at some point to avoid going so much. Maybe not the cracker diet, but similar ones. I know when Josh was flaring badly in 2013 he limited his diet massivly to avoid eating because he couldn't cope with the constant bathroom visits.
 
Sorry to hear that she went through that last night. It certainly is embarrassing. I remember when Caitlyn was first diagnosed and she finally got back to school. Within an hour of arriving she vomited all over the hallway. She was mortified. Luckily her classmates and teacher were all very supportive.
Sending her lots of hugs and tell her it happens to the best of us.
 
I just wiped all my calendar for the next week. D skipped school today & went to her elementary/middle school to hang out. I think she needed to be with people that have been with her in this journey. Think she is really getting scared. I know they will take good care of her there (principal is a friend of mine too). I hate the head space she is in. Gawd it is so hard to read a teenager's emotions some times it is so up & down!
 
In the US, the children's hospitals usually have Child Life Specialists. The one at C's hospital has CD and was really wonderful as a sounding board for a teen. She was really great and comes by each time he's been admitted. Maybe there is something similar in Canada?
 
I will ask. It is a good idea. D has no issues talking about everything but what she does is talk about her crohns in the 3rd person like it is happening to someone else like she is talking about a TV character. It isn't until you dig in deep with her that she shares all the emotion. Maybe having a sounding board for her would help.
 
Hi everyone! I hope I'm still welcome here although my daughter will only be a teen for one more week! She is 19 years old and just diagnosed today with Crohn's, chronic active ileitis (?) and reflux esophagitis. We live in NJ and she is a sophomore at USC in Los Angeles. It is very difficult with her being so far away. Thanks for the support!

Nadine
Mahwah, NJ

and

Jessie
Los Angeles, CA
 
Of course you are welcome! MLP is right there are a few parents of university age kids here too. Maybe you can help us with some of us with the younger grouping!

Sorry to hear about your daughter. Being that far away is tough too. How did you manage the diagnosis being so far away? How is she handling it being far away?
 
Hi and welcome!
There are a number of us with older teens and young adults.

Is your daughter back at college? My older daughter had to withdraw for a semester during her freshmen to get her health under control. It was very difficult until she withdrew and she wasn't even so far away from home. Being registered with the Office of Disabilities helped immensely. They were very good about being accommodating - getting her a notetaker for the days she missed class, taking exams separately, extra absences, changing her schedule so she didn't have class in the morning (she is in more pain in the morning) and just helping her advocate for herself, since she was a freshman and very new to college.
 
@SupportiveMom and @Maya142....thanks for the welcome! Yes, she is back at school at USC. She started experiencing some symptoms in the summer when she was home but she attributed it to the antibiotics that she was put on for suspected Lyme disease (which was ruled out). It got really bad when she went back to school at the end of July (she is a Resident Assistant this year and had three weeks of training before school started). It was a stressful time with training from 9am - 9pm M-F and she was also dealing with trying to make up the work from three incompletes that she had to take from the Spring semester due to the chronic headaches she was dealing with then (see my intro in Your Story for more background). She went to the health center at school at the beginning of September. The doctor did some blood work and took a stool sample and referred her to a gastro doctor at USC Medical Center but she couldn't get an appointment until the end of October so I brought her home to NJ on September 24, she had a colonoscopy and endoscopy on October 3rd (at which time the doctor said she had esophagitis and that he was 99% sure she had Crohn's but would have the results of the biopsies today), flew back to California on Sunday (two days ago) and we got the diagnosis today.
 
@Supportive Mom....I think it's too early to tell yet. She started two of the prescription meds on Saturday and the third yesterday and is starting the Nexium today. She still feels very weak and it's difficult for her to eat but she knows that she has to. I'm hoping that the meds start working quickly. I'm going to try to meet with the gastro here in NJ today (and then I will decide if he is someone that we can work with or if we need to look for another doctor here or in California). I also found a local support group from the CCFA that meets once a month at a hospital about 10 minutes from my house and they are meeting tonight...perfect timing!
 
