autoimmune

Gratitude Challenge: Day 8- Hero

Posted on by flareuphope

I don’t think I could write a post that named everyone I felt was my hero.  I am constantly inspired to be a better person by my family, my inner circle of friends and my husband. For this purpose though, I’d like to take a little bit of time to talk about the people I have met the last few months.

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I’m honored and humbled to have been surrounded by these amazing and strong people at patient panels recently. At each panel, there were about 3 out of the 16-17 of us that had not had any surgery. Almost everyone else had had their colon removed and now had a jpouch or were in the process of having the surgeries. Everyone had their own ulcerative colitis story to tell, but more importantly, everyone was there because they wanted to make changes and improvements for other patients.  There were laughs, tears, hugs, debates, and a passion for improving the quality of care and treatments for this disease. There were friendships built, connections made, ideas sparked, and mostly…hope resurfaced. There are people missing from these pictures, some that weren’t at the conference and some I couldn’t get a selfie with but you all know who you are, and I’m so grateful for all of you.

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There’s only one colon in this picture, but a whole lot of love. 
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My favorite ninja, and my first IBD friend. 
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This girl is so sweet. 
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Hope Warrior- Shawn

Posted on by flareuphope

Hi folks! Sorry I have been away for so long. I caught a terrible cold and was spending all of my energy on my day job and am just now getting it all back again and getting back into the blog! I promise it will be better than ever before, stay tuned for the next few months to see what’s coming!
In the mean time, I’m happy to introduce you to this week’s Wednesday Warrior, Shawn.
She’s a great example of how your life doesn’t have to revolve around your disease, and you can do amazing things still! Using ulcerative colitis as a driving force and determined to put herself and others fighting autoimmune diseases into remission without having to rely on harsh drugs and awful side effects, and she’s doing great work on this!
Check our her contact info at the end of the blog, and thank you Shawn for sharing!
Here’s Shawn’s story:

I was diagnosed with ulcerative colitis in 2008. At the time, I just took the medication (mesalamine) I was given and it went into remission without a problem. I had a few small flares over the next few years, but was able to get over them pretty quickly. It wasn’t until August of 2013 when I was hit with an intense, debilitating flare. Tests revealed my UC had spread. My gastroenterologist was the worst! He gave me no insight as to how this could have happened and refused to entertain any idea that diet played a role. Instead, he handed me a prescription for prednisone and mesalamine and made sure I was aware that I would need to be on medication the rest of my life. This infuriated me, but looking back now, I’m so incredibly happy that I had the worst doctor ever. It forced me to do my own research on causes and treatment of the disease because I was determined to get off prescription medications! 18 months later and it has become almost an obsession…I WILL figure out how to make people with autoimmune diseases well again without the use of debilitating prescription meds. I have found my calling!

Since that moment of enlightenment, my life has been a whirlwind! First and foremost, I completely changed my diet and in doing so, have been able to get my UC symptoms about 90% under control. I currently follow a STRICT paleo diet, eliminating ALL grains, dairy, processed foods, sugar, and legumes. For 6 months, I even took it one step further and followed the Autoimmune Protocol which eliminates nuts, eggs, and nightshades…foods that can cause inflammation in those that are sick. In doing so, I was able to take my healing even further, get off ALL medications, and add these foods back in with no symptoms! Food is medicine and it has been a game changer for me. Another plus? It has MADE me learn how to cook and it turns out that the kitchen is my happy place! I have eaten some of the best meals of my life while focusing on eating for my health. This is MY #1 PIECE OF ADVICE…even if your doctor tells you diet has nothing to do with your disease, IT DOES! At minimum, it is absolutely critical you get rid of all processed foods and grains. It’s not that bad, I promise!

Secondly, I had to make some major lifestyle changes. Living a rested, stress-free, health-fulfilling life was now my biggest priority. I had spent years in a super stressful job, had a crazy workout routine, ate at a caloric-deficit everyday in an effort to get to my ‘ideal’ weight, dealt with dramatic relationships, and spent one too many nights out until the bars closed. I simply could not live this lifestyle anymore, my health was more important. I immediately adopted a more ‘grandma-like’ lifestyle! I make sure I get at least 8 hours of sleep every single night which means some nights, I’m leaving social outings early, something I have learned to be OK with doing. I also don’t drink alcohol anymore (except for a very occasional glass of red wine) and have had to adapt to being the only one ordering water! Although I still workout regularly (I am a personal trainer after all!), I make sure to listen to my body and tone it down when I need to in order to avoid physical stress. I no longer allow dramatic people into my life. If I do have a stressful day, I make sure to spend at least a few minutes that day in full-on relax mode, focusing on deep breathing and muscle relaxation. This is my version of meditation! I also spend about 30 minutes every night doing restorative yoga poses to detox my body and mind from the day. In purposefully de-stressing my lifestyle, not only have I been able to physically heal, but it has helped me mentally cope with the battle at hand. This is my #2 PIECE OF ADVICE…get rid of as much stress as you possibly can and get some sleep! Eliminating stress is the only way to truly heal.

