New Mom – Suzanne – WELCOME!!!

I love to hear from new moms! I welcome any new or current moms on the blog to share their stories with us and ANYTHING they would like to share here on the blog. And ask ANY questions you might have!

I had the opportunity to meet Suzanne on the phone today. She shares her daughter’s story with us below. Please comment with your advice to Suzanne! We wish you luck on your new SCD adventure!!! We are here for you!

Mom Suzanne wrote:

Hello,

My eight-year-old daughter was diagnosed with Crohn’s one week ago following an endoscopy and colonoscopy. We were expecting the diagnosis, as she had anal ulcers in addition to chronic diarrhea and weight loss, and the GI doctor told us that was a typical Crohn’s presentation. Of course we are devastated, and our daughter’s emotional health seems so fragile right now as well as her physical health.

Before the colonoscopy, I had read about the SCD diet through various websites as well as BTVC. My husband and I see the diet as a viable option for at least living with fewer drugs, though of course drug-free would be best. We started her on the diet immediately after getting the diagnosis, and today is day 7. She has already regained the weight she lost from the fast required by the colonoscopy, and from the diarrhea that followed the next day. I see this as a very good sign. Her bowel movements are still very loose but look better in color–not at all watery–and they are holding even at 2-3 a day. She has more energy and her color looks better, but she still has those anemic dark circles under the eyes. She has been taking Flagyl since the colonoscopy. My daughter has also been on Anucort-HC suppositories since the colonoscopy/endoscopy. Those, combined with Manuka Wound Honey, practically healed the anal fissures/ulcers in less than a week, though we are still using them because it is so much easier to have BMs without all that pain–and we are afraid of them coming back! Second, her hemoglobin is 10.2 and her vitamin D is 16, in case anyone has thoughts about supplements.

We met with the GI doc on Tuesday, and she recommends putting our daughter on either Pentassa or 6MP; she actually thinks 6MP is the best choice but is “willing” to start with Pentassa. The disease looks early stage and is limited to the anus/rectum and the terminal ileum. However, the biopsy results showed some granulation which the doc says means the disease is likely working at a deeper level than just the mucosal lining. She was pretty dismissive about both side effects and had never heard of the SCD diet, nor did she think diet could possibly help with the disease process. We are supposed to go back in one week and tell her which medication we want to go with. She says her plan would be to put our daughter on meds through college age, without any attempts to taper or go off them because that would invite the disease back.

We read about the Woodward family’s success with Dr. Benjamin Gold at GI Care for Kids in Atlanta, and are thrilled to find a specialist willing to use the SCD approach alone or in conjunction with drug therapies. Dr. Gold’s office has been closed yesterday and today due to the bad weather, but I will try first thing tomorrow. We are hoping to see him for a second opinion, and hope it doesn’t take two months to get an appointment.

The GI we have seen also wants us to be giving our daughter an iron supplement and all kinds of other supplements, and she was completely irritated at my concerns about the iron, which seems to go against the SCD advice. When I told her I would rather do the homemade yogurt than the probiotics with grain ingredients, she looked at me like I was crazy.

Your blog has been so encouraging! I also would be grateful for any suggestions or thoughts you could offer me while we wait for an appointment with Dr. Gold. We have two other children, close in age, and this has been the hardest thing our family has ever gone through. I know other families experiencing IBD in their kids understand!

With thanks and gratitude,

Suzanne

My thoughts:
Mom Suzanne explained to me today that it was explained to her by the doctor that her daughter was in early stages and does not have a severe case of Crohn’s. Her daughter’s doctor is recommending medication. When we were talking today I told her I strongly recommend from my experience and from learning from other moms here on the blog to try the diet first before turning to medications. I told her to be expecting and looking for her daughter to start feeling sluggish at the 2 week mark of starting the diet and for the “dying off” stage. I encouraged her to try to stick to the diet strictly at least 3 months and that it WILL get easier!!!
Suzanne is looking forward to hearing from you moms. What is your advice and experience?

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6 thoughts on “New Mom – Suzanne – WELCOME!!!

