My First Stoma-versary

A Reflection on Halloween 2019: My Colectomy

During the month of October 2019, my ulcerative colitis flare had taken a quick downward spiral and I had been housebound all month. I was in the bathroom as much as 20 times per day and wearing an adult diaper daily (which usually proved to be a wise decision at least once per day). It was earlier in the month I had told my gastroenterologist, Dr. Sakuraba, that I was done with medicine and ready for surgery. (I had already proven invincible to Remicade, Entyvio, Humira, a trial drug (Neihulizumab), and Xeljanz.)

Mid-month I met with my colorectal surgeon, Dr. Umanskiy to discuss plans for my Halloween surgery. My hope had been to end up with a j-pouch (ileal pouch-anal anastomosis), which involves removal of the colon, a temporary ileostomy (ileum of small intestine brought to the surface for waste to exit body), and eventually being reconnected internally, with a portion of your small intestine having been recreated as a substitute for the rectum. Dr. Umanskiy made no promises. It would all depend on how surgery went and what condition my insides were in. Had I been well, it probably all would have seemed scary, but when you’ve been in such bad shape, you’ve wished you would die to feel better, surgery isn’t so worrisome, it’s your only hope. 

After my last-ever Gatorade-Miralax colon prep and a miserable night of not sleeping, it was go-time. My cousin Lindsey, a nurse practitioner who worked at the University of Chicago at the time, picked up my mom (they’re neighbors) and they headed to Valparaiso to pick me up. (Lindsey later told me that the look on my dad’s face that morning as he waved goodbye to Mom and her from the backdoor, was of sheer worry. Awwwwww.)

It was still pitch black out and it was icy cold and pouring rain as I left my condo with my backpack filled with everything I thought I’d need for a comfortable hospital stay. Yeah, just like vacation, I overpacked. But at least when you go for a planned hospital stay you have the opportunity to overpack! (Pro-tip: if nothing else, take your own pillow.) Usually the one-hour or less drive from my place to the University of Chicago Medical Center goes quickly… that morning it was the longest drive of my life. I recall trying to pass out with the hopes that I’d wake up and we’d be there, but then I couldn’t get comfortable, so I just mostly stared out the window into the dark, cold, wet morning.

Finally someone came to take us to pre-op. This is where things start to get fuzzy. This is when I knew it was safe to quit acting so damned strong. I just couldn’t get up, I couldn’t think about moving. Mom told the young lady that we were going to need a wheelchair. Of course Mom then had to direct the staff member that I was the one that needed a wheelchair because evidently if you can’t see a person’s challenges on the outside, they don’t exist. (Ninety-nine percent of the time, when my mom attends medical appointment with me, those who don’t know us assume that she is the patient.) Somehow I made it into the wheelchair, and off we went. The pre-op area smelled of plastic - the kind they make light-use garment bags out of. Turns out it’s because every patient gets a commemorative University of Chicago Med garment bag to store their stuff, which is well worth the cost of admission. 

My sister Anne, the veterinarian, was to meet us there. She lives northwest of Chicago in West Dundee. I remember being absolutely miserable and I feel like we waited forever and I kept asking where Annie was. It probably took her longer because she had to go past/through Chicago to get to us. And it may have already been snowing by then. I recall later learning that it was a very snowy Halloween that day. Anyhow, being a veterinarian, Annie has often joked over the years that if I was a dog, she would’ve humanely euthanized me long ago (yeah, our family has sick humor). I had mentioned that to my surgeon, so I’m sure he was looking forward to meeting her. 

Finally someone came to take us to pre-op. This is where things start to get fuzzy. This is when I knew it was safe to quit acting so damned strong. I just couldn’t get up, I couldn’t think about moving. Mom told the girl that I was going to need a wheelchair. Somehow I made it into the wheelchair, and off we went. The pre-op area smelled of plastic - the kind they make light-use garment bags out of. Turns out it’s because every patient gets a commemorative University of Chicago Med garment bag to store their stuff, which is well worth the cost of admission. 

I remember that once I was in my hospital gown they insisted that I pee in a cup for a pregnancy test. I couldn’t make it to the nearby restroom under my own power, so back into the wheelchair I went. I hadn’t had liquids in many many hours, and peeing proved impossible. Eventually, since they are not allowed to take one’s word for it, they tested via a blood sample, which takes a bit longer. I do remember several people of the surgical team coming in and out to introduce themselves and gather information. I particularly remember Dr. Skowron, a really cool female medical student of some level, perhaps a fellow, who I’d end up seeing almost daily during my stay (and she was on the team for my May 2020 surgery too). I vaguely remember bidding adieu to my mom and sister and being wheeled out of pre-op, through some cold hallways, and into the operating room. 

