Tuesday, September 24, 2024

šŸ’© MY 10th UC ANNIVERSARY šŸŽ‰

šŸ—“ļø September 24th, 2014ā€¦ after many months of my innards just not being right šŸ’© and several weeks in and out of doctorā€™s offices šŸ„ and emergency rooms and laying around bed ridden, wishing I would just die so I could feel better (sad but true), I was finally admitted to the hospital on Monday September 22, 2014. On Tuesday morning, an upper endoscopy šŸ”­ was conducted. On Wednesday morning the 24th, a colonoscopy was conducted and I was diagnosed with ulcerative colitis. 


The diagnosis would be followed by years of šŸ‘©ā€āš•ļø medical maladiesā€¦ chronic fatigue, general malaise, brain fog, šŸ’Š prednisone, colonoscopies, lab work šŸ”¬, blood transfusions, prednisone, infusion drugs (Remicade, Entyvio), at-home injections šŸ’‰ (Humira), Xeljanz, a clinical drug trial, medical leaves, the list could go on. 


Then, five years ago in late September, my body reached a breaking point that led to a colectomy šŸ”Ŗ and creation of an ileostomy on October 31, 2019. Yes, I was indeed gutted like a jack-o-lantern šŸŽƒ on Halloween. (I.e., I donā€™t have a large intestine, my small intestine exits my abdomen into an ostomy bag.) 


There was another surgery šŸ©¹ (proctectomy) in May 2020 and without the colon my health finally began to improve. But I would still battle symptoms such as severe fatigue šŸ„±, skin afflictions under the adhesive of my ostomy bag, and other random symptoms. 


Now, since my career change a year and a half ago, Iā€™m healthier than Iā€™ve been in a decade. šŸ¤© Iā€™m the poster child for what mental and emotional stress can do to your physical health. I believe my UC was inevitable, but I think the stress put it all on a fast-forward ā©ļø crash course. 


Anyhow, happy UC anniversary šŸ„‚ to me!


P.S. - I always intended to share more stories than I have here on my blog, but at least I have a few articles to remind me of my health journey. Some have fun titles like ā€œDiaper-clad Purgatoryā€ and ā€œPieces of my Insidesā€ but when I read those articles now, the hell I was in seems kind of unbelievable and gets me all emotional šŸ„². 

Monday, March 8, 2021

Health Update

Greetings friends and acquaintances. I havenā€™t shared much about my health lately. So I thought Iā€™d post an update. (To recap the key points: šŸ—“ Diagnosed with ulcerative colitis on 9/24/14, failed a bunch of big name meds šŸ’Š, underwent a colectomy with permanent ileostomy šŸ”Ŗ on 10/31/19, underwent a proctectomy on 5/6/20.)


šŸ˜ƒ The good news: While Iā€™ve been dealing with my ulcerative colitis flares, surgeries, and such in the past several years, Iā€™ve concurrently struggled with my weight, due in part (in my opinion) to one particular medication. In 2019, while on Xeljanz, I peaked at my highest weight ever. šŸ“ˆ Well hereā€™s the good news so far for 2021: Iā€™m down 15 pounds so far this year and Iā€™m down a total of 30 since my all-time high in 2019! šŸ“‰ Now if I could just get some energy so I could get back into the gym with more regularity. šŸƒā€ā™€ļø


šŸ¤¬ The not-so-good news: In recent months, when people have asked me how Iā€™m doing, I say ā€œbetter than Iā€™ve been in years!ā€ Well, in the last month or two I started feeling that I was lying whenever I said that. šŸ˜“ I also have come to the realization that the frequent tiredness Iā€™ve been experiencing is what I call ā€œmedical fatigueā€ and not laziness. šŸ›‹ Health-related fatigue isnā€™t something that you understand unless youā€™ve experienced itā€¦ sleeping doesnā€™t help, energy drinks donā€™t help, a shower seems like an insurmountable feat, you fall asleep at your desk without warning, and you just canā€™t muster the give-a-damn to do much. šŸ›Œ 


