It’s midnight. But I’m lying in bed wide awake crying. Crying because I have no colon. But I’m crying with happiness and relief.
I was falling asleep and fell into the most vivid recollection (dream, daydream?) of being bedridden. Of lying in my parents’ bed staring at the blinking clock just praying time would fast forward so I wouldn’t be alone anymore through every minute of the night. Of the pain; the pain that started in my abdomen and grew so intense and sharp that I would cry out. Of trying to eat, knowing that I had to so that I could stay above 100 pounds, but feeling immediate pain and agony as soon as food touched my mouth. Of being paralyzed, because as soon as I moved a leg I was falling out of the bed trying to make it to the bathroom…to only see blood. Blood. So much blood. And then seeing another day and doing it all over again, knowing I had no other choice.
So much has happened since the worst days of my life with UC. I’ve been able to block it out in my head and try to only look forward. But I just woke up from that recollection and I haven’t let myself remember it so vividly in so long, and I felt so panicked and terrified.
And then I remembered that my colon is gone. That terrible, terrible colon that was destroying me from the inside out is gone and it is physically impossible to ever go through that again. And so now I’m crying.
It has been 5 months and 4 days since my colon was removed. Five months. Believe it or not, I still get apprehensive eating new foods out in public. I still have a fleeting moment where I brace myself for pain after eating. I’ll never get accustomed to being able to sit in one place for more than 15 minutes. My 2nd surgery is fast approaching (April 29th). My j-pouch is about to be created in my body. In these 5 months, I’ve been able to do more than I’ve been able to in years.
For those who think an ostomy holds you back in life, please come talk to me. I’ve hiked, I’ve kayaked, I’ve run, I’ve worked out at the gym, I’ve jumped on a trampoline, I’ve gotten engaged, I’ve taken engagement pictures, I’ve bought a house, I’ve started an Etsy business, I’ve helped start an online magazine for those with IBD, I’ve reached out to hundreds of sufferers, I’ve written an article for a big health magazine, I’ve continued to help raise my almost 3 year old nephew, I’ve won my first award at an art show, I’ve eaten milk products for the first time in over 5 years, I’ve tried new foods, I’ve gone fishing from sunrise to noon, I’ve hugged, I’ve laughed till I cried, I’ve worn crop tops (something I didn’t think was possible), I’ve worn almost all my pre-surgery clothes. And unless you’ve been told about my ostomy, no one around has a single clue I have one. There are no red flags above your head as you go about your day. You truly have to have suffered to be at the point I’m at, however. If one of my sisters woke up with an ostomy tomorrow, it would be the end of their world, a complete struggle. It is the best thing that has ever happened to me. It has saved my life.
Does that mean this has been the easiest 5 months of my life? Hell no. I’ve been so frustrated at some moments I could scream. I’ve had skin issues under my ostomy that stoma nurses still can’t figure out, and as usual, I’m having to figure out through trial and error what’s causing it. Allergic reaction to adhesive, skin prep, adhesive remover, or the wafer? Or a yeast infection? Still battling this one. Still trying not to scratch my stomach too much in public. What my skin needs is to breathe, but that obviously can’t be done. There’s not a second that goes by where I’m not thinking about my ostomy (especially with this skin problem). Does it need to be emptied? Is there not much in there? Does that mean I have a blockage? Do I have any pain? Is there a leak? Are my clothes too tight? Are they hurting it? Can you see it? And when I sit, recline, sleep, etc., I feel as if it’s never in a good position, that I’m bending it in a weird way. I’m always checking my ostomy. Always. Night and day. I get up at least once a night to tend to it, just once if I’m lucky. It is literally always on my mind.
That being said, up until surgery, I cried myself to sleep at least twice a week for 3 years. No exaggeration; it’s something I’ve never told anyone. I have not cried once since coming home from surgery. I think that speaks volumes. I’ve said this a million times, but I would live with an ostomy a thousand times again instead of going through the hell I went through for too many years. I feel sick when I think about what I could be enduring.
But. I absolutely can not wait until the day I can look down at my stomach and only see the scar of where my stoma used to be. I get a wave of relief when I realize this isn’t permanent. Yet I’m dreading not having my ostomy, because my good friend Brooke is going through a little bit of hell again after her last and final surgery. It scares me to death. But unlike UC, I have to know things will improve and get better. I never could think like that with UC. It was impossible.
I went to see my GI for the first time a few weeks ago since making the surgery decision together. The last time I sat in his office with him, I had my head in my hands crying. I was so defeated. I had lost. My body had given up the fight against my disease and was letting it totally take over, no matter the strength of the medicine that suppressed my immune system. We chose to put an end to it through the scary, last resort surgeries I had read too much about. And not just at a local hospital—across the country. When my doctor walked into the room a few weeks ago, I jumped up and hugged him. I didn’t realize until after I was done talking that I had just talked 90 to nothing about what I’d been able to eat, do and accomplish. I was out of breath. I couldn’t stop smiling. And he couldn’t either. He had promised me that before he left to start his new job in another state, that he would have me UC free one way or another. You upheld your promise, Dr. Whittaker. Thank you. You are truly the best doctor in this world and I was lucky to find you in the end, and only wish I could have had you sooner. You have some incredibly lucky patients awaiting you wherever you end up. You’ll always be the doctor that saved my life.
I made the best decision I’ve ever made in my life. I have my life back. No, I’m not done with the surgeries. I’m scared to death about the pain I still have to endure. I still have to take steps backward in order to go forward. But I can confidently say that I made the best decision I’ve ever made in my life, because if all else fails, I come back to the point I’m at now. And I would never trade this for my years with UC. Never.
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.