I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
I’m losing my colon on May 20th, 2016. It’s going bye-bye. I can’t believe how fast it’s happening. So before I go on, a few disclaimers about this post.
First. Shits about to get real. F-bombs will be dropped. Other curse words will be in here. This is how I often talk in my head and to my good friends. I moderate my language for the rest of the world but right now, I need the satisfaction and comfort of a good curse word.
Second. Like almost all my Health Updates, some bodily functions will be discussed. But that’s the nature of the body and my disease so I will not apologize. Many people with ulcerative colitis tell no one about what’s going on and let it fester because as a whole, we’ve been taught that body functions are taboo for public topics of conversation and sharing. They’re not.
Table of Contents
I debated separating this out into different posts but decided against it. But I am providing a linked outline, just in case you want to skip to other parts:
- UCSF Medical Center Breakdown
- My Thought Process
- The Decision
- Weird Things I Didn’t Know
- What This Means For The Blog
- How Losing My Colon is a Transformation and Not a Loss
So with that being said, I’ll start first with my appointment with the UCSF expert.
UCSF Medical Center Breakdown
My appointment at UCSF Medical Center was on April 5th and since then I’ve been trying to come to terms with my treatment options. The first thing the doctor said when she saw me was
The amount of medication you’re on gives me chills.
Not the first thing you want to hear. She was very concerned about my level of immunosuppression and risk for infection and recommended stopping the 6MP and allopurinol immediately.
She then laid out four management options:
- Colectomy to completely remove the ulcerative colitis and continue with the lowest Remicade dose indefinitely to treat my joint disease. This is considered the standard recommendation.
- Switch to tofacitinib for both ulcerative colitis and joint disease. It isn’t approved for ulcerative colitis yet and there is no data for how it works with joint disease.
- Switch to Stelara to treat both colitis and joint disease. There is data for Crohn’s disease but not ulcerative colitis.
- Start vedolizumab for colitis and reduce Remicade to the lowest dose for joint disease, but this is a high-risk option because it hasn’t been done.
I’m meeting with a colorectal surgeon on April 25th to review the risks and benefits of surgery and then I’ll have to make a decision from there.
My Thought Process
During the time period between the two major appointments, I had a lot to think about. I think this is why my sleep started to suffer a little. It’s during the night that my brain starts fretting. I keep myself busy in the day but nighttime is when what was pushed to the back of my mind comes to the forefront.
I’m tired of my body waging all out warfare on itself.
Pills with lots of risks
I’m tired of pills with lots of risks:
- Liver damage
- Kidney damage
- Bone damage
If I was reaping the benefits of the medication and living in remission, these risks would be acceptable. Most of the risks are either managed through other medications or only a very small percentage of people experience them.
New medication combinations are unknown
I’m tired of living in fucking limbo. Since being diagnosed I get sick, I get better, and I get really sick again. Each time I’m on a high, I think it’s the final time: that I’m in remission. But nope. My immune system continues to find its way around each new medication concoction I have to try.
It doesn’t help that I feel like I’m at a critical age (I’m turning 29 May 12th). I’ve been out of the workforce for a while now. I’ve missed a big portion of life, both social and professional. I feel like I’m never going to catch up if I have to keep going through these cycles. I need something to work and I need it to be something I don’t have to anxiously wait for.
All three new medication combinations available are really unknown and most have many of the same risks as the ones I’m currently on. Also, there is no guarantee they work for my joint disease, which when it flares, is literally the worst pain I have ever experienced.
I would have to try one and wait 4 to 6 months to see if it works and then continue trying the other options if it didn’t. That’s a lot more wasted time for results that are in the “ehhh it might work” range.
I would have to remove my colon eventually anyway
I’m on medications that cancer patients take. When I go get my Remicade infusions, I’m right next to people going through chemo. Most of them are older. But when I look at them I see one possible future.
There are three reasons people remove their colons.
- The available medications, diet, etc., don’t work (this is me)
- The medication works but people don’t like the potential risks and side effects so they decide to remove their colon
- People who have lived with the disease for a long time remove their colons at the first site of pre-cancerous polyps. 10 years after being diagnosed with ulcerative colitis, you have to begin getting colon cancer screenings every 1 to 2 years because the chance you will get cancer greatly increases. In some ways it is pretty much guaranteed. That’s a colonoscopy every year, which is expensive and a hassle (I’ve eventually gone into a flare after each one).
The third reason is why I see myself when I’m sitting next to cancer patients. The possibility is all too real.
