ONE YEAR JPOUCH-VERSARY!

This is such a big day for me in more ways than one. One year ago today I was given a second chance at living a normal life with my reanastomosis, or in terms other than what my dad says, my jpouch hook-up! Throughout this post, I’ll have pictures showing how amazing and life-changing this year has been!

I reflect a lot over what I have been through over the past few years, but nothing compares to what I felt one year ago today. My surgery was early, we had to be at the Cleveland Clinic at 3 a.m.

I struggled with my ostomy, from being a little self-conscious at times, to my obstruction, to the everyday challenges and struggles that come with being a 24 year old girl with an ostomy. Companion Magazine was my saving grace. Everyone I’ve met through my magazine has taught me that it is so important to stop and be thankful for the position that I was and am in. I am so grateful that God blessed me with the idea of starting an online magazine, because I really think it has helped me more than it has others (but I hope it’s equal). Before your reversal surgery, all of the nurses and and medical people and other jpouch-ers tell you that it takes about a full year for your jpouch to have normal functionality, before your body really adjusts to life with your jpouch.

Let me tell you, that is the TRUTH…hallelujah and AMEN.

I had some road blocks, with my iron deficiency and my cuffitis and the wonderful obstacles I had throughout the summer, but I have overcome those and have been feeling amazing! I’m so blessed to have an amazing support system of (especially) my family and friends, who understand what it truly has taken for me to get to this day.

I really have a new understanding of who my real friends are, who have been there for me since I was laid up in the hospital for weeks at a time. Even my new friends (who I love SO much) who have taken the time to understand what I went through, put themselves in my shoes and who understand that parts of my lifestyle are different from theirs and don’t question it. They know after only a few months what I can and can not eat, that stress is really bad for me, what I can and can not do and that after a certain number of drinks; to take the alcohol out of my hands.

I know a lot of people who have crossed my paths can still be confused about what a j-pouch is.

Well, I’ll get scientific for a sec.

The correct term for a, “jpouch,” is ileal pouch-anal anastomosis.  It is a surgically constructed INTERNAL (I have a lot of people think that my jpouch is still outer) reservoir, usually situated where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching them together. The internal walls are then removed, thus forming a reservoir.  The reservoir is then stitched or stapled into the perineum where the rectum was.

Shorter version: 12 inches of my small intestine was formed into a J shape pouch in order to replace the function of my colon and part of my rectum.

What I tell new peeps: My small intestine is my new colon. It’s weird, but I love it. Yes, I have no colon. Then I usually get a facial expression that is like uhhhmmmmm… and I’m just like PASS THE BREAD. Here’s a pic of what my insides look like : jpouchA lot of people are like, “So, what does that even mean, can you not eat, can you not drink alcohol?” I have even been asked, “Can you live without a colon?”

No. I’m a ghost. Ghosts are real and here I am.

Haha. Yes, you can live without a colon and life is awesome if you have a really talented surgeon like I did, Dr. Scott Strong. I miss Dr. Strong! I went from seeing him ALL the time, because it takes 3 surgeries to build a jpouch, to not seeing him at all anymore :(. Dr. Strong and I had a love-hate relationship. When he told me that I had to have an ostomy in 3 DAYS..it was super hate, but by the time they were rolling me into the OR for the THIRD time, he was my favorite person in the world. Dr. Strong was and is incredible. He always told me like it was, NEVER lied, loved my spicy attitude and gave me sass right back. One time during a pre-op I complained about the swelling in my lower stomach. Saying, “When is this going to go away. I hate this swelling.” Of course that was stupid and very girl-like. Without missing a beat, Strong looked up at me and said, “Maybe it’s just you?”

Lol. I still have the swelling, by the way. My stomach is just different looking now. Do I complain about it to the people who love me the most who I know won’t judge me. Yes. Do I know I’m SO LUCKY that my stomach looks the way it does (since I had laparoscopic surgeries). 100%. Strong is literally an artist.

