The Choice I Made

“There’s nothing more we can do for you.”

Those are not words you ever want to hear come out of your doctor’s mouth. Nope. Those are words that make your heart race, your stomach flip-flop, and your eyes well up with tears.

“Ok,” I said. “So what’s next?”

“Well, the only other option is surgery.” Gulp. “You are a very good candidate and I can make several suggestions of surgeons I would trust if it were me.”

“Ok. But, Boz, be straight with me. We tried everything, right?”

I knew the answer to that question before I even asked it. Yes, we did everything. I know we tried everything. Boz told me, KAP told me, and my surgeon would tell me a week and a half later that I had the 3 of the top indicators for my surgery. So, yeah, we tried everything.

My Ulcerative Colitis was not especially terrible the first year. A negligible flare-up treated with topical steroids, 4 time-release pills, and an anti-inflammatory suppository seemed like nothing to worry about. Then Jersey happened. After that, they put me in a clinical trial for a new drug. It was all downhill from there.

The first of many iron/Banana Bag IVs back in November to combat the anemia. I felt like Superwoman for exactly 2 days and then back to feeling like crap. Pun intended.

A year-long flare-up (yes, it lasted a full year) that included every drug under the sun: Proctofoam, Canasa, Apriso, Hydrocortisone enemas (that was fun), some suppository concocted and mixed by a pharmacist that was definitely NOT covered by my insurance, Prednisone, Remicade infusions (yay, chemo), and finally, Humira injections.

For the science geeks out there (holla!), I was being treated with TNF blockers, but they are really designed for Th1 inflammatory diseases (Crohns) and Ulcerative Colitis is a Th2 disease. Hooray for Histology because I actually understand the difference!!!

Easy as pie, right? Darn Th2 cells think my colon is bad.

In any event, Nothing worked. My immune system barely acknowledged the drugs and my disease continued to spread and wreak havoc on my everyday life, not to mention what it was doing to my running. As a lululemon Ambassador, personal trainer, and run coach, I was finding it nearly impossible to do my job, let alone get my own workouts in on a regular basis.

Lots and lots and lots of treadmill miles last year.

By the time I was training for Philly, I couldn’t run outside anymore. My workouts were relegated to the treadmill nearest to the bathrooms at the Palladium, and sometimes even that wasn’t close enough for me. I supplemented with indoor cycling classes, but fevers kept me from many of my workouts and home from school. I caught every flu and cold any one of my 400+ classmates had. I was exhausted all the time. I was anemic and getting sicker by the day.

As much fun as it was to run 12 miles on the treadmill, I prefer the great outdoors.

My March colonoscopy confirmed that the disease had spread to take over nearly all of my descending colon, showing no signs of slowing down. Two marathons completed during flare-ups was two too many for me. As much as I didn’t want to lose an organ, I really didn’t want to lose my life.

Dear Remicade,
You were wreaking havoc on my hair and my blogging time. Thanks for nuthin.
xoxo
Abby

So, after a year of being sick, getting iron IVs, having chemo drugs pumped into my veins every three weeks, and having my spirit beat to hell by Ulcerative Colitis, I chose the only option I had left.

I had my entire colon removed.

The day after. Colon-free. What am I smiling about? Mostly, I was just happy the epidural was working!

It was not a hard decision. It was either surgery now or later, since the disease was spreading and would eventually cause my entire colon to become necrotic, amongst other not-so-fabulous medical problems.

I trusted Boz when he said we had tried everything. I knew that if I didn’t respond to the drugs from the get-go that I would never respond to them. My body was breaking down and I never felt quite like myself. I wanted my life back. I had just been accepted to NYU’s Doctorate of Physical Therapy program and now I was scared I would be too sick to make it through the next three years.

LIAR!!!

I was fortunate enough to chat with some very candid young women about their surgeries and life after surgery. I also read other people’s stories online and they all said the same thing, “It was the best decision I ever made.” I was sold.

And so, with the unwavering support of JB, I met with a top colorectal surgeon and set a date to have my entire colon removed, a temporary ileostomy created along with a J-pouch. I have no colon. I have a stoma named Rosebud (think Citizen Kane), and a colostomy bag. I wrote about the surgery itself back in June, but have always been reluctant to “come out” about having an ileostomy. I guess the whole colostomy bag thing is why.

All dressed up and ready to go. Purple marks the spot!

I didn’t look at it for the first two days after surgery. When my ostomy nurse, who is AWESOME, came to change my bag I finally saw Rosebud. I didn’t freak out the way I thought I would, though I still couldn’t bring myself to touch it. It took me a few tries to get used to changing my bag, but now I’m a pro.