Oh, the fertility issue. Removing your colon can reduce your ability to have children because of the scar tissue that can form as a result of your surgery.
During my worst flare last March I hinted removing my colon was something I desired. It was the worst fucking pain I’ve been in my whole entire life.
But I’m a young fertile woman. So no. Don’t get me wrong; I have always wanted to have children. But I have to admit I was frustrated that this was the main reason for me NOT to remove my colon.
I don’t think I should sacrifice my quality of life for the possibility that I MIGHT have a child in the future. I am more than a womb.
People have children in many different ways these days. Right now though, personally, I would like to first meet a person I could see myself building a life with, live with, love, and then have babies. But right now I can’t do that.
Before my last flare, I started filling out an Okay Cupid profile. I was already kind of on the decline but I began the process anyway.
One of my personal growth goals was to be more outgoing and to try going on dates. A couple of weeks later I was hospitalized and just focusing on climbing the hill of recovery again.
So my main point is, I can’t even meet a person I want to have children with while in this condition. And even if I did meet someone, the chances of me carrying to full term with all the flares I go through is highly unlikely.
My family was pretty good at keeping their opinions to themselves because, in the end, they knew this had to be my decision. But they want my colon out. If anything this whole process is harder on them. Let me explain.
When you are really sick, you’re just living moment to moment. You’re trying to stand and push through the pain, trying to get up off the floor, trying to eat, trying to drink water, trying not to cry, trying not to pound the walls, trying not to pass out on the toilet. You’re doing a shit ton of trying so you’re too busy to be worried or even scared.
But your family, who are listening to your screams through thin walls and seeing you drop twenty pounds and look like your skin is hanging off: they’re scared. They’re pacing the floor while you’re in your room and looking at each other with wary and wide eyes.
I want what’s best for me but I would also like to make things easier on my family.
The meeting with a surgeon for an hour-long consultation was on April 25th. If you couldn’t tell from my thought process, I was already leaning in the direction of having my colon removed. I had a couple of weird moments where my eyes got all watery and I felt like you do when you’re on a roller coaster ride and it suddenly veers in another direction.
The surgeon covered all aspects of the surgery, drawing diagrams and outlining everything from pre-operation, surgery, post-op, and recovery.
- The whole large intestine and rectum are removed but all the nerves and muscles are preserved, which makes it possible to retain control over bowel movements.
- A reservoir is created from the last 20 to 30 centimeters of the small intestine and then attached to the top of the anal canal.
My family was surprised when we learned that the whole surgery could be done in one go. All the information we read said it was completed in two different surgeries. This really made me happy. I did not want my small intestine poking out of my abdomen with a colostomy bag attached to it.
However, there is still a possibility this could happen to me. They won’t know until they are working on me. There are three things my surgeon considers when making the decision to not complete the surgery in one go.
- Is the patient malnourished? Luckily I’m not. I’ve had a good recovery this time around and my nutrition looks great.
- Are the patient’s blood levels below average from blood loss? I was anemic from loosing blood during my last flare but my blood work two weeks ago showed I am now in the normal range.
- Is the patient on high doses of Prednisone? This is the factor I have going against me. My surgeon considers anything over 20mg to be a high dose. I am currently taking 35mg of Prednisone daily and that’s unlikely to change. It’s more important for me to stay healthy and the Prednisone keeps me from going into a flare.
The first thing I’m probably going to say when I wake up is “Is it all inside of me?” This is the detail I am obsessing over. I am not confident in my ability to take care of an open wound for any length of time. The thought of my small intestine poking out of my abdomen freaks me out a lot.
Weird Things I Didn’t Know
I’m not supposed to shave for two days before my surgery. And then I spend 5 days in the hospital. I’m going to be a hairy beast when I get out. Shaving increases the chances of getting an infection though so I’ll embrace the beast.
It’s a good idea for me to practice kegel exercises to increase sphincter strength. It’s a muscle like any other, and increasing its strength greatly increases my recovery and lessens the possibility of me having future problems.
If that muscle doesn’t work anymore, I’m screwed. I’ll have to live with a colostomy bag. There are a lot of brave and amazing people my age that live normal and free lives with colostomy bags but I still don’t want one.
A strange pre-op and post-op care routine that I didn’t know or even think about is oral care. I always floss and brush my teeth but it’s really important I add mouthwash to my routine. Bacteria in your mouth can put you at risk for developing lung infections.
