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Hello:  My daughter was diagnosed with IBD (not definitive whether it's UC or CD) 3 years ago.  She did great with Colazal until June when a bad flare landed her in the hospital for over a week.  The doctor said I had to try immunomodulators.  We started her on Imuran last Friday.  I am really nervous about it and the possible side effects.  Anyone out there have their child on Imuran, how long have they been on it, and how is it working out?  Thanks!

 Reply posted for alanschachter.

Thanks Alan!  I'll check those out...

 Reply posted for Lca.

Thanks Lca, I will keep working on it.  I really pray that better (less risky) medications come into use.  I keep reading about that Naltrexone, I sure am curious what the doctor will say about that.  Sounds hopeful, that medication.  The diet is going to be really hard for us, but little by little.  We are keeping a food diary and will address it as needed.  Take care and I'll be posting!  Good health to you.  Thanks

 Reply posted for sraymom.

I'm glad you have an understanding doctor. Here in UK I think our doctors really want to do their best for us but their national guidelines are over influenced by commercial interests and they are obliged to stick to them. I always listen to my doctor and go for routine tests but  now I am able to consider the drugs as a safety net and not a constant lifeline.

Finding a stable path with IBD sure is hard work and it's not much fun - especially for children - but keep working on it. For me it has got easier and I hope it does for your daughter and all the other children too.

 Reply posted for Lca.

I know, it seems like it's just a drug therapy mindset, but they do want to keep the children healthy to grow adequately.  So I understand the drug therapy but you're right, diet must play a crucial role in managing.  Her doctor is terrific and very reputable, top IBD pediatric GI.  He doesn't discourage the diet, he just acknowledges that it's really tough for a kid to follow it.  We are going to see him Thursday and a nutritionist next week.  I have to keep working away here so we can figure out everything.  As you know, it sure is a lot of work!

 Reply posted for sraymom.

Not at all offended - I've been offline for a few days as my computer has been away for repairs. I know just what you mean about the internet. It's really hard to say the right thing especially with so few words.

I only post my experience with diet to parents occasionally in the hope that some will start to think  there might be better way forward and do their own research.  The longer I have used diet to control my uc and the more improvements I  see the more sure I am that it is a much healthier way to go but the lack of professional advice (and even discouragement) is really frustrating. - trying not to sound too bossy, single minded or unsympathetic to children!!

 Reply posted for alanschachter.

Hi Alan:  I went to Facebook and searched for Laura Schachter and 5 came up, I'm not sure which one is your daughter!  Can you please let me know?  Steph would like to connect with her as you suggested.  Thanks!

 Reply posted for Lca.

Hi:  I hope you didn't take offense to my posting last week.  In hindsight it didn't sound the way I wanted it to.  Email is funny like that, sometimes things aren't conveyed the way we want them to be, you know what I mean?  Regardless of age, this disease is hard for everyone afflicted with it.  I still value your input.  Thanks~!

 Reply posted for alanschachter.

Thanks Alan!  I will tell her, I like that suggestion.  She isn't allowed on Facebook yet :~)  but she can look her up and perhaps start an initial introduction using my account - I'll just sign her in to see Laura's Facebook if she would like to do that.  I know that connecting with kids who know what she is going through will be really beneficial for her.  I appreciate your offer.  I'll talk to Steph tomorrow.  Thanks again!

 Reply posted for Lca.

Thanks Lca!  I hope you stay well also.  Let's keep praying for a cure.  Thanks for conversing with me!

 Reply posted for sraymom.

Lots of luck. Whichever way you choose I hope your daughter stays well and that you are successful in finding other children to help her.

 Reply posted for Lca.

