I may be about to get knocked off my feet again by another surgery, but I overall feel healthier than I have in 6 years.
I may be about to get knocked off my feet again by another surgery, but I overall feel healthier than I have in 6 years.
An amazing friend (Brooke), who I met through Twitter, is my exact age and is going through the exact same series of surgeries as I am at the Cleveland Clinic. Living about an hour away from the Clinic, she even came to visit me during my 1st surgery. We’ve become awesome friends and have been able to lean on each other through the ups and downs of this process.
Brooke came up with the idea to start an online resource, Companion Magazine, and asked me to help by designing the entire thing. I’ve always wanted to help others going through anything IBD related, so I of course said yes. The first issue came out in December with stories, articles, tips, and info from IBD sufferers and health professionals. It has almost reached 10,000 views all over the world.
That is amazing.
We’re planning on continuing this as a bimonthly magazine and seeing where it goes. If I can just help one person, I’m so happy.
Feel free to email us at companionibd [at] gmail.com if you would like to be a part of it!
Issues of Companion:
It has officially been two months and three days since my colon was removed.
If I said I’ve never been happier in my life, does that seem believable? Because I can’t remember being this happy since maybe remission, if not before diagnosis.
This time last year, I was taking pain pills in hope to make it to the Christmas tree farm with my family. I barely made it, and was dying of fear and anxiety the entire time. This year? A 100% healthy, laughing 25 year old girl went to get the Christmas tree with her family.
My recovery (knock on wood) has been picture perfect so far. It seemed like such slow progress at first, but it’s like I suddenly hit a point and just skyrocketed upward. My home care nurses have been blown away by my progress and attitude about all of this, and have told me that they’ve learned things from me. We mostly sit around sharing life stories while checking my blood pressure now. I’m not going to lie, I can change my ostomy in record time and feel like a professional (I time myself each time and cheer when I break my record). Yes, I have cussed my stoma out when he doesn’t…cooperate. Yes, I have looked at it and briefly hated myself. But no, I do not regret this in the slightest bit.
My abdominal pain is very minor, if any. When I push myself, like picking up my nephew all day, I feel incredibly sore and feel sharp throbbing pains for a few days. It’s hard to imagine that I could barely inhale just two months ago without severe pain. My scar is bigger than I want it to be, but hey, what can I do about that? I’ve been going back to the gym — I can’t do Pilates, unfortunately, because it’s too much concentrated ab work, but I can engage my abs. So I’ve been doing cardio and weights for a few weeks now. It feels amazing to be exercising again. And what’s really amazing? Not one person in that gym knows I have an ostomy. I feel like I’m getting away with something every time I’m in there.
But what I love most of all? Living. I can live. I can walk outside. I can walk on the bay. I can spur of the moment just…leave my house. Want to jump out of bed and go on a long walk? No problem. I can do that now. I can sit in a room full of people and carry on a conversation without fear. My first trip to Target made me anxious. I still find myself anticipating and dreading the pain and cramping when I’m across the entire store from the bathroom (can you believe I used to only shop in the parts of the store nearest the front??). In the last year, I asked for a prescription for an anti-anxiety medicine, because the anxiety from what UC was doing to me mentally and physically was killing me.
I haven’t touched that medicine since surgery.
I’m able to say “YES” to people. I’m able to go out and do things with Dustin I could never do before. I honestly can not put into words the life that I have gotten back and what it means to me. And oh my gosh: I can EAT. I hated food. I hated food SO much. I used to tell my mom that I wished it were not necessary to have to eat to survive, and that my life would be so much less painful if that were the case. Dustin took me out to my birthday dinner at a restaurant 30 minutes away (I always stayed close to the house if I dared to go out to eat), and I sat outside under Christmas lights and ate the best meal I’ve had in a long time. Did I ever once get up and leave that table? Nope. I’m eating foods that I never thought I would be able to even put near my mouth ever again. UC made me lactose intolerant. I had my first bite of ice cream in 5 years a few weeks ago. I had no pain. No cramping. No effect. I cried (honestly, who cries eating ice cream?). I don’t quite think that anyone has a bigger appreciation for the taste of food than I do right now. When all food has ever done is bring pain and torment to your body, eating it with no effect whatsoever is an indescribable feeling. I probably sound crazy, but I will never take this feeling for granted. I tear up often and pray no one sees me. For the first time in a long time, I’m making plans in advance. It’s a wonderful, in control feeling.