It may seem like this major life overhaul I’ve had would be hard, overwhelming, and not fun, but it is just the opposite. I’ve never felt so empowered in my life! I’m not letting this disease win! Yes, I have bad days. There are days when I don’t feel well and it’s frustrating. There are times when I want to go out with my friends and have a beer and a giant plate of nachos. There are times when I just don’t want to think about any of it for a second. But, I recognize that its normal to have bad days and negative thoughts. I don’t beat myself up about it. Its what you do with the negativity that matters. For me, I’ll take a nap or read my Us Weekly (my guilty pleasure) to take my mind off of it for a bit. If I’m frustrated, I’ll go get a great workout in and sweat the frustration out! After I take this time away, I turn my feelings into motivation! I head to my computer and do more research, looking for even more information that will help us all beat this disease. My bad days only fuel my fire! And this is my #3 PIECE OF ADVICE…YOU are not YOUR DISEASE! Don’t let it take over who you are. Let it motivate you to live your healthiest life and use those lifestyle changes as empowerment!

I have a ways to go, but in the past few months I have learned so much about treating and preventing autoimmune diseases WITHOUT prescription drugs. It is a possibility and so exciting! As I get information, I will be sharing it to help everyone else via my blog: www.well-belly.com. You can also sign up for twice monthly newsletters focused on wellness as a lifestyle on this site too! If you need ideas for what a meal should look like on a Paleo diet, follow me on Instagram: @well_belly.

I would love to hear from anyone who is struggling with their battle, has questions, or just wants to chat! Email me: wellbellynutrition@gmail.com.

Well-Belly-Web

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
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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.

 

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 in Support Systems

Posted on by flareuphope

I have never been as sick in my life as I have been over this last week and a half. I’m starting to feel like there’s some improvement on the horizon though. I wasn’t able to make it to work today, but I did, so far at least, keep my bathroom visits under 10. I don’t know what the deal is but I seem to be the sickest in the middle of the night. Starting around 1 or 2 I’ll be up every few hours with some severe cramping and the usual toiletry images. This happened again last night but I was able to go about 6 hours today without a painful visit. Hopefully things continue to improve. 

I’ve been sipping on some bone broth daily, trying to get some nutrients. I swear this is a superfood. Thank you to @mangiapaleo for introducing me and @zucchiniandcarrots  for encouraging me to drink it (look them up for awesome paleo and autoimmune protocol dishes). Also thank you to everyone else on instagram and otherwise who has been encouraging my healing and sending positive thoughts and well wishes my way.  The floodgates of the IBD community support have opened since I started feeling so terribly, and I don’t know what I would do without this encouragement and cheer. Every single word helps and gives me hope that we will all heal. This disease, like any autoimmune disease is hard. It’s hard emotionally, physically, mentally, spiritually, it makes you think about every answer you had in your life previously and what you thought you used to know. It challenges you to see any sort of positive outcome when your in the depths of pain and depression. But there is light out there. And that support is out there. 

If you’re suffering from an inflammatory bowel disease, or any autoimmune disease in general, I really encourage you to reach out to support groups, online forums, Instagram communities or even other bloggers. I personally don’t have a Facebook but I’m sure there are support groups out there as well. There’s only so much understanding that your loved ones can provide. And believe me, I am blessed enough to have a very supportive, loving and encouraging support system. My family and my boyfriend have been my rocks through this, listening to me when I cried out of fear or pain, making me smile or laugh when I needed some light, calling to check in, or just wrapping me up in their arms when I wasn’t feeling strong enough. Even my dog has spent the last week snuggled up behind the back of my knees, offering comfort and love. Oh boy, here come the tears. I am so lucky to have and so grateful for all them. There have been times over the past few days that I wanted to just give up. But I didn’t. Mostly for them, because I knew that they were cheering for me. 

