inflammatory bowel disease

Hope Warrior-Colitis Ninja

Posted on by flareuphope

I found Colitis Ninja on Twitter when I was looking for support/trying to find anyone to relate to what I was going through when I was in and out of the hospital in May. Her mission is incredible, the sole purpose is to support people suffering from IBD, and not just the patients but also the caregivers (so important!!). Her honesty on her blog is so refreshing and she’s just a great friend to have and an important part of the IBD community.  Plus she’s quick to respond to any question and checks in to see how you are doing! It’s continues to impress me the love and support I get from strangers and other people I have never met before.

I’m so thankful for what Colitis Ninja has created, and for the hope that she brings for anyone suffering with a disease. The disease sucks. It’s not just a poop disease. It’s real, it hurts, and it’s scary. When you can find strangers to support you in your fight for a cure, or for remission, or for recovery from surgery, or just to make it through the day, it brings a light into your life that might have been dimmed out a little bit.It’s encouraging, it’s empowering, and it helps me continue to kick this disease in the tushe (yea, tushe). So thanks for sharing that light, Colitis Ninja. You are so appreciated.

 

If you are suffering from IBD, or know someone that is, or just want to learn more about the disease, Colitis Ninja is an incredible resource and so, so supportive. Give her a shout on Twitter, or watch some of her YouTube videos and reach out on FaceBook. And don’t forget to subscribe to the blog. I was lucky enough to get her to answer some questions for me about her experience with IBD. Look into participating in her #showmethemummy awareness campaign (Look for my post soon!)

TWITTER: @ColitisNinja
ShowMe1
What is the number one thing you’ve learned about yourself since your diagnosis?

This is a hard one. I have learned that I am stubborn (in both good and bad ways). I am also very prideful, and I’ve learned that sometimes I just need to let things go. 

When were you diagnosed?
Valentine’s Day 2011. I was blessed to get a quick diagnosis. I had only been suffering for a month and a half.

What are your current medications/what lifestyle changes have you made to treat your IBD?
I now have a j-pouch. I had the ileal pouch anal anastomosis surgery… in short, I had my colon removed. Right now, thankfully, I am not on any medications.
I tried multiple medications/diet changes and in the end, I had to have surgery.

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
For me, prayer–and lots of it!!! But not just that, being able to talk with others about it has been very helpful. Knowing I’m not alone in my suffering. Support is SOOO much more important that most people realize. A lot of people suffer unnecessarily alone and in silence. 

What do you struggle with most? What are you doing to overcome it?
I guess the thing that has hurt me the most (aside from the physical pain) is that I feel as though I was “robbed” of my black belt. Some people may think that is silly, but I fell in love with karate long before I started practicing it. I was 6 months away from my black belt when UC hit. I couldn’t go to my classes because I was glued to the toilet and anemic. Then there’s the whole Prednisone issue. It made my joints stiff and very achy. Not good when you’re in difficult stances. I have taken a step back and realized that just because UC came at the wrong time, it doesn’t mean I’ll never reach my goal. I am feeling much better since my surgery and I’m hoping that I can get back into it around the beginning of the year. Maybe even compete. The only thing is, I’ve moved 3 hours away from my dojo and finding a new (and suitable) one has proven to be another obstacle.

Any advice for newly diagnosed? 
My first thought when I was diagnosed was, “Good! All I have to do is take my meds every day and I’ll be alright!!!” Then it became the biggest and most frustrating battle of my life. I would tell someone in the same situation that this battle is neither fun nor easy. I would tell them don’t let it get you down! Find support. Don’t be afraid to try different treatments or diets! There are many people out there who claim to have been successful on alternative remedies. Never lose your passions. Never let this disease knock you down. You will have downs, but you will also have ups. You are stronger than you think you are.

Rules to live by?
Never lose sight of who you are and what you want to accomplish in life. 

