Countdown to Colectomy: One Week

Countdown to Colectomy 🔪: Random thoughts 💭 floating around in my head this evening:

One week from now I’ll be going to sleep 🛌without a large intestine for the first time. As I lay here tonight with waves of bloaty crampy gassy abdominal pain ⚡️, kicking myself for every food decision I have made in the last couple days, I’m pretty excited for a day when I don’t have to feel like this. 

Yesterday I saw my therapist for the last time before the big day. 🧠 Mental health is important… I originally started seeing her because of the mind games an incurable invisible 👻 illness play with your brain. One thing I learned at therapy yesterday… that just talking winds me and wears me out (I must be getting low on blood), therefore I feel less bad about shirking my work responsibilities! 😉 

Speaking of work, I sneaked into the office one last time today for a quick meeting and to bid adieu to my staff for a few weeks. 📅 I let them know not to expect anything further out of me until at least mid-November. Just that little visit made me have less work-guilt as I head toward surgery and recovery. 💻 (I do have just a handful of work things left that I want off my list, but they can be accomplished from my couch.) 

I think that’s all of today’s random thoughts 💭. Stay tuned for the next installment of Countdown to Colectomy 🔪. 

Countdown to Colectomy = 10 Days

🏥 COLECTOMY COUNTDOWN = 10 DAYS 🏥

1) As excited as I am to ditch my diseased colon, I think the anxiety 😬, er, I mean the reality is starting to settle in. 😢🤯

2) I'm experiencing a lot of abdominal discomforts today... probably my fault, I let my Imodium MS 💊 lapse. I need to continue eating those pills by the handful at regular intervals.

3) Thoughts of my job 👩‍💻 are causing anxiety issues. I think I need to not look at work stuff for a few days, though purposefully neglecting work may give me more anxiety.

4) I keep having thoughts of pizza 🍕. Yet the thought of pizza also makes me a little nauseous.

5) The most productive thing I did today... unmade my bed 🛏, washed my sheets, remade my bed. If you've ever experienced real "medical" fatigue/exhaustion 😴, you'll know this was an effort. I may have taken a nap partway through unmaking my bed. And there may have been a few curled-up-in-a-fetal-position-crying 😭 episodes while making it back up.

6) Nine days from right now I'll be going to bed with a large intestine for the last time. Weird.

Exciting Scary Stuff

🏥 HEALTH UPDATE: 🏥

Yesterday was a big exhausting day. Mom and I took a little road trip 🚙 to the University of Chicago Medical Center to meet with a colorectal surgeon ✂️ about my desire to quit medicine and have my colon removed in order to have relief from the ongoing ulcerative colitis flares 🔥. In my five years with UC, I don’t think I was probably ever truly in remission.

We were blessed 💗 to have my cousin Lindsey join us for what became a rather long appointment. Lindsey is a nurse practitioner 👩‍⚕️ on U of C’s heart and lung transplant team (there are a lot of acronyms after her name, so I hope my layman’s job title was okay). Lindsey has offered support before, but I never wanted to bother her, but now that it’s time for big scary 🔪 stuff, I decided it was time to bother her! I’m so blessed that she’s going to help manage family logistics when I’m hospitalized too!

I’m also so very happy with my surgeon 👨‍⚕️! He did a wonderful job of explaining things to me and helping me understand. He does this procedure 2-3 times per week. And he has a personality… all docs don’t. LOL. He even commented on my Purdue 🚂 shirt. And jacket. And bag. 

Here’s the plan… colectomy with an end ileostomy. What does that mean? Removal of the colon and creating an ostomy with the end of my small intestine. What’s an ostomy? Bringing the small intestine to the surface and wearing an appliance 👜 that will collect my output at that point. This surgery leaves some options open for future “modifications” to my innards.