Welcome Nadine,
Sorry you have had to find us. Just a suggestion on the eating issue if she is finding it really difficult, she might try Ensure or Boost that way you both can be assured she is getting her nutritional requirements.
Glad you were able to find a support group quickly and get to a meeting. It is all so overwhelming in the beginning.
Hope the meds work quickly and she is feeling better soon.
 
@Jmrogers4 Thank you! Unfortunately (or fortunately) she ended up in the hospital yesterday and will be there til probably Monday or Tuesday. I am flying out early tomorrow morning to be with her. She was dehydrated and anemic. They are doing more tests and will tweak her meds and now she has doctors in California so that is good. And she met with a dietician today too.
 
Thank you everyone! I will keep you all posted. Got to go do laundry now...I have no clean clothes to take to California - lol!
 
Daltonsmom said:
Thanks---it has been a tough year. Despite his remicade, he continues to have symptoms and may possibly need to move to Humira soon. I am not looking forward to the switch, hoping we can hold on to remicade a little longer. He has started to develop antibodies, and the GI said it is unclear how much longer remicade will work for him.

I hate to see him in pain. If I could trade places with him and take this all away, I would do it in a heartbeat.

Thanks for welcoming us to the forum, I am sorry we have to be here....but it is awesome that we are not alone :)
Click to expand...

i wish I could trade places with my Son too.
 
I just posted this update on Jessie on my "Your Story" thread but wanted to update here as well and thank everyone in this group for all of your support!

Nadine

So Jessie is back at school at USC and I am back home in NJ. She was in the hospital at Cedars Sinai in LA for 6 days and was discharged on Monday the 13th (her 20th birthday!). She was treated by Dr. Eric Vasiliauskas and the IBD team and I can't say enough wonderful things about them. Jessie and I both feel very fortunate that Dr. V and his team will be taking care of her now. She was dehydrated and anemic and so they gave her IV fluids, IV Iron and also started her on IV prednisone. We decided on Remicade and azathioprine (still waiting for the genetic testing for the azathioprine) and she had her first Remicade infusion the day before she was discharged. She is on an oral prednisone taper and will see Dr. V again on Oct. 28th for a follow-up and her second Remicade infusion. She feels like a new person! She is eating, no more diarrhea, and says she has more energy than she has had in months.
 
Hi I am new to this grou[ so not sure if I am doing this right :). I have a 10 year old daughter with possible crohn's and ulcers. She is been having severe constipation since she was a baby (now 10) and has an anal fissure and belly pain, reflux and vomiting not helped with meds. She has a positive blood test for saccharomyces cerevisiae ab asca IGG and we have a strong family history of UC, crohn's celiac and other autoimmune conditions. Unfortuantely we have to wait several weeks to see the Dr.. I was wondering if it is possible to have crohn's when constipation seems to be more of the issue? She rarely has diarrhea but has very large bowel movements even on daily miralax.
She also has very bad reflux and some vomiting and is on her second reflux med with little relief.

Thank you!!!

Krmom
 
You will actually find quite a few kids that present with constipation, my son included, especially it seems if there is small bowel involvement. My son was dx'd at 10 and is now 15 and diarrhea has never been an issue except when he has had c-diff.
We also had reflux issues that have been resolved since finding the right medicines. Good luck hope you get into the Doc. soon and get answers
 
Hi krmom15. My son is 13 and was diagnosed w/ Crohn's 8 months ago. He doesn't really have either constipation or diarrhea. Bowel movements are pretty normal. He has had anal fissures and an anal skin tag that inflamed but mostly bad belly pain, nausea and occasional vomiting, and severe fatigue. I'm sorry your daughter is sick and you are going through the process of trying to figure out what is going on. I know how hard that is.
 
Yes, my daughter initially had constipation not diarrhea. It seems like a lot of kids present that way.
We had issues with reflux and it really took a combination of meds until it was controlled. She currently take Prevacid and famotidine and has been on Prilosec, Zantac and Carafate (I'm definitely forgetting some). I hope you can get in to see a doctor soon!
 
