12/2/14

Fighting with Food, A Battle Against Crohn's

Dreaming of Waves
I have sat down numerous times to write this post and I seem to fall victim to the same cycle every single time. I sit down to write and somehow the thoughts become clustered together in my mind and they never make it to my fingertips. Instead, I sit and stare at the empty white pages of my laptop and the blinking cursor with its slow rhythmic beat.

While I’ve heard of Crohn’s Disease and could probably rattle off a decent definition to a stranger, I never thought this very disease would consume my life. I never thought I would say that I have a child with a chronic illness and I certainly never thought our life could change so drastically in such a small window of time. But the fact is I do have a child with a chronic illness and our life has changed drastically. I would give anything to go back in time but all we can do is go forward. A concept I am still coming to terms with.

A few weeks ago our nine-year-old son was officially diagnosed with Crohn’s Disease. In the beginning the symptoms were minimal and could have easily been blamed on other ailments, but shortly after his diagnosis the symptoms quickly emerged.

Crohn's Disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. Symptoms often include: abdominal pain, diarrhea (which may be bloody if inflammation is severe), fever and weight loss. Other complications may occur outside the gastrointestinal tract and include: anemia, skin rashes, arthritis, inflammation of the eye, and tiredness. Bowel obstruction also commonly occurs and those with the disease are at greater risk of bowel cancer. There are no medications or surgical procedures that can cure Crohn's disease. Treatment options help with symptoms, maintain remission, and prevent relapse.

Out of nowhere these symptoms hit our son and turned our life upside down. I was lost and confused and felt like a spectator in an empty arena while my son suffered daily. I quickly realized this is the battle he would be fighting for the rest of his life.

Every case of Crohn’s is different and for our son stomach pains and cramping are the reoccurring symptom that intrude on his days. Watching your child in such pain is like a dagger through the heart for a mother. When you watch your child writhe around, moan, cry and even scream you fall into a dark space of helplessness. There are no words for when you watch your husband carry your nine-year-old son out of a restaurant because he is in too much pain to walk. I tried spending a week in depression but quickly realized that didn’t get me anywhere. Looking back I can see I was going through the grieving process. I was in denial, I was sad, confused and mad. Really really mad. How could this be happening to us and to my son? My healthy active soccer- playing son?

Well, as you can imagine, the soccer is on hold and after four consecutive weeks of missed school I stopped counting. I focused on whatever I could to take away the stomach cramps and to keep him caught up on his studies.

When your child is sick it’s hard to accept the reality, especially when they are sick with a chronic illness. Our son had several hospital and doctor visits, he’s had minor surgery, he’s spent the night in the ER and he’s had second and third opinions all in a matter of a few weeks. He’s had every test and procedure related to gastroenterology and has been pumped full of codeine, steroids and other meds to get this flare up under control. Codeine for the pain, steroids to bring down the inflammation, Prilosec to counter the side effects of the steroids, antibiotics and a maintenance drug (Pentasa) that we hope and pray will work.

We’ve had two doctors advise us that our next step is an intravenous drug called Remicade. The Remicade infusions would be administered every two weeks in the beginning and then eventually spaced out.

This is the path we were hoping to avoid. It’s not that we don’t believe in modern medicine, because we certainly do, but we will try everything in our power before scheduling infusions. The thought alone is scary and the side effects even scarier. Once you start this treatment most patients don’t stop. It’s advised not to stop because your body can build up antibodies against the drug and in the future it may not work.

This is where we are now, at a standpoint where two roads diverge and we are left with some serious decisions. At this point, we’re fighting with food and taking it one day at a time. From our very first appointment with the GI we were told food has no impact on this disease, but we’ve seen with our very eyes that it does. There may not be much research out there, but there are certainly believers and testimonials that diet can put Crohn’s into remission. Will it work for us? I have no idea. In case it doesn’t we are ready to go on Remicade. We’ve made all the steps and just need to schedule the appointment.

