Searching for answers

Hi, My name is Denise. My daughter Jessica was diagnosed with Crohn's disease when she was 8. She is now 14. She has been hospitalized twice and had surgery once on her ilieum March, 2011. Her GI started her on Remicade after her surgery. Somehow in my gut I feel there is a better way than these meds. I am reading up as much as I can on diet and probiotics. In the meantime I am learning to except what is going on, but I will not stop searching.

My daughters outlook on this is that Crohn's has made her who she is. Because of her experience with this disease she feels that she would like to someday be in the medical field helping other children with this disease.

Welcome to the forum Denise.

It is great that you are looking for ways to help your daughter deal with her Crohn's Disease. It sounds like she deals with her diagnosis in a very mature way.

We have a Diet, Fitness, and Supplements forum which is likely the best place to start reading more about diet and probiotics.

I hope you and your daughter are able to benefit from the forum and I look forward to seeing you become a member of our community!

Hi Denise and welcome!

I'm sorry to hear about your daughter's tribulations but that's wonderful that she's looking at some of the potential silver lining. Good for her

You mentioned she had surgery on her ileum. Did she have a portion of her terminal ileum resected? And if so, are they watching various vitamin levels as they're absorbed there?

If you haven't found it yet, you may want to check out our Parents of Kids with IBD forum. Lot's of parents in like situations there for you to talk with.

Again, welcome to the community

Hello Denise and welcome :bigwave: The best forums for you to look at have already been mentioned and its really good that you want to look into other options for Jessica. I think her attitude is wonderful and I really hope that she takes it foward with her.

Xx

Hi Denise and welcome ! :rosette1:

You're daughter seems to have a wonderful, and positive out look on her life. These children never cease to amaze me ~ In so many ways I think they are so much better equipped than we are

My daughter also had surgery last March, and again this past December. She was started on Cimzia after her initial surgery. I agree with your gut feeling, there has to be a better way, right! But, until then, I guess we do what we have to do to protect them in the meantime and continue educating ourselves, and trying to help others as well.

Hope to see you around, and please come and join us in the parents section !

Thank you!!

Thank you for your supportive comments. I have only recently decided to join a forum because I was afraid of reading negative comments. I am happy that I found this forum because I see how informative and helpful it can be. The members seem very sincere and positive. I hope that someday I can share some helpful information.

Crohn's Mom, I'm so sorry to hear about your daughter. I hope she is doing well. I know it takes time to recoup after surgery. Physically and mentally.

David, My daughter had a resection on her ileum. She also had a absess. Was put on TPN for 3 weeks which put her in remission,

Again. Thank you.

Hi Denise and :welcome:

I'm so sorry to hear about your daughter but what an amazing young lady she is!

My daughter was diagnosed at 14 and also had surgery at that time. My son had surgery last April, he also had an ileal resection and abscess. They are both in remission. I understand what you are saying the meds, we do what we must but we search endlessly for better treatments, better ways and better answers and always will.
Mike has pointed you in the right direction to the diet forum. There's loads of info, support and good ideas there. My own daughter, very soon to be 20, has over time moved to a vegan diet and her latest addition is removing almost all sugar from her diet. In her case she says it makes her "feel better" and more energised.

I hope your daughter continues to do wonderfully well and I have no doubt that she will indeed achieve her dreams. :hug:

Dusty. xxx

Hi Denise,

If TPN put her in remission at one point then I suggest you take a hard look at our enteral / elemental nutrition forum and this thread. They might be what you're looking for

Thanks

David,

Thanks, I'll check it out.

Dusty,

I too am sorry to hear about your daughter and your son. You mentioned that your daughter is cutting out sugar. Have you read the book Reaching for Answers to Crohn's Disease by Martha Kalichman, R.N. Martha's daughter Sarah has CD. By reducing her sucrose intake and taking probiotics (culturelle) 2 times a day she has remained in remission for 8 years to date, with no meds. Hope your son and daughter continue to be in remission.

Thanks,
xxx

Hey Denise,

Thank you so much for the book recommendation. I haven't read it so am scooting over to Amazon now.

Sarah decided to go sugar free, well close to it, after hearing an interview with the author of Sweet Poison and then reading book. I haven't read it myself but I don't think it touches on IBD so I look forward to reading your recommendation and passing it on to Sarah.

Dusty. xxx