Puberty is here. With it, the lovely acne. What do your teens do or use to help with acne? Clearasil isn't cutting it and he's starting to become very self conscious about his face. He wipes down his face every night with a cleansing cloth and is currently experimenting with tea tree oil. We avoid any lotions with oatmeal due to Celiac. Sometimes he reacts, sometimes not, so he just avoids them. Any suggestions?

Also, it seems like the individual pimples go from tiny in the morning to super sized by evening. Would this have anything to do with Remicade and how it suppresses the immune system slightly?
 
My son has also struggled with acne but it was brought on by 5 months of pred while we were waiting for 6mp to kick in. He tried many over the counter lotions. The best to date is washing with Cetaphyl (GF) and in the morning he is using the prescription benza clin (sp?). He also used a low dose of retin a (tretinoin.025) at night. We tried everything over the counter so decided to go to a dermatologist as he was very worried about his appearance. The combination is working great! The derm said the banza clin was best as it has two meds in one to fight acne. It is expensive tho!!! Hope our experience helps!! Best of luck<3
 
Oh Mehita! We have done it all for my older daughter non IBDer with Cystic Acne. She once had luck with Proactive but then got super sensitive so can't use anything with salicylic acid or benzoyl peroxide.

Cetaphil is good as was Noxema. She has used EVERY natural line out there. Some work for a bit but then the skin gets used to it so we have to switch around a lot. We had excellent luck with Alloette (got the recommendation from Tesscorm) ...an aloe based product sold online. Her and her collage room mates call it the miracle acne stuff. Shipping is expensive but so are derm visits and drugs so.....

Some people swear by coconut oil applied to the face.

My older daughter does notice a huge difference when she isn't drinking enough water so maybe up the water. Especially going in to winter...the kids just don't remember to drink enough.
 
I know Catherine has fought acne with one of her girls and at one time she had said something about vitamin D playing a part and potentially helping. Maybe have his levels checked at next infusion and see if upping the d doesn't help. I do remember though it got worse before it got better...which btw is the way of many acne treatments. So don't abandon them too quickly.
 
Tea tree oil and coconut oil?? Tell me more!! I have both at home, and though I'm in my 30s I still have an oily complexion with pimples.
 
We used a green tea face wash (St Ives I think?). Also Neutrogena stuff (but only if he doesn't have sensitive skin since it has benzoyl peroxide). My daughter saw a derm for a separate issue who told her that she absolutely had to use moisturizer with sunscreen while using these products because they really dry out your skin.

We have had those super sized pimples (I swear they grow before your eyes) but it was before she was on biologics.
 
Well, the tea tree oil is working wonders! All we do is put a drop of oil on a cotton swab and dab it on whiteheads once in the AM and once before bed. I think we might drop down to just at night because it's drying out his skin a little.

There are a lot of essential oil/acne posts on Pinterest.

Today he put coconut oil on his face and a half hour later all the angry looking red bumps had improved visibly. I was shocked. Is it supposed to work that quickly??
 
Last edited:
I tried the coconut oil the other night after using a Neutrogena make-up wipe to remove my make-up. I wet my hands with warm water then got a glob and applied, really rubbing it in good. I let it sit for about 10 minutes, then wiped good with a warm cloth. My face was unbelievably soft! Not sure it helped my red complexion just yet but it felt good. Will try again tonight! I'll give a few days before trying the tea tree oil so I know which one is giving the best results. I'm too old to have pimples! lol
 
I wash my face with my regular chemical laden stuff then use the coconut oil as a moisturizer. Right out of the jar. My niece was over for three days at Thanksgiving. She had horrible bleeding dry hands. I kept applying coconut oil and she went home with beautiful clear skin.

I like the smell. Makes me feel like I am on a tropical vacation!

Coconut oil mentioned twice this week...good for weight gain also...don't get me started on the anti inflammatory properties.
 
Farmwife said:
Ok, the coconut oil treatment, do you just use plan coconut oil or something else mixed in with it?
Click to expand...

