Health Update

For more than a month 📆 I’ve been dealing with a wound-like sore adjacent to my stoma. It hurts, it’s gross-looking, it’s increased in size, 📏 it’s morphed and changed and I don’t know if it’s better or worse, but I’ve been seeing my ostomy nurse 👩‍⚕️ regularly to monitor it. (Ostomy nurses are highly specialized and awesome practitioners, and I don’t know how, as an “ostomate”, I’d function without them.)

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Through all of this, imagine trying to have to care for a wound in a dampish place that you have to keep dry because it goes under a heavy-duty adhesive barrier (also known as a wafer), that holds your ostomy 💩 bag to your belly. An appliance system that you usually leave in place for a few days, but I’m currently changing no less frequently than every two days 📆  so that I can monitor the situation. (And because the situation of a dampish wound causes adhesive failure, which causes leakage of poo 💩 under the barrier, which results in more frequent changes… hopefully before the poo reaches the outer edge of the adhesive! 🧻)

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At Friday’s visit, my nurse made the decision that I probably have peristomal pyoderma gangrenosum 🔥, an ulcerous infection that definitely looks as gross at it sounds like it would, what with a root word of gangrene 🤢 in there. If you really want to see, I’ve been monitoring it with pictures every other day. 📸 The condition could be mirroring the ulceration that currently is happening in what’s left of my rectum and anus (ya never cure ulcerative colitis, even when you lose the colon… though when I lose the rectum and anus 🔪 on April Fools’ Day, it should help. No kiddin’.). The game plan for now involves Triamcinolone Acetonide, a dental ointment for canker sores (since it’s made for healing in dampish situations) and 40 mg of prednisone 💊 for at least the next three weeks.

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If you’ve ever been on prednisone for an extended time, you know that it has some super-annoying side effects. Fortunately, the side effects I experience are energizer bunny type 🔋 productivity and night sweats 😓. Not too shabby, compared to how it treats some people. I’m looking forward to the extra energy. Gotta find that silver lining ⛅️. 

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The pic shows most of the things involved in an appliance change. Yeah, it takes a little time ⏱, but I’m getting more efficient every time. (It’s been nearly four months since the colectomy. Four months filled with lots of learning.)

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New Year's Health Update

I started back to work full time this week. It’s been exhausting 💤 but I think being back in a routine is helping me feel better! I’m also probably feeling better because I’m finally over the cold or influenza 🤧 that had me bogged down from before Christmas until recently.

Today I had a follow-up appointment with my colorectal surgeon, 👨‍⚕️ Dr. Umanskiy (who is awesome, by the way). My remaining wounds are looking healthy and healing well. We also set another surgery date… April 1st! 🔪 One surgery on Halloween, another on April Fools Day!

The next surgery will remove what’s left inside me of my rectum and anus and we’ll take my butt out of commission. Really, it will be sewed up, which is commonly referred to as “Barbie Butt” 👙👠 (which cracks me up! (I said crack!)). My gastrointestinal tract will end with my small intestine and my ileostomy*, which means #PooBag4Life! And I’m fine with that. I had prepared myself 🧠 for that possibility. 

Since my insides were in such bad shape 🥴 (Doc again recapped how horribly disintegrated my colon was), and my ulcerative colitis** always affected the lowest portion of my GI tract the most, I’m just not a good candidate for the j-pouch procedure that would have re-established internal plumbing and done away with the ostomy bag. We will remove what’s left of my lower GI tract so it can’t get inflamed 🔥 or infected and I’ll embrace the ostomy life!

Since I’m feeling better being back in a routine, I’m ready to get back to my fitness 💪 routine as well. My goal is to get in awesome shape by the time of my surgery so that healing will be easier. (Last time I went into surgery three-quarters dead ⚰️ and out of shape, plus they had to slice open my abdomen…healing was/is rough. (Dr. U. hopes to not need to slice open my abdomen next time thanks to robotics! 🤖))

So there you have it. That’s where I am, that’s where I’m headed. 

A little further educational content:

*An ileostomy is when the ileum, which is the end of the small intestine, is brought to the surface. Not to be confused with a colostomy, where the colon is brought to the surface.

**Ulcerative colitis is kind of forever. Sure I won’t have any remaining colon-related parts left, but UC is an immune system issue. I still have a jank immune system. In my opinion, surgery is a way to treat the symptoms, it is not a cure. There is no cure.

Countdown to Colectomy 🔪: TOMORROW!

Countdown to Colectomy 🔪: TOMORROW!

At 11:00 a.m. CST  today ⏱, an intense checklist itinerary ✅ was put into action in preparation for tomorrow’s surgery 🔪, beginning with the 11:00 transition to clear liquids and the 12:00 snack of a big dose of Dulcolax. And now, the 1:00 p.m. “Gatorlax” cocktail 🍹… a delightful combo of Gatorade Glacier Cherry and Miralax! I’ll get the opportunity to enjoy eight such 8-ounce cocktails throughout the rest of the afternoon/evening 🎉. Oh, and there are a few doses of Neomycin and Flagyl (antibiotics) 💊 throughout the day too to help ensure a healthy surgery.

I’ll report back later today… I should be doing some laundry and packing my hospital bag, but I think I’ll take a nap until my next cocktail alarm goes off.

Countdown to Colectomy: 3 Days

Countdown to Colectomy 🔪: 3 DAYS! Today’s random thoughts 💭:

Three days! The last 11 days since my initial meeting with the surgeon have flown by!! Just three more days until my Halloween colectomy! 🎃

Speaking of Halloween and 👻 getting parts removed, do you know how people who have lost a limb can experience phantom pains? Turns out phantom colon/rectum is apparently a thing too… sometimes my butt will think I’ll have to go 💩 when it is actually going to be physically impossible! How cool is that? The human body sure is a wacky wild amazing thing!

I think one thing that has made the last 11 days a bit more bearable is that I’ve been keeping a steady stream of 💊 Imodium Multi-System coursing through my body to slow my digestive tract. Days are way more pleasant when you can make it 2-3 hours or more between bathroom trips. Imodium M-S is magical. I recommend it!

I’ve been spending a little time at the family farm. Today I was napping in the living room, and Annie (my sis) and Ellie (4.5-year old niece) were in the kitchen, about to make jack-o-lanterns. I was only half-napping and was hearing Annie teach Ellie about 🔪 “guttin’ a pumpkin” and “pumpkin guts” and Ellie kept hollering… “ewwww guts”. That’s when I realized that I’d be gutted just like a pumpkin on Halloween. 🎃 LOL. (And then I may have shown her the mark on my belly where they’ll open me up and pull my guts out. LOL.)

Wednesday night I’ll clear my colon out one last time before I get rid of the faulty ol’ plumbing… Dulcolax, Gatorade, Miralax 🍹 … some of you know the drill! But I’ll never have to clean my colon out again!

I think I’m ready. I haven’t freaked out too much yet. And I’ve made a packing list 🎒 of some things to keep me comfortable during my hospital stay… like my own pillow 🛌. Hospital pillows are the worst. So I think once my colon is empty and my bag is packed, I’ll be ready!

Stay tuned for the next installment of Countdown to Colectomy 🔪.

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!]