Finally accepting that something wasnā€™t right, I made an appointment recently with my local primary care physician. šŸ‘Øā€āš•ļø Heā€™s a great doctor - he gets me and my humor, he knows that I know my body, and heā€™s super-thorough! Itā€™s great to have such an excellent doctor who believes in you when you go in with seemingly no ā€œtangibleā€ symptoms. You kind of feel like a hypochondriac sometimes, but Dr. M. knows better and ordered a wide array of lab work. Well, the results confirm my suspicion that something isnā€™t right with my immune system, so itā€™s good to know I wasnā€™t imagining things. For now, Iā€™m starting a short round of prednisone šŸ’Š to help the symptoms in the short term and will be seeing a rheumatologist at the University of Chicago as soon as possible. šŸ„

Saturday, October 31, 2020

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 youā€™ve been in such bad shape, youā€™ve wished you would die to feel better, surgery isnā€™t so worrisome, itā€™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 (theyā€™re neighbors) and they headed to Valparaiso to pick me up. (Lindsey later told me that the look on my dadā€™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 Iā€™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 quicklyā€¦ that morning it was the longest drive of my life. I recall trying to pass out with the hopes that Iā€™d wake up and weā€™d be there, but then I couldnā€™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 couldnā€™t get up, I couldnā€™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 canā€™t see a personā€™s challenges on the outside, they donā€™t exist. (Ninety-nine percent of the time, when my mom attends medical appointment with me, those who donā€™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 itā€™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 wouldā€™ve humanely euthanized me long ago (yeah, our family has sick humor). I had mentioned that to my surgeon, so Iā€™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 couldnā€™t get up, I couldnā€™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 itā€™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 couldnā€™t make it to the nearby restroom under my own power, so back into the wheelchair I went. I hadnā€™t had liquids in many many hours, and peeing proved impossible. Eventually, since they are not allowed to take oneā€™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 Iā€™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. 


Iā€™m sure time didnā€™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 didnā€™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 wasnā€™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 couldnā€™t sit up (it didnā€™t register then, but when they slice through your abdominal muscles, moving isnā€™t easyā€¦ especially that soon after surgery). Since I could not sit up or move my abdomen, I couldnā€™t help in any way. And I donā€™t like not being in control. I donā€™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 Iā€™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 wasnā€™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 donā€™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 ā€œickā€ could either exit out my bottom or out my belly, an emergency exit of sorts. Turns out we didnā€™t need a bag on there, it didnā€™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 weeksā€¦ 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 thatā€™s why Iā€™ve been wearing a Fitbit ever since. Itā€™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 hasnā€™t been easy, but Iā€™d say Iā€™ve been rocking the hell out of it! And now, nearly six months after my follow-up proctectomy, Iā€™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. 

Sunday, February 16, 2020

Health Update


For more than a month šŸ“† Iā€™ve been dealing with a wound-like sore adjacent to my stoma. It hurts, itā€™s gross-looking, itā€™s increased in size, šŸ“ itā€™s morphed and changed and I donā€™t know if itā€™s better or worse, but Iā€™ve been seeing my ostomy nurse šŸ‘©ā€āš•ļø regularly to monitor it. (Ostomy nurses are highly specialized and awesome practitioners, and I donā€™t know how, as an ā€œostomateā€, Iā€™d function without them.)
šŸ”¶
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 šŸ’© bag to your belly. An appliance system that you usually leave in place for a few days, but Iā€™m currently changing no less frequently than every two days šŸ“†  so that I can monitor the situation. (And because the situation of a dampish wound causes adhesive failure, which causes leakage of poo šŸ’© under the barrier, which results in more frequent changesā€¦ hopefully before the poo reaches the outer edge of the adhesive! šŸ§»)
šŸ”¶
At Fridayā€™s visit, my nurse made the decision that I probably have peristomal pyoderma gangrenosum šŸ”„, an ulcerous infection that definitely looks as gross at it sounds like it would, what with a root word of gangrene šŸ¤¢ in there. If you really want to see, Iā€™ve been monitoring it with pictures every other day. šŸ“ø The condition could be mirroring the ulceration that currently is happening in whatā€™s left of my rectum and anus (ya never cure ulcerative colitis, even when you lose the colonā€¦ though when I lose the rectum and anus šŸ”Ŗ on April Foolsā€™ Day, it should help. No kiddinā€™.). The game plan for now involves Triamcinolone Acetonide, a dental ointment for canker sores (since itā€™s made for healing in dampish situations) and 40 mg of prednisone šŸ’Š for at least the next three weeks.
šŸ”¶
If youā€™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 šŸ”‹ productivity and night sweats šŸ˜“. Not too shabby, compared to how it treats some people. Iā€™m looking forward to the extra energy. Gotta find that silver lining ā›…ļø. 
šŸ”¶
The pic shows most of the things involved in an appliance change. Yeah, it takes a little time ā±, but Iā€™m getting more efficient every time. (Itā€™s been nearly four months since the colectomy. Four months filled with lots of learning.)
šŸ”¶