Thanks Lca.  I will continue to do my research.  I'm not the one who will make a big issue about food, my daughter will.  She needs to connect with other kids her age so badly (I am in the process of finding a connection thru CCFA for her).  I want to hear from other kids like her.  I want to know how they deal with the diet.  I want her to be able to converse with them and see how they manage to deal with it.  I can only speak for what I think, not what she feels (mentally and physically). You can tell me lots about the ways you deal with it, but with all due respect, you're not 11 nor a kid.  I follow a rather strict diet myself because I like to eat healthy.  My family and I never go to fast food restaurants, we don't fry and I love to cook.  So I really won't have a problem doing this diet with her.  It is really hard to feel left out (at a party) when you're 11.  She's always had to bring a chocolate bar to a b-day party and not have the cake because of her peanut allergy.  But, she did have a "treat" instead.  If I can somehow get her through the next 2 years or so then maybe the diet will be easier for her to accept and follow.  I feel really bad about it, but I feel like it's a good idea too.  I'm torn and I need to sort through everything.  I find it confusing still that this diet isn't something the doctors are enthusiastic about.  Must be my naivete about the medical world.  I am going to buy the book and keep doing my homework!  I'm sure little by little me and my daughter will come to terms with such a drastic change.  I'll also need to change my way of thinking about nutrition.  No grains?  No dairy?  All our life we are told that it's so healthy for you!  AAAAHHHH!  Thanks Lca!!

 Reply posted for sraymom.

Much of the science is there. It just hasn't been interpreted  and put together for non-scientists. The blog Hyperlipid has some fascinating alternative interpretations of nutritional studies and so does  Gary Taubes' book.

Although I  felt better on scd, knowing more about the science has given me lots more confidence to continue. My doctor acknowledges that I am doing  well and listens to my views on diet but does not discuss them! I think doctors have very little training in nutrition, especially for healing,  except for a few specific conditions like coeliac disease. I think many people think the diet is not working when they go downhill for a while - especially if they don't have  medical support. Itchiness kept me going and it was only looking back that I saw real and continual improvement - a pill is much easier especially when you are told it is the only way!

I have never stopped taking mesalasine and I have been using the probiotic Mutaflor for a couple of months but I haven't needed a single steroid tablet since changing. I still have some very light bleeding quite regularly but threatened flares are stopped rapidly by being extra strict and I can nearly always see the cause. I don't search for magic supplements as I think the science is usually lacking and some can cause artificial imbalances when  the right diet will eventually put things right.

Educate yourself as much as you can and don't make a big issue about food. For myself I look for things I reallly like eating as a diversion from pizza etc as I have absolutely no will power.
Lots of good wishes for the birthday.

 Reply posted for Lca.

So the only thing you do to keep yourself in remission is the SCD??  That's amazing!  I wonder how many people it doesn't work for, I've only read about people that it does work for.  Of course that is totally worth the sacrifice, to stay healthy just with diet.  What stumps me is why don't doctors promote it more?  How is there no scientific evidence that it works?  Each time I've talked with the CCFA or the doctor, they say there is no solid proof that it works.  I'm confused by that.  Must not work for everyone I guess.  Believe me, if my daughter were willing, I would do it for her and I would do it with her.  I'm hoping we don't have to do it but if worse came to worse we would.  I'm at a point right now where I'm not sure which road to take.  I know that sounds stupid considering diet vs. medication.  I just know my daughter will be so sad cutting out her favorite foods.  I can't make her do that right now.  She will be 11 tomorrow and her world is fragile.  Her peanut allergy restrictions frustrate her, I can't imagine telling her she can't have macaroni or pizza ever again.  I will take things as they come and adjust my perspective and methods as necessary.  I am going to research Naltrexone some more too.  Supposedly it is like a wonder drug for IBD with virtually no side effects.  I will see what her doctor thinks!  Thanks!

 Reply posted for sraymom.

Just me. I've had uc for 9 years. The first five I never missed a pill but gradually deteriorated. 6 mp and azathioprine gave me very bad cramps and sickness. Then I developed a very severe blistering rash which the dermatologists couldn't identify and a severe flare of uc. Fearing surgery was the next step I tried scd as a last resort and I haven't looked back although it was very up and down in the beginning (the rash was the best indicator it was working  and kept me going  as it rapidly disappeared but the itchiness returned if I ate the wrong things).

Looking back I can see that my health has gradually improved since I changed what I eat (and not just uc) and I am almost certain that low carb would improve the health of  very many people. My children are fit, athletic and have no weight problems and they just don't seem to want sugary snacks very often any more - they do eat chocolate, sweets etc sometimes. I just never need to tell them they have had too much .