I’ve posted previously about the j-pouch procedure (ileal pouch anal anastomosis), which is a multi-surgery ✂️ process that reconnects your plumbing internally, eventually doing away with an external bag. I’m on board with my surgeon’s strategy… he looks at this in stages and we’re focusing strictly on the first surgery for now, we’re not getting the cart ahead of the horse by discussing subsequent surgeries at this point. It’s possible that I may end up not wanting the internal j-pouch or maybe I wouldn’t be a good candidate. Who knows?

The surgeon answered our various questions and somewhere in there I asked him if, other than surgical pain, if I'd still feel like 😢 "this" for awhile after surgery. He said nope, I'd feel better right away. That's when the water works turned on. 😭💦💦💦 #happytears (The surgeon handled my little emotional breakdown pretty well too, so that’s a good indicator of bedside manner!)

While there yesterday, they did a whole bunch of pre-op stuff 💉 to save me from another trip to Chicago between now and surgery. I signed a bunch of papers ✍️, they took some blood, and I met with an ostomy nurse to learn how to manage life with an ostomy. The ostomy nurse also marked me for my ostomy site… you don’t just drill a hole anywhere… it’s got to be convenient to your rolls, to the way you sit, the way you stand, and how you wear your pants 👖. (For the record, an ostomy bag is a whole lot smaller and flatter than I thought!)

So when is surgery 🔪? This will be the best Halloween 🎃 ever! On October 31st I’ll say buh-bye to my colon. 👻 I’ll be hospitalized for 5-7 days and recovery at home for a few weeks following. 

I’ve never had surgery before, shoot I still even have my wisdom teeth! So yeah, I’m scared, and excited, and happy, and nervous, but can’t wait to not feel like “this”! Thank you to all my family and friends for all your ongoing support. 💖

Diaper-clad Purgatory

Nineteen bathroom trips in the past 23 hours. This shit is exhausting. 😉 

For now I have to hang out in this diaper-clad personal purgatory 🔥 and hope I don’t get much worse and know I won’t get any better between now and surgery. 

I meet my University of Chicago colorectal surgeon on Thursday. My U of C gastroenterologist suggested it may be 2-3 weeks until surgery, depending on the surgeon’s schedule. The good news? 📰 I hit bottom two and a half weeks ago so it’s kind of like I’m halfway to surgery already! #cutitout ✂️👇🤙

Thanks to my friend MaryJo for stopping by to visit today! 

#GrottStrong

Please, just cut it out!

I posted the following on Facebook last night. I figured it was pretty good and maybe I should start blogging again with this next phase of my ulcerative colitis journey... 

🏥 ULCERATIVE COLITIS UPDATE:

(Read at your own risk. I self-censored and didn’t tell you all the horrible details here, but I do allude to some things that squeamish people may not want to know about.)

My ulcerative colitis (UC) had been teasing me for months 📆. Two weeks ago today I spent the day in bed as my UC took a fast downward coaster ride 🎢 into an abyss of hell… that being defined as hourly bathroom runs, zero energy, and abdominal distress.

On October 1st, I messaged my GI doctor at the University of Chicago (UofC) for help. He responded immediately and had me stop Xeljanz, start 40 mg of prednisone (the devil’s tic tacs 💊), and go for some lab work 💉. The addition of prednisone has allowed me to sometimes make it more than an hour without a sprint to the toilet 🚽. (And in the spirit of keeping it real, let me just say that my hourly output is indicative of the inflammation 🔴 in my rectum and colon, and rarely has any characteristics that one might expect 💩. ) A UC flare makes you exhausted as it is, but know what else zaps your energy? Loss of blood.

The past two weeks I’ve been using intermittent FMLA leave for work 🗂. I’ve been working from home a few hours most days and have even visited the office for a few hours on several days to deal with in-office work. I’m not sure if I can fake it 🎭 this week to make public appearances at work. We shall see. 