 Seriously though, you HAVE to surround yourself with love and beauty in these situations. If you don’t have the physical support system that I do, look elsewhere. I’ve made so many connections with my #ibdfamily on twitter, instagram and through this blog. Your family and friends can be there for you as you go through this, but it’s very hard for them to understand what it’s really like. They certainly try, but there is something to be said about talking with someone who knows exactly what your going through and can relate to your fears, side effects, pain and attempts to heal because they are going through it to. And I really think it helps when you can support them as well. We are all in this together, and the more we support each other, the more awareness we spread, the more positive impact we have, and the more opportunities we create for a cure to be found. 

“It is important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people permission to acknowledge their story.” Iyanla Vanzant.

 

What is your story? What are you going through right now? How can I help give you hope?

Share it with me. 

Hope in My Body

Posted on by flareuphope

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For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel.  My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.

Hope In the Battle

Posted on by flareuphope

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Yesterday started beautifully. I woke up with energy, took my yoga mat out the back porch and spent a good hour flowing and connecting. I had plans to get some grocery shopping done for the SCD diet and do some packing/purging of items in preparation of the move, as well as to get out and enjoy the beautiful weather. I was happy, blissful, and feeling like the medications were finally working. Around one in the afternoon I lost my energy, and the evening ended/proceeded with the worst episode I’ve gone through since my diagnosis.

This is the thing with ulcerative colitis. It challenges you. It wants to beat you.

It says “Try to keep that same blissful feeling,” and laughs while inside the pain is so intense you’re whispering profanities to yourself and squeezing your wrist just to bear through another cramp.

It dares you to not be frustrated when you have to cancel your shopping trip with friends because you haven’t been able to go more than a couple hours without an urgent bathroom trip.

It taunts you to feel energized and get out of bed in the morning when you were up every few hours the night before, rushing to make it to the restroom without waking anyone else up.

It tries to steal your confidence when you look in the mirror and see this gaunt, ghostly figure with dark circles looking back at you. It laughs when you step on the scale to discover you lost another 2 pounds overnight.

It smiles when you still have a terrible taste in your mouth after brushing your teeth and sees the tears in the corners of your eyes.

It wants you to feel the shame burn on your face when you stand in line at the pharmacy with your preparation H wipes and sensitive toilet paper and the clerk tries not to make eye contact.

It may try, but it doesn’t have to win.

There’s always another way to look at things. I’ve felt the worst that I have in a very long time over the last 24 hours. My bathroom trips are in the 12-17 times per day. Everything hurts. I shed a couple of tears of frustration this morning.  That doesn’t mean I’m weak. It doesn’t mean I’m broken. I’m battling. I’m still here. I can fight back. Here are some of my strategies for the war tactics of UC.

The pain is temporary. When it seems overbearing, I try to distract myself with other thoughts. Read a book. Set some goals. Count the tiles on the floor. Make plans for the new house. Hum a song. Think of something better than this moment.

Good friends understand when you have to cancel plans. Start planning another trip. Or a movie session. Or just text. Whatever I can manage.

Don’t make it the disease’s choice whether I sleep more or get up. It’s my choice. It’s not “the ulcerative colitis” that kept me in bed. It’s that I was tired and needed more sleep. Or I’m taking it easy today because I’m exhausted. My choice. Don’t give power to the disease.

Forgive myself for having the ugly thought. It’s not true and it’s not helping anyone to feel sorry for yourself. Yes, this sucks. But I have the power to choose how I’m going to feel about it. Put on a little makeup, and a smile, and you’re good to go. Maybe do a face mask or paint your nails. Show yourself some love. Don’t let this steal your joy. What do you really want today? How can you make that happen?

If the tears come, let them. This is hard stuff. You’re going to be sad. You’re going to be frustrated. Things aren’t going to go your way. Life is not as you knew it before. But you have a choice. You can react in a manner that makes it better, or you can make yourself feel worse. Let the tears fall, then figure out what you’re going to do next and move on.

We’re taught not to talk about our bowels or anything that comes out of them. It can be embarrassing buying preparation H and soothing wipes and keeping it all in a cupboard with your enemas and rectal suppositories next to your boyfriends cologne. Those shameful terms are ones that no one wants to hear or have talked about. But talk about it. Make jokes if it makes it easier. If you keep it to yourself, the disease will stay inside you. The more awareness the better. One of my favorite quotes from Jillian Michaels “Get comfortable with being uncomfortable.” You never know, something you say might inspire more research, might reach someone who is alone in this disease, or may bring some insight to someone who has no idea what an inflammatory bowel disease does.

Ulcerative Colitis can try to steal my dignity, my confidence, my strength, and it can try to do a lot of things to break me down. But it won’t win. I have hope. I am strong and I am determined to beat this.

