I feel like I owe the world an update since I’ve gone MIA. But you only need to start worrying when I’m writing on here too much; that means I have something to write about. Once I got over the surgical healing (which took a month this time as opposed to 3 after the first surgery), my healing just flew. It was no easy recovery, even though it was shorter. It was the most painful recovery I’ve had so far. There would be burning, searing pains whenever I would stand up, almost like the blood flow hitting the unclosed area of my incision. That pain is something I hope to never experience again. Incredibly excruciating and deep, a sort of icy hot pain. There was awhile where I couldn’t stand up straight and looked like an idiot walking around my house. I won’t lie, there were times I cried to my mother and told her it felt like I would never feel strong and pain free again. The key to faster recovery? Walking. It’s the last thing you want to do, but the first thing you should. I forced myself to walk around my driveway—slowly at first—but gathered speed and strength over the course of that month. My 3 year old nephew liked to “help” me by holding my hand on the walk. I had a stubborn incision that slowly pulled itself open toward the bottom (the stress from my rock hard abs was just too much, ahem), and I dealt with drainage and incision pain for 7 weeks before it finally closed up. That was a new experience in itself, being that my first incision had steri-strips over it—when I removed them almost a month into recovery, my incision was totally closed and healed over. I had to constantly wash and change the dressing on this stubborn incision…and I didn’t like it one bit. I would rather change an ostomy a thousand times than deal with an oozing incision.
I had my 6 week post op at the Cleveland Clinic on June 5th. Getting through security with my ostomy was my worst fear. It didn’t turn out TOO bad, but I still felt humiliated, something that should NOT happen. I’ll devote another short post to that.
The first test was an x-ray. I had to lie on my side and receive a barium enema to fill my jpouch, take an x-ray and see if there were any leaks, and oh man…that was exciting. The enema didn’t phase me; I’ve lost count of how many enemas I’ve had since diagnosis. First of all, everything looked amazing, which is all I could ever ask for. Second, I asked the technician if she could keep the image on the screen of my jpouch so I could go get my phone and take a picture. She seemed a little weird about it, like I was the first person to ever ask that. I tiptoed out through the halls in my gown to hunt down my mother, purse and phone, tip toeing back to my room to take a picture of the screen. I’m not going to lie, seeing that image was like seeing a new baby. I’ve worked for that new pouch for so long. I’ve been through so much pain for this result. I may or may not have teared up…
Second test? Butt muscles. Yep, as good as it sounds. Had to give a rod a good squeeze to make sure I still have some. I nailed that one…as if years of having UC would provide anything but amazing butt muscles. I had heard some horror stories about this test, mainly one about a balloon that was inflated inside to see if your muscles are strong enough to hold it in. I was terrified. Upon walking in to the room with the physician, I immediately began telling him how scared I was. He promised me it wasn’t part of the test. I was SURE he was just trying get me to calm down and lying to me in the process, and continued to tell him that throughout the entire test. He must have thought I was insane. When I finally started to realize that, no, it was indeed not part of the test, the doctor said: “okay, and here comes the balloon!….just kidding.” NOPE. NOT FUNNY.
After those stressful tests were over, the rest of the trip was a breeze. The stoma nurse told me that if I didn’t have so much going on in my life and lived closer, she would bring me on to train to be a stoma nurse. That didn’t make me feel full of myself or anything.
Since returning from that trip, the time has flown by. It’s surreal how something like this can make you live each day to its fullest. I’m so happy every day, and everything is so beautiful. I’ve made a pre-surgery bucket list with Dustin (mostly consisting of foods to eat and things to do), and we’re fulfilling those in my final few weeks before reversal. Kayaking, hiking, cotton candy ice cream, Fairhope Floats, walks to the bay after supper to see the sunset…all things that might be taken from me as I try to recover and adjust to a new j-pouch. I’m so content and satisfied at the end of each day. I’m doing and eating things I never thought I’d have a chance to the rest of my life. I savor each one of them.
It’s funny, because although I would give anything to have never had this disease, it’s given me the biggest appreciation for life. I would have never sat and watched the sunset and simply been in awe of how good I felt, nature and the distance I was from any bathrooms if it weren’t for my diagnosis. I honestly don’t know when it will be taken away from me again. I’ve been living in my new house and making it my own. I never planned on doing that before getting married, but when you’re chained to your parents’ house for 3 years and ripped of independence, I can’t help but take advantage of each day that I feel healthy and able to do something I never thought I’d be able to do in fear of losing it again.
I’m so scared of reversal. I’m so scared of thinking about a bathroom again. No one should go through anything that makes you fear bathrooms, something so normal to most people. I have friends around me having trouble with their reversals…not yet living the “normal” lives that they hoped to get back, and I have friends around me who are doing amazing with their new j-pouches. I have to have faith that I’ll be one of those.
It’s been the hardest, most painful, most amazing 9 months of my life.
I can’t tell you how terrified I’ve been of this second surgery. I’ve never felt better than I have in these last 6 months. Why fix something that’s not broken? That’s exactly how it felt going into this surgery.
Dustin and I have worked so hard since closing on our house up until the day before we left for Cleveland. New paint, new floors, moving furniture, yard work; basically everything that I wouldn’t be able to do afterward. And that’s what’s so scary about it. Going into surgery #1 I was SO sick. That surgery saved my life. This second one is just knocking me off my healthy feet for what seems like no reason at all. But then I remember that I won’t always have this ostomy, and that’s motivation.