Quote you turn to when you need to be uplifted:
“Now this is what the LORD says–the One who created you, O Jacob, and the one who formed you, Israel–‘Do not fear, for I have redeemed you; I have called you by your name; you are Mine. I will be with you when you pass through the waters, and when you pass through the rivers, they will not overwhelm you. You will not be scorched when you walk through the fire, and the flame will not burn you. (…) Because you are precious in My sight, and honored, and I love you, I will give people in exchange for you and nations instead of your life. Do not fear, for I am with you…”
–Isaiah 43:1-2 & 4-5a

Music/Song: 
So many. First, anything by Owl City. I dare anyone to listen to his songs and contain themselves. Such upbeat and encouraging stuff. My favorites include (but are not limited to) “When Can I See You Again?,” “Galaxies,” and “Dreams and Disasters.” Also, I adore Jon McLaughlin. That man has talent!!!

Go to Snack when flaring
Chocolate. Potatoes. Macaroni.

Activity that lifts your spirits:
Karate. Drawing. Blogging.

Your philosophy/mantra that you’d like others to know about you. 
I am a Christian. I am far from perfect. Without Christ, I would have given up on life a long time ago. I’ve had many battles (a lot of them UC related, but not all), and without the strength and grace He has given me I would be a wreck right now. I’ve had many nights and angry words with Him, but He always has my best interests at heart and He has NEVER given up on me even though I’ve given Him several reasons to.

What would you do with a million dollars?
Firstly, I’ll be honest, I would pay off the student loan debt I’ve acquired. I would invest some of it in Colitis Ninja to raise awareness and probably donate some to some of my friends who cannot pay their medical bills because of IBD. 

Who do you admire?
My husband, Dave, for his wisdom. Don Byington, my karate instructor. Multiple IBD fighters (too many to name!!!).

What is your mission?
I am VERY passionate about raising awareness and helping other people through their suffering. I want others to know that they are not alone. I want others to see that although these times are hard, there is also a beauty in the suffering. That’s been my experience anyway. I want to make others laugh. We do enough crying and mourning over our diseases, sometimes we just need some joy in our lives.

 

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The Paleo Partridge- Hope Warrior

Featured by flareuphope

Thanks for tuning in this Wednesday folks!

Have you met the Paleo Partridge? AKA Martine? She is an amazing lady who creates some delicious AIP recipes to help ease her IBD, and makes many other tastebuds happy as well! Martine battles Crohn’s Disease, another inflammatory bowel disease that can cause some nasty pain and symptoms. But she’s a warrior and fights it with a positive attitude and is super relatable in her posts. She’s also been very encouraging to me personally as I battled my last flare, and her support was/is so appreciated still.  Check out her website www.thepaleopartidge.com . You can also find her on instagram posting mouth watering dishes and gorgeous shots of her travels @the_paleo_partridge. Get to know the Paleo Partridge below! Thanks for answering some questions for me, Martine. You’re the best!

martine

What is the number one thing you’ve learned about since your diagnosis?

I’m stubborn, doggedly so. This can be a weakness as much as it can be a strength, and I realize that while being obstinate about certain things-like your health-can bring great outcomes, it can also become a negative force. So it’s very much a process. (haha! Just ask my near and dear). I will say, though, I’m so proud of the determination I’ve exercised when it comes to my physical, mental and emotional wellbeing-I’ve made leaps and bounds progress and feel healthier than I ever have since my diagnosis of Crohn’s Disease.

When were you diagnosed?

I was diagnosed with Crohn’s Disease at 15. Goodness! It’s hard to believe it’s been a couple decades since that diagnosis.

What are you current medications/what lifestyle changes have you made to treat your IBD?

I currently take Humira 40 mg every two weeks as well as on-and-off Cipro and Cortifoam (a rectal steroid) for stubborn perianal Crohn’s. I started following a paleo lifestyle about eight months ago and implemented the autoimmune paleo (AIP) protocol four months ago with some unsuccessful attempts at reintroductions of eggs and nuts. So now I follow AIP for the long haul, and that is A-OK by me because I’m feeling fantastic.