OH — I only take vitamins and supplements every day. Vitamins and supplements. No medicines. Maybe the pharmacist at Winn-Dixie will finally forget what I look like and not have my pile of medicines waiting for me before I even say my name.
I won’t go into details about the ostomy, but I think it’s safe to say I’ve adjusted. I’ll never quite get used to it (and hopefully won’t ever have to), but I’ve adjusted. I’m learning how things I eat affect it. I’m being careful as to what I eat so that I can avoid a blockage. I’m learning how to dress with it (it’s MUCH less noticeable than I thought it would be). I take great care of the little guy when I change the whole ostomy twice a week, and probably talk to him way too much. After all, this will be his only opportunity to ever see me face to face before he’s pulled back in to the darkness in April (when I get a new part of my intestine pulled to the surface). Aw.
Above all, I’m keeping the best attitude possible. I could very easily ask “WHY ME?” every day from this point on, but what’s the point? There is not a single thing I can change about this situation. I’m truly doing my best with what I have been given, and it’s all I can do. It’s all any one can do. If any one else were suddenly given an ostomy, they might hate their lives. But not me. It is a miracle that has saved me from a life that I was barely living that was full of torment.
My 2nd surgery date has been tentatively set for April 29, 2014. I’m excited and scared. Excited to be one step closer to the end of the tunnel, scared of the pain and being knocked off my feet again. I’m TRULY scared of the third surgery, which will set me further back and make me desperately wish for my ostomy days. But only temporarily.
Even though this isn’t truly a cure for ulcerative colitis, I will never be in the pain that I once was in. And because of that, I’m cured.
The difference between having a chronic illness and having a temporary illness is this: you have a fever, you check out from the world and stay in bed until you get better. It’s accepted by everyone around you. It’s a valid excuse to miss work. You’re sick. You get better. You get back on with your life. But if you have a chronic illness, you have no choice but to get up every single day and smile and try to live, because you have no idea if the following day will be better or worse. You have no choice but to try try try. You can’t check out from life, because your illness is always there. Sometimes it’s not as present as other days, but it’s always there. And you’re always aware and you always feel it. And you can’t keep throwing out excuses 24 hours a day 7 days a week 365 days a year, because that’s just not accepted. You would get nowhere. So you push through pain and discomfort every single day in hope for a better day in the future.
I’m so lucky for the existence of a surgery that has eliminated my symptoms, even if it has given me an entire new frustrating way of life to adjust to. I still know so many sweet people suffering, and it hurts me to see it and talk to them because I’ve been there. I was there for so long.
Things will get better for you. Whether it’s through surgery, medicines or hopefully one day a cure, you won’t suffer forever…although I know it can feel like an eternity and leave you in a really dark place feeling hopeless and alone. I’ve been there, too. Keep holding on.
I’ve never been happier to be in my own bed. I flew across the country today and could barely hold myself up by the end of the day. I tried to be strong and normal, tried to make myself stand up straight walking through the airports. I’ve had a lot of mental breakdowns between the surgery and now, but because of my parents and Dustin and the support of my sweet family and a few friends, I’m alive.
My appetite is finally back; took two weeks, but I can finally say it’s back! I ate my first true meal yesterday in Ohio. I ate it and had that same anxiety that I get every time I eat, the fear of the pain and discomfort and the immediate need for a bathroom that always hits me. Always. The anxiety that I’ve had during every single meal every day for 3 years straight now. I just expect it, it’s so normal for me.
But then something amazing happened: NOTHING. Nothing happened. I ate dinner without a single sick feeling. I didn’t have to move. I didn’t have to jump up. I felt no pain. I wasn’t doubled over. Zero discomfort. I kept waiting…and waiting. And waiting. Nothing happened.