My colon and exhausted body 🥴 don’t like to leave the house. I should also note that I’ve been wearing diapers continuously for peace of mind. Did you know that when your rectum and colon are inflamed 🔥, your sad sick body can’t tell the difference between gas, solid, liquid, or nothing? And urgencies are unreal. The diaper has proven to be a good decision on most days. 

On October 10th I decided against a clinical trial that I was offered and let my doctor 👨‍⚕️ know that I’m not interested in any other drugs 💊. I laid out all my quality of life issues to my doctor and let him know that it’s time for j-pouch surgery 🔪 (Ileal Pouch Anal Anastomosis). 

In five years I’ve been on five drugs (Remicade, Entyvio, Humira, Neihulizumab (trial), Xeljanz, with various “helper meds” like sulfasalazine, azathioprine, allopurinol, etc.) and at present, even the 40 mg of prednisone isn’t doing a whole hell of a lot for me. 

It’s taken my family and close friends to help me realize that I haven’t been me in the last five years 😔. I haven’t had the energy or give-a-damn that I used to. I never really was in much of a real remission in all that time, and if I ever was it wasn’t for very long. When people outside my body are realizing my misery  🤔 more than I am, it’s a wake-up call. I don’t think a gamble on another med is worth my time. I just want to be done with my colon. I miss my life. I miss having the energy to be able to make plans with friends and family and take my niece who is almost five years old on adventures (I’ve not been me at all in her lifetime.).

On October 11th I received a call from UofC to schedule an appointment. This Thursday, the 17th I have an initial meeting with a colorectal surgeon! 👨‍⚕️ I’m still in misery, but when I think about losing my colon, I have a sense of eventual hope. I can see a day where I get my life back… 

Here’s a link to more info and a short video that describes the surgery: 

https://www.crohnscolitisfoundation.org/what-is-ulcerative-colitis/surgery/j-pouch-surgery

[If you are a fellow IBD fighter, have had j-pouch surgery, have experiences with the UofC colorectal surgery department, feel free to drop me a comment and let me know!]

Ulcerative Colitis Update - July 2017

Many of you may know that after much suffering in 2014, I was diagnosed with Ulcerative Colitis (UC). Like Crohn’s disease, UC is an Inflammatory Bowel Disease (IBD) (not to be confused with IBS, which does NOT cause inflammation, ulcers, or damage to the bowel). UC is incurable and there is no “one-size-fits-all” treatment plan that works for everyone. UC is an autoimmune disease in which the immune system mistakenly attacks the lining of the colon (large intestine), causing inflammation and ulceration.

In the fall of 2014, I was hospitalized, diagnosed with UC, and started on a drug called Remicade, an IV medicine. I missed two months of work that fall. By the spring of 2015, the Remicade no longer worked. I started on another IV medicine, Entyvio. It never worked. Once again, in the fall of 2015, I wound up bed-ridden, missed two months of work, and started on Humira, an at-home injection.

Now, fast-forward to the spring of 2017 at which time I began experiencing UC symptoms once again. My “maintenance” meds include sulfasalazine and azathioprine, in addition to Humira. Symptoms have progressed the last few months. Specialized blood tests show that the azathioprine isn’t showing up in my system in adequate amounts, I’m waiting on bloodwork that will measure the Humira (adalimumab) level in my blood (though we’ve already increased the frequency), and the doctor has put me on a course of prednisone, a drug with many side effects (night sweats and insomnia) which are easily outweighed by the benefits it provides during a UC flare… namely the quelling of bathroom urges so you can leave your home and allegedly it helps lessen inflammation.

Periods of being symptom-free are referred to as remission. Since I’ve blown through three big-time meds and never truly been in remission, Dr. Stephen Paul has referred me to a specialist at the University of Chicago. Tomorrow, I will meet Dr. Atsushi Sakuraba of the U of Chicago Gastroenterology Department to determine what course of action we try next? Another drug? Or is it time to consider surgical removal of my colon?