We aren't mixing anything with it. Just grabbing a bit from the jar, rubbing in out hands to liquify it, and applying it to his face. Heck, we're not even wiping it off because it's so dry here now that it's winter. I'm starting to use it too and liking it way better than the expensive crap I've been buying. I'm seriously impressed.

I do think, as with most everything, there are different levels of quality. We use organic and fractionated coconut oil.
 
Hi ! my name is Brian from Indiana, my son was diagnosed with crohn's 2yrs ago, he was put on a cortical steroid and azathioprine, he was 10yrs. old at the time, every since he has done great, no flares, cramping, diarrhea of any kind. he was being treated at Riley Hospital for children in Indianapolis.
All of the sudden just because some inflammation markers were slightly elevated they were talking about remicade, and remember he's still not have any pains, bad stools ect.. Then I looked into what remicade was and what it supposed to treat within the IBD arena. I couldn't believe they were actually talking about this for my son.
His symptoms to this day or lack thereof still does not warrant this more aggressive type of treatment. So we got the heck outta there.
So we got a referral to a new GI, so he wanted to do an MRE which we did and Doc said if it looked good, no colonoscopy, well it looked great but still insisted on a colonoscopy,(lie #1) so reluctantly I said yes since it had been two yrs. before his last one with the other doc. as we still sat in his office discussing the procedure we made mention of the fact we are not interested this remicade treatment, he said oh!! your son would not have to do that , he would have to be having flares pains and I would have to find scarring or abscesses or other abnormalities in the colon.(lie#2) visually the colonoscopy and endoscopy looked beautiful nothing abnormal, but he said the biopsies did show the little signs of inflammation going throughout the colon, he couldn't even tell me the degree of that inflammation, so because of that, It's got to be remicade, remember my son do this day has no symptoms at all, he is growing well, eats what he wants, but we are going try and change to a crohn's diet as best we can.
What are my options here? I will not allow my son to be on this remicade at this stage, so me and the wife are going to look elsewhere, is there anybody out there with this frustration and what is your advice.
Thanks so much!!
 
Yes, the meds can be scary but under controlled or uncontrolled CD can be even scarier.The risks with remicade are the same as the risk of azathioprine as far as the scary risks. Also, the risk of combo therapy doesn't mean when AZA and a biologic are taken together, it is if you have once taken one and then the other as well. So for anyone that has been on aza, 6mp or mtx then later on have to move to remicade then the risk for HCTSL is there.Newer studies have shown the risk to be associated with either med yet with starting remicade shortly after diagnosis the risk of surgery seems to be lower.

The treatment goal for CD is full mucosal healing. Since kids tend to have more progressive/aggressive disease there are a lot of kids who are moved quickly to remicade.


We have a diet section on the forum you may want to browse through. I think there may be a few parents that are trailing diet or have trailed different diets.

I hope your son soon finds remission!

Edit to add: My son has been asymptomatic with his CD for the last year. No GI symptoms at all. He has been growing vertically but his weight, no matter how much he eats stays about the same. He recently required surgery even though he's been on the big guns.There are a lot of kids here that have no symptoms with their CD. A lot of kids with no symptoms and simmering inflammation move up their current dosage or discuss other meds.
 
Last edited:
Can you ask for copies of your son's records from both places, feelsgreat? Since both GI's have said something, I wonder if they're seeing something and it's getting lost in translation. I'm not saying there is something going on, but it would be good to have his records anyway. How have his labs been? What dose of Aza is he on?

The only thing that's niggling at the back of my mind is maybe the microscopic inflammation is triggering their concern, as well it should be. If you poke around the forum here you'll read all sorts of stories of kids with perfect labs and no symptoms, but have low simmering disease. The problem with simmering disease is it can build scar tissue and cause strictures. Not fun.

Even if there is mild disease activity, I'd think they'd want to play around with the Aza levels before changing meds. Just my two cents.
 
feelsgreat said:
Hi ! my name is Brian from Indiana, my son was diagnosed with crohn's 2yrs ago...
Click to expand...