For some people, medication is enough, but I’m not one of those people. On conventional treatments but without paleo and AIP, I struggle with abdominal pain and cramping, painful abscesses that drain causing fistulas, chronic anemia, zero energy, joint pain and horribly high inflammatory markers.

I’m so grateful to have found out about AIP because it eliminates all of those horrible symptoms. I don’t experience the constant problems with abscesses, and my blookwork has improved so much. I’m especially excited about consistently keeping my C-Reactie Protein (a sensitive inflammatory marker) in the normal range. I’m also ecstatic that my iron levels recently came back up on their own without the need of an infusion.

(THIS IS SO AWESOME TO HEAR!!)

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?

Looking after my emotional and mental wellbeing has been the most challenging aspect of having a chronic illness. And even though I’ve been battling autoimmunity for so long I’ve only recently made progress in maturing my heart and mind.

About a year ago I found a Certified Hakomi Therapist (CHT) and worked very hard with her for several months in order to learn to love all of me, cranky colon included! I spent years loathing the part of my body affected by Crohn’s which means I spent those years actually hating a good part of me because I viewed the diseased part of my body as an invader, a betrayer and a monster. My therapist helped me learn to nurture and love my large intestine, which led to an incredible inner peace and calm as well as a feeling of wholeness, which had been missing since my diagnosis as a teenager.

What do you struggle with most? What are you doing to overcome it?

I still struggle with keeping my emotions in check, specifically I fight against negative thought patterns and anxiety related to the daunting permanency of an autoimmune diagnosis and the trauma of bad (and sad) memories related to suffering with this disease.

In order to keep all of that in check and not slip back into my old habits of self-loathing, I maintain a regular practice of yoga and meditation. The movement of body and mind augmented by breath is tremendously therapeutic and calming; it helps me regain focus and not allow that antagonism between body and mind emerge again. I’m so grateful for my practice of yoga and meditation; the practice has changed my life and I don’t know where I’d be without it.

Any advice for the newly diagnosed?

Hold your head up high. Don’t let IBD or any disease rob you of your self-worth. You are an amazing human being! Be proactive. Educate yourself. Work with the medical professionals to find a treatment-conventional, alternative, or both- that works best for you.

Rules to live by?

Never let the disease define you, you are so much more than the diagnosis. Oh, and prioritize sleep-get your eight hours, kids! 🙂

Quote you turn to when you need to be uplifted:

Hmmmm….this often changes, but I usually write down an affirmation for the month on a sticky note and put it on my computer. This month’s affirmation: “Your dream doesn’t have an expiration date. Take a deep breath and try again.” I love that! It keeps me focused and hopeful.

Music/Song:

Anything by Vampire Weekend- I totally dig every single track on every one of their albums (yep, I’m a fan-girl). Also, can I just say Stephen Paige (formerly of Barenaked Ladies) has the most awesome voice ever, and I crush on him regularly.

Go to Snack when flaring:

Roasted chicken and well-cooked mashed carrots with a big dollop of coconut oil, yummy cozy, soothing, low-residue comfort food.

Activity that lifts your spirits:

Yoga, yoga, and yoga. Meditation. Also dancing to a good beat! 🙂

Your philosophy/mantra that you’d like others to know about you:

I like to remain curious and thoughtful about the world because if you’re bored, you’re boring. And that’s just not cool.

Mangia Paleo-Hope Warrior

Posted on by flareuphope

On Wednesdays we meet warriors. This idea of sparking a little more hope in the world isn’t just something I can always find from within myself. I’ve found that the spark grows more when there are others out there you can draw inspiration from, relate to, who provide a sense of humor, a little support and a whole lot of light when you’re reaching for the stars in the darkness.
Laura and I were diagnosed with ulcerative colitis close to the same time, and her Instagram (@mangiapaleo – follow her!) account displaying how she was using food as medicine to fight her disease into remission was so reassuring to me. Plus she displays the best sense of humor and doesn’t hide about the difficulties and frustrations the disease can cause. When we could laugh about poop together, even through cell phone screens and laptops hundreds of miles apart, I knew I had found an IBD (inflammatory bowel disease) family member. I wouldn’t have gotten through my hospital stay with a good attitude and faced recovery without having her cheers and healing vibes.
So meet Laura, a true IBD Warrior. She has some great recipes and info about ulcerative colitis on her blog as well!