I don't know much about naltrexone but without any doubt I would investigate it before taking any kind of immune suppressant again.
From my own experience I would recommend finding a stable place with the medication and then do lots of research of your own. I often wonder if I would have had the confidence to take this path with my children if  they were ill and I had not felt the difference myself.

 Reply posted for alanschachter.

Ok, great.  Thanks Alan, I'll be in touch.  I'll check out that abstract too.

 Reply posted for alanschachter.

Hi:  Can you tell me more about Naltrexone?  I've checked out the website for the most part.  What do doctors think of that drug?  Are they willing to prescribe it to young children?  What feedback have you received from the doctors?  Did your daughter's doctor provide a prescription for it for her?  How long has she been taking it?  I'm going to examine this more.  Thanks!

 Reply posted for Lca.

Thank you!  You're right, but people will be people right?

I will get that book, sounds good.  I need to be subtle, my daughter has such a huge issue to grapple with as it is, I can't throw her into a radical diet.  When she's older, then things change (mentally), I'm sure you know what I mean.  At least, I'm hoping I can get her through the next 2 years or so without having to resort to the SCD diet.  Have you heard of Naltrexone?  What is your story if you don't mind sharing?  So are you the one with IBD or is it one of your children (or both)?  Thanks~

 Reply posted for sraymom.

I agree it's a great support board with lots of reliable advice on medication and alternatives. Just comes across as a bit judgemental sometimes when more open discussion could be more valuable.

Another book really worth reading is Life Without Bread. It should help you make subtle changes in the right direction that are a bit less extreme than scd. I think my children have changed by an 'unconcious'  approach as I never expected tham to follow me towards low carb, it's just happened and my daughter, living away from home for the first time, says she doesn't like eating like her friends as she runs out of energy too fast.

 Reply posted for alanschachter.

Thanks!  I'm going to buy the SCD book, start reading it, and take things as they come.  I posted more in different replies if you want to read (I didn't want to type all the same stuff!).  Thanks so much for conversing with me, it sure is a big help!  I like this support page, I wish more people would partake!  The more perspectives the better

 Reply posted for Lca.

Thanks for your input!  I appreciate any information I can get.  My daughter's 3 favorite things are pizza, pasta, and goodies.  Given her age, I will be putting her into a depression if I take away these things.  She also has a severe peanut allergy so she is already quite limited on baked goods and restaurants, etc.  I'm hoping when she is a bit older she will comply.  I'm going to take it as it comes and see how things play out.

Thanks!

 Reply posted for sraymom.

I'm sorry I don't have a good alternative to pasta or bread (the most difficult to give up for me). I usually put pasta and curry sauces on green beans and peas. I've never seen a spaghetti squash (in UK).

You can use ground almonds for baking. I make scd muffins with beaten egg whites and no butter as it makes the texture very oily. Sticky lemon cake is my favourite - muffin cake with hot honey and lemon juice poured on top while hot. Cheese crackers - ground almonds, water, salt and parmesan cheese made like pastry and rolled thinly - are the best thing I have found to go with cheese, pates, dips etc and for picnic lunches.

Christmas is the most difficult and I usually cheat and have a few sweets and then suffer a bit for a couple of days but if I was really organised I would make some scd toffee (very sticky) and special ice creams and sorbets. It sounds as though you are already doing many of the right things. If you enjoy cooking it just takes a bit of alternative thinking once you know some quick, basic recipes. Best of luck.

 Reply posted for alanschachter.

Thanks, I'll check it out!!

How about breakfast cereals, lunch (breads?) and baked goods?  Does the SCD allow any of these and if not, what have you substituted them with?  I can't imagine Christmas without Christmas cookies or halloween without Junior Mints or some sort of candy...

Thanks!

 Reply posted for Lca.

Hi:  Thanks for the reply!  I guess we are more than halfway there already.  I have to force the kids to eat potatoes, they don't even like rice.  I don't use vegetable oil either (olive) and I use butter.  A huge issue would be pasta!  If I could find a suitable "replacement" for it, I would be that much further!  I make really good pasta sauce (toot my own horn) and my daugher LOVES it, she drinks it practically.  Any suggestions?  Thanks!

 Reply posted for alanschachter.

