4.23.2014

living with crohn's disease - 1 year later.

It's hard to believe that it has already been a year since I found out I have Crohn’s (a chronic inflammatory condition of the gastrointestinal tract. I was diagnosed with moderate to severe Crohn's in my small and large intestines and stomach). The past 12 months have been an interesting experience and I thought I would finally update you on my health.
I feel 110% better than I did last January when I had to go to the Emergency Room for dehydration. I am so grateful that I am able to manage my condition and I know that is because I finally went to a GI doctor (after years of stomach issues), did the necessary testing, and started taking medication.

I have been taking Humera for almost a year now – h gives me a shot in the stomach every other week and it has dramatically reduced the number of flare-ups or stomach “issues” I have. During the first few months of treatment I kept a food journal to monitor what foods upset my stomach. The results were anything overly greasy, deep-fried, fatty meat like sausage, anything super spicy, milk, and lettuce (weird I know). I try very hard to cut those items out of my diet and I try to avoid overeating in general. I learned the hard way (in Santorini of all places) that I cannot eat large amount of fried feta or have cheese at every meal (bummer). So, I am adjusting. I also rarely drink – I have the occasional glass of wine or prosecco but I don’t overdo it because it freaks my stomach out and it’s just not worth it. I have to also be really careful not to overeat at holidays –which are often full of tasty (and heavy) dishes. 

Last year I went through a lot of physical changes – I lost a lot of weight when I was sick. When the medicine started working and I wasn't losing everything I ate, I gained some weight because it was still constantly snacking on “safe” food like dry cereal, even when I wasn't hungry. I had to learn to listen to my body and only eat when I was hungry instead of snacking out of fear that I was going to get sick (severe diarrhea and cramping) and lose more weight.

I eventually figured out what the "right" amount of food was for me and I have a steady diet of small meals throughout the day– breakfast (usually oatmeal), a banana before lunch, a sandwich, yogurt, more fruit in the afternoon and dinner (followed by something sweet). This works for me but everyone is different. 

Now that I figured out what food to eat and vitamins – (I take a multi-vitamin, iron and calcium pill every day), I have a LOT more energy and I can make it through the day without collapsing on the couch after work. I have increased my weekly workouts and I do 30 minute classes five times a week (a mix of pilates, weight lifting, barre, self-myofascial core workouts and yoga). I LOVE feeling strong again and I am gradually turning that extra weight I gained into muscle. I typically workout in the middle of the day and it's a great stress reliever (which is perfect since stress is another trigger for my Crohn's symptoms). 

Although I have been feeling great, I do fear that my medicine will stop working. I fear I will eat the wrong thing at the wrong place and get sick. And since Crohn’s is a chronic disease I fear that I will have another flare-up causing my intestines to inflame again and I will end up in the hospital – with surgery as my only option of recovery. All of that fear aside, I realize I am lucky that I have responded so well to my medication and I am extremely grateful for the support of my family and friends – and especially my husband who gives me humera shots, takes me to the doctor and lovingly reminds me that “No fried green tomatoes does NOT sound like it will be a good idea for you to eat.” :)

I realize this is a “longish” post but I really want to raise awareness about the disease and to offer support to anyone who has to live with Crohn’s. 

So please, if you aren't feeling well - see a doctor and take care of yourself!
xo, 
jillian
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22 comments

  1. It's so wonderful that you were able to get the proper treatment and figure out what was going on with your body!! Sounds like you're doing all the right things to get this under control and actually enjoying food again!!

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  2. Wow.. thank you so much for sharing. I am so glad you are feeling much better and have figured out exactly what works for you. I am sure it will be ever changing with any lifestyle and diet. But what you're doing sounds great and perfect for you.

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  3. I'm so happy that with the proper treatment you are feeling so much better, sweetie. I'm so pleased that everything is working out and thank you so much for sharing. Have a great day, love. xo

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  4. I'm so glad you've got it all under control! My brother-in-law takes the Humera shot in the belly every two weeks as well and it has made such a huge difference for him! (That, and cutting out all lactose.) I remember when they finally got his diagnosis correct and his diet changed -- being in so much less pain was such a relief for him (and for those of us who love him!)

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  5. I am so, so glad to hear you're doing better. You're such an inspiration, lady! XX

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  6. girlfriend this post makes me smile for so many reasons...i relate to you on so many levels. so happy to hear you are feeling like a new girl these days + pray it continues to stay for you. you don't need to live in fear because you are in control...you have such a great thing going + i am taking notes too! wow. go, you, go!!! also...was giggling through the santorini and feta story (we are honeymooning in greece and santorini is one of our stops) so it's good for me to go ahead and accept cheese can't happen every meal ;)!. Xx.

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  7. So happy you're feeling better! I hope that it continues and that surgery isn't ever needed :)

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  8. YAY! What a wonderful post - thank you for sharing your journey!

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  9. You're amazing-- it sounds like you are doing all the right things and handling this so well! I know the awful feeling of fearing your medicine will stop working-- it's a horrible one, but sometimes we just have to trust that our doctors know best :)

    So glad you are feeling better! xox

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  10. It's wonderful that you've found a way to manage your Crohn’s, and so fantastic that you're sharing your journey with us. I know managing a chronic condition is stressful (my younger brother has one), but your awareness of your body seems to be the most important thing in maintaining your health. Be well, darling!

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  11. so glad you are doing much better and have figured out some trigger foods, it would be very hard not to go overdo though at holidays with all the delicious food

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  12. Thank you so much for sharing your story and your successes! I can't image how hard it would be to have to change your eating habits so drastically, but it sounds like all your hard work has been paying off. SO happy you're feeling better than a year ago! xx

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  13. I've been thinking about you and this and I'm so glad you gave us this update. Not that you have to, but I do think you are a model of someone taking control of their life by taking control of their health.

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  14. Glad you're doing better!!! Thanks for sharing your journey!!

    <3, Pamela
    sequinsandseabreezes.blogspot.com

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  15. I am so happy to hear you're doing well and that you've managed to adjust! It's great of you to share your story here for others who might have it or think they do! It sounds like you're doing all the right things. :) xoxo

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    1. (It's marissa by the way, on manu's accountf or some reason? Ipad problems!)

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  16. good for you! I'm sure it takes a lot of discipline and being cognizant of what you eat.

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  17. Wow. I had no idea and thank you so much for sharing your story Jillian!
    Linh
    http://abeautifulrawr.com

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  18. I'm so glad you're doing better, responding to your medication so well and feeling stronger! Keep up the awesome work!! My best friend from childhood has Crohn's and she's had a lot of ups and downs, but has found a treatment that works for you. So don't worry if the medication has to change, I feel like there is more known about Crohn's now than 10 years ago. And it's awesome you're listening to your body and giving it what it needs. It's not easy!! xo, Katie

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  19. Great post. Glad to hear you are doing better. Alot of people still don't understand Crohn's, My cousin was diagnosed with it 14 years ago. He use to live on dry cereal and it got so bad for him he had to take a leave from school. I'm happy to report that with the right diet, meds and exercise, he is doing great. He hasn't had a flare up in years.

    Best, Mree

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  20. So glad you're doing better! I had a longer commentbut i think blogger ate it!

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  21. Happy to read you are feeling better since last year! You show a lot of self-discipline with your diet and exercise, which is very admirable!

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