I’m sure time didn’t pass so quickly for my family, but the next thing I know, I was in and out of consciousness in post-op. I was in pain; my whole abdomen hurt. A nurse kept putting some sort of a remote button in my hand and telling me to use it. But I was in and out of consciousness and it didn’t click that the magic button was to self-administer pain meds. Mom and Annie were there, and Lindsey was for a little bit at some point too. I feel like we were there for a long time, but I wasn’t totally with it, so maybe not. I remember hearing that we were waiting for a room to be ready for me. 

I remember that once we were at my room, being moved from the post-op bed I was in to the bed in my room was traumatic. I couldn’t sit up (it didn’t register then, but when they slice through your abdominal muscles, moving isn’t easy… especially that soon after surgery). Since I could not sit up or move my abdomen, I couldn’t help in any way. And I don’t like not being in control. I don’t remember much else about that night, but mom stayed the night in my room and stayed the next day too. Mom went home with Lindsey after work the following day.

Now, a year later, the individual days of inpatient care are a blur, but I’ll piece together a few interesting tidbits:

• The surgery was done laparoscopically with DaVinci robotics, so there were a few small slits in my belly where tools had been inserted. I was cut open from my belly button on down a few inches so they could get my colon out of me once it was all disconnected. They stapled that shut, but left gaps in it that had to be packed daily for a few months with packing strip material to help it heal from the inside out. 
• I learned that my colon was perhaps the worst my surgeon ever saw. As he removed my sick guts from my body, the tissue was disintegrating in his hands. The fragility of the tissue slowed things down, adding more time to the surgery. I believe I was under for five or six hours.
• When I first looked at my belly, I saw two ostomy bags and likely freaked out a little. The one on my right I expected, it was my ileostomy where the ileum of my small intestine now exited my body for waste removal (which at some point soon I would learn was permanent and that I wasn’t a candidate for the j-pouch procedure). This is where my GI tract now ended. (I had been marked for surgery two weeks earlier. They don’t just bore a hole in you anywhere, a stoma nurse worked with me and had me sit, stand, bend, and tell her how my favorite jeans fit, to determine the best place for the ileostomy to exit the body.) 
• The ostomy bag on my left was connected to a mucous fistula. My anus and rectum were remaining inside me for the time being, but the tissue was so ill and inflamed, the surgeon made the decision to bring the top of my rectum out of the surface of my belly so that any “ick” could either exit out my bottom or out my belly, an emergency exit of sorts. Turns out we didn’t need a bag on there, it didn’t produce much, but it did produce enough to require changing bandages daily for the next six months.
• Ostomy nurses are amazing specialized nurses and I saw someone from the ostomy team daily to help me learn how to manage my new system. The first day or two when they would come for a bag change, I was afraid to even look at my stoma. The nurses were so understanding and helpful with both the mental part of it, and teaching me how to care for it once I was ready to accept it, so that I was set up to be as successful as possible once discharged.
• I totally forgot until just now, but I had to be topped off with a few units of blood because I was so low due to blood loss just from the flare itself. During one of the transfusions, something went awry and I ended up with a purple arm that remained purple for weeks… maybe months.
• A cool thing about going to a teaching hospital is that there are always opportunities to get involved in research and I never say no. One day during my stay, a clinical research coordinator by the name of Jorie came to visit me. I agreed to her study, and that’s why I’ve been wearing a Fitbit ever since. It’s a study of inflammatory bowel disease patients that looks at bio-feedback stats from the Fitbit and compares them to your health as reported in another app and according to regular lab results. 

Following my hospital stay, Lindsey took me home to the farm to begin my road to recovery, which is another whole blog post that I may or may not write someday. Sleepless nights, leaky ostomy bags, and other fun. In retrospect, adapting to the ostomy life hasn’t been easy, but I’d say I’ve been rocking the hell out of it! And now, nearly six months after my follow-up proctectomy, I’m feeling better than I have in YEARS! Happy one year stoma-versary to me! 

And thus, Halloween will forevermore be associated with the day I was gutted like a Halloween jack-o-lantern. 

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!]

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.