I cried. I bawled. My mom thought something had gone horribly wrong. It took me a second to let her know they were tears of joy. She hugged me for a long time when I finally did. If this is what having no colon means, if I truly just got my life back, if I can do little things without being tortured from within, then I really have no words. When simple things have been taken from you for so long, I can’t begin to describe the feeling that you have when suddenly you get them back. I never thought it would happen. I will probably cry at every single meal from now on (don’t be alarmed if you see me, it’s probably from pure happiness). I’ll never get used to it. I will never take this for granted. I’m so used to taking medicines that work for a little bit, and then the symptoms return. Mentally, it’s hard for me to accept that having no colon means no more symptoms. Period. Does this mean I can go do outdoor things now? Go eat with friends? Take a road trip? Go on a hike? Sit on a beach? Go kayaking for longer than an hour? I’m about to cry again.
I’m still recovering, still in pain; I still have an ostomy that I never want to look at. But this ostomy might have just saved my life.
I never knew how hard surgery would be. I came into this having no idea what to expect. Yes, my disease is “gone”. But the abdominal pain from the incisions makes everything so challenging. I can’t stand up straight and need help getting out of bed, etc. It’s like something is always trying to pull me back down into fetal position. I now have to figure out what my small intestines will accept before and after healing, based on any pain they give me. So here goes another trial and error…
I haven’t had an appetite since surgery, which has been a real struggle since I have to eat to take my pain medicines. The idea of food makes me incredibly nauseous and I have to force myself to eat. Apparently, it’s common—my insides were taken out and messed with and put back in—but it’s been a week now without a real meal. I’m surviving off saltines, chicken noodle soup, and as of yesterday, some pita bread (hooray for new things!). My main goal right now is to not get dehydrated. That’s the #1 reason for re-admittance to the hospital. I’m trying so hard, but drinking is as equally as hard for me as eating. I have zero desire for any food or drink right now. I keep waiting to snap out of it. In fact, I’ve been watching Food Network religiously since being discharged on October 20th in the hope that it will spark an appetite! Ha. So far, nothing. But I know that will change.
It’s so hard dealing with the ostomy, I’m not going to lie. I’m being as strong as I can about it, telling myself it’s temporary and that it is the reason I don’t have a disease anymore, but…wow. It’s hard. No one wants to deal with this. It’s hard for me to look at right now. I have yet to forget it exists. I want to be with friends and living my life normally and having a job. I want to curl up somewhere and let all of this just go away. But I can’t. Because it won’t. So tomorrow I’ll wake up, put my brave face on, and get used to all of this. And then I’ll get as strong as possible for my surgery that’s 6 months away. I’ve been told I’ll be about amongst friends living my life with an ostomy soon enough, and that’s so hard to imagine. But I have faith that it will happen. If I keep telling myself I’m strong, then it just has to happen.
Well. My colon is gone. I’m going to make this update brief, because I’m trying to keep my eyes open in the hospital bed, but I’m alive. I made it. And I no longer have a colon.
I’ve never been more anxious in my life. After pre-op day (a whirlwind of appointments with anesthesiologists, admitting interviews, stoma nurses etc.), I came back to the hotel room with a bowel prep in hand and felt overwhelmed. I broke down and cried, because oh my gosh. My colon was getting removed. The nurse had made a small little X near my belly button after looking at my stomach in a variety of sitting, standing, and lying down positions. I stared at that little black X all night in the hotel room. It was that tiny little marking that let everything sink in. I kept rubbing my stomach thinking about how that X marked the spot for a piece of my small intestine to be pulled through and then folded down upon itself. So long pretty stomach, hello scars. So scary. That night, my colon got its last hurrah. It gave me hell the entire night because of the entire bottle of miralax I poured into 4 Gatorades. I hope you enjoyed it, colon. Yes, lemon lime Gatorade is ruined for me.
The next morning, my parents and I arrived at the Cleveland Clinic for check in. By 11, I was lying in my gown on a bed in a small room with my parents. I tried to laugh and act calm. But I was screaming on the inside and ready to bolt. When the nurse came to take me back, I said bye to my parents (and we all said goodbye to my colon) as bravely as possible and was then wheeled into another holding room while my OR was cleaned. Longest hour and a half of my life.