We will check out the site together this week.  Thanks!

 Reply posted for sraymom.

My first  reply seems to have disappeared into space. I really just wanted to say please don't think of scd as a difficult diet for the family. It is really just a different way of thinking about food. It has made a huge difference to my health and I have found that my family have gradually changed to almost scd by choice. They rarely eat the extra potatoes, rice or pasta that I make for them and I have to hide my scd fruit yogurt ice cream if I haven't made enough. Vegetables with butter/lemon/garlic/tomato/indian spice sauces replace the starches and I no longer use any refined oils.

I think it is very important -and easy - to reduce omega 6 oils and increase omega 3s. I eat butter, animal fats and cold pressed olive oil and never use refined veg oils. Studies show links between PUFA oils and uc, macular degeneration and some cancers.

Low carb eating stabilises insulin and bread and biscuits which used to disappear from our cupboards rapidly are often thrown away uneaten because we don't often need to eat between meals now. For me low carb helps but scd adds even further improvements for uc.

 Reply posted for alanschachter.

I have checked out those websites but not very thoroughly, I will look again.  My daughter is in an angry stage at this time and rebelling against any idea of the SCD.  BUT, I am slowly making changes and she is cooperating.  I think I will take a more subtle approach while on Imuran, and keep doing my research and small changes along the way.  I would totally go on the diet with her, I'll do anything to support her but having the whole house on the diet would be almost impossible.  Not everyone (adults included) is as sacrificing as the mom would be.  I am going to buy the book, and I'm going to keep working on a better solution.  Thank you for your input, I do appreciate all the help and information I can get.  I'll keep posting along the way! 

 Reply posted for sraymom.

I agree with u I don't have to fight with the doctors I just hate what all this does to the kids and I know that I have to put her on meds that are horrible to help her but once she is better and able to try a healthy approach to all this I can try.I wish I had the knowledge to figure it all out but, i didn't go to  medical school lol its just scary putting faith in someone(doctors) but, u have to believe that they are here to help and want to help and wouldn't do anything to harm our kids. right now my 15 year old is sick with some virus and they don't know whats wrong I hate that there isn't much I can do but wait and pray and hope she doesn't pass it to my UC child since she is on imuran and remicade! parenting is hard we love our kids but, that isn't always enough so we have to trust our doctors to help but also keep our mommy radar up too lol

 Reply posted for alanschachter.

Hi:  I don't have to fight with the doctor, he isn't forcing me to take this path but I feel like I have to because of her age and she has to be flare free to grow (physically) and be emotionally healthy and happy.  The only other thing I can try that I have figured out is the SCD diet.  But, my daughter will NOT do a restrictive diet at this time and I can't force her.  What other options do you know of?  I would like to gather as much information as I can.  She will not be staying on Imuran long term.  I don't plan on keeping her on it forever, I'm not sure how long yet.  I would like to hear other options, that would be great and appreciated.  Thanks!

 Reply posted for sraymom.

just checked the web sight tonight(7/22) you message was on there. thanks for all the chit chat it makes me feel like i have a friend in all this that totally gets it because your right there with me, I looked in to the support groups in Sacramento area and they don't have a parent group and didn't encourage me to bring my daughter to the group so this is my only outlet.  my daughter is still on the prednisone too , I hope thats not the ONLY reason she is getting her energy back I'm crossing my fingers and hoping that remicade is the one that works for her and prednisone(and other meds) can be a thing of the past also I hope none of the side effects come about. glad your daughter is felling better and hope she can enjoy the summer

 Reply posted for lisaw.

Hi Lisa:  My daughter is doing really well, thanks to all the medications she is taking.  Her doc thinks its the Prednisolone that is doing wonders for her (I'm sure he's right).  So far so good with the Imuran, but it's only been 3 weeks.  I pray all the time that it will work for her with no problems.  She is just getting energy back now and it's been like 3 months where she wasn't up to doing much of anything.  I hope your daughter can play ball.  Remicade can be a scary process but I've read some pretty positive things about it too.  Have you seen the webinar on the CCFA's website by Corey Seigal?  He talks about the Immunomodulators and biologic therapies, it is very helpful.  If you check it out you may feel more comfortable.  We sure seem powerless, huh?  It's like we have no choice (we don't really) and we have to put our kids on these medications... it really really sucks badly.  Pray for a cure, right?  Or better treatments with less side effects.  I hope your daughter feels better soon.  I'll check in with you and see how she's doing on the Remicade.  Take care.