  1. Hi Suzanne and welcome!
    My eyes fill with emotion thinking that you can learn from our journey! We are actually seeing Dr Gold Wed so I be sure to tell him. As you read from our story, I have my son in Pentasa and SCD to maintain remission. We try taking him off Pentasa after a year with no luck but under the circumstance I will take that over any other med as Pentasa is one of the mildest. Our daughter is medication free and in remission so I truly know it works. As Paige mentioned 3 months goal to make a lifestyle change its necessary! Prior to SCD my son was in Pentasa but still loosing weight after a year. It was the combination with the diet that made the difference.
    In regards to supplements, we do home yogurt as well as HcL intensive probiotics without FOS. My son was extremely gassy and cramps with probiotics that had FOS (prebiotics). We get them from rockwellnutrition.com. In regards to vitamins D, we use Artic Nordic (I think- don’t have it in front of me). My son’s level was also at 16 when he was diagnosed. It took about a year to get his levels up. However that was the year prior to SCD.
    My last advised is that don’t be discourage in the next week if you see some set backs. As Paige indicated, the “dying off” stage can be hard for some. Also my husband has had Crohns for 24 yrs, you have no idea how many doctors have told me diet won’t do anything. I now know I’m still in PJs… :)that is incorrect. 🙂 Please feel free to ask Paige for my contact info if you have any questions. Hang in there, it WILL get easier!

  2. Hi Suzanne,

    My son’s Crohns presented the same as your daughter’s: weight loss, anemia, and anal ulcers. He was started on flagyl also, but 10 days in, he started acting funny and doctor stopped it. He also did 3 months of oral Budesonide. Once we started the SCD diet, the ulcers healed and he started growing both in weight and height. Once the 3 months of budesonide were over, he never had to start any other medications. I did give him iron before I learned of the SCD diet. I stopped that too. He’s been on the diet now for 2 years medication free. Crohns is no longer a big issue; he gets tummy aches or funny poops as often as any other child, really. My affirmation is that Crohn’s will not define who he is and what he can do. The diet is still a pain at times but it took a minimum of 3 months of tears and sweat initially, 6 months of running all over town for different products in different stores. Now, I have most staples to bake anything anytime and it’s pretty much a routine. We/he understands the setbacks cheating will cause. He’s now 14 years old. I do also use supplements: SCD multivitamins/B complex, omega 3’s, turmeric, oregano oil, Calcium with D and VSL#3 (which is technically illegal but works for my son). I do make yogurt for my whole family (I have 4 kids total), but, of course, my Crohn’s son dislikes yogurt (it’s a texture thing). I do make him eat it occasionally with Digestive Wellness’ granola which he loves. Initially, the diagnosis was a horrible shock; I think I woke crying every night for that first 3 months. Now, it’s part of life….the diet, NOT the Crohn’s. Good luck.

  3. Thanks to each of you–Paige, Gisele, and Margaret–for your suggestions and encouraging words! Gisele, you can tell Dr. Gold we are coming all the way from Kentucky to see him!

  4. Hello ladies, it’s been a while since I posted. My name is Suzie B. and my daughter Rose is ten and struggling with healing. She is on 1500mg of Sulfasalazine. Her stool is well formed, but still (especially in the first morning poop) has blood lightly coating. We had her on balsalazide but that really messed her up. Now her esophagus is sensitive when she swallows (the past two mornings it has caused sympathetic pain between her shoulderblades). Can you ladies please recommend healing foods that are less likely to cause acidity. Or foods more gentle for her system she is still having a difficult time with fiber. Her doctor wants to us omerprazole (a PPI) to heal ulceration as well as having her swallow Mylanta or other antacids. Please give me your thoughts ladies. You women are amazing!!

    • Hello, Suzie! Good to hear from you again. Wish it was on better terms. I am going to post your question because I do not believe everyone sees the comments made. I’m sorry to say that I have not had to worry about seeking out very sensitive foods, so I don’t have any thoughts on this one. I hope you get some good advice. If no one comments I will seek out advice somewhere else to try to help you. Talk to you soon!

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