My diet consists of high lean protein, little sugar, NO FIBER (fiber is really painful to eat) and little carbs. But for me, a lot of carbs, because I love carbs. Who follows diets perfectly? I certainly don’t. And as time has passed I have found that I can eat more food that I’m not supposed to without feeling too badly. My dad gets super mad at me when I don’t eat what I should, but I have been working on bettering that. I definitely can eat a lot more than if I had my ulcerated colon in my body still. Alcohol is ok some days, others not. I stick to vodka and sprite, wine and anything that is too sugary doesn’t sit well with me. I have to watch how much I’m drinking as well, i.e. NO shots. Becoming dehydrated is really easy for a patient with a jpouch, because your colon is responsible for retaining water. Now water doesn’t do anything for me, drinking it is pointless and actually BAD for me because it flushes me out. I have to drink G2 to get the replacement hydration and sodium that my body is now missing.

All of my blood work and labs that I just had done look the best they have in 2 and a half years and I’ve been feeling so great lately. I’ve been out with friends, working out a lot, and going on interviews. I have a lot of energy and even have a few drinks now and again.

Honestly I couldn’t be happier with the progress I’ve made in the past year. I know a lot of people with ulcerative colitis or Crohn’s are terrified of getting surgery and the idea of an ostomy then two more surgeries then dealing with a jpouch seems daunting. I’ll be honest that it is daunting. BUT my life is so much better than it ever would have if I would have let my colon stick around. Well, I probably wouldn’t have much of a life if I would have let my colon stay, but I know a lot of people who bravely made the decision for themselves to have surgery that would  tell you that they feel the same way.

Finding a good surgeon, having a good support system and preparing yourself as much as possible by researching and talking with willing people like me about what the process is like can only help. I always tell people who I first meet, or who I first tell about what happened to me, that I could have sat in my room and cried for 10 months while going through surgeries and having an ostomy. I could have felt sorry for myself, not left my house, made my family and friends miserable and completely shut down.

Some days, I did. But what got me through all of those days was the fact that I knew that I should be thankful for what I did have. Health. And the chance to live a better life WITHOUT my large intestine. To put it simply: When you get knocked down, you have to get back up. I have been knocked down A LOT in my life. And getting back up has been a lot better and brighter than staying down.

If you have any questions about having the IPAA surgery series, or my life with a jpouch, please feel free to comment below! I do my best to get to all of the emails that I receive, so if you want to shoot me a quick email, I’m always open to that as well.

Also, please check out http://www.companionibd.com for additional support. I have had SO many contributors from all over the world who have been through countless different situations with IBD, surgeries, ostomies and life thereafter. All of them are willing to help, too!

This post and my one-year of newfound health has to be dedicated to my very best friends, Mallory and the Rusnak’s, especially Mary. The Rusnak’s house was the first I went to the very DAY I found out I had to have an ostomy. That day is the worst of my life, but sitting in the kitchen with Mallory and Mary immediately soothed my heartbreak. During every hospital stay, after every surgery, throughout every, single painful moment, the Rusnak’s were there, reminding me to be strong. Mary was truly a guiding light throughout my journey and now she will be an angel continuing to guide us through the rest of our lives. I love you, Mary. Thank you for showing that bravery and strength through suffering is what being a hero means.

A friend of the Rusnak family, Rachel, is running the 2015 Boston Marathon in honor of Mary Rusnak. She is fiercely and AMAZINGLY trying to raise over $2,500 to dedicate to Ovarian Cancer Research. Please visit her funds page to help support Rachel, Mary, the Rusnak’s and the millions of others affected by Ovarian Cancer by clicking here.

I have told the story of how I found this verse many times, but I’ll tell it again because it has helped me so much. I wrote it in a card I gave to Mary and it is beautifully tattooed on my mom, my sisters and my arms forever now. I first read it after my diagnosis, when I was in pain in my apartment in Columbus googling blogs written by people who had UC. One girl wrote, “I read this and it gives me strength.”

“My Grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions and calamities…

For when I am weak, then I am strong.”
2 Corinthians 12:10

If you or someone you know and love is being affected by Crohn’s Disease or ulcerative colitis, please visit http://www.ccfa.org to find ways that you can give back to research that is going to help find a CURE for these terrible, painful diseases.

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16 thoughts on “ONE YEAR JPOUCH-VERSARY!

