Crohn’s Disease ~ The Journey of Faith

The Journey of Faith ~ My Daughter’s Journey with Crohn’s Disease

Crohn's Disease

“…they diagnosed her with Crohn’s Disease.”

Your heart breaks when your child is sick. Even when they just have a runny nose. But when it’s something worse and you don’t know if they’ll get better, how do you cope? How do you help them cope?

When your local doctor sends you to the Children’s Hospital, you fear the worst. Now it’s not just a runny nose, a virus or something that an antibiotic can make better. We’re facing the unknown. What will they find…cancer? Will she be OK? Of course all of these questions went through our head. She’s our baby.

My daughter’s journey started 4 years ago right around her 3rd birthday. She had been running high fevers and high white blood count. But the local doctor couldn’t find anything to explain it. So we were sent to the Children’s Hospital an hour and a half away. We saw every specialist in the hospital and they did every test under the sun, poking and prodding but came up empty handed. No cancer diagnosis so we thanked God for that!

The last doctor came in and said that in these cases when they don’t have a diagnosis, it could be Systemic Onset Juvenile Idiopathic Arthritis. However, he couldn’t be sure. After being in the hospital for over a week and a half without a diagnosis, we finally said enough and took her home. We did a lot of praying with family and friends. The fevers broke and the symptoms went away. Still we had no diagnosis.

She was fine for a full year until right after she turned 4.  She started having diarrhea several times a day and then blood in her stool. We were again sent to the Children’s Hospital. They did an endoscope and right away they diagnosed her with Crohn’s disease. We were a bit relieved because, again, it wasn’t cancer.

Little did we know the journey she’d have ahead of her.

Crohn’s disease is a lifelong inflammatory bowel disease (IBD). Parts of the digestive system get swollen and have deep sores called ulcers. Treating the disease can be difficult because the body doesn’t always react to the medicine or it will work for awhile and then stop working. They will use anti-inflammatory meds and meds that lower your immune system. Crohn’s disease also makes it hard for the body to absorb nutrients.

Faith has had a long, hard road since her diagnosis. She has so far been hospitalized 5 times (as you can see by the picture, once even over New Years.) Most of the stays are on average 10 days or longer.

Because her medicines lower her immune system, we have to be very careful around any germs, viruses, etc. A normal cold or stomach bug could land her in the hospital. Two years ago she caught CMV and was in the hospital for 2 weeks. Almost had to be in the PICU. To normal healthy people, CMV isn’t a problem but to Faith, it attacked her lungs and gave her pneumonia, skin with a pox type rash, she was running high fevers, etc. It was really serious. The only medicine to make her better was an antibiotic that had to be administered by nurses wearing protective gowns. Like hazmat suits. I still shudder thinking about it.

Faith has been on prednisone on and off for the last 3 years. If you’ve ever had to experience prednisone, you know that it’s a miracle drug with terrible side effects. She gains weight on it, has mood swings, anger issues, doesn’t grow (she’s 7 but looks more like 4 or 5), can have bone issues, etc. etc. etc. The doctors are now worried about the long term side effects and are rushing to try to get her off. But any time we try to get her off, she has a flair-up again.

When she’s having a flair-up, her body doesn’t absorb nutrients and she is usually low on iron. Her appetite is usually poor too so it’s hard to get her to eat well. She’s had to have several blood transfusions as well as iron, lipids and one albumin which is protein. All of which have to be done in the Hospital or clinic that is an hour and a half away from our house. It’s tough on the whole family.  Her brothers and sister are affected by her disease too.

Her pediatric specialist has had a hard time finding a medicine to work for her. She’s been on 4 so far. We just saw a pediatric specialist at the Mayo Clinic for a second opinion. Right now she’s taking 2 different meds that have to be given by shot. Once a week that we do at home. Plus on top of that she also has to get a lab draw once a week so she gets 3 pokes a week. Through all of this she remains strong. I don’t know how she does it at 7 years old.

The picture of her with the necklaces are her bravery beads. It’s a great program that the Child Life does for the Oncology and GI patients. She gets a bravery bead for every procedure, office visit, poke, etc. that she has. She has way more than that now. We’re almost on our 4th necklace.

Every once and awhile when she’s feeling really yucky during a flair-up, she does get down…she’ll say to me, “Why do I have to have Crohn’s disease.” I don’t know what I should say to her but I say, “Because God made you special.” What else can I say? She accepts that and knows that she is special. No one should have to go through this disease.

I’m writing The Journey of Faith and about my daughter’s journey with Crohn’s Disease because I’d like to create awareness. The Senate just passed the first Crohn’s and Colitis Awareness Week,Dec. 1-7, (2011) to help raise awareness about Crohn’s disease (CD) and ulcerative colitis (UC). Many people are being misdiagnosed or are going undiagnosed. In fact, a part I left out at the beginning, when Faith first started having GI issues, I took her into the Urgent Care clinic over the weekend. The doctor there said she had hemorrhoids and sent us home with suppositories. It wasn’t until I took her in the following Monday to her regular doctor that she sent us to the Children’s Hospital.