@mangiapaleo

What’s the number one thing you’ve learned about yourself since your diagnosis?

I’ve learned that I am more resilient than I would have ever known. It also surprised me that I took a negative diagnosis and turned it into something that, hopefully, instills inspiration and strength in others.

I think you definitely do that with all of your efforts. When were you diagnosed?
March 2013

What are your current medications/what lifestyle changes have you made to treat your IBD?
Immediately after my diagnosis I began the paleo diet lifestyle. My diet excludes grain, gluten, dairy, legumes, sugar and anything processed. I am currently taking a maintenance drug but do not believe it contributes positively to my health-or at all. *shrug* My diagnosis was just last spring, so I’m still experimenting with what I can and can’t eat or do with my ulcerative colitis.

How do you keep your mental health intact while dealing with the symptoms/changes from the disease?

A huge part of why I stay strong is my accountability from my blog. I feel a sense of purpose when I post new recipes or health information. Upon being diagnosed I also believe I was given an obligation to raise awareness and help others in their journey. Being an advocate for IBD is a reminder that I am in control of my disease and that my diagnosis brought me to a healthier way of living.

What do you struggle with the most? What are you doing to overcome it?

My independence is something I really value, but I can get lonely occassionally. My friends and famiy have been an amazing support, but sometimes you just want someone to surprise-pack a healthy lunch for your or ask how your day was and give you a hug when you come home.
Having IBD is one of those diseases where it is easy to seclude yourself and believe that no one understands what you are going through. But I have overcome that by speaking out about it.
Since I have been very open, honest and candid about my disease I have met some amazing people through my journey. You’d be surprised how many people/acquaintances in your life have Crohn’s an colitis!

Any advice for the newly diagnosed?

I have 3 pieces of advice:
Even though you may not feel like it, you are in control. You own your body.
Do your research on health and nutrition.
Talk about it. Raise awareness and help the average person better understand our illness. It’s a great way to build a network of support, too.

Rules to live by?
Always bite your tongue when you hear someone without IBD tell you they have a stomach ache. Oh, and eat clean and get plenty of sleep!

Quote you turn to when you need to be uplifted:
“Every day may not be goo, but there is something good in every day.”

Love it! Musice/Song: “Three Little Birds”- Bob Marley
I also have a short Spotify playlist called “IBD Flare.”

Go to snack when flaring: Bone broth and roasted carrots with turmeric and ginger.

Activity that lifts your spirits: Cooking, CrossFit, and doing anything outside in beautiful weather.

Your philosophy/mantra that you’d like others to know about you:
I always keep my sense of humor.

Hope and Guilt

Aside posted on by flareuphope

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

Hope in Being a Warrior

Posted on by flareuphope

“I am not the victim of the world I see.” 

-A Course In Miracles

 

I haven’t posted much in the last week because I was scared I’d start delving into the negative instead of staying above the water. I refuse to become a victim of this disease. I would rather be a survivor. But it’s been challenging this last week. So I’m going to acknowledge these negatives as what they are, and move on. Ignoring them is not good, and dwelling on them doesn’t do anything either. So bear with me as I exhale and let out what’s been going on this last week. I promise it will end on a light note.