  1. Great story. We have emailed in the past. Had my J pouch in August. ostomy closed in December. Life is good. Thank you for your advice. Good bye bag.

  2. Once again, you have me in tears! All of your blogs are so relatable and so encouraging. I go in for my FINAL jpouch surgery in a week and a half!! Reading this has made me so incredibly thankful and anxious for my future with a jpouch. Thank you again, you’ve helped change my life and my attitude in so many ways

    • Thanks girl! I’m sorry I had you in tears, though..lol 🙂 SO happy for your upcoming surgery, you will love it! Remember that there will be challenges to face, but look where I am now! Patience is a virtue. I know you’re a fighter and you’ve shown incredible strength..keep it up! Let me know if you need anything!

  3. Wow. Very good read. Just met my surgeon on Friday to give the go ahead on J-pouch surgent. Almost 1. Year to the day of having life saving ieliostomy surgery. My stoma has saved my life! But when I found out I was a candidate for j pouch surgery, it was hard to say no!
    I have followed you on Twitter and look forwRd to following you as I will be close behind during my process
    Thanks for sharing!
    Dawn Krahn

  4. You are such an inspiration. I am also in my early 20’s and have ulcerative colitis. It dominates my life. I always thought that surgery meant a ostomy bag for the rest of my life (I am someone who loves dressing up or going to the beach), so I am so thankful to hear that someone is enjoying life post surgery without a permanent ostomy bag! Wishing you good luck for the future! 🙂 Keep us updated!

  5. Thank you so much for this post, it really gave me hope. I had my 2nd surgery about a month ago and have had a rough recovery… Just got home from another hospital stay and I’m still having a hard time. I’m honestly really nervous to get my ostomy taken down because I WAS living a very “normal” life after surgery #1, and now that this one has been so hard it is scary for me to think about going through another surgery that is going to change my life once again. Anyways, thanks for reminding me that there is a light at the end of this long tunnel 🙂

    • Hi Emily!
      I actually had a very similar situation to yours, as I had a lot of trouble after my second surgery with the kind of ileostomy I had. I had a lot of leak problems and the stomach acid-like output would burn my skin. I had to order all new kinds of flanges and had to go to my local hospital and have a nurse help me with how to properly change my flange (which I always hated doing). I was so nervous to have my takedown, this was the first surgery I cried before. I was worried about adjusting to a NEW kind of life and I was scared to know what it was going to be like to use the restroom again. But, I was SO happy when I woke up and saw my stomach, and after you use the restroom for the first time you know how its going to feel. I promise you will love it! Don’t be nervous! Stay strong! xoxo

  6. Congrats a little late on your your Anniversary. I will hit my 1 year J-pouch-versary in April. As you have said, it has been a rough year with a lot of ups and downs (I also have to get monthly iron infusions) but even the worst day with pain and cramping because of eating something that didn’t sit well is better than my best day living with Ulcerative Colitis. Without question it was 100% the right decision for me and am glad it was for you too. Here’s to hoping that life with a j-pouch just continues to get better! Oh and I have been looking at your magazine too, wonderful work there, I will definitely refer friends with IBD for a good resource!

    • Amen! Thank you for your kind words! Glad to hear that you are doing well! I’m so happy to hear that Companion Magazine could be of help to you! Keep being awesome! xoxo

  7. Takedown was 2 months ago. For me so far this is like having a UC flare all over again. I’m now dairy/soy/gluten free, low sugar, almost no vegetables, no alcohol, need to eat GF pasta almost everyday to minimally control diahrrea. Still it comes nearly every day late afternoon/early evening, along with stomach cramps, loss of energy, urgency, etc.

    2 months after the 1st surgery I could eat whatever. Apparently the 2nd surgery wasn’t entirely successful, the stapler misfired twice and they couldn’t do mucosal stripping. And they left a 5″ cuff in.
    After 3 surgeries and 7 months with an Ileostomy I still have to take Canasa, Cortifoam, Cholestyramine solution, plus Lomotil. And now on anti-biotics for a 2nd time since 3rd surgery.

    Seriously, fuck this. I wish I died after the Remicade stopped working.

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