I don’t know what brought on the extreme episode. Possibly the piece of Guyere cheese. It was on the SCD safe list, but the extreme pain started after that. I’ve decided to add dairy to my list of restrictions and move forward. I just ate some homemade chicken broth, said a prayer, and am waiting to see how that effects me. Other than that, it’s just been water today.

One foot in front of the other and you’ll keep moving forward.

Hope in Diets

Posted on by flareuphope

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Aside from going on the spiritual diet of “May Cause Miracles,” I took it one step further and I started the SCD diet yesterday. Or at least I thought I did. 

I bought the book “Recipes for the Specific Carbohydrate Diet.” (www.scdrecipe.com). Thinking I would give it a shot. So far, the steroid enemas are making little progress toward any remission status (and the side effects have been less than wonderful), so I figured looking at my diet (again) wouldn’t hurt. I’ve been gluten free since I was diagnosed and first went into remission by doing so. But once I stopped taking the canasa I immediately flared up again. That was in September and the bleeding hasn’t stopped since. I did an elimination diet and removed soy from my list of “legal” foods. Still no remission. Some days are better than others, but the urgency is still there and I still get nervous about accidents, and the good old friend blood shows up to say hello multiple times a day. 

Anyway, I figured trying something else wouldn’t hurt. So I bought this cookbook at a used book sale and began reading. Essentially, my understanding of the SCD diet was like the title said “grain-free, lactose free, sugar free solution.” Sugar wasn’t something I paid close attention to, and rice and corn were something that I still allowed on my previous diet.  I decided maybe eliminating those would help. So, I copied the list of legal and illegal foods in the cookbook and went to town meal planning. And I’ve stuck with those meals so far. 

However, it has come to my attention that I’m doing it wrong. After a little further research at breakingtheviciouscycle.info and scdlifestyle.com and thegapsdiet.com, I learned that I should have done an introduction phase with bone broth and such first. I also found out that aloe vera gel was illegal, and that really seems to help soothe my inflamed tum. Ugh. I was frustrated.

I took a minute, closed my computer, and changed my steroid induced attitude. I decided not to be so hard on myself.  I might not be doing exactly what the books say, but I’m making changes and trying. And if this doesn’t cure the flareup I’ll revisit and go to square one. If I get worse, I’ll go to eating just bone broth for 5 days if I have to. But I’m hoping to get better. Hoping that it helps stop the bleeding, and I get to feel satisfied and happy at the same time. Somehow, I’m going to beat this.  I might not be doing it by the books, but I’m doing it this way for myself. Every one of us is unique, every one of us has their own needs and lifestyles, and everyone of us is important enough to feel good every day of their life. You decide what works best for you, I decide what works for me, and we all end up healthy and happy. This is me believing in miracles, maybe we can work it into a Disney song someday. 

So, here’s the gist of what I’m doing. It’s a combo of Paleo, SCD, GAPS and what I know works for my body. 

What I’m having:

Fresh chicken, turkey, beef, fish, lamb, shellfish. 

Fresh spinach, onions, tomatoes and multiple other vegetables cooked really well or blended. 

Fresh and frozen fruits (without added sugars)

Natural cheeses (Cheddar, Colby, Havarti, Monterey Jack, Parmesan, Swiss) and Farmers Cheese if I can ever find it. 

Cooking oils

Nut flours, almonds, cashews, haelnuts, pecans and nut butters with no additives

Honey

Spices, 

Fruit Juices with no added sugars. 

 

What I’m not having:

Processed meats, potatoes, yams, canned fruit, grain of any kind including corn rice and soy, milk, mozzarella and ricotta, ice cream, chocolate (sigh), coffee and beans. Pretty much any form of processed anything. Trying to keep it as whole and fresh as possible. 

This morning I had a delicious green smoothie and my stomach didn’t bloat up like a 4 month along preggo. I ate leftover chicken with cheddar cheese and spinach (cooked really well). I drank a kombucha for afternoon snack and had mixed fruit of pineapple, strawberries and melon before that. This evening I ate boiled chicken with Greek spices and a cucumber and onion salad. It was delicious. I’m just about to settle in for some warm almond milk and banana sauteed with honey. This “dessert” might just satisfy my sweet tooth for the next few weeks. 

How long will I continue this? Hoping til at least my birthday. Or when symptoms go away. Whatever comes first. My birthday is May 19th. Also happens to be World IBD day. Ironic? Perhaps. Reason to celebrate extra hard? Absolutely. 

What dietary restrictions are you following? What have you had success/failure with?