Jenn

 Reply posted for lisaw.

Hi Lisa,

I just typed you a rather large reply and my computer (or this website) is screwy right now.  Can you tell me if you got it this evening?  I don't think it posted.  If it didn't, I will try again tomorrow.

 Reply posted for sraymom.

Hello, I was wondering how things were going with your daughter? my daughter has started on what everyone on this web sight is calling the big guns... Remicade so far no bad effects but, she is also still on her imuran prednisone and suffazine she has some energy back and we are going to take her to softball practice and see how she does but, I'm not thinking she is completely ready,nationals are coming up and she doesn't want to miss out so if she wants to play then she has to start getting back in shape. just a little in sight on my life lol

Lisa

 Reply posted for lisaw.

I'm hearing you, the stress is tremendous.  My daughter is going to middle school and while her class was celebrating leaving elementary school we were watching movies in the hospital.  It sure is heartbreaking to see them missing out on life.  I HATE IT so much, I can imagine how much they hate it.  Check out the information alanschachter sent me, you may find it helpful too.

 Reply posted for alanschachter.

Thanks so much for the reply and information, I appreciate it!  I will surely look into the naltrexone and those websites.  I will ask my daughter if she would like to connect with yours.  She is a little shy about it and hasn't felt like "sharing" yet with older kids, she did connect with a girl her age once.  She feels more comfortable with the same age but I will still see, perhaps she will change her mind in the near future.  Thanks again!

 Reply posted for sraymom.

I too am going to start my daughter on a diet not sure if its  what everyone is talking about but I found a book and want to see if it will work.I will do anything, I been so stressed I have been making my self sick and I cant have that I have to be the strong one. if she can get back to being a normal child and not sitting around to tired to do stuff I'll be a happy camper also I would like to stop worrying about the meds my daughter takes. I felt really bad this weekend my daughters softball team played ,we took 2nd place and all she could do is sit on the bench.

 Reply posted for alanschachter.

Hi:  Thanks for the reply.  Why did your daughter go off the SCD and what made her go back on it?  What is LDN?  I know my daughter won't cooperate with the SCD, at least not now.  It sure is hard to convey information to kids sometimes but if we reach a juncture where things change again (or don't work), I will certainly re-visit the SCD.  What is your daughter's history if you don't mind sharing?  Ups, downs, good, bads, flares etc.  Thanks!

 Reply posted for AZMOM.

Thanks for the reply!  I think my fear is not being able to "fix it" and to not be able to control it for her.  You know how us moms are!  Also, I feel like my hopes are dashed.  You know how it feels to think into the future and know your child isn't totally healthy, it makes me really sad.  I have been struggling to come to terms with this change in her illness (being that we had 3 pretty decent years) and now we have to move up to these drugs.  Jeez, our kids are so young to have to deal with this.  It sure puts a lot of pressure into the mix and gets hard to accomodate everyone in the family.  I have a son who is 8 and another daughter who is 3.  Seeing Steph in the hospital and suffering for the last 3 months has really scared me and made me nervous.  Thanks Claire's Mom, I needed to vent and connect with another mom.  It's us against IBD!  I pray pray pray for better drugs and a cure, like we all do right?  I wish your daughter (and you) health.  Thanks again!

 Reply posted for AZMOM.

Oh and you are NOT throwing her out to the wolves.  Love your heart.......

 Reply posted for sraymom.

Claire was also diagnosed with JRA at age 3.  So Crohn's was her second autoimmune problem.  She was hospitalized for 2 weeks.  So the initial recommendation was the immunomodulator.  We had done it before for the JRA (Methotrexate) because she was severely ill but she didn't tolerate Methotrexate well nor did we get the response we were hoping for.

 Reply posted for AZMOM.