Hi feelsgreat, what issues was your son having initially that you took him in and ended up with the CD dx? If the latest biopsies show inflammation then the GI probably has good cause to think the disease is not under control.

As others have said, Crohn's may be asymptomatic, but if pathology shows inflammation and the labs show elevated markers, then maybe the disease is active. Also consider that the low-grade inflammation, especially if it starts showing up in the lab reports, has some systemic implications. The inflammatory process signals and activates various agents that circulate throughout the body and their action may not limited to the GI tract.

I think you are doing the right thing question your GI. It's a necessary component of becoming informed. Think about what makes sense to reduce the chances of ongoing damaging inflammation in the gut tissue, which is what leads to so many of the complications you hear about with this disease.

There's a lot of brilliant research going on, and we may see a breakthrough in understanding the disease, as well as safer and more novel therapies, in the next few years. Good luck with your decision.
 
Asymptomatic makes all these decisions so much harder.

I agree with Mehita in that there must be other options both docs considered before suggesting Remicade. As a patient, I would want to hear those options and why they feel they aren't good. I would also want a full explanation of what they are seeing and why the jump to Remicade.

At one point, my daughter's doc suggested adding a med to her Remicade because Remi wasn't quite getting her to full remission. EEN has been shown to be just as effective at Steroids if not more because you have the added benefit of mucosal healing. We chose to add Exclusive Enteral Nutrition. It was 6 weeks of liquid diet. The liquid is a formula. No food! Water and formula only. Some kids drink the shakes others choose am ng tube if they need the less palatable formulas. EEN worked to get my daughter to remission where she has stayed for 2 1/2 years. Perhaps adding EEN can help put out that simmering inflammation? Worth asking about.

All this said, I think docs suggest Remicade because it has a great success record. Further with kids there is a set window of opportunity for growth and simmering inflammation will interfere with that. Also, if there is simmering inflammation with no signs some docs feel it is even more important to attack it with the med with the best chance at dealing with it.

I agree with Clash that the risk profile is not that different.

Good luck with your decision. Make the doc(s) explain to you until you are comfortable with making a decision. They sometimes forget that they have seen this hundreds of times but it is our first time so they have to take it a little slower!

P.S. about a year after EEN we made some diet modifications for my daughter and her health took off. We use an anti inflammatory diet. I think that while the meds were getting most of the inflammation there must have been a very little bit left and the diet took care of that. We have backed off from time to time and definitely notice a difference when we do.
 
Last edited:
My son has minimal inflammation but inflammation is still ongoing inflammation and leads to scar tissue ( resection surgery ) strictures fistulas etc...
Just because the symptoms are the outside look pretty -does not mean stuff isn't going on inside and causing damage.
Biologics are being used earlier in the disesase to reduce the risk of surgery and increase the probability of long term remission & mucosal healing .

I realized you see remicade as all risk no benefit but honestly
Most gi are moving towards top down approach to change the natural history of crohns in kids .

Ds was placed on remicade at age 8
He didn't have a lot of inflammation but it was still in multiple places despite 6-mp and later Mtx.

He scopes after biologics showed not damage or inflammation.
If it saves more of his small bowel for later I am all for it.
Since once you cut the odds of surgery again are good.
You can live without a large intestine and have a bag
But you can not live without a small bowel .

Add in a doctor can not predict how tests are going to come out for any disease so you need to work with the test results after they are known .
 
Dear Crohnsinct,

Where did you learn about the anti inflammatory diet? I'd like to try it with my 15 year old son. Currently he uses 6mp. Off the pred now for 2 1/2 months and no symptom return. Waiting for next lab set. Did you use a specific book or program? Thanks for any tips!!!

This is certainly a journey!!
 
There is a lot of information out there on anti inflammatory diets as most diseases start because of inflammation somewhere in the body. However, I used Clean Cuisine (an 8 week anti inflammatory diet) written by Ivy and Dr. Andy Larson. They also have a website and facebook page. They are wonderful and encouraging people and take time to personally respond to questions about the diet etc. She has MS and has been able to control it in large part through diet. Her neurologist suggested this way of eating.