Once in the OR, I’ve never seen something so intimidating yet beautiful at the same time. A bright, shining and sterile environment with a small table that I somehow gracefully transferred myself over on to. Looking up into giant circular lamps that glared down at me, I waited for Dr. Remzi. In he came, and I remembered him correctly all this time (I saw him a year ago): sweet, loving, and genuinely confident in himself.
Me: “Please just give me my life back.”
Him: “That’s exactly what I’m going to do.”
Him: “Are you scared?”
Him: “Do I look scared?”
Him: “Well then that’s all that matters.”
A few minutes later (okay, almost 4 hours later), I woke up to people saying my name. I immediately started crying and asked them if my colon were gone. They reassured me that, yes, it was gone. I began crying more, and after they realized they were tears of joy, they all began to comfort me. I started hyperventilating—every single gasp sent sharp pains through my abdomen. I couldn’t stop. I heard a male nurse ask if it was normal for a patient to cry after surgery. A nurse told me to breathe in through my nose and out through my mouth. Deep breaths. I did, and I calmed down when my parents and Dustin walked into my room. And then I began to relax. But the pain. The searing pain in my abdomen. Let me just say that you don’t realize how you use your abdominal muscles in virtually everything. Inhaling hurts. Talking hurts. Laughing hurts. Crying hurts.
Dr. Remzi had planned the surgery laparoscopically, but he had to change game plans pretty soon into the start. Turns out that I have a malrotated colon—something Dr. Remzi has only seen once in his life (and I’m so happy he did, because he said he had no clue what to do when he came across his first one). Instead of my colon forming a square around the smaller intestines, mine never made the rotation to that position when I was a baby. So instead, my colon was just in an odd shape to the side of my small intestines. This is something that a very small percentage of babies are born with. So what do you know? My colon only got even more weird throughout this process. I’m glad he got to go out with a bang. Because of this, Remzi had to make a much larger incision to take my strange colon out, making recovery just a little harder.
All of that being said, let me try to type this without crying: when I woke up on Tuesday, I didn’t feel sick anymore. At all. Nothing. No subtle pain, no subtle cramping, nothing. For the first time in 3 straight years, I felt like a normal person (besides the searing abdominal soreness, but whatever, I can deal with recovery). A diseased colon was removed from my body. And after 3 years of feeling some sort of sick every second of every day, I felt and still feel NOTHING. I can’t begin to describe how happy I am, or the relief that I feel and have been wanting for years and years. I just can’t.
Since then, it has been a slow recovery. I cried a lot on Wednesday, because I had trouble coming out of the fog of anesthesia. I couldn’t think straight, couldn’t keep my eyes open, couldn’t talk coherently. Nothing made sense to me. I hated it. I was mad at the world. On day 3, today, I felt like a new person. Dustin and I walked the halls with my IV. Very slowly, but hey—that’s amazing. I just couldn’t help but stop him or look at my parents and say “I DON’T FEEL SICK ANYMORE.” So surreal and unbelievable to me. I’ll never forget that feeling. Right now I’m lying in my hospital bed without even thinking about a bathroom. Yes, I have an ostomy bag. It’s just hanging out on me, because the stoma nurses will come give me lessons tomorrow morning. I also had a catheter up one end and a tube up the other for drainage. Lovely, but those both came out today. I’m giving myself pain meds through an IV with a push of a button. Dustin has stayed with me every night. I’ve given my mom a break from sleeping in the wonderful comfortable chairs hospitals provide. The hardest part of my day is getting in and out of bed. Dustin has to pick my legs up for me when I sit back down, otherwise the pain would kill me. I can’t stand up straight, but I know I have to be patient. This morning the nurse gave me an IV of potassium and I cried. The pain that shot up my whole arm felt like it was being slowly burned off. I keep telling myself one day at a time—things will get better.
I’m making slow progress—yesterday I couldn’t sit up in bed and stand up on my own. Today I can. It hurts like hell, but I’m going to push myself through this and get stronger every day.
Ulcerative colitis is gone. I am disease free. Excuse me while I go cry some more. This is going to be such a hard recovery, especially since I’ll have to turn around and have more surgeries. But I already know it was worth it.