The biggest fearΒ I hadΒ (childish as it is to admit this) was that people would define me by my ileostomy/colostomy bag. Five weeks after surgery I started my DPT program with 43 perfect strangers whom I’d be stuck withΒ for the next three years, come hell or high water. I didn’t want the first thing they knew about me to be that I have a colostomy bag and I didn’t want to be treated any differently by my professors. I told a few classmates just so I could get help if Rosebud freaked out during one of our 8:30-4:30 school days, but Rosebud is largely still a secret.

I’d much rather be known as The Girl Who Owls rather than The Girl With the Colostomy Bag. What the heck, I can be both πŸ™‚

No more.

I decided when I started this blog that I wanted to Be the Change I want to see in this world. So, here I am. Loud and proud to be an ostomate! I have a stoma named Rosebud who hates dried fruit and spinach and talks after lunch like she’s reciting Shakespeare. Some of my classmates must have heard it but probably didn’t know who or what was making all that noise. It was Rosebud. Sorry for the noise.

I am still me. I ran 13 miles on Saturday, took a spin class yesterday, and am going to run my 10th marathon in October at the Marine Corps Marathon in Washington, D.C., colostomy bag and all!

Post-surgery Fly-ing with my lululemon family πŸ™‚

I am healthier and happier than I have been in more than a year now that I’m fully recovered from my surgery. JB remarked the other day how much healthier I look now. Looking back, I can see how sick I had actually become. I’ll have a second surgery in December to connect my J-pouch to my remaining small intestine so that I can do my thing like everyone else and Rosebud will retire back below my abdominal wall. If it doesn’t work and I have my colostomy bag permanently, I still won’t regret it. I’ll never regret it.

I can run 13 miles of Summer Streets and not look for a bathroom once. I can take a walk with my husband outside. I can take the subway. I can eat without fear. I can plan a date with friends. I can stand in the cadaver lab for three hours and not need to rush to the bathroom every 5 minutes. I can live my life.

Me & Rosebud’s first run. We did A-ok πŸ™‚ Thanks for the help, Rainbow!

So what if I have a colostomy bag? So what? I thought I might care more or be more sensitive about it, but I don’t and I’m not. Got questions? Bring ’em on. Got comments? I want to hear those, too! Do you have a colostomy bag? Tell me all your secrets about how you manage to keep your wafer on during 15 mile run, I’m dying to know. Do you have Crohns or Colitis? Have you been faced with the same decision as me? Tell me about it. I want to know.

You are not alone.

I had this made a few weeks after surgery. It’s to remind me that no matter what I’m going through, I’m not going through it alone.

In hindsight, it doesn’t seem like such a big deal to me anymore. I’m happy to share my story and help other people to understand my disease and surgery. There are a lot of us out there with Crohns, Colitis, and Ostomies. We want you to understand our disease, to help us fight and to raise awareness about Inflammatory Bowel Disease. Walk with us. Run with us. Ride with us.

I kill you, CCFA shark!

I hope that by reading my story, someone out there will realize that there is life after an ostomy. A great life, actually. You can run, you can swim, you can bike, you can do anything with your ostomy! And you can do it all with IBD, too. You just need a little support and a lot of courage to take the first steps.

My first steps back. Thanks for walking with me, Mom!

Remember how treadmill running was my only option for the past year? Well, a few weeks ago I walked into the Palladium with a friend to work out. Whenever I used to walk into the gym while I was sick, I would have to run for the bathrooms. I mean RUUUUUUUUUUUN!!!!!!!!!!Β I expected that feeling to come over me as soon as I walked back into the building. The panic.

When it didn’t, I realized that my life had changed.

The nightmare was over.

The new and improved Abby πŸ™‚

Thanks for reading this crazy-long blog entry (that is, if any of you made it to the end). I hope you have a great day and a great run. Me and Rosebud are heading out the door right now!

Now go out and run!

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78 thoughts on “The Choice I Made

  1. Abby, Thank you for sharing this with us. Sometimes it is so hard as a blogger to know how much to share and what you want to keep private. I can imagine it was so difficult to share this however I am sure there are so many women out the like you and if this blog makes them feel less alone and more empowered than you hAve succeeded. You are a strong, intelligent and beautiful woman. This only makes me admire you more.