O's doc was adamant that diet wouldn't make a difference but now he can totally tell when she is off her diet. Nothing really bad happens but I imagine some values move a little and he calls us out on it. He does think that diet combined with meds makes for a great treatment and says that researchers are working on identifying types of Crohns and being able to customize diets for each type.

It takes a lot of patience and persistence but it is worth it when you see the payoff.
 
Thank you all who have responded to me, it has helped us a lot in our decision, it has been an agonizing process for me and my family as I'm sure it has bee for all of yours but I guess I still want to know why my son's GI has not discussed any other options other than remicade right off the bat, I guess that's something we will to have address with the GI.
We have been trying to educate ourselves more and more about this disease, I think we have just been in denial about all this since he has been asymptomatic for so long.
This forum has been great in educating us with this disease and we've only been on 1 day.

I guess another big question I would have, is there any financial programs or assistance out there that can help us, as you know remicade is so darn expensive even after insurance, we have fears that this could cripple us financially, if so please let us know.

Again thank you all for your support and experience with this.
 
Remicade has an assistance program called Remistart and it pays for co-pays for infusion up to $8000 for the first year and you can request extensions.
My son has been on remicade for a year in January and I have not even had to use my remistart card as the cost of the remicade has been covered by our insurance.
I was in the same boat as you and my asymptomatic son went nearly 4 years with simmering inflammation before we finally started remicade. In my son's words I didn't realize that I didn't feel 100% until now when I feel 100%. It's easy to see now that all these little things that we just always attributed to puberty/being a teenage and it was nothing big are gone and it's only in hindsight that the Aha! moments have hit because all those little minor things become part of the normal.
Best of luck, it's not an easy decision by any means and we still (GI and myself) shake our heads and say I guess we made the right decision and he really did need remicade based on his current state.
 
I think a lot of pediatric GI try to take into consideration what the best option is to give your child as close to a normal life as possible while still effectively managing the disease. I'm sure if you talk to your GI he would agree that EEN is effective, but may question whether it's practical enough to adhere to long term for a pre-teen. Conformance is hard.

Remistart, http://www.remistart.com/, can help with offsetting the cost of the drug but not the infusion facility charges.
 
Also, with Remicade and Crohns in general, you tend to max out on your deductible pretty fast. Our first level is %400 then we pay 10% our out f pocket max is $3,000 and after that 100% is covered. We have been on the Remistart and Remistart extended access for2 years now and they have just approved my daughter for a third year. The program is not income based at all. You pay the first $50 for the actual drug and they cover the rest. The administration charges (nurses and supplies) are not covered but those are pretty low compared to the cost of the med.

Remicade has been wonderful for my daughter. She actually has forgotten she has Crohns. She just remembers once every 6 weeks when she has to go for infusions or on doc appointment days. Otherwise, it has totally given her, her life back. She is bouncing along happily like every other teen. Well o.k. she did get psoriasis from the Remi but she is handling that fine as well.

I would still want to hear all the other options and want to discuss EEN with the docs and hear their reasoning behind why they think those options won't work. The patient/doctor relationship is a partnership not a dictatorship. You have to be a part of the decision or at least feel like you had a say.

It is true that EEN is hard but when we negotiated EEN for our daughter our doc had to agree it was the better option (as opposed to adding MTX to the Remi). He stated non compliance as a big factor. So we decided to give the EEN a try and if she couldn't do it then would fall back on MTX. You never know until you try. When we approached it with our daughter we just asked her to try one shake. Then one day, then another...before you know it we were three days in and she really felt she could do it. We tried not to focus on the 6 weeks part upfront but rather take small steps.

Good luck! Keep us posted.
 
Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.

That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.

There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
Good luck!
 
Same here it's actually cheaper for drugs once they are on biologics since there are programs like remistart /myhumira you pay the copay but... It still counts towards your deductible.
It's covered under medical procedures not prescription plan .
 
