Brother’s Surgery

So.

Josh’s surgery is done.

They were going to do it laparoscopically but they found that his abcesses were wrapped around his aorta, so they had to do an almost 12 inch incision and open him up. They removed quite a bit of small intestine, leaving him with about 300 cm and he has to have a temporary ostomy until he gets his Crohn’s under control. When he is well again they will do another surgery to reverse his ostomy and hook him back up.

What this means is this. We have to get this kid healthy again. He doesn’t seem to know when he’s getting sick and he can’t let it get this bad again. We have to find a medicine that works for him, and if that means Tysabri then we need to start it now so it has a chance to start working. That’s hard to think about waiting 3-6 months for him to be well, but there aren’t a lot of options left for him. Or me. And now with his surgical procedure and ostomy I believe he is in my boat of not qualifying for most medical trials for new medications.

Crohn’s disease is frustrating and exhausting and heartbreaking. I never want my little brother to feel like this. Please keep him in your prayers to help him heal and get well.

 

I realized

that I haven’t posted in a while.

So mini update.

Brother is ok. Surgery soon, probably end of this month or beginning of next.

I’m feeling ok. I’m worn out this week. And in that being worn out, I had a huge realization.

I have been feeling so good lately. I haven’t felt this good in probably… two and a half years, at least not this consistently well. I’ve had energy and life and it has been so wonderful that I almost can’t remember three or so months ago when I was miserable. Life is like that. We move on so quickly that we forget where we came from.

I have a hard time with summer, with heat. The humidity wears out my body and makes me move slowly. Probably in a few weeks I’ll adjust better, but I need to be conscious of how I treat my body and what I’m ingesting… preferably things with lots of electrolytes right now.

In my business I need to remember to slow down.

Brother

It never fails that when I’m finally feeling better, my brother goes downhill.

Josh was admitted to the hospital on Tuesday and still is not allowed food. He’s stuck on clear liquids and anything more sends him into belly pain.

The surgery team is working with him and is hoping to get him well enough to discharge soon, where he is supposed to rest and gain back some weight so they can do a surgery in a couple of months. He has another CT scan scheduled for Monday so we should hear more about their plans on Tuesday.

The poor kid is miserable. He’s hungry and stuck in a small room with nothing to do but stare at a tiny tv on the wall. He’s already read about twelve massive books and has to be getting tired of that as well. I sent him my computer so he could at least watch netflix, but it is hard to get well in a hospital. It seems like that would be the best place, but somehow you get worn out and drained and poked and prodded and he just wants to come home now.

It sounds like he has a fistula, which is when two loops of bowel get connected by a tunnel, and that has been a recurring issue that has caused trouble. He also has been having a severe flare up which has led to incredible inflammation, and with his history of strictures, this narrowing in his gut may lead to blockages- hence his trouble with solid food right now.

He’s dealing with IVs of antibiotics and steroids but I was honestly hoping that he would be able to eat by now and on his way home by Tuesday. If he can’t handle food they won’t let him go, so he might be stuck for a while.

Please pray for him, pray for healing. Pray for strength and patience with doctors and the family that visits and annoys him (me, mostly. I can be obnoxious.) Pray for the next few months for him, that he can be safe and, at the end of this journey, well.

Thank you, readers, for your love for us. We appreciate it.

Finally.

Today I am ecstatic.

Over the past few weeks I’ve noticed that my energy level seems better, which tells us the Tysabri is finally kicking in. And now I have the official ok to start tapering my Prednisone over the next three weeks.

As long as everything goes according to plan, three weeks from now I will be completely off the Prednisone, which is more than glorious. I will be free of the crazy side effects and able to just feel like me again.

Thank you again for all your prayers, and keep them coming! Tapering Prednisone is always when the flares have kicked in in the past and I’m hoping to just avoid that this time. If this works, I will sing the praises of Tysabri. For real.

Things I’ve Learned.

There are a few things I’ve figured out recently.

1. I need a lot of sleep. I’ve been telling people that for years, but I think deep down I always wished I could be one of those people that sleep for two hours and wake up ready to go. I’m not. Turns out, when I get eight or more hours a night, I’m a much happier person.

2. People don’t understand that as a 24 year old I go to sleep earlier than my second graders. But that’s ok.

3. Sometimes it feels just as good to say no and step back from commitments as it does to get involved. Taking that extra hour a week to do something for me, like walk the dogs or read a book over lunch or bake cookies makes me feel much more centered and whole.

4. Sometimes my mother is right. Scratch that, she’s right most of the time. The entirety of this post up to this point consists of things she’s told me for years. Right now I’m sure she’s somewhere shaking her head and rubbing in the fact that she is wise and she told me so.

5. Tysabri has got to start working soon, right? In that vein, I’ve taken down my Prednisone a notch. I’m hoping that’ll make me more mellow and easier to be around. It’s sort of a Dr Jekyll/Mr. Hyde scenario.