  2. You, my friend, are truly amazing. Inspiring in every way. Honest and smart and real and beautiful inside and out. I love that you are being so open about this and sharing it with us. Your courage and strength and positive attitude are just incredible to me. I cannot imagine all you have endured and I think the world of you. I am so looking forward to meeting you at MCM in October! Much much love.

  3. I made it all the way to the end! This is a brave, beautiful post that only continues to show your incredible STRENGTH Abby! I’m so proud of you for sharing your story with the world. Perfectly written. You are, without a doubt, one of the strongest, bravest, most positive people I’ve ever met. This honest post will help so many people. I could not be happier to see you running and spinning and enjoying your life so much! You are such an inspiration to me and, I’m SURE, to SO MANY others as well. Bravo for sharing your story!!!

  4. Thanks for posting this, Abby! I wondered how things were going, but was for some reason hesitant to ask about the details. You are such an awesome, strong person, and I’m so happy to hear that things (aside from dried fruit and spinach) are going so well ❀

  5. I have UC and can’t imagine what a hard choice this was at the time, but I also know what it’s like to feel bad, and tired, and panic for the bathroom at any given moment, and for months on end. You are really inspiring and courageous for being so honest. I’m so happy to hear you are feeling better and running stronger.

  6. I’m so happy you feel confident enough to share your story Abby. You SHOULD. You are an amazing example of overcoming adversity and still remaining an awesome soul. I am lucky to know you personally. I can’t wait to hear when you break you personal best for a marathon!

  7. I’m so excited that you “came out”!! I immediately had a vision of this blog becoming massive with followers that don’t have the support they need, and/or the sharp adjustment curve that you do. Your bravery in sharing is going to be a comfort and a calm for so many people out there, more than I think you may realize. I’m so proud of you. Love.

  8. Incredible post Abby. You are one strong and brave woman – for all that you’ve gone through and the way that you’ve handled it, for “coming out” with your story, for everything. Seriously, I’m tearing up because I’m so happy that you are feeling well and healthy. And that’s the most important thing.

  9. Thanks for sharing your story! I had a colostomy after being chained to a toilet for 10 years. That bag of poop gave me the confidence I never had and it helped me live me life for the first time. I had the reversal last year but I think of Charley (my stoma) fondly.

  10. You are a hero – for taking charge of your health and sharing your journey for others to benefit from. Thank you!

  11. Your post (and blog) gives me inspiration, Abby! I am 5 days post surgery for UC. After beating this disease for over 10 years, the last 10 months it started to beat me so I knew I had to do something. I am confident in my decision to have this surgery – without a doubt it saved my life, and I am excited to get back the quality of life that my severe UC was stealing from me! I look ahead to my first run and building my body’s strength again, and will use your blog as motivation! Thank you! Sending lots of positive vibes to you.

  12. Atta way, Abby. That really took guts (awesome pun intended), so way to be brave. Rock their socks at NYU.

  13. always inspired and in awe– you are a leader, a role model and a teacher to so many of us, Abby! you have the ability to turn every moment into a ‘teaching moment’ and after reading your story, I’m sure there are a lot of people out there who have the strength to plow through obstacles bc they’re motivated by your positivity, courage, tenacity and heart. (i know i am!). SO wonderful to hear that you are doing well and feeling good. I hope to catch you on a run soon! happiness always & big hugs to you…

  14. Abby, this is your old classmate Keith L. (I used to sit next to you in 7th grade!). The funny thing is, I don’t routinely read other people’s blogs, etc, but for some reason I wanted to click on your runstrongereveryday.com link, and I am glad I did. What a journey you have had these past few months! As a person in the medical field, I am always inspired by the positive strength of many of the patients I interact with. I think it is SO HELPFUL to have a positive attitude through any health issues; the positive people seem to get through it SO much easier. To see how you’ve handled this whole ordeal with such positivity, grace, and such a fighting spirit is so inspiring. I know several people with Ulcerative Colitis who struggle daily with this dreaded disease and don’t know if it is going to be a good day or bad day. It must have been a hard decision to pull the trigger, and I’m sure you had your bad days throughout this whole ordeal. I’m so happy to hear you are doing do much better now, and look forward to reading anymore posts in the future! Good luck in your upcoming marathon.

    • Keith! I would have known it was you even if you didn’t mention being my seat buddy in middle school πŸ™‚ You’re a fancy ENT surgeon now, right? I’m soooooo not surprised at all! Thank you for reading and commenting. It absolutely has been a long journey and I’m grateful for every step I’ve had to take–even the horrible ones post-op! Thanks for the kind words of encouragement. I’m honored that you read MY blog πŸ™‚ Hope you’re doing well!