Jmrogers4 said:
Remicade has an assistance program called Remistart and it pays for co-pays for infusion up to $8000 for the first year and you can request extensions.
My son has been on remicade for a year in January and I have not even had to use my remistart card as the cost of the remicade has been covered by our insurance.
I was in the same boat as you and my asymptomatic son went nearly 4 years with simmering inflammation before we finally started remicade. In my son's words I didn't realize that I didn't feel 100% until now when I feel 100%. It's easy to see now that all these little things that we just always attributed to puberty/being a teenage and it was nothing big are gone and it's only in hindsight that the Aha! moments have hit because all those little minor things become part of the normal.
Best of luck, it's not an easy decision by any means and we still (GI and myself) shake our heads and say I guess we made the right decision and he really did need remicade based on his current state.
Click to expand...
thank you so much for your reply, this has been a very traumatic situation for our family, we are just coming into an understanding of this disease, we thought we knew more than we did until we joined this forum, I have to admit my wife and I have been so against all these chemicals, but when your faced with a situation like this, when we know our son is not doing as well as he should be what do you do, his future is what is important.
We do have the paperwork for remistart and we will fill it out and get started on it.
Again thank you so much for your reply
 
Maya142 said:
Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.

That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.

There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
Good luck!
Click to expand...

thank your for your reply, it has been a very difficult time trying to decide what to do, my son is not a big fan of this choice, but it has to be made, I think we will go with the remi, our son was upset about the decision, but that is our fault as we have always been against these chemicals being put into our bodies, but he is a child , he cant make that decision, we do, what do I do, I have to look out for his future and the potential complications that we could reduce by doing this now.
Again Thank you!!
 
xeridea said:
Hi feelsgreat, what issues was your son having initially that you took him in and ended up with the CD dx? If the latest biopsies show inflammation then the GI probably has good cause to think the disease is not under control.

As others have said, Crohn's may be asymptomatic, but if pathology shows inflammation and the labs show elevated markers, then maybe the disease is active. Also consider that the low-grade inflammation, especially if it starts showing up in the lab reports, has some systemic implications. The inflammatory process signals and activates various agents that circulate throughout the body and their action may not limited to the GI tract.

I think you are doing the right thing question your GI. It's a necessary component of becoming informed. Think about what makes sense to reduce the chances of ongoing damaging inflammation in the gut tissue, which is what leads to so many of the complications you hear about with this disease.

There's a lot of brilliant research going on, and we may see a breakthrough in understanding the disease, as well as safer and more novel therapies, in the next few years. Good luck with your decision.
Click to expand...

2 yrs ago my son was diagnosed with a parasitic infection called giardia, it is a parasite that infects the intestinal tract, it is known to come from infected water such as shallow water wells in rural areas caused from fecal contamination from a variety of animals due to it's lack of depth, now we live in a rural area but our well is a drilled well and is about 125' deep, safe from contamination, but our neighbor who lives in a trailer with a very shallow well has 2 kids, who were not all that clean, we have always wondered if that is were this all started, our son has not been the same since, even though with antibiotics the giardia parasite was killed off, he has continued to exhibit the symptoms of crohn's , we have always questioned whether is this just some lasting affect of the giardia, or did this traumatic episode trigger the CD diagnosis.
Thank you for your reply!!
 
We have all been there. I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!

Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!
 
Maya142 said:
Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.

That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.

There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
Good luck!
Click to expand...

thank you for your reply, and for the (FYI) on the site for remicade, it has been very difficult for our family on this decision, I am so grateful that your children are doing great with this treatment, until we discovered this forum, we thought we new everything about what we need to do about this disease, we have probably learned more from this forum than we could from our Doc.

Again Thank You so much for your feedback!!
 
crohnsinct said:
We have all been there. I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!

Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!
Click to expand...

LOVE your response!!, made me laugh!! which has been hard to do lately, I have always said that these doc's hold us hostage, giving us this ultimatum, it's this way or the highway, they ware you down until you just give in, but at the end of the day I have look out for my son, after all it is still his future we are trying to protect, always, always, always do your best to keep informed.
 
