Community Forum

Hi:  Anyone out there have any positive results (kept flares at bay) with probiotics and/or fish oil?  My daughter took them plus a 5-ASA for 3 years and did very well (when she remained on the 5-ASA) with the exception of 2 not-so-bad flares.  She flared recently but this time it was confusing.  She was having all the symptoms but her scope revealed no inflammation.  2 months later she had to be admitted to the hospital, she lost 10 pounds in 5 weeks and was in rough shape.  She had bad inflammation all throughout her colon and some in the ileum.  When I think back, I had her stop taking the fish oil because I thought it might be making her have diarrhea.  She wasn't consistently taking the probiotic (Culturelle) either.  Then she wound up with that bad flare.  I can't help but think that stopping those 2 natural remedies contributed to the flare.  Thanks for any input!

 Reply posted for alanschachter.

Steph said she will mention it!  Steph will be 12.  Can't wait!

 Reply posted for alanschachter.

Sure!  I'll ask her to put that out there, that would be great!  Steph has met another teen (15) from our home town who is going to be one next year.  I can't wait for Steph to go!

 Reply posted for Lizzies Mom.

That's great, good to hear!

Steph is looking forward to going to Camp Oasis next year, she wasn't well this year so she was hesitant but she definitely wants to go next year.  I can't wait for her to experience it!

Take care!
Steph's Mom

 Reply posted for sraymom.

I am so glad the appt went well and that things are looking up.   There is definitely a big trial and error period, but it does get easier.

Lizzie is doing great... thanks for asking.  She is thankfully in remission and just taking the normal meds and supplements for maintenance.   She just returned from Camp Oasis and had the time of her life.   You may want to check it out for Steph for next summer. 

Lizzies Mom

 Reply posted for Lizzies Mom.

Hi!  The appt went well, I was already armed with information regarding the SCD diet so she gave me a lot of helpful information.  She was excited that Steph wants to do the diet, that's what's overwhelming!  It is a lot of work but if she can get off the meds (for the most part) it will be worth it.  I don't mind cooking and I am learning as I go.  I'm really hoping it works...

Thanks for checking in!  How is your daughter doing these days?

Steph's Mom

 Reply posted for sraymom.

Hi Steph's Mom,

Just wanted to touch base......how was the apt. at the nutritionist?  Hopefully not too overwhelming.

Hope all is going well.

Lizzies Mom

 Reply posted for Lizzies Mom.

Hi there!  I've read that too, for them to have smaller meals and chew really well.  I'm still doing my research and figuring things out.  I like keeping the food diary, it does help.  I'm looking forward to the appt tomorrow with the nutritionist!  I did make the appt a while back, I knew we would need it.  I'll let you know how things are going.  Thanks for the reply!

Steph's Mom

 Reply posted for sraymom.

I just typed a long-winded message, but it disappeared.... not really sure where it went??  Anyway, it is good that you are able to see the nutritionist so soon.  I have found it to be invaluable.  We've had our share of ups and downs over the years and have really benefited from having one on staff.

One thing that works for Lizzie is smaller/more frequent meals.   Though all people are different, it may be worth a try.   The whole chicken sandwich may have been more agreeable if it were eaten 1/2 + 1/2 say two hrs later, making sure it it chewed into tiny bits, and definitely not on whole grain.

A lot of people have had much success with the SCD plan, who knows, it may be a good match for her.  Trial and error has been key for us.  Good luck and keep us posted.  

Lizzies Mom 

 Reply posted for Lizzies Mom.

That's great!!!  I'm glad to hear that your daughter is doing so well!  That sure is exciting.  Steph is at a juncture where I need to make more dietary changes (a grilled chicken sandwich - plain) didn't work out so well.  Her tolerance changes from day to day, it's getting really hard to manage.  We may be trying the SCD diet.  We will see the nutritionist next week.  Thanks!

 Reply posted for sraymom.

I am so glad to hear she is doing well.   The food diary was so valuable when we were first diagnosed.   As for IBD, IBS, CD, etc., don't let it make you feel too crazy/overwhelmed....they pretty much all fall into the same category or "umbrella".   Hopefully after the taper she will continue to improve and flourish.

Lizzie is doing really well (knock wood...yes, I am extremely superstitious).   She finally had a great doctors visit with a weight gain of 3.4 lbs. and 1 inch!   We were so excited, we flew out of the doctor's office WITHOUT our prescriptions!   