Thursday, January 9, 2020

New Year's Health Update


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

Today I had a follow-up appointment with my colorectal surgeon, šŸ‘Øā€āš•ļø Dr. Umanskiy (who is awesome, by the way). My remaining wounds are looking healthy and healing well. We also set another surgery dateā€¦ April 1st! šŸ”Ŗ One surgery on Halloween, another on April Fools Day!

The next surgery will remove whatā€™s left inside me of my rectum and anus and weā€™ll take my butt out of commission. Really, it will be sewed up, which is commonly referred to as ā€œBarbie Buttā€ šŸ‘™šŸ‘  (which cracks me up! (I said crack!)). My gastrointestinal tract will end with my small intestine and my ileostomy*, which means #PooBag4Life! And Iā€™m fine with that. I had prepared myself šŸ§  for that possibility. 

Since my insides were in such bad shape šŸ„“ (Doc again recapped how horribly disintegrated my colon was), and my ulcerative colitis** always affected the lowest portion of my GI tract the most, Iā€™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 whatā€™s left of my lower GI tract so it canā€™t get inflamed šŸ”„ or infected and Iā€™ll embrace the ostomy life!

Since Iā€™m feeling better being back in a routine, Iā€™m ready to get back to my fitness šŸ’Ŗ 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 āš°ļø and out of shape, plus they had to slice open my abdomenā€¦healing was/is rough. (Dr. U. hopes to not need to slice open my abdomen next time thanks to robotics! šŸ¤–))

So there you have it. Thatā€™s where I am, thatā€™s where Iā€™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 wonā€™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.

Wednesday, October 30, 2019

Countdown to Colectomy šŸ”Ŗ: TOMORROW!

Countdown to Colectomy šŸ”Ŗ: TOMORROW!

At 11:00 a.m. CST  today ā±, an intense checklist itinerary āœ… was put into action in preparation for tomorrowā€™s surgery šŸ”Ŗ, 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. ā€œGatorlaxā€ cocktail šŸ¹ā€¦ a delightful combo of Gatorade Glacier Cherry and Miralax! Iā€™ll get the opportunity to enjoy eight such 8-ounce cocktails throughout the rest of the afternoon/evening šŸŽ‰. Oh, and there are a few doses of Neomycin and Flagyl (antibiotics) šŸ’Š throughout the day too to help ensure a healthy surgery.

Iā€™ll report back later todayā€¦ I should be doing some laundry and packing my hospital bag, but I think Iā€™ll take a nap until my next cocktail alarm goes off.

Monday, October 28, 2019

Countdown to Colectomy: 3 Days

Countdown to Colectomy šŸ”Ŗ: 3 DAYS! Todayā€™s random thoughts šŸ’­:

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

Speaking of Halloween and šŸ‘» 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 tooā€¦ sometimes my butt will think Iā€™ll have to go šŸ’© 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 Iā€™ve been keeping a steady stream of šŸ’Š 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!

Iā€™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 šŸ”Ŗ ā€œguttinā€™ a pumpkinā€ and ā€œpumpkin gutsā€ and Ellie kept holleringā€¦ ā€œewwww gutsā€. Thatā€™s when I realized that Iā€™d be gutted just like a pumpkin on Halloween. šŸŽƒ LOL. (And then I may have shown her the mark on my belly where theyā€™ll open me up and pull my guts out. LOL.)

Wednesday night Iā€™ll clear my colon out one last time before I get rid of the faulty olā€™ plumbingā€¦ Dulcolax, Gatorade, Miralax šŸ¹ ā€¦ some of you know the drill! But Iā€™ll never have to clean my colon out again!

I think Iā€™m ready. I havenā€™t freaked out too much yet. And Iā€™ve made a packing list šŸŽ’ of some things to keep me comfortable during my hospital stayā€¦ like my own pillow šŸ›Œ. Hospital pillows are the worst. So I think once my colon is empty and my bag is packed, Iā€™ll be ready!

Stay tuned for the next installment of Countdown to Colectomy šŸ”Ŗ.