6. I am reminded again and again that the experiences I have had can be used to help people around me and advocate for others. Today at church a girl told me a family member of hers is going through a similar surgery to mine tomorrow and her family is having a hard time processing it. She didn’t even know that I had that experience, and I was able to just sing the praises of an ostomy and how it has changed my life. The funny thing is, before my surgery, I didn’t hear people having these conversations anywhere. Now I feel like God puts those people in my life so I can offer a little bit of light. Not all challenges are bad. Not all scary experiences need to feel torturous. There is nearly always a light at the end of the tunnel and all of these obstacles make us who we are. They build character and add layers and nuances to you as a person. They make you more interesting and more empathetic and more beautiful and I am thankful every day for the ability to appreciate that.

What’s up with this weather guys? March and 82 degrees? Not ok! I miss cool, rainy days. Sweatshirt weather. But I’m doing everything I can to embrace the sun and count the joyful moments in my life.

Stomach Flu

The stomach flu is a terrible thing.

It’s bad enough for people without Crohn’s, but you give it to me and i end up puking until there is nothing left to puke and I still keep going. I’m a trooper. And then I end up curled up in the bathroom floor moaning in pain and I have to go to the ER for pain medication and meds to make me stop puking.

So last week I took a couple of sick days to get over it all and I’m finally back on my feet. I’m ready to rock. Plus we get a four day weekend with conferences and President’s Day and I have to say I love working on a school schedule. Wonderful!!

 

3 Years

On February 6th I forgot the three year anniversary of my surgery.

This was the first year that the date didn’t hold meaning to me. It passed me by and I only realized it later. And that means that finally, three years later, my life seems normal. I don’t think about my ostomy being strange or different, I see it as being a part of me.  And that is glorious.

So on this late anniversary of sorts, I’m celebrating my health and the normalcy of my life. I have been blessed with a second chance at living life the way I am meant to live and just freedom. It is beyond words to think of how far I’ve come from the days where I was chained to the bathroom and had to go 25 times a day or more, to the days where we planned car routes around which roads had the most rest stops, to the days where I couldn’t even think of traveling outside of my comfort zone because my health was so chancy.

It’s a beautiful thing to not have to worry about accidents. And with my Tysabri starting up, I really don’t miss giving myself shots or taking a million pills. It’s just Prednisone for the next couple of months until the new meds kick in and I can’t imagine what life will be like then. Even more normal? Is that possible?

Life

Life gets busy.

I’m the type of person that isn’t happy if I sit around all day. So I often find myself with more to do than I have time for, but that’s how I’m happiest. It leaves me little time for updates and blogging though.

I’ve been going to a new church and working on getting connected in a ministry for people in their 20’s. We have been focusing on telling our stories lately, the why we are who we are stories that explain so much. It is incredible how willing people are to share and how honest they are.

I started to think about what makes my story and so much of who I am comes from what I’ve been through and experienced. That means so much of who I am comes from my disease. I have been made stronger through my weakness and I have been taught to have faith through those moments as well.

I wish I had been able to think about and verbalize my story today, but I’ve been having an emotional day and all I could think about is my grandma. That hit me hard and I got all teary and so I needed to cut it short and move on.

I’m really thankful for the opportunity to meet people who legitimately care. As I was sitting in a circle of girls I didn’t know, crying my eyes out and being all awkward, someone passed me a Kleenex. People have a way of being supportive without even saying a word, and I am blessed continually with people in my life who help me experience that. I am blessed with people who care from the bottom of their hearts and are willing to take on my pain as well as their own. That is amazing to me.

So as busy as I am, I am also being filled up with love by people that I have known forever and by people I have just met. I hope that today you have someone in your life that you can build that kind of relationship with and that you can love them as they love you.

Tysabri

Today was my first day of Tysabri.

First of all, it was the best IV I’ve ever received. This nurse was amazing. And two hours later, I was out the door. Simple.

If this is what my future looks like, hanging out for a couple of hours once a month, well heck, I’m for it.

It’ll take quite a while to feel the effects, but I’m on my way! It’s fascinating. Such a little bag of meds can last for a month and cause so many changes in your body. This stuff must be pretty powerful.

Avoidance

I haven’t posted in quite a while. Since my fantastic news about my last doctor appointment.

I’ve been struggling with what to write and what to share. The day that I had that great news I learned that my grandma was diagnosed with cancer, and that the cancer she has is really intense and fast moving. This has been tough for us all. Our family is small but we love each other fiercely. It’s hard because we don’t live in the same state, but I want to be able to see her as much as I can right now.

My grandma is an incredible woman. She taught me that dessert should always be high calorie and that friends should be treasured. She is dedicated to her church and her family and knows more people than I can dream of. She knits and crochets and cross stitches like nobody’s business and the things she creates are incredible.

What I’m trying to say is that I’ve been avoiding sharing this. I’ve been avoiding updates because this is what I’ve been thinking about lately. But our family is strong and we love each other the way we are meant to love and so I’m sharing this with you to ask for prayers yet again. These things are hard. These things will always be hard, and even though our faith is strong, we are still sad.

Today, remember the people in your life that you love and that love you. I am so glad to have the time right now to call my grandma as often as I can and just have conversations about snow and pajamas and my friends and hers. I’m glad to be able to visit and bake her a cake. I’m glad that I have the kind of relationship with her that has no regrets, just love.