Four times a day I need to use an incentive spirometer to keep my lungs active and strong. Basically I inhale into this devise and try to keep the flow cup in the “Best” to “Better” flow range. I then hold my breath for 5 seconds and finally exhale normally.
I can’t lift more than 10 pounds for 6 weeks. Damn that’s hard!
What This Means For The Blog…
I have a backlog of ready recipes and pictures built-up. I’m going back to only posting on Tuesdays in order to save them up for the time period when I’m not going to be able to do anything strenuous. At the moment, I have enough recipes to last me till the end of July.
I’m looking into other more…interactive and immediate social media forms that don’t take so much effort. Instagram used to be a place where you could show behind the scene peaks but now your content has to be so curated and look really nice.
I’m looking into Snapchat and Periscope to share what’s going on. But I’m such a grandma when learning new social media platforms. Also, I think my phone (iPhone 4s) is having a hard time with the newer apps, making learning them super frustrating.
My diet is going to have to change for a while. Bye-bye to salads, whole grains, and other fibrous foods. Your colon is what digests fiber. So with it gone and my body still adjusting to the j-pouch, I have to eat low fiber, low fat, and high carbohydrate diet.
- Foods high in fiber increase the risk of something getting caught in the j-pouch, which would be really bad.
- Food high in fat run through the system fast. In the beginning, the pouch reservoir will be very small and I’ll be going to the bathroom a lot (there will probably be accidents too as my body re-learns how to go). Eating lots of fatty foods will just exacerbate the issue.
- Carbohydrates slow everything down, making it easier on the j-pouch.
This means once my backlog of recipes is exhausted and I’ve recovered enough to work, you’ll be seeing a lot more pasta, potatoes, and bread. There’s always a bright side! This doesn’t mean I have to say good-bye to salads forever. After a year I can try adding more fibrous foods into my diet again.
How Losing My Colon is a Transformation and Not a Loss
After May 20th I won’t have a colon but I also won’t have ulcerative colitis. That’s huge. I have this vision of the possibilities my life can take now once I’ve recovered. And it’s great. Sure I have some blank spots, some expectations that might clash with possible realities, but I see myself moving on. And that is beyond exciting.
I’ve felt stuck for so long. The anticipation of being freed from this disease is slowing growing everyday. When I set the date I was still a little shocked and overwhelmed but I feel like a kid waiting for Christmas Day right now. I’m ready to throw a party. No seriously. I’m thinking of throwing a good-bye party for my colon.
So even though I’m loosing a part of my body, I’m gaining so much more. The body is amazing and can adjust to seemingly impossible transformations. Being able to live a full and normal life without a colon is one of them and I can’t wait to spread my wings.
Read about my Pre-Surgery Jitters
My story continues in Part XII – J-Pouch Surgery
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Part XV – Post Operative Ileus Complications: my painful and scary experience with post operative ileus complications left me very weak, under 100 pounds, malnourished, and very close to death’s door
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years
What a journey you’ve been on through all of this! It sounds so overwhelming, but your persevering and determined spirit are inspiring. wishing you all the best.
Thanks for stopping by and wishing me the best-I stay positive most of the time but it helps when people send me such lovely thoughts!
I came here because I made your chili and was checking out what else you did. That’s scary af, lady.
That’s also amazing that we’re able to take out somebody’s colon and they still can function mostly normally. It also highlights how far we still have to go with medicine because that’s some straight up jury rigging.
Thanks for stopping by Kyle and lol YES-straight up jury rigging!
I am sending you lots of hugs & kisses all through your process, alright lady? You have endured so much, and I am hoping that would be it for you. Colon be gone & great wonderful life (without pain) continue. 🙂
P.S. Whenever you want, come over to have some cocoa (or whatever you can have at that time) with me. We can talk about Remicade infusions experience; it should be fun. 🙂
You’re so sweet Pang-thank you for all the hugs and kisses! And cocoa is always nice ❤️
Well, I thought I’d already seen your master’s thesis. But looking at what you have written here, Megan, I love this even more. But it’s not a master’s thesis, really: you have no need to demonstrate competence in this area, because you already own it. Forget apologizing for profanity,obscenity, or any otherwise unpredicted disturbance to the general complacence. See what you see. Do what you do. And know that you have friends who are listening for what you say next. Who won’t look away.
I know! I had to use an outline and everything! But thank you so much-I don’t think I could have a better group of family, friends, and colleagues surrounding me, listening to me, and not looking away. Also, thanks for doing what you do best: offering the best sort of encouragement for speaking and writing your mind.