But we aren’t there yet.

Our son started an IBD (irritable bowel disease) diet called Specific Carbohydrate Diet (SCD) on October 29th. That same very night he was admitted to the hospital because his stomach pains were so severe. Over the course of this past month his pains have slowly subsided and last week (November 24th) was his very first week back to school. We’re still on a rocky road and are now battling daily headaches and emotional outbursts that we believe are a side effect of the steroid. Under the doctor’s orders we are weaning off the Prednisone, which will be a true test. In addition to diet we also see an acupuncturist twice a week and feel we are seeing results. Something has made the pain subside but the question is what is that something?

The beginning of December marks the fourth month we have been battling this flare up. We have had many ups and downs and are determined to get our life back on track. We are determined to get back into the routine of school and we’re determined to pick up that soccer jersey and get back into the game. Crohn’s disease may have us down now but it won’t have us down forever. Our son is not alone. There are many children and adults out there fighting the same battle and we will always be by his side. Always.

December 1st -7th happens to be Crohn's and Colitis Awareness week.
Today, I share this post with you to raise awareness for those who suffer from these diseases in hopes that one day there will be a cure.

I wanted to say a huge thank you to all our friends and family for the loving support you have shown over these past few weeks. This journey would be much more difficult without you.

Here are some helpful links for friends and family:

Breaking the Vicious Cycle, the book that the SCD diet is based on
Crohn's and Colitis Foundation of America
While there aren't many studies out there about diet and IBD, this is VERY interesting
A positive,heartfelt story because we all need some optimism :)

And a few blogs that I find inspiring:
Pecan Bread
No More Crohn's For Me
Comfy Belly
Fighting Flare

15 comments:

  1. So glad you are sharing, Elizabeth, and you are giving me courage to share because I know how it feels to find out I'm not alone. THANK YOU.

    Steph

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    1. You are not alone!! And you know I am here for you any time. We're in this together. xoxo

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  2. Oh my gosh, I am so sorry. It sounds like you are looking outside of the box and I will stay hopeful for you to find the right diet and medicine (or not) for him. That pain you are dealing with is hard. One of my doctors has Crohns and he is doing better than ever on a Paleo diet. I hope things get easier for you and your family.

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    1. Thanks Carlin! I hope we can find the right balance too. I have heard of several cases that start out on the strict SCD diet but can eventually maintain remission with the Paleo diet. Hopefully that will be our case. Thanks for reaching out. xo

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  3. My name is Tara and I'm a friend of Jordann's. I battle this very same awful disease. I was diagnosed in February of 2013. Prior to my diagnosis I had my appendix removed due to what I now know was a flare up bowel obstruction (with a side of appendicitis). 1 1/2 months after that a 3 day hospital stay due to bowel obstruction thought to be complications post appendix removal. 1 month later 4 day hospital stay with a lovely NG tube to clear this bowel obstruction. 2 months later back in the hospital with another bowel obstruction to which I was finally diagnosed with Crohn's Disease after a colonoscopy and 4 day stay. I have been on and off Prednisone most recently from January to May of this year. I was also on Lialda for a year and half taking 2 large pills a day. Since May I have completely cut off all medicine and been controlling symptoms with my diet. I just know when my stomach doesn't feel right I have to switch to a liquid only diet or simply go without eating (this is the worst!). I also know what I can't eat because it wrecks my stomach (seeds for example. No berries, sunflower, pumpkin, or sesame). I'm also super careful to watch my fiber intake and try to keep that very low. It's very difficult to get your employer to grasp the idea you need another day off when you look and sound find. I pray your son learns to manage his symptoms and your family can find peace and normalcy again.