  15. Babs! Just saw your post on Facebook (which I am clearly not on there much). I had no idea you were suffering so much! You are helping so many people with your situation and sharing with them real facts and hope to help them through. I know you will be blessed for your ability to reach others and lift and encourage them – even though you may never meet them. I sincerely pray that those suffering can find your blog and feel of your inspiration! You go Babigail! Looks like you and Rosebud have the begininng of a beautiful relationship. Love you and admire you!

    Addy

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  17. man oh man, you are amazing! As someone who has been down a similar road, i could only imagine. Look how you overcame this, and with a smile. That my friend is strength!

  18. Wow! You have an unreal attitude! That is how to live life! You will always be happy! What an amazing thing to share. I’m so sorry you had to go through it, but if you can do that with a smile on your face you can do anything! πŸ™‚

  19. Just found you from Christine also–what an amazing story. I LOVE your spirit! Wishing you miles and miles of happy, bathroom free running. You rock!

  20. I’m late in replying, but I want to say what so many have said above… I truly appreciate your candor AND your can-do spirit. So many people get depressed because they’re “different” (and I’m not trying to downplay how hard it is to overcome an illness). But I think what people fear most is how OTHER people will react.

    And sometimes their fear is justified… Two women, both very close to me, recently were diagnosed with breast cancer. Both women reported people backing away, acting shocked, and cutting off communications… Like cancer is contagious???

    What the world really needs to know is that we are all good / all deserve love / all can have fun JUST THE WAY WE ARE. (Colon or no colon – or – Cancer or no cancer.)

    Thank you for speaking out!

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  26. Hi Abby! I accidentally found your blog by doing a google search for illostomy bags- My sister is having J-pouch surgery this wednesday. She has suffered for 7 years with flare ups from UC- her story mirrors yours so much!! She took the HEAVY meds worked for a few weeks then stopped!! the meds you named sadly all rang bells for me bc of her taking them! so glad she is having the surgery and will have a normal likf again !! i am sening her your blog! thanks for sharing your story and your positivity is so great to see- made me laugh – which is what you need when you or someone you love is going through this. love that you named your stoma!!! haha! πŸ˜‰ – Melanie

  27. thanks abby! I will for sure! I have a ? though! πŸ˜‰ How long were you in the hospital for your first surgery? just curious! they told her from 3-7 days depending

  28. Hi Abby,
    Thanks for posting this. I don’t know if you still check this site but it is extremely useful to anyone suffering, or friends/family of those with UC. My boyfriend suffers with UC and finds it very difficult to talk about, so I wanted to do my research! He’s only been in hospital twice in his life with UC (only being 24) but the doctors are talking about operating after only a week in hospital not responding to steroids. He hasn’t had much time to come to terms with this, and is extremely frightened. Do you have any words of wisdom for him? I’ve also been worried sick and this blog has really helped. Thanks so much

  29. Hi Abby,
    In April this year I ended up in the ER with horrible abdominal pain. It turns out I had a 12 cm cyst in my right ovary. They had to do an emergency laparotomy to get it out, and when they got inside…oh boy did they find a mess. It seems I have stage 4 endometriosis….crazy extensive adhesions on everything, but an especially complicated one on my bowel. Over the past few months my pain has gotten worse and worse as the endo has continued to spread, totally unhindered by drugs, and my local hospital refuses to touch me since they’re pretty sure there won’t be enough bowel to resection after the removal of the adhesion and I’ll end up with a bag. I’ve started the process of finding a skilled endo doctor out of state, but I’m absolutely terrified of ending up with a colostomy bag and there’s even a chance I may end up with a urostomy bag (my bladder is also completely covered in endo and has been misbehaving for a year now). I finally decided to look up these types of bags online to face my fears essentially. I can across your blog pretty fast. I’m still scared, but seeing how happy you are, even after such a huge change, makes me feel like it would all be worth it to get my life back. I lost my job from all the health complications from endo 2 months ago, and have been in agonizing daily pain for the past 3 months… reading your story, though our diseases are different, it just makes me feel less alone, and more confident that I can get through this somehow, and that the worse thing that could happen would be living my life like I have been this past year, in constant pain. I’d much rather have a bag or two if it meant I could have my life back. Thank you for helping me see this possibility from a different (and much more positive) perspective.