I feel better already, just having a plan in place provides some peace of mind! I guess the unknown of where we go from here was providing more mental anguish than a realized.

Here’s a blog post from someone who reminds me a bit of myself - an IBD-inflicted runner. 

http://www.aliontherunblog.com/2016/12/12/friends-crohns-disease-ulcerative-colitis-want-know/

Pieces of My Insides

NO CURE. This is my life now. I look in the bowl and see pieces of my insides. But ask me how I am and I say I'm fine. When I have a flare, like now, my immune system is literally tearing up the inside of my colon. That’s what ulcerative colitis is.

The day I got scoped at the hospital back in September when I was finally diagnosed, one of my docs said to imagine sliding into home plate wearing shorts. Do you know how your leg would look like ground meat? He said that's what the inside of my colon looked like that day. And there's no freaking cure.

So last fall the switch was flipped and this is my life. For life. 'Cause there's no dang cure. It's a life sentence. I take about 8 (on this particular day) prescription meds plus vitamins, probiotics, Tums, etc. It could easily be more. Every 8 weeks I get a 3-hour IV of a magic med.

[Excuse me, bathroom break.]

And we just keep tinkering with meds to try to find the right combination that's going to keep my body from eating my body. I'm a chemistry experiment. There are people like me out there who eventually lose their colon in an effort to save their life. And there's no cure. No answers. People do die from this. So I guess I am lucky. At least for now.

And who knew that a colon-related disease could ‘cause severe fatigue to the point that I.just.can’t. So you stay in bed all day. And joint pains so bad that you feel like if you straighten your arms your elbows are going to crack. Both arms. Because these weird pains are often symmetrical. Fortunately, I haven’t had the joint pains in awhile. Autoimmune diseases are weird and come with all sorts of possible symptoms like this. Fortunately, my usual non-colon symptoms are just severe fatigue and migraines.

I try to be upbeat about it and try to educate the masses on these diseases. I think I’ve done pretty good so far. I really think tonight was my first real lonely pity party since my diagnosis about 8 months ago. C’mon, I can’t pretend to be happy all the time. And this was a pretty crappy week at work.

Oh, I didn’t mention that what can trigger a flare isn’t known for certain. One thing that many do agree on as a trigger is stress. Stress at work. Stress on your body. Stress on your mind. And so the stress can lead to a flare, and then a flare can get you down and cause stress, and did I mention stress is thought to be a trigger for flares?

Oh, and just one more thing. Meds I take to keep my immune system from attacking my body work by weakening my immune system. I had a cold I couldn’t shake for several weeks recently. To the point that I had to go for a chest X-ray to make sure it wasn’t pneumonia. It wasn’t. So I called it “not-pneumonia” and kept hacking up my lungs. Did I mention stress on the body can potentially trigger a flare? And that flare could lead to more meds that hinder your immune system which could lead to other illness which could lead to a flare which could lead to other illness…

Oh, and I may end up with arms of a junkie, because I have to have routine blood work to make sure my meds aren’t killing me. One of my meds can cause blood cancer. And the disease itself can lead to cancer. And like cancer, there’s no cure. And like cancer, people die from it. But it’s lesser known. Because there are fewer of us.

I’m done rambling. I feel better. This time, please no comments. No messages. No “get well soon” - did I mention this is my life and there’s no cure, so there’s no getting well soon? I shared my inner thoughts tonight for educational and awareness purposes. And because writing is good therapy.

These are just the a few of the rambling thoughts in my head tonight, I'll save the rest for another time. 

I'm running the Rock n Roll Half Marathon in Vegas this fall to raise funds for a cure for IBD (Inflammatory Bowel Diseases - Crohns & Ulcerative Colitis). If you'd like to make a contribution to help fund a cure, please go to http://online.ccfa.org/goto/JoanGrott. The Crohns & Colitis Foundation of America (CCFA) is one of the top charities out there. 80% of funds raised go toward research, education, and patient support.