 I had one full day of work on Wednesday but was unable to attend any of the other days since last Thursday when I left because I almost had an accident. I work in a call center and if I have a sense of urgency, it’s not simply so easy to run to the bathroom when someone is on the other line and you can’t place them on hold. In that instance, I made it but I went home immediately after. I’m scared for Monday. I’m starting to feel a little better and the bathroom trips are lower, but it still scares me. It felt like failure. I’m a good worker. I can do my job well, and I know I have opportunities for advancement. But I have to take time away for myself to heal, and because I am incapable to doing my job fully while I’m flaring. It felt like weakness. Aside from the embarrassment of letting it all go with a coworker in the stall next to you. But I’m pretty much over that. Judge me, please. At this point, grossing someone out from the symptoms of my disease is barely a blip on my radar. Yeah, I’ll blush and be embarrassed, but I would never wish this on them. So let them think whatever they so chose.  

This is the first time I have ever been this sick. There has been blood in the toilet for the last year, but the bleeding and cramping and weight loss and sever flare has never occurred until these last 3 weeks. So the reality of it all has hit.  I have an autoimmune disease. My body attacks itself, in my case my large intestine which causes it to inflame and creates bleeding ulcers. I have a leaky gut and my body is having a hard time absorbing nutrients. I’m on hospital watch until this Thursday, if I show any declining further in health I am to go straight to the emergency room. Talk about scary stuff. And the steroids that I tried so hard to avoid are part of my hope in healing. My back and hips ache like I have the flu and I look like a ghost. However, the emotions are not as bad as I thought they would be, so far at least. I cry at commercials, or songs, but I haven’t over-reacted or had any rage attacks. I cried for a good thirty minutes the other day, but I would call those legitimate tears at the frustration of this disease, not steroid induced. 

I haven’t been able to get out and do anything much beyond going to the grocery store for toilet paper and soup bones or going to my moms. I’m scared to go out further in public because my auto immune system is shot. My roommate has been sneezing and I’ve been spraying lycsol on every surface I can find. I’m terrified that a cold will send me to the ER. I had to cancel tea with friends for the same reasons, also due to the fact that I need to be near a bathroom at all times. Or at least near enough to run to it. Like I could run. My weight hasn’t been this low since middle school. My boyfriend says you can’t see it, but he can feel it when he hugs me. Just a little more bones. 

So, what do you do when you look in the mirror and just see a sick person looking back at you?

You see something else. 

Yes. I have an autoimmune disease. But I am more than my disease. 

I am strong. This disease will not keep me down because I am a fighter and I will keep getting back up. 

How am I fighting? 

I’m resting. I’m reflecting. I’m researching. I’m accepting. I’m changing. 

I took the time I needed from work to allow my body to heal and to avoid as much stress as possible. This is not weakness like I wanted to think originally. This is empowerment. I acknowledged that my body was not capable in that moment, and took the time away to allow it to heal as much as possible. This will allow me to come back and continue to do my job well instead of making myself worse. This is okay. 

When I was told that I am on hospital watch, it was shocking. I knew I was sick, but hadn’t really accepted it until that point. After being sent straight to the lab for testing, I went home and did a little reflecting on myself. This is real. I’ve made some adjustments over the last year to deal with this disease, but at this point, I need to say goodbye to my old lifestyle and start opening my heart to a new one. I spent that evening praying. Perhaps this is my second chance to do whatever it is that I’m supposed to do while I’m here. Perhaps this is my reminder that I’m here to share love with the world. It’s my second chance to do what I was made for. To fulfill a purpose. Perhaps the path I’m taking is the wrong one and I need to hop off of it for a while. Perhaps there are many better things waiting for me to discover. 

So, I’m making some small changes and doing a lot of reflecting. i’m saying goodbye to the things that don’t serve me any more. To taking days for granted.  And I’m saying hello to good health, to love, laughter and happiness. I’m saying goodbye to being a victim, and I’m saying hello to being a warrior. I know this won’t be easy. It will take constant effort to remind myself that I am more than this disease. I am not just an ulcerative colitis patient. I am a young woman who enjoys being with friends and family, practicing yoga, helping others, playing and snuggling her dog, reading, writing, exploring, learning and so many more things she doesn’t know about yet. And yes, I happen to also be battling an autoimmune disease. . 

How do you keep your disease from defining you?

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