  30. I just had my first colonoscopy yesterday. They took 4 biopsies and found moderately severe colitis. I haven’t been told much of anything else but have 4 more appts. for more testing. I am so nervous and scared about the whole thing. I am glad that I came across your blog today. Reading this made me cry for my future but also has given me hope. It has helped me make the decision to stay positive and take whatever is to come with positivity. I am a young mother with 3 children and being able to have my life back sounds like such a good thing. Thank You.

  31. Wow. what an amazing story. I have Ulcerative Colitis as well and my gastro suggested the j pouch procedure. I had my consultation with the surgeon and they are calling me in a few days to let me know the date of the surgery. it will be within a month or two. needless to say I’m so scared to the point I can’t sleep. I think what I’m most scared of is the second surgery. the reversal. I’m just wondering, did you have it done yet? if so, how did it go?!

    • Lauren-I did have the take down surgery a year and a half ago. It was a totally different kind of recovery with different things to get used to but I am proud to say that I am drug-free, healthy, and my pouch works GREAT now. Email me if you have more questions–I’m happy to chat for days about it! Good luck with your temporary ileostomy!

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  34. Good Evening- just read your story and felt I was reading about myself! Only my surgery was not elective, but was the beginning of a whole new life. After being hospitalized for 3 weeks, in 2002, I was transferred to a hospital about an hour from home, Praise Glory for my husband and primary care physician,yep my gastro was not considering the thought! I made it to my new residence for 3 months and my new surgeon discovered my colon had perforated! My body was a mess! Septic, duedonal bleed ,fevers ,malnutrition. Three months later I was released after learning to walk again and eat solid foods. 13 months later I had the J-pouch surgery and 8 weeks later the ileostomy was reversed . Life is wonderful – compared to the 7 years prior with UC. 14 years later life is good, but still have some infections and have been on Remicade now for RA, lucky me another autoimmune disease!
    But life’s blessings have let me see all 3 children graduate high school and go on and start life as adults . True blessings and can not say enough about my wonderful husband of almost 32 years. Wake each day and say Thank You and continue living as if there is no end! Keep on running!

  35. This is so inspiring! I came across this post on Pinterest only to find out (from your chalk art work pic) that I had my surgery at the same hospital! I am having my reversal in July but it’s been a long road since November. I needed three surgeries due to steroid use and my second one I had to be cut due to small hips. My hubby just ran the Nj marathon and I grew up in the Long Branch area. I wonder if we have the same surgeon, that would be too ironic! Wishing you health and happiness!

  36. I am more than touched! Thank you for sharing your story! Abby you simply rock! I think you are truly a blessing. I am thankful I found this blog! I do not know what all the testing will reveal, but I am encouraged either way by your story, energy and spirit! I wish my mom had been able to read your story. Rock on Abby ….you are amazing!!!

  37. You are amazing.. I had surgery 6 weeks ago now… My stoma is called my nubbin after chandlers (friends) third nipple.. πŸ˜ƒ x i dont run or exercise that much but admire you for maintaining your fitness, most i do is walk a couple of times a week x thank you for your story…. Keep on running x lynn x glasgow. Uk .

  38. Hello, this blog is a few ward old now, not sure if you’re still getting comments off it. I’m currently laying in a hospital bed, riddled with UC. First Remicade treatment a few days ago but they’ve lined me up with emergency surgery if nothing changes soon. I’m terrified and have never spoken to anyone else with UC this bad before. Everyone I know is on maintenance. I was in the middle of training for my first ever marathon and this disease tore me down. A week ago my healthy organs were so tired from helping my diseased colon they almost gave up on me too. I’m tired, laying in hospital, trying to find inspiration that surgery isn’t the death of a normal life. I’m single, scared no one will ever find me attractive again. I’m a strong woman, but that doesn’t stop me feeling so alone and so scared. Thank you for your blog. It brings me hope laying here in this bed alone, to know there are others so similar to me that have broken through and beaten this thing. I still have my diseased colon now, not sure if I kill my healthy body to try save it, or just get rid of it once and for all.

    • Kate-I’m in no position to tell you what choice to make for your own body, but please know that there is an alternative to what you’re going through now. Having been there, having gone through the surgery and having had the possibility (still do, btw!) of a life-long colostomy bag, I can say for certain that I would choose the bag over being sick EVERY DAY OF THE WEEK. I can deal with a bag. My husband dealt with the bag. What I could not, and will not, deal with is having my health and life slip away from me when there’s an alternative. I refused to be a victim. You can get through anything, Kate. Sending you the very best wishes. Stay strong. Stay positive. Stay educated on your options. Hang in there!

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