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    1. Hi Tara! Thanks for reaching out, Jordann mentioned you may :) I'm so sorry to hear about the Crohn's. Jonas is currently on Prednisone and we are weaning off now, thank goodness. That's some nasty stuff. Because we're weaning off he has headaches and CRAZY mood swings. I haven't heard of Lialda. He takes Pentasa, which is basically a maintenance drug. It won't put him into remission. When he was in the hospital and on liquid diet he had no pain at all! We stay away from seeds too and right now are really watching the fiber. I can't imagine the work environment with this disease. It's such a day-to-day case. I hope yours stays at a point where you can control it! Thinking about you and so glad you reached out. Tell Jordann we said hi :) xoxo

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  4. I am so sorry to hear this. My youngest son suffers from similar symptoms, and Crohn's has crossed my mind. But all the research I've done said it usually occurs at an older age....my son is 6. Thank you for sharing your young son's story. I'm going to make a phone call to my son's pediatrician. (:

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    1. I'm sorry to hear about your son. I never ever imagined it would be Crohns! I never even thought kids this young could get Crohns, but after being diagnosed and reaching out to some support groups online there are A LOT of children fighting Crohn's. Please keep me posted. I hope you find some answers.

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  5. Oh gosh, I'm so sorry to hear about this but so happy that you guys finally have answers, at least. The worst is not knowing and constant tests that just create more not-knowing. I hope you guys figure out a balance that works for him soon. Lots of love from someone else with a chronic disease. <3

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    1. The worst is definitely not knowing, although not the answer I was hoping for :( I have a whole new appreciation for those who suffer from chronic diseases and autoimmune diseases. Thanks for reaching out Caitlin. Hope all is well with you and the family! xoxo

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  6. I have lived with a Crohn's diagnosis for coming up to twenty years. I was diagnosed in my early twenties. I have had no flares up for the last ten years, the last major one was just after my eldest child was born. I have not taken any medication at all since that last flare up and I only took that reluctantly as I had been off the medication for the previous six. I was also told that Crohn's was nothing to do with what you eat but I just couldn't believe that. I manage my Crohn's almost entirely through my diet, I had a food intolerence test fifteen years ago and it was a major tuning point for me. Within a week of excluding the foods that I had on my list I felt so much better and stronger. It has been really hard, a still see a consultant every year to check that I am ok, he has stopped now but for many years he tried to get me to take maintenance doses of medication but I refused. Now that I have been flare up free for so long he has stopped trying to get me to take anything. I am the healthiest person in his waiting room!

    I wish you well with your son. I am sure it will be harder with a child to justify to the medical profession that you don't want meds. I hope that you feel able to stand your ground and do whatever you feel is right for him.

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    1. Thank you for this comment! It's so nice to hear the "success" stories that food can help heal Crohn's and keep it in remission. I am determined to make it work, but sometimes I feel that everyone thinks we are crazy. The doctors still push for the heavy medicines but we are seeing improvement with food!! He has been, for the most part, pain free since Thanksgiving, is back to school and back to soccer. A HUGE improvement. We have even taken it a stop further and are working with the Cleveland Clinic's Institute of Functional Medicine. They believe food can heal his "leaky gut" and we start a new diet the first of January, an elimination diet. They also did a round of tests for food intolerance's and allergies and I'm anxious to see those results. I do believe we are on the right path. It's certainly not easy with a child and there is a lot of work involved, but my goal is to set him up for a lifetime of healthy and control over this disease.

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  7. I am to read of this, really I am. I haven't checked in on you for a while, so this was a shock. I believe how real this is as I have a friend, an adult, who has the disease. I will ask her if there is anything she's read, any reference or anything that may be of help, that I can share with you. x

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    1. Hi Victoria, Thank you for reaching out with your kind words. It truly means a lot to me. It came as a huge shock to us as well and completely came out of no where. I would love to hear what your friend has to say or if she has any reading suggestions. Thank you again for reaching out. xoxo

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  8. Hey there!I've been reading your blog for a long time now and finally got the
    bravery to go ahead and give you a shout out from Huffman Tx!Just wanted to tell you keep
    up the excellent job!

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