I'll keep my fingers crossed for you guys, keep me posted.

Lizzies Mom

 Reply posted for Lizzies Mom.

Hi, thanks for checking in!  Steph is doing really well BUT she is still on Prednisolone and started the Imuran (50 mg).  She is slowly weaning off the Prednisolone, about 3 more weeks or so, that's when the Imuran should be in full effect.  I am still not at all happy about Imuran, I am so anxious.  We are keeping a food diary.  Steph has noticed in the last 2 weeks certain things are making her feel yucky.  The kicker is, she also has IBS along with IBD so I am feeling really confused.  One day she can eat something and be totally fine, next day she feels cruddy.  We are working on figuring that out before she is off Prednisolone.  We are seeing the nutritionist next week.  Hopefully we can nail down her diet.  How is your daughter doing?

 Reply posted for sraymom.

Hello,

Just thought I would check in.......how are things going?  Hopefully improving.

Lizzies Mom

 Reply posted for Lizzies Mom.

Thanks so much, you have helped me a lot.  I am going to make dietary changes, definitely the ones you suggested.  I feel like I should give the 5-ASA another try and steer clear of ibuprofen and the foods I have been having her eat, which I bet were the wrong ones.  I am meeting with her doctor tomorrow and I'm hoping he will be supportive of my decision to discontinue the Imuran and make the changes/avoid issues I've mentioned.  She has taken the Imuran for 2 weeks only so far.  I just have to try again with the 5-ASA, it seems like throwing in the towel after one flare just doesn't make sense to me.  I pray it works!  Thanks so much for your feedback, it is valuable. 

 Reply posted for sraymom.

I think it may have been the ibuprofen.  I have been told patients with any GI issues should stay clear of that and use Tylenol (acetaminophen).    Supposedly ibruprofen has a tenancy to irritate the GI and can also induce bleeding (??) 

To answer some of your questions, my daughter had been sick as a newborn, but the docs were simply blowing it off.  Her first hospitalization was just after her first birthday. Unfortunately, they didn't diagnose her then either..just pumped her up with fluids iv and sent us home. Then she was hospitalized again and misdiagnosed w/hypoglycemia. It wasn't until she was 4 that she was diagnosed. 

Our doctor educated us about the low fiber/low residue diet and had a nutritionist consult with us too. Some of the dietary changes we had were no raw veggies or salads, limit fruit, switch whole grain bread to white, no crunchy peanut butter, smoothe (I use all natural). For a while I had to peel and cook her apples, peel her grapes, say no to strawberries.   Things have gotten better though.  She can tolerate eating apples (always peeled), and a small salad once in a while. Popcorn was a biggie in our home and I was determined to find an alternative...and I did.   It is called Pirate Booty.  It is crunchy like popcorn, but doesn't have the forbidden residue....and it is in the same aisle in our grocer. 

I am ultra conservative, it is just my nature.  I would probably take the wait and see approach so far as changing to the next class of meds.  If you make diet changes, continue on the 5-ASAand have blood drawn in say 6 weeks.  If the numbers are off and more importantly if your child is showing signs/sympotamic, then it may have to be.   At least you know you tried. 

I hope I have been some help. Best of luck,

Lizzies Mom 

 Reply posted for Lizzies Mom.

Sorry, I see she is 10!  Has your daughter had any flares at all while on 5-ASA?  Mine only had one and her doc wants to change the med classification, I was wondering if I should give 5-ASA another chance...

 Reply posted for Lizzies Mom.

Hi, thanks for the reply!  Can you tell me a good website to find more information on a low fiber low residue diet (where you got your information)?  Also, how long has your daughter had IBD?  Has she ever changed medication?  What is your daughter's age?  I forgot, my daughter was also taking ibuprofen often for headaches and that can trigger flares too.  Thanks!

 Reply posted for sraymom.

I don't think there is any sure way to know definitively that it was not taking the fish oil and probiotics that set her off, but it is a possibility.

My daughter is also on a 5-ASA (Sulfasalazine).   She too takes Omega 3, folic acid, vitamin D3 and calcium supplements, along with the regular multi-vitamin.  Since she was diagnosed, we also follow a low fiber, low residue diet.   Luckily she is a very active 10 year old (knock on wood). 

I hope she feels well again soon.

Lizzies Mom