This disease is robbing my daughter of her childhood. She is a fighter and she will make it through it but she’ll have to deal with this disease for the rest of her life. I pray that they will find a cure for this disease. I’m sure that any parent taking care of a child with an illness can relate.

 

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Comments

  1. Greg Smith says:

    You have a strong and brave little girl Dawn and my prayers are with her.

  2. Nikki Elkins says:

    wow you guys have been through so much. I am praying for your family

  3. Alan says:

    We went through similar challenges when our 10 year old daughter was diagnosed with crohns. But we were not willing to accept the poor results and big side effects that come from standard strategies. Now at 18 she is doing well – not cured – but she has a pretty normal teenage life. There is a way for your daughter to get her life back as well. There are safe and effective strategies that for some reason have simply been ignored.

    Please take a look at the research and let me know if you have any questions.

    Alan
    http://crohnsdad.wordpress.com

  4. Oh sweetie … {hugs}

    We’ve been through the wringer with our guys, not with Crohns (though it runs in the family) but with another rare disorder that has resulted in my husband and all three boys dealing with way too many diagnoses, way too much medication, and way too much growing up in their short lives (not my hubby’s … though he’s young and has major health issues).

    I, too, feel a need to help others understand what their many diagnoses mean, and the effect each diagnosis has not only on the child, but on the whole family. Our journey is different than your own, but our paths seem to run through the same valleys of fear, of gratitude, of hope, and more. I know that your honesty, and even bravery, in sharing these emotional times with your readers will result in others finding a bit of hope.

    {hugs} again. Your little girl is a brave and amazing little girl, not just because of what she has gone through, but of what she’s given the world by doing so … her bravery and hope, and confusion and fear … all of it together show the world how a real hero faces adversity.

    • Dawn says:

      Thank you so much for your post, Katrina!! It is much appreciated! I hope, whatever is going on with your family, that they are doing ok! <3

  5. It is an awful disease. My daughter was diagnosed with Crohn’s when she was 8. I was diagnosed with UC last year. Terrible diseases both.

    • Dawn says:

      They are terrible and you don’t hear about them until someone you know gets diagnosed. I hope you both are doing well!!

  6. Wendy says:

    Aww, I so feel Faith’s pain!! I’ve had Crohn’s since childhood although it was never diagnosed properly – probably because I am now in my 40′s and they just didn’t do things like that then. I remember being on pills for my bad “tummy pain” and complaining a lot to my parents. As an adult, my mother informed me that my “pills” were nothing but sugar pills given my the doctor who didn’t believe I had any medical problems and it was all in my head. Last year I was also diagnosed with Pernicious Anemia after a long battle with doctors. The Anemia is caused by the body’s inability to absorb B-12 most likely caused by Crohn’s. Since this disease is mostly a disease of the elderly, it was a last-ditch test that my now-previous doctor did and found it. But by that time I had developed serious neuropathy from the lack of oxygen in my blood. I’m SO glad for your Faith that you found out the problem now so that she may not suffer more diseases and complications that could be prevented in the future! Hugs!!!

    • Dawn says:

      Oh my goodness, Wendy, that is terrible! Suffering with this and having the drs not believe you?! ugh. :( There’s just so many complications that can arise when not treated. Thank you so much for your comments and support! Please stay in touch!

  7. It is such a hard thing to watch your child suffer! I’m sorry that you have had to go through that. My son has severe food allergies to milk, eggs, peanuts and tree nuts. So, finding food to eat can be a challenge. I think we can relate there. If you want you can come by my blog allergieseveryday.blogspot.com

  8. I am so sorry to hear about all that you have been through. I think it is only fitting that your daughter’s name is faith. Always remember to have faith and things will go the way they are meant to go. You all are very brave, especially your sweet little one.

  9. Sarah Lewis says:

    My brother-in-laws’ Mom and Sister both have this horrible disease. I had never even heard of it until several years ago when they were both diagnosed within just a few years ago. People accused her of being crazy and making her symptoms up. It was awful and I know they have both been through a lot. Will keep your sweet little girl in our prayers!

    • Dawn says:

      Thank you so much, Sarah! I’m sorry to hear that you have family with it too. There are so many people affected by it. :(

  10. Rana Wooley says:

    As I was reading your daughter’s story, I was thinking of the pain and bleeding I have had for several years. I have researched and thought that I may have gluten intolerance or allergy. I did not think it was true, because I never had problems when I was younger. It said that it can develop over time, so I decided to cut gluten (wheat products) out of my diet and within a couple of days I felt so much better. It took a long time before the bleeding stopped and I have to watch because gluten is in so many foods we don’t even realize and if I eat it by mistake the pain and bleeding will start again. I am not saying that this has anything to do with Crohn’s, but I did notice in Alan’s link that it did mention celiac disease. I just thought it might be worth a try to remove gluten from her diet just to see if it helps her pain at all. I am so sorry she has to go through so much.

    • Dawn says:

      Thank you for your thoughts! She has been tested for both gluten intolerance and celiac but she has neither. Gluten does cause so many issues though!

  11. Sally says:

    Thank you for sharing your story. My 12yo was diagnosed Jan. 23rd and we were in the hospital 10 days and then 3 days later we went back for 6 days. It was good to hear we’re not alone.

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