1/12/16

A Crohn's Disease Update

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I've been thinking about this post for awhile. I originally intended on writing it when we hit our one year mark of our son's Crohn's Disease diagnosis, and we are now slightly over a year. With Crohn's and Colitis Awareness week hitting last month and our follow-up with the GI back in December, I felt it was a good time for a long overdue update.

Since my original post about a year ago on our son's diagnosis I have been a bit vague about his journey. When it comes down to it, it's not really my story to share, it's his. And honestly, I don't know that he wants his personal story plastered all over the internet. But if I didn't open up about his journey then I wouldn't have met the amazing families that I have connected with who are going through similar situations. We are blessed to have friends and family who support us but no one truly understands what you are going through unless they are going through it themselves.

This past year has been a journey, filled with difficult times and times of smooth sailing. I can't even begin to tell you the emotional roller coaster that we have been thrown on- and, I'll be truthful, I don't like roller coasters, especially emotional ones. But here we are, a year later, on a different path than planned but certainly in a better position, at least that's what I think.

Where to begin…

Last March we met with a different doctor at the Cleveland Clinic, per our request, because our original doctor was, well, let's just say not a good fit for us. Don't ever forget you are your child's advocate and as a patient it's your right to find the best doctor fit for your needs! Even if it means going through four doctors. We immediately hit it off with our new Pediatric GI; he was willing to listen to our story and requests, he supported our belief in the SCD diet (to a degree) and encouraged our visits to the Functional Medicine Department. Unlike the other doctors, who read our son's chart and wrote a script for meds, he wanted to investigate. He agreed with us that he was not like most Crohn's patients and that it was time to investigate with further testing. Testing he wanted to do himself, not another doctor. Just by this move he won our respect.

His MRI and scopes he had done in March all came back normal. A bit of a mystery since he still experienced the occasional stomach ache, but certainly good news. Our GI even started to consider recanting the Crohn's Disease diagnosis. We decided to follow-up every three months with blood work and tests and go from there.

Summer was awesome. He finished soccer season strong, in fact, some of his best playing time yet! Even though he loathed it, he made it through a season of swim team and even walked away with several 1st and 2nd place ribbons. Seeing our son relaxed, happy and healthy felt a like a huge weight had been lifted off our shoulders. We started to ease up ourselves. We experimented with foods and added in several illegal SCD and paleo foods; with no reactions. On special occasions we even let him have treats, again with no visual reaction. It was like any ordinary summer; carefree and delightful.

And then school started.

The very first week of school we submitted blood work and other labs, both consistent in showing inflammation in the gut. Then the occasional stomach ache returned and just like that, life became a bit stressful. His MRI in September confirmed inflammation in the small intestines. Results that hit me so hard I honestly think I was left in shock. How could this be happening? He had so many MRI's in the past and not one ever showed abnormalities. He was scheduled for scopes less than two months from his MRI and I immediately took him back to an SCD and anti-inflammatory diet in hopes of bringing any inflammation down in the body. Unfortunately, those scopes only confirmed the inflammation and the diagnosis. The biopsies came back a week later showing granuloma formations, indicative of Crohn's Disease.

So here we were, a year later and finally receiving the official news that we feared; our son, without a doubt, has Crohn's Disease.

Our GI does admit that he is a bit surprised he doesn't exhibit more symptoms, but he also believes food may play a role in keeping those symptoms at bay. He also strongly felt it was time to pursue medicine, something we tried everything in our power to avoid. We're certainly not against modern medicine, but unfortunately the meds used to treat Crohn's and Colitis symptoms are pretty heavy duty. Six weeks ago Jonas started Azathioprine (Imuran), an immunosuppressant used to keep the disease in remission. At this point, our doctor feels that combining Imuran with the SCD diet is the best way to treat the symptoms, get him into remission and start to gain weight.

I'll be honest, I didn't want to start him on it. I did the worst thing possible and read the side effects, both long term and short. But I also know that doing nothing and allowing that inflammation to take over his gut would eventually lead to something far worse.

I still believe in diet, I KNOW that the SCD diet has helped keep his symptoms manageable. For a boy with active inflammation I am amazed to see him hit the soccer fields every week and weekend and play his heart out. Yet, I can't paint the perfect picture. There are times when he misses practice and there are times when he missed opportunities to play up in a higher division. Having to turn down opportunities because of this awful disease breaks my heart. It breaks my heart that he has to work harder, train harder, think harder just to prove himself. It breaks my heart that he is at a disadvantage and even though he is only ten, he knows it.