Mehita said:
Can you ask for copies of your son's records from both places, feelsgreat? Since both GI's have said something, I wonder if they're seeing something and it's getting lost in translation. I'm not saying there is something going on, but it would be good to have his records anyway. How have his labs been? What dose of Aza is he on?

The only thing that's niggling at the back of my mind is maybe the microscopic inflammation is triggering their concern, as well it should be. If you poke around the forum here you'll read all sorts of stories of kids with perfect labs and no symptoms, but have low simmering disease. The problem with simmering disease is it can build scar tissue and cause strictures. Not fun.

Even if there is mild disease activity, I'd think they'd want to play around with the Aza levels before changing meds. Just my two cents.
Click to expand...

Thank you for your response, sorry took so long to respond, my sons aza dose is at 100 mg, the max for his weight, and there is still this smoldering inflammation going on, he is 12 yrs of age and weigh's about 74 lbs, he growing upwards, but not in weight, and I think your right, it is this smoldering inflammation that is present, even though he is asymptomatic that is concern.
Than you for your response!!
 
Hi everyone! Looks like I'm late to this party! I've been away from the site for almost two years, and while i was gone, my daughter became a pre teen! Lol. Now I see Lori started a group for that lovely age braket. I used to read posts from parents who described their kids' lack of compiliance and think to myself that Marni would never act that way about taking her meds or treatments. Ha! We're sure there now! I also started a forum for teens and pre teens with IBD on Facebook so the kids could connect and vent/share. It's brand new, maybe a week old, so just getting started. Let me know if your kids have Facebooks and I'll post the link to the page/group. It's private. I'd love for Marni to be able to correspond with other kids her age about IBD in addition to her camp Oasis pals.
 
Lori1973 said:
Thank you Julia...our son is 14 years old with delayed puberty, so we are definately looking for any ideas to continue progress. Last week we had scans, swabs and labs done to determine why our son was so tired for about two months...Is it Crohn's related or puberty? Still waiting on results. Will share any info that I receive from our experiences as well as looking forward to any of the info on here to help us!!!
Click to expand...

My son has delayed puberty as well... yet that runs in our family...but perhaps that is Crohn's related - although no one in my family before him and then me, has been diagnosed with Crohn's. We see a Endocrinologist next month to determine if he needs to go on hormones.
 
crohnsinct said:
We have all been there. I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!

Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!
Click to expand...

lol! I was thinking the same thing! My doc thinks food has nothing to do with it...at all. Kind of frustrating, but I like her otherwise...
 
Here is a strange one... My daughter has been dating. She is now dating her 2nd boy, with her 1st relationship lasting about 4 months. A pattern I noticed is both of these boys have someone in their lives with Crohn's. Her current boyfriend's mom has it, and her last boyrfriend's aunt did. Anyone have this come up?

I guess it is good the boys would know a little about the disease already.
 
Maybe your girl feels comforted or attracted by the fact that the boy(s) might be a little more understanding about the disease since they have a loved one with it.
That's as far as I can guess.
Grace won't be dating until she's 30 according to get dad. :lol:
 
Likely to just be a coincidence... given the high per capita rate of crohns in Toronto. Once S was diagnosed with crohns, suddenly we began to hear of tons of people we knew who had crohns. Not including three extended family members with crohns/UC, we became aware of eight or nine others (all related in some way to close friends - sister, grandfather, roommate, teammate, etc.)

But, I do think it probably gives her some comfort that they are aware of the illness. :)
 

Similar threads

M
What if we could genetically test for IBD carrier status?
Replies
5
Views
2K
Scipio
Scipio
G
My teenage son has IBD
Replies
24
Views
4K
goldberry
G
M
No Symptoms - ulcer in terminal ileum
Replies
2
Views
5K
ronroush7
ronroush7
M
Not diagnosed Yet
Replies
3
Views
1K
ronroush7
ronroush7
L
Parents of kids/teens with Crohns in USA - Market Research
Replies
4
Views
10K
lila.mann
L

Latest posts

Back
Top