Hi, thanks for the reply!  Have you previously tried any of the 5-ASA's and did you have any good results?  Have you tried anything else besides the immunomodulators?  I feel like the 5-ASA would be worth another try.  She flared just once while on them but it was a bad one and the doctor thinks she will wind up in trouble again if I don't go to Imuran.  I can't stop worrying about it.  I am afraid of chickenpox, thrush, skin infections, etc.  I am having trouble coming to terms with accepting putting her on it.  I feel like I am casting her out to the wolves.  Any thoughts or stories that would help?  Thanks!!

 Reply posted for sraymom.

My daughter is 7 and has been on 6MP (Mercaptopurine) for a year - Crohn's Disease.  She has done very very well with no medication related side-effects.  We do watch her diet, rest, exercise, etc - as we do for both our children.  Quite frankly, the "healthy" one has had more viruses, infections, etc than the one on the immunomodulator.  

 Reply posted for lisaw.

Believe me, the worry and stress is so bad, I totally hear you.  My daughter did well with the Colazal so I didn't really have to worry about her for the last 3 years until now.  I dread Imuran, and other "big gun" medications.  This site is pretty great, I have found so much information and the webinars (under one of the tabs on the left of the site) are very informative.  I just keep reading whatever I can get my hands on so I can feel prepared.  My daughter was diagnosed when she was 8 and we keep it a secret from all of her friends, for now.  She was embarrassed but seems to be better about it now that we were barraged with doctors and nurses asking about poop, poop, poop.  I never realized how indicative it is of disease activity though!  As for your daughter connecting with some kids who have it too, I have contacted my local CCFA chapter and they will put you in touch with someone who runs the Power of Two program.  They will try to get a match for support for you and your daughter.  I am in the process now.  Camp Oasis (run by the CCFA) is supposed to be awesome for kids but my daughter is hesitant.  I would love for her to go, I know she would benefit greatly.  Hopefully she will want to go some year.  Keep researching all the information here at the CCFA website, you will find so much helpful material.  Also, I've called the 800 number a bunch of times just to talk to a CCFA person, they are wonderful and very supportive.  It sure helps.

 Reply posted for sraymom.

my daughter was diagnosed about a year ago. all the sudden she got sick and crashed quick she was very anemic, the doctors thought she had cancer at first then while talking to the oncologist she heard some trigger words( like blood in her stool )and brought in the GI and he gave her a colonoscopy and found the UC.  I was surprised she wasn't hospitalized but, they sent her home with prednisone and sulfazine. the sulfazine wasn't working she was showing signs of being sick again thats when they put her on the imuran but she still takes the sulfazine.I too am going to try a diet, I found a book and ordered it,we shall see.I am new to this sight I have been looking for answers and people who get what we are going threw, I'm going to look  in to support groups maybe my daughter will find kids her own age to talk to about all of this,she is so embarrassed and kinda in denial she always says shes fine and wont tell me when shes getting sick till I notice the signs then its far along. its been hard for me to deal with ,not sure if its just me but,I feel like no one gets it and wonders why I'm so stressed about her and the meds .

hope this all helps you!

 Reply posted for lisaw.

Thanks for the reply.  Her doctor casually suggested Remicade too (in case Imuran didn't work) and that terrifies me.  It's just not an option in my head right now.  I am going to really investigate that Specific Carbohydrate Diet (breakingtheviciouscycle.info).  I asked the doctor if there were any other options and he did mention that.  The docs won't back it up really (not enough results) but from what I've read on people's comments is that it has worked wonders for them or their kids.  It is extremely difficult for a child to follow (no wonder there) but I am thinking that it would be preferable to Remicade, at least worth a try.  I will watch her for side effects (God forbid) and I'm praying I've made the right decision.  How long has your daughter had IBD?  Has she tried any other medications in the past and did they work for any long period of time?

 Reply posted for sraymom.

my daughter just turned 11 and is on imuran so far no side effects but, its not working and she is back on the prednisone and they want to start remicade now. not sure what is the right path to take I'm looking in to all her options,I hate having to make life changing dictions for her nothing is easy. my advice would be watch her closely while on the imuran,you might see something before the doctors and don't let them make u feel like its nothing(I GET THAT ALL THE TIME AND IT TURNED OUT i WAS RIGHT)