I like to think these struggles and battles are preparing him for what's ahead in life. I know that his life won't always be smooth sailing and I won't always be there by his side telling his what to eat and what not to eat. I only hope that my hardwork and dedication now will pay off in the long run.

I wish that we had control over this disease, but we are powerless. We are victims. But just because we are powerless and victims certainly doesn't give us the right to act like that. Every day I tell my son that God made him unique and that He has a plan. He would never give Jonas this disease if He knew he couldn't handle it. Every day I remind my son that God must think he is very strong. I know that he is filled with strength.

So, this is where we are.

We made it through the holidays with no flare-ups or issues. Last year certainly had its challenges. At the time, Jonas was on such a strong dose of Prednisone that he wasn't himself; both physically and mentally. I wouldn't say we were 100% in the clear this Christmas, but pretty darn close.

At this point we monitor blood work every two weeks until March. I'll be honest, I hate that my son has to get blood work drawn so often, but we want to play it safe with the medicine and make sure his liver is handling it. I hate that I even have to type this or think about this, but it's our reality. But, on a positive note, the last time he had his blood drawn, which was two weeks ago, the labs were good and within normal range. To our understanding, the medicine doesn't start working until around 6-8 weeks, so I like to think the good labs are a result of the clean eating and the SCD diet. The doctor agreed partially, but I'm sold.

"The doctor of the future will give no medicine, but will instruct his patient in the care of the human frame, in diet and in the cause and prevention of disease."
Thomas Edison


I hope and pray that our son's future doesn't involve medicine, but the harsh reality is that he may be on medicine for the rest of his life. We're taking it a day at a time, a meal at a time. And for now, diet continues to play a huge role in our life.

8 comments:

  1. You're doing wonderfully. I think of you often. What a series of trials you and your sweet family have been through. Jonas is lucky to have you as his mama. xx

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    1. Thanks Kacie! I think of you too ;) We need to have one of our phone dates over coffee or a glass of vino. One of these days! xoxo

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  2. I've had severe Crohn's off and on for 10 years. Currently recovering from one of the worst flares I've had, but I'm controlling it entirely through diet. I am med free! It is possible! Keep fighting :) you are doing the best you know!

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    1. Wow, amazing to hear you are med free! That is fantastic. I hope and pray for my son to be med free one day. For now, since he is doing so well and he just started, we'll keep him on medicine. At least to get some growth on him and make sure puberty hits at the right time. Once that passes I hope to take him off and control through diet along. Thanks for reaching out! Always nice connecting with others who are in the same boat. Do you follow SCD? Or something similar? I'm always curious about success stories. Happy healing to you.

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  3. Thank you so much for sharing your son's story. Our daughter was diagnosed with IBD at age 4, but had been coasting by just fine with Pentasa and SCD until this summer when she had a major flare, and she was officially diagnosed with Crohn's. It is such a terrible disease, but so good to hear about other children who are living their lives in the most normal way possible for them. Again, thank you for sharing!

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    1. I'm so sorry to hear about the official diagnosis ;( it's always a hard one to digest. Are you still doing SCD? How is your daughter doing? I'm on a great Facebook group for families who are doing SCD and it has seriously been a lifesaver! The group is amazing, positive and so supportive.

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  4. While they might not be the answers you want, it's always a relief to have an answer, period. Noah's epilepsy was completely treated by diet alone and we were quite vocal/proud of that at the time so when he was diagnosed with Crohn's and we went the med/infusion route, I felt like a fraud at first. But then I woke up and saw so clearly that we were doing the best we could with what we have... it's definitely quite a journey! Thankfully Noah is growing and in no pain, no inflammation, so that makes it easier for now! Thinking of you!

    Steph

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  5. Thank you for sharing this, it helps many parents, this is such a frustrating disease bc there is no "magic bullet" medicine. Mercaptopurine is the next step for my 15 year old after trying so many other drugs. We are trying Low Dose Naltrexone as a next step, and that has helped incredibly with the urgency issue. Food has helped with stomach pain: cooked chicken and carrots with avocado in the morning is a guaranteed "no stomach pain" start to the school day. Thanks so much for your blog, and great Instagram!

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