Pre op day was a whirlwind. Ushered in and out of offices in a massive, state of the art building to talk to nurses and doctors, to have blood drawn, to sign things, to give your consent for surgery. My last appointment of the day was with Dr. Remzi. His assistant came in beforehand to answer any questions, and immediately just point blank said, “Are you sure you don’t want to keep the ostomy? You’re so young, and your fertility will be reduced by at least 25%.”
That floored me.
Everyone I’ve talked to has downplayed risk of infertility. After helping raise my nephew, all I want is one of my own. I became so choked up and fought with everything in me to not cry in front of her. Dustin sat next to me and just stared at the floor. A million thoughts went through my mind: should I bail last minute? Will my decision of not having an ostomy keep Dustin from having children?
After barely being able to talk to her, in came Remzi. He seemed shocked that I didn’t know the risk of infertility, but told me that he would have the surgery done in a heartbeat—that “harder” doesn’t mean “impossible”.
Again, Dr. Remzi radiated confidence. And again, I put all my faith in the hands of this man. He got up, hugged me tightly, and kissed me so loudly on my cheek that my ear was ringing.
One last meal, one Valium and a poor night’s sleep later, I was being taken back to get my IV at 6:30 in the morning. I was told I was getting an epidural, which I’ve never had. After saying goodbye to Dustin and my parents, I went to a holding room and hugged a pillow so hard while a doctor put an epidural in my back.
And then I got whisked into the OR. In came all the doctors. All of them so sweet. All of them talking to me about getting married and my future plans. And in came Remzi. And what did he do?
"Put on Sweet Home Alabama for her, you like that song, yes?"
Of course I do. I’m from Alabama.
My last memory before drifting off to sleep in the OR? My Turkish Dr. Remzi dancing to “Sweet Home Alabama” blaring from his computer.
I woke up so alert and in so little pain. Apparently epidurals are the way to go. Dr. Remzi said everything went perfectly; although my small intestine sits strangely because of my malrotated colon, he was able to get in there and make a good j-pouch. Because of the rare thing he had to do, he had to open me up in my first large incision again. Wonderful. After waking up the next morning, however, I could barely move. You can’t forget to use your pain pump during the night. I’ve had an up and down day. I almost passed out getting up for the first time. Dustin has had to once again do everything for me. Yet I managed to reach my goal of 6 laps around the floor today when I wasn’t able to walk until DAYS after my first surgery (and I had surgery yesterday!).
So, I fell asleep up there, and never had the energy to keep writing. I am so exhausted. I am so exhausted. I’ve been trying to post this entry since surgery, but I never have the energy to finish the thing. I fall asleep. And this time it’s not from the never ending loopiness of pain killers. I have been so incredibly exhausted since this surgery. After 4 days of rest in a hotel, here goes:
I thought I was doing great. I thought I was doing amazing, completely surpassing my recovery from October.
Then my epidural came out. Ah, the lovely epidural. The thing I said, “why do I need this thing?!” to so many times. Now I know why.
I have never felt such pain in my entire life. This first week of recovery has been hell. When my epidural was removed the day before going home, I thought I wouldn’t ever be able to walk. I need help getting out of bed, I need help walking. I can’t stand up straight. Having open surgery (as opposed to laparoscopic with tiny incisions) makes all the difference in the world in recovery. It’s a different kind of pain from having my colon removed. That was hell, too. But it was…more muscular and incredibly searing around the incision? This one is across my entire abdomen and down lower and incredibly deep. And it hurts like hell and doesn’t feel as muscular. An icy hot searing pain when I stand up. My only peace is when I’m lying down, but I know I have to get up. I know there’s a j-pouch trying to heal in there.
I’ve had weak moments, yes. I’ve cried to Dustin about the time it will take to recover and how I’ll be right back up to Cleveland to endure more hell. And what if the j-pouch doesn’t work? What if this is all for nothing? But today I walked for the first time without being on a dose of painkillers. It hurt, but it didn’t hurt AS bad. And that’s what I have to hang on to. Progress.
Tomorrow I fly back home to Alabama. I can’t wait. I don’t know how the hell I’ll get on that airplane (my cousin flew me up in his jet, and yes, that’s amazing, but it has steep steps…ouch). But I’m counting down the hours until I can hug my nephew and show him my new “ouch”.
I’ll recover. I’ll get through this. I’ll go out again, I’ll live again. I have a new stoma—same spot, different part of the intestine. He’s much smaller and more flush with the skin, which is just asking for pouching problems, but I’ll handle it. I have to, I have no other choice. This time I have a new adorable little house to go home to, a fiance to go home with, and a new j-pouch that will heal and give me the rest of my life back.
Next step? I have to come back to the Cleveland Clinic on June 6th to make sure my j-pouch is healing and ready to work. Through a series of tests to make sure there are no leaks, to make sure my muscles are working in there, etc., I’ll get the all clear to come back in August for my last surgery, the reversal. Yikes.
I honestly don’t know whether to say this has been the best or worst year of my life, because through the hell of surgeries, I’ve been given so much life back already.
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: