Well, I had hoped to be past the TPN assignment by the time I wrote my next post, but no luck. I am weaning, but I still have a bit to go thanks to the never-ending parade of curve balls. It looks like my PICC line (not my idea of a fashion accesosry) and I will be attending the Craft for Cures Gala I’m co-chairing on Oct. 24th. Good thing I got a new dress to cover the arms.

Before I get into that, here’s the scoop on my appointment with Dr. G a few weeks ago, where we went over the capsule results, an overwhelming plan, and what happens down the road if surgery is needed. It was a tough appointment, to say the least. I knew the capsule endoscopy didn’t look great, but I had no idea how severe my disease had gotten. It’s probably the worst flare I’ve been in, so much so that in hindsight, both Dr. G and I wish my surgeon had simply taken this section of bowel out. There are deep, large ulcers with significant inflammation, and the camera got stuck for a few hours. That means we aren’t sure we can use this test again, which is a huge problem because it’s the only way to see this area. And since my CT, MRI, and labs haven’t shown active disease, tracking how I’m doing is going to be a bit of a guessing game based on my symptoms.

The plan is in motion, and I’m grateful for it. I have two rounds of Tremfya in me and started my Entyvio infusions last Friday. Once I’ve had two infusions, I MIGHT be able to start weaning steroids, and once those dip a little lower, I’ll add a third Crohn’s med. That’s more than I’ve ever been on, but we need to get really aggressive. Surgery down the road is likely, and all of us want to avoid it as long as possible. It’s also pretty apparent that Dr. G is unhappy with how my surgeon handled things. When the time comes, we’re leaving UCHealth for an outside surgeon he really respects, who is known for complex cases. That’s a lot to swallow, and I’m trying my best to focus on the now. Easier said than done some days, but my GI therapist is helping me a ton.

Now, the TPN. I hate it. Really, I do. I understand how important it is, but being hooked up at night to a noisy pump makes for a terrible roommate, especially on top of not sleeping from the steroids. The good news is that I’m eating better by mouth, and last week I got the green light to go to TPN every other day. It took convincing four different people to get Dr. G to agree. He’s so worried. I’m not sure I did my job getting enough calories in on the off days this past week, but I’m trying. Eating a lot still isn’t easy, and my stomach has shrunk, so I fill up quickly.

I see Dr. G in nine days. He’ll lay eyes on me and likely decide what to do about the TPN. I’m not holding my breath if things don’t turn around in the next week. I’m so much better, but it’s far from perfect and many days not great. I’m probably not to the level Dr. G wants, and getting as much nutrition as possible is key to getting stronger and healing.

I had been feeling a bit more confident until a few days ago, when I developed an opening at my suture line. It’s strange to have this happen eight weeks after surgery. I see wound care tomorrow and hope to God this isn’t a surgeon issue. My nutritionist and Dr. G’s nurse both think nutrition and steroids are playing a big part, since steroids inhibit healing and malabsorption certainly doesn’t help. They’ll add extra protein to my TPN bags, so my bags are officially getting an upgrade, too.

Steroids continue to be the devil drug. My sleep is nonexistent, but the bags under my eyes are thriving. I look terrible, and while I try hard to cover them up, it doesn’t fool anyone. My heart also races with palpitations all the time. I know steroids can do that, but I’ve never experienced it before. It’s a strange feeling to go from a resting heart rate in the 40s to the 80s or 90s, like I’ve just sprinted a lap while sitting on the couch. My nutritionist wonders if my PICC line slipped, so we’ve requested a chest x-ray. I’m hopeful Dr. G will agree so I can make sure everything is okay with my heart.

Despite all the obstacles, annoyances, and honestly so much discouragement, I’m really looking forward to the Gala. My team and I have poured our hearts and souls into this event to raise money for the Rocky Mountain Chapter. The room will be full of people who matter to me: my amazing siblings and their spouses, my aunt and uncle, friends, many doctors and health care workers from UCHealth who know my story, and over 250 people connected to other patients. It’s going to be wonderful, and I’m so happy to have this in my life. Working with these awesome people toward a common goal is truly therapy for me. The timing is perfect, but also so not perfect. I hope a lot of paddles get raised and a lot of money gets spent to make life a little better for all of us. Open those wallets, friends!

In the meantime, I’ll enjoy my night off from TPN and head to wound care tomorrow. I’ll also get a chest x-ray, iron labs, and an antibody test to make sure I’m not building resistance to the Entyvio, and keep working on getting in the calories I need. I’m really trying. I just don’t think I’ll convince the team to let me loose, and I can’t say I disagree. That’s hard to admit, but I really don’t want to screw this up. Thank you, as always, for following along and for all the love and encouragement. It means more than you know.

I’m wide awake again during the night thanks to the devil prednisone, but thrilled to report a major upgrade in real estate. Instead of a rock-hard hospital bed, I’m in the corner of my comfy couch with my golden retriever Blue snoring right by my side. The TPN got figured out by insurance quickly and I got the green light from GI to break out.

In case you need a PICC line 101, it’s a thin, flexible tube that goes into a vein in my arm and threads up near my heart. It’s used to feed me. Not glamorous, but it’s doing the job my gut can’t right now. In case you’re wondering why the heck I have this line, check out my last blog.

I still don’t have the final reading of my capsule study. Dr. G has been working through eight hours of footage in pieces, which I assume is the medical equivalent of binge-watching a show you didn’t choose. But I did find out some of what he’s found so far. There’s more disease and ulceration near my surgery site (we knew that one was coming), and, more interestingly, a blood clot at the suture area from the strictureplasty. I read a few actual articles, not just Dr. Google, and clots do seem to be a rare complication of jejunal strictureplasty. While I don’t know if this was the case for me, they can be symptomatic, causing pain if they partially block things from moving through. So I’m curious to hear Dr. G’s take. Leave it to me to land the rare complication again. Shocker!

Now, back to the going-home part. I don’t think I’ve ever been so excited to break free from a hospital. By the end, with TPN nutrition on board and pain tolerable with just Tylenol, I wasn’t really feeling like a sick person anymore. I still feel like I’m in recovery mode and know not to push it, but I’m hopeful I’m heading the right direction. Tuesday I see Dr. G in person to go over the study, the plan, how I’m doing, and everything it takes to get my life back. The first question I might ask is when on earth I can start weaning 60 mg of prednisone?! That is so much.

The TPN setup at home didn’t exactly start smooth with a late-night delivery forced nursing to cancel, so I had to skip night one. Not exactly a good way to start. I got going Friday and I’m two cycles in. I won’t pretend this is easy. I hate it and want to be done. Craig has the harder job, honestly- thirty minutes of prepping the formula, getting the line ready, sanitizing, flushing, priming, negotiating with a pump that beeps, before a twelve-hour feed even starts, then another whole process to take it off. Finding thirteen spare hours in a day, especially once I’m feeling better and want to actually leave the house, is going to be a real trick. Not much choice in the matter, though. I know how important this is.

While important, it doesn’t stop me from being anxious to be done with it. I’d love an actual finish line. Maybe a weight, a number of weeks, a secret hand shake, something… They’ve got my calorie load set high right now, even though I can eat so much better by mouth than I could. The nutritionist called Friday, said she knows it’s hard, and that my job right now is simply to eat as much as I possibly can. It’s a tough assignment, but I’m doing ok. I got the sense I’ll be on this a while, which is a bummer. My guess is they’ll start dropping the calorie load soon and see if I can hold my own weight up on food alone. I’ve gained some back already, and yes, I am thrilled watching the number on the scale go up. Maybe I’ll make my case to Dr. G on Tuesday. But I know him well enough by now, once he’s got me committed to something, he does not budge.

I’m trying to keep a good attitude. It’s not always easy. This disease is my worst nightmare. But I’m out walking in the cooler weather, doing things around the house, and I even made it to the mall yesterday to find a PICC-line-and-bag-friendly dress for my niece’s wedding, which I think is going to be perfect. I’m so excited to see my kids and family for the first wedding on our side of the family! I wouldn’t miss this for the world so we’ll figure the 13 hours I need for TPN one way or another. Flying with all of it won’t even be an issue either, just a bit of extra luggage and a few more TSA questions and pat-downs which I am well used to having an ostomy bag….

It’s night 7.

I’m lying in a hospital bed 3 weeks after I spent five days here in August for surgery and four more in July before that. I’ve been thinking about how long it’s been since I’ve written anything. Not because there hasn’t been anything to say, but because it was too overwhelming to think about writing at all. But, the point of my blog 5 years ago was to share this journey in the hopes that someday, someone would read it and find the strength to keep on keepin’ on. This is my longest blog yet and I encourage you to read it all. At this point I am thinking of hanging up my work and writing a book because the suspense of my Crohn’s journey is insane. I mean who doesn’t love a good drama?! Here goes…

Back in June I mentioned I was dealing with obstruction-type symptoms we were trying to figure out. Cross-sectional imaging has never been reliable for me. The CT scans don’t show what’s actually happening in my body, a pattern that kept repeating all summer. But an intestinal ultrasound found a stricture, narrowed down to about 5mm. For scale, that’s about the width of a coffee stirrer. Dr. G and a new surgeon looked at it together and made the call that as much as my body hates surgery, it was inevitable. With so many fun family events and the Craft for Cures Gala I’m co-chair of I said I’d do it in November. My body had other plans.

In July I flew to DC for the Advocacy Champions program with the Crohn’s & Colitis Foundation where I sat across from lawmakers making the case for policies that affect people like me. It was the kind of thing I’d never done before and I’m glad I did it. I also don’t know how I did it. I was in pain the entire trip. The kind where you’re doing math in your head about how many more minutes you have to hold still before you can move. Somehow after dry-heaving in my Uber and airport and literally not moving an inch on a 3.5 hour flight, I got myself home. I was admitted to the hospital the next morning. While my labs were out of whack, the CT scan that day was inaccurate as well.

I made the decision to move surgery up to August 21st to fix the stricture, clean up adhesions, and change the angle of my stoma. The weeks before that were rough. We had a trip to Minnesota for my niece’s shower, which I was supposed to help throw and mostly couldn’t; I spent more of that trip in bed than upright. Not long after, I made the call to sit out moving Ryan back to school. That one was harder than it sounds.

Going into surgery on the 21st, the one piece of good news I had was that my Crohn’s appeared to be in remission. I should have known better. The surgeon fixed what he went in to fix, but he also found a few feet of active disease nobody had seen coming, not on any scan and not in any blood test. I wasn’t expecting to see Dr. G that day. That afternoon he was in my room anyway, telling me the news, looking like he felt worse about it than I did. We were back at the drawing board, trying to figure out what came next.

If the worst part had been a setback for a new plan and new meds I’d have taken it and moved on. But, it wasn’t.

I went home after five days. Still in a lot of surgery pain, still in a lot of stoma pain, but tolerating food okay, which felt like a win. The obstruction pain was gone and still is. A few days in, the skin around my stoma started separating because some sutures had popped. This wasn’t good news, but again, I took it and tried to move on. My surgeon’s first suggestion was to just cover it with my bag and “I’m sure it hurts, but it’ll be fine, you don’t need wound/ostomy care” I pushed until he agreed I needed actual wound care, met with an ostomy nurse, and got the tools to put it on the road to recovery. It’s a process, but it’s so much better now. My surgeon is an idiot. I could have ended up with a serious infection and no idea what to do about it. On that same call he told me that I “experience pain more than most and that my anxiety is contributing to that pain.” What an asshole. Sadly, firing the old surgeon was a terrible idea. This guy is worse. “You’re right doc, I have a major skin separation, 8 days out from strictureplasty, adhesion removal, basically an open cavity of wounds, am in a Crohn’s flare, and have a 10 inch scar. It’s all my anxiety that is causing the pain”. I wish I would have actually said that. Instead, after he told me to follow up in 2 weeks I said “good bye” and hung up on him. Then I burst into tears.

Now for the doozy. No, that still wasn’t it.

About a week home, I started having pain no matter what I ate or drank. I work with a nutritionist at the Crohn’s & Colitis Center who is incredible and has Crohn’s herself so totally gets it. We tried tweak after tweak and nothing worked. Dr. G wanted to admit me and start TPN, nutrition through a PICC line, but I asked him for more time. I went back to a liquid diet, but four or five days in, I couldn’t do that anymore either. I had lost a lot of weight, was weak and severely malnourished.

Last Wednesday I called Dr. G’s nurse and told her I couldn’t take it anymore and that it was time to go to the hospital. I was direct admitted and a plan was already waiting for me. Here I am, almost a week later, in room 910 at Anschutz. They placed a PICC line, hung my nutrition, and started IV steroids with the thought being that the oral ones weren’t actually getting absorbed.

On Friday I had a push enteroscopy, a scope that goes deeper into the small bowel than a regular one can reach. Sure enough, more active disease and real bowel damage, all in areas that have flared before. My Crohn’s flare went into overdrive. The scope still couldn’t reach as far as the surgeon had seen during surgery, so after a long conversation with Dr. G on Saturday, we decided to do a capsule endoscopy. It’s an eight-hour study where you swallow a pill-sized camera and it photographs its way through your small intestine. It’s thousands of images, to look at everything. First I had to swallow a dissolvable practice pill, just to prove a real one would make it through.

Preliminary results when Dr. G’s partner came in at 7 pm tonight shows bleeding and ulceration, possibly at the site of the strictureplasty. Dr. G is doing a final read and I should know more in the morning. An eight-hour study is a lot of footage, so I’ll give him a break for taking his time reading my guts. What I want to hear tomorrow is that this is all the disease being its usual self, and not a surgery complication. Given my luck lately, I’m not taking anything for granted.

As for the TPN, I’m getting hooked back up within the hour for a 16-hour cycle. I’m desperate to break out of here, but this is a process. I may need to stay through Friday just to prove I can tolerate a 12-hour cycle, so that once I’m home I can run it overnight only. Thinking about the logistics of all of it is its own kind of exhausting: PICC line training and cleaning, pump training, at-home nursing, the supplies, the bags of nutrition, tracking calories through the central line against whatever I manage to eat on my own. This part is thankfully going a bit better and I have not needed a narcotic in 4 days. But, my brain is overwhelmed. I’m angry. I’m sad. All of it, at once, most of the time.

Off to bed now on 60 mg of prednisone, a drug that’s had me awake since 1:30 this morning. Not that it matters as I’ll be woken up in an hour for meds and the TPN hookup, again at 11 to adjust the rate, midnight for vitals, 4am for vitals, 5am for labs, 6am for meds. Deep breaths. That’s the whole plan right now. Deep breaths. Keep on keepin’ on.

Oh, and that surgeon… I was supposed to get a call for a 2 week follow up from that ridiculous call where he was on his cell phone in scrubs about to start a surgery. No call. No follow up. Apparently he doesn’t choose to give a crap and continue to follow his patients through to the end. Not that I want to see him again, but that seems a bit of a risky choice on his part.

It’s been a while since I’ve written, and I’ve truly missed it. Those of you who have followed along for a while know that life rarely stays quiet for long around here. I wish I could say this update is all sunshine and good news, but as always, it’s a little bit of both.

Up until mid-May, things were mostly status quo. Not ideal, given the daily medications and the lifelong reality of scar tissue, but I had reached a baseline physically and mentally and had come to terms with my new norm. At my last appointments with Dr. G and my GI psychologist, we agreed to check in again in June and hoped things would still be in an okay spot. The mouth sores were improving, and I was counting on an uneventful trip across the pond.

We were thrilled to finally be on our way to Italy to see Ryan as he finished his study abroad semester in Florence. Getting to be there for that last stretch with him, after months of following along from afar, was everything. We were also so looking forward to Portugal, and I want to preface this by saying we had an amazing time for most of the trip. We logged thousands of steps each day touring Florence, enjoyed a rainy day in Tuscan wine country, and made our way to Portugal where we fell in love with Lisbon and especially northern Portugal, Porto, and the Douro Valley.

But there are about 5 days in the middle of this trip I’d like a re-do and a refund on.

I came armed with extra ostomy supplies after my nightmare trip to Europe last fall, where leaks left me completely unprepared. I felt ready this time. What I was not ready for was an abscess, a derailed itinerary, and an ER visit in Portugal. Yes, this is how my life rolls.

About four days in, I started developing intense pain at my old surgery site where everything was removed. It’s not the most comfortable thing to talk about, but it is what it is. I have what’s called a “Barbie butt” closure, and the pain escalated quickly. By the morning we were supposed to take a train to a small coastal Italian town, I told Craig I was worried there wouldn’t be a large hospital nearby with English-speaking staff. I was fairly certain I needed to be seen. We were originally headed to Lisbon three days later, but instead we cut our losses on the Airbnb, bought new plane tickets, and flew to Lisbon early to be near a hospital.

Sure enough, I needed it. Thankfully the abscess drained on its own and I didn’t need surgery, but the experience was something else. The hospital was efficient but quirky in ways that would take too long to explain. The English was decent, but the treatment plan for an abscess in an immunocompromised Crohn’s patient was, let’s say, unsettling. Thirty minutes of IV pain medication, a lot of nodding, some Portuguese exchanges between the ER doctor and the colorectal surgeon, and I was sent on my way without an antibiotic. I contacted Dr. G’s office immediately and started one as soon as I was home. A second abscess episode followed a few days later but didn’t require another ER visit, just a lot of deep breaths through the pain.

Despite all of that, the rest of the trip was truly wonderful. I’m so grateful I got to experience northern Portugal. The long flight home, sitting on my very sore butt, was rough, but thank goodness for travel pillows. Back home, I had urgent follow-ups with GI, colorectal surgery, and an MRI, but no surgery was needed. These abscesses can sometimes progress into severe fistulas requiring complicated procedures and I feel lucky to have dodged that.

Unfortunately, while the abscess itself has mostly resolved, I’ve been dealing with significant pain that’s likely related to scar tissue. The past 5 to 6 days have been pretty awful, with episodes that feel like partial small bowel obstructions. I’m working through it with Dr. G’s team and hoping for some answers soon. A CT Enterography yesterday showed several dilated small bowel loops and I’m still waiting to understand what that means. I won’t pretend I’m not a little worried that this may be fibrosis related and not treatable with medication, but I can’t know that yet.

In the meantime, I’m doing my best to get through each day, and I’m deeply grateful for the doctors and nurses who are in my corner. It’s going to take considerably more mental strength I’ve been using to live this way, and I’m still working on wrapping my head around that.

What I do know is that I couldn’t be more thankful to serve on the Board of the Crohn’s and Colitis Foundation, to be surrounded by people who truly get what this disease is like. We have our Colorado Take Steps walk this weekend, and next weekend I’m zipping off to Salt Lake City to help with that walk alongside some of my favorite staff members.

There are days I wonder whether being this involved makes the reality harder to escape. But I truly cannot imagine doing this life without knowing there’s a Foundation out there and a community that understands.

The past month has felt like one long stretch of dealing with whatever comes next physically, emotionally, and mentally. There has been very little space between anything. One issue followed quickly by another, managing one set of symptoms only to have new ones appear. Holding it together most of the time, then quietly unraveling later when no one is watching.

I met with my new, awesome dermatologist, who prescribed a steroid gel for the mouth sores. It helps, and I’m grateful for that. But I really have to rely on it. When I try to take a break, the sores came back. Initially there were discussions of another biopsy, but she is very convinced these sores are Crohn’s and if I can just get my gut under control my mouth should get much better. She did do a swab to ensure no infection and that was negative. I should not use this gel long term or more than 2 weeks out of the month so there are days I’m not treating the “less painful” spots and focusing on others that are deep and really inflamed to buy us time.

At the same time, my disease is not going in the right direction. The burning pain has been getting worse and since my mouth is worse I am fairly certain that the inflammation seen in my scopes has progressed. Burning is my telltale sign of a flare. It always has been. I’m adding a targeted steroid next week (not prednisone thankfully!) and will continue Vancomycin. Unfortunately, the Vanco slows motility for me, which isn’t ideal with the amount of scar tissue I already have, so now Miralax has become part of the routine too. I am not convinced Vanco is the answer for me but, we need to give it a chance. I will follow up with Dr. G in a few weeks and we will go from there.

This is what living with chronic disease often looks like. It is a life of constant adjusting, problem solving, and recalibrating.

And then there are the moments no one sees.

I was recently honored to attend the National Volunteer Leadership Summit for the Crohn’s and Colitis Foundation, surrounded by people who understand this life more than most. It was 2 days of wonderful talks about the successes of the Foundation, excitement about future research and prevention, team building, networking, and a whole lot of hope for all of us. And still, I had two leaks in the middle of all of this. One came with stoma retraction (Liza being pulled under my abdominal wall- not good!), which was especially unsettling. I stood there in my hotel room afterward just trying to pull myself together. Liza popped back, I attached a new bag, shed a few tears, and uttered a few cuss words. These moments feel incredibly vulnerable. But, I managed to put on my cocktail dress and head downstairs to the party and awards ceremony wanting to have a good time.

Emotionally, it’s been a heavy stretch. I’ve had two very tearful sessions with my GI psychologist this month. There’s grief in realizing some parts of this such as the scar tissue, aren’t temporary problems to solve, but lifelong symptoms to manage. There’s sadness in knowing my remission was short-lived and that I’m back to figuring things out again. And there’s the loss in feeling like a piece of myself is gone. I’m incredibly grateful for her support, listening ear, voice, and box of kleenex nearby.

Lately I have also found myself sitting alone in my family room, car, or lying in bed trying to process how tired I feel. Not just physically, but in a way that is really hard to explain. It’s a deeper kind of exhaustion that comes from managing so much for so long. I’ve had to just sit quietly with it, because I don’t know how to fix it. This is ok according to my therapist. I’m not ready to fix how I handle anything right now. We need to let the grief ride for a while. I’ve had to ask Craig for more space because often I just want to be alone. I have not been looking forward as much to doing things with friends as I normally am. I hope all of this passes soon.

At the same time, this week I also received some very sad news about a friend. It has quietly shifted my perspective in ways I’m still thinking about. As much as I know I need to make space for grief, I also feel I can’t sit here too long. This moment has reminded me how much I want to find my grit and resilience again, even on the hard days.

In the meantime, it feels relentless. One thing after another. No real pause between dealing with one thing after another.

But, as I sat to write this blog, I was reminded about something I heard last week at the Crohn’s Foundation Volunteer Leadership Summit, where Erik Weihenmayer spoke. He’s the first blind person to summit Mount Everest and later kayaked the Grand Canyon. This honestly feels impossible to comprehend.

One thing he said stayed with me:

“Rest if we must, but we cannot quit.”

That line has stuck with me. Because lately, resting feels necessary. But quitting has never been an option for me. I have too much to be here for and so many blessings to be thankful for. I also feel so strongly about advocating for others with IBD ( hence the Advocacy award received at the conference that I personally played a role in!) and to continue to be the strength others need.

Chronic illness rarely teaches strength in big ways. Usually, it quietly teaches us resilience. I’m still here showing up and learning again, like I have a million times over the past several years, how to live fully inside this part of my life I never asked for.

I can have my moment right now, but soon I hope to shift back to the reason I even started writing this blog in the first place. As I said on the homepage “Please follow my blog as I share my story in hopes that I will give others the strength to get through their own difficult journeys. Life is tough, but we only get one so why not live it the best way we can?”

6 months. Only 6 months is how long my remission lasted. I guess I shouldn’t be surprised considering my journey, but that’s a bit ridiculous.

Before I dive into that news, in my effort to put some positivity into this post, I will list some good things.

1. When you have a doctor for 12 years and an appointment like I had Tuesday, things get done immediately. The awesome GI pharmacist quickly got through hoops to get a med for me, I had an ostomy nurse evaluate me within 48 hours, and Dr. G’s nurse has been working behind the scenes getting some other annoying things taken care of- such as a soft catheter(more on that later).
2. When you have a million MOH’s surgeries and are on your doctors family Christmas card list, a simple message to her gets you an appointment with a top dermatologist in the area in 3 days vs 3 months.
3. I don’t really know what the 3rd thing is, but in my opinion lists should have at least 3 items.

I wrote in my last post about the mouth ulcers I’ve been dealing with, and unfortunately they’ve only gotten worse. After a failed attempt with an ENT so useless that Dr. G literally fired him, I ended up having scopes and we are hopefully on the road to treatment. The ENT gave me something that didn’t work- or as Dr. G put it, “a homeopathic joke.” He also said he couldn’t biopsy because it was too complicated and decided to blame everything on my oral medication. It is not my medication. I’ve been down the drug-reaction road before, and that mess was everywhere in my mouth, scalp and skin. This is not that. This is a few very specific angry spots in my mouth.

I’ll come back to the mouth in a minute, but first: the scopes. There was some good news. My disease in the duodenum is still in remission, which is something. Unfortunately, as the scope moved further into the upper small bowel, that good news ended. There was inflammation and ulceration, officially ending my very brief remission. Biopsies confirmed moderate activity and erosion.

He also scoped through my stoma, Liza. There isn’t active disease there, but it’s not exactly a good situation either. There’s significant scar tissue, and when he put the scope in, he had to take a very sharp angle just to see anything. His said my intestine is basically kinked and stuck to my abdominal wall. This would explain the pain and why, when things back up and can’t make that turn, pressure builds until my bag gives up and leaks.

After procedures you just get a report, so I was glad I had a follow-up a few days later to actually talk things through. In that appointment, Dr. G also fired my dermatologist. This is the second time he’s done that in a year, which feels like some kind of record. He said he has no idea why Anschutz can’t keep decent dermatologists, so he’s been sending patients outside the system. Interestingly, the dermatologist he sent me to works out of my MOH’s surgeon’s office which my connection to allowed for that fast appointment time.

While we’re both fairly convinced my mouth sores are Crohn’s-related, he wants to rule out Oral Lichen Planus, another autoimmune condition that can overlap with Crohn’s. Apparently he has a patient with it. I’ll see what the dermatologist thinks on Monday. In the meantime, he prescribed a new oral medication that we’re hoping will calm things down. I’ve reached the point where I need lidocaine just to eat, which is fun in the sense that food then tastes like absolutely nothing.

As for the bowel Crohn’s, we need to move quickly. I technically have two options. One is doubling my current medication, which isn’t FDA-approved at that dose. Some of his colleagues are doing it successfully, but there’s been an increase in PJP pneumonia. Since I had that last year, which was terrifying, that option is off the table. He doesn’t want to risk it.

So instead, we’re trying Vancomycin. It’s typically used in pediatric IBD-PSC patients. PSC is my liver disease, and this treatment is usually for people with severe colon disease, which I obviously don’t have anymore. He’s never tried it in someone without a colon, but our toolbox is getting pretty empty, so here we are. The goal is to calm the gut, help the mouth, and stop the weight loss. He was clearly concerned when he examined me and doesn’t want to lose any more ground.

The stoma situation, unfortunately, is never going to improve. He had hoped he might see narrowing that he could open up with the scope, but that wasn’t the case. My output just has a very difficult corner to turn, and unless I want surgery, management is the only option. He asked his nurse to track down a soft catheter for me in case I obstruct. She confirmed today that a straight catheter would never work as it wouldn’t be flexible enough. I did meet with an ostomy nurse, though, and she gave me some helpful tips on preventing leaks, so at least I feel a little more supported there.

I am incredibly lucky to have Dr. G’s nurse in my corner. The last time he had someone like her was probably eight years ago. She’s kind, relentless, and somehow managed to get Ryan all the medications he needed for his study-abroad semester in Italy—which honestly tells you everything you need to know. She’s been just as amazing to me, and I really hope she sticks around.

My only real complain aside from the remission ending and my mouth being on fire is that if I had gotten in front of Dr. G a month earlier, my mouth might not be in such bad shape. He was working with the information he had from me, ENT, and derm, and I don’t think the full picture clicked until he actually saw me. Going forward, we’re shortening the gap between appointments. His nurse told me they always make room for me, and I know they do, but it really matters that he lays eyes on me regularly.

A New Year is upon us and I can only hope it’s even a bit better than the last one. Overall 2025 wasn’t so bad to me and thankfully ended with some good news on top of the bad.

I had my liver ERCP in December and while my last blog post spoke of the heartache, worry, and sadness that went along with the never ending bad news, in the end it turned out much better than expected. Don’t get me wrong, the procedure itself was horrendous taking most of a week to recover from, but the results were very reassuring. The stricture being followed in my common bile duct every 6 months is not as bad as it seems. There was no significant narrowing, no reason to add a stent and certainly no reason to think it was malignant. This shows that imaging does not always paint a clear picture. The real story comes from physical viewing by a scope from a doctor. Sure, I still have PSC and I still need to be watched every 6 months as the ducts inside the liver have changed a bit, but I went from a pretty bad situation to a quite good one in the matter of a few hours.

As for other things related to my skin and mouth, it’s been a bit tough. I’ve now had 5 squamous cell cancers treated in a short amount of time. The large amounts of immunosuppressive medications are a big cause for these cancers. My skin just can’t recover and cancer pops up everywhere. The 2 on my chin and one on my clavicle needed less cutting, but the arm one required several stitches. The most painful one I think is on my calf where I received 3 injections of a chemo drug and the way it responds is a very painful bruise type lesion. I am constantly at the dermatologist (I have 3 of them!) and am such a frequent flyer at my MOH’s surgeon’s office I am now on her family Christmas card list with her home address.

My mouth has been a painful mess too. The drug reaction I had last spring apparently can take months and even years to recover from. Once the immune response is disrupted, triggers can send it into a flare again. The mouth ulcers are much worse than before requiring another biopsy which confirmed what is happening. I have been given a very strong mouth rinse and for a few weeks relied heavily on lidocaine rinses to numb my mouth before eating- including in restaurants. It’s all about 50% better and I have needed less of the numbing rinse, but will be on the other one for quite some time. I’m not sure what the trigger was, but it has been a frustrating ride. Especially because this time of year comes with a lot of good food!

Liza has been a bit off too, sprouting more leaks than I’d like to have. The leak is always in the same location, causing the adhesive to lift and a mess to form. I am 90% certain this is related to my intestine being pulled due to scar tissue that causes more pressure in that area leading to inconsistent emptying. Kinda hard to explain what I’m talking about it, but I get it, Dr. G discovered it, and a fix would likely require a surgery. No thank you. I will figure out how to deal with it for now, but could certainly do without middle of the night explosions requiring sheet changes as well as leaks at Nordstrom when you are with your 30+ year bestie here from Australia. That happened to me yesterday. I stuffed a whole bunch of tissue in there, tightened my belt, and hoped for the best. Thankfully I made it home in time to clean up before the mess got too out of control.

My last bit of news is that I am anxiously waiting for my next set of scopes on January 28th that will determine if the Rinvoq is doing it’s job. Minus a few gnarly stomach aches lately, I still feel pretty good overall. Not as good as I was, but I don’t anticipate Dr. G will find major active disease. Maybe a little, but hopefully nothing that will require more than a dose change.

A year ago right now I was almost heading into the hospital with fungal pneumonia which allowed us to reach our deductible by January 6th. This is certainly a better start to that! Minus, the fact we have nearly no snow at the ski resorts, I’ll take the good news and run!

My parents were truly the most incredible parents and grandparents anyone could ask for. Not a day passes when I don’t think of them and how much I miss them. Some days it’s a brief photo flashback, a duck or a coin on the ground (my signs), or just a fun memory that pops in my head. Other days the grief is overwhelming. As though I just lost them yesterday. Today has been one of those days. But, it’s also one of those days that I truly believe they are here with me and that as mad as I can get at God for the most recent news I’ve received, the messages are being sent. I am not a very religious person, but today something really strange happened. I will clarify what I am talking about at the end of my blog, but first I’ll share the news.

My last blog post I chatted all about the trials and tribulations of Liza’s bag leaks. The few before that were about a drug reaction, finally getting into remission, etc. I mentioned how October would be a month of several previously scheduled tests, but not for one second did I think one of those test would actually amount to anything. Other than having elevated liver enzymes which have been that way a long time, I wasn’t really thinking that my PSC (liver disease) would begin to rear it’s ugly head.

I had my routine every-six-month MRCP (liver MRI) to check the dominant common bile duct stricture I have. A year ago it had changed a bit, enough to be concerning, but the doctors didn’t want to put me through an invasive test because I was in such a bad Crohn’s flare. My April scan looked stable, so I assumed last year was just a blip and October would be uneventful.

My scan was on a Friday and normally I get results within a few hours. Instead I had to stew all weekend and then Monday morning the result came through with an immediate message from my liver doctor. The stricture has changed quite a lot and is now causing dilation of the smaller ducts within my liver. When changes like this happen, patients need to have an ERCP procedure where they go in with a scope and take brushings for a biopsy to rule out malignancy. Bile duct cancer is extremely hard to diagnose on imaging and can be a complication of PSC.

Now, I am not worried at all that this is cancer. While my liver enzymes are elevated, many other labs are very normal. I’m not jaundice or otherwise sick. The assumption is this is “just” progression of my PSC, but the ERCP is absolutely required to make sure. What I am worried about is the procedure itself. To get to the bile ducts the doctor has to go through the duodenum (upper small bowel). My upper small bowel is very scarred and deformed from Crohn’s. So, the ERCP requires that a certain endoscopist does the procedure. They may have to put a stent in my duodenum to open it up for access to the bile ducts. I’m supposedly going to be with the best, but the fear I have is very real. My Crohn’s is finally in remission and I do not want anyone going in and messing around and causing it to relapse. On top of a potential duodenal stent and biopsies needed, I most likely will need a stent placed in my bile duct to restore normal flow of bile. If so, that stent will require removal, and another ERCP, within a month. I am at risk of pancreatitis – a common complication which will be really hard in my state. Lastly general anesthesia is required for this 1.5-2 hour procedure.

So, once again, I very briefly had good news. I have been really wanting to speak with the GI Endoscopist who is doing this procedure, but his schedule is proving to be too busy to do so. I met with his PA and while lovely, she couldn’t really speak to my personal situation, which is a rare one. Most ERCP’s are done with a fairly normal looking GI tract in place- certainly not a deformed and strictured duodenum.

Thank goodness for the GI Psychologist who I have been seeing for quite some time. I am so lucky that the Crohn’s and Colitis Clinic has one there that is dedicated to patients. I truly couldn’t get through this without her. She is amazing. A few weeks ago the tears flowed a little bit in her office just a few days after I got the news. And then today at my appointment, I just couldn’t control myself. I was sobbing. I am tired of this. I am tired of doctors and appointments and of bad news. I am overwhelmed and sad. I am scared and frustrated. Today I lost hope.

But then something strange happened. I was struggling all day and finally forced myself to get out of the house. It didn’t help much; my mind kept circling back to my appointment with Amitha and the things she suggested to help me cope. I am angry at God for not giving me a break, at the Endoscopist for having such a busy schedule preventing us from chatting, and at how much appointments are taking away from things I want to do. I am sad that my parents aren’t here. But underneath all of that, I am terrified.

I was standing in a ski shop waiting to be helped when I grabbed my phone to do my daily Wordle. Without thinking, I typed in the word “MAKER.” That was it! I got it on the first try. We all know God is often called “the Maker.”

I don’t believe everything happens for a reason, but I do believe in meaning. And today, that strange little moment felt like a message. Maybe it was from my parents. Maybe it was from God. Maybe it was just a coincidence. I don’t know what the outcome will be, and right now I don’t even know what the message was meant to be. I’m not ready to get my hope back or believe everything will be okay.
But I do have a small, steady glimpse that someone is looking out for me. And for now, that’s enough.

Imagine trying to drink a cup of coffee while riding a rollercoaster. Now imagine trying to handle an ostomy bag leak in a bathroom train car going 100 mph around curves. Yep, the “never a dull moment” theme followed me all the way to Europe. I guess I’ll start here and then backtrack to the good stuff.

About 3 days left in our trip it was time for another bag change which I do a few times a week. I didn’t sense any problems until after breakfast. Leaks happen once in a blue moon so I just put another bag on and continued to pack. Just as we were closing our suitcases to head to the Prague train station I felt another leak coming. I was slightly panicked because I knew I didn’t have a ton of supplies left after nearly 2 weeks away. But, I attached a new bag and we went on our way.

All seemed great until about an hour into our ride from Prague to Munich and I looked down and saw a mini explosion happening. To make things worse, there was another passenger sitting in our little “first class” (more like 8th class, circa 1956) compartment. I grabbed whatever supplies I could and rushed to the bathroom, bouncing around like a pinball in a disgusting loo, with supplies stuffed in my bra as I tried to control the leak. That was proving to be impossible, but somehow, miraculously I had some extra tape strips in my kit from when I got my ostomy in 2021. Phew.

Needless to say I starved myself for the next 5 hours because what goes in, must come out. I’m not sure I’ve ever felt so gross, but there I was somewhere in the Czech Republic and Germany. I passed the time reaching out to various suppliers and even a German ostomy support group to figure out how I could get my hands on some more bags. I watched some Netflix, texted with friends, and tried not to move an inch as to not disrupt the tape job.

Thankfully, when we got to Munich our hotel was right across the street. We got all checked in and I managed to utter several cuss words while also praying (is that allowed?) that the last bag standing would do it’s job until we got back to Denver. I added as much tape as I could and kept my fingers crossed. We walked into a few medical supply stores and I messaged with the manufacturer, but there was nothing available for me. I Google-mapped the nearest hospital and decided that would be Plan Z. Surely a hospital would have ostomy bags, right?

Nothing like going to Oktoberfest with your intestine basically taped inside a zip lock bag to hold everything you eat and drink! It It took some of the thunder out of hoisting a massive beer stein, but what could I do? Oktoberfest is truly a once in a lifetime experience for me so we made our way through several beer tents, had a few sips with some locals, watched people stand on tables to dance and saw more than our fair share of drunks. Honestly, an ostomy bag leak might have been the least embarrassing thing happening there.

The night before we flew home I went on a hunt for medical supply tape and disposable wash cloths in case I had issues over the deep blue sea. I packed extra clothes and continued to hope and pray we’d make it- which we did. I can laugh now, but I definitely was not then!

I honestly have no idea what the issue was. Possibly faulty bags, but most likely just another chapter of a 4 year long saga of “rare complications in the life of Jen”. But despite the chaos, we had an incredible 25th Anniversary trip to Germany, Austria, and the Czech Republic. We hiked through Black Forest towns and around turquoise lakes of Austria, did a soggy but spectacular bike-and-wine tour near Vienna, stayed in amazing hotels, took early morning walking tours without crowds, ate delicious food, drank too much wine, and soaked up every bit of adventure. Maybe a little too much.

Next time, I’ll bring triple the supplies. And a roll of duct tape—just in case.

I don’t know what happened to summer! I haven’t written in a while and that’s definitely not because things are calm in my world and tummy. Time just got the best of me. I always go into this part of the year with some trepidation. Since 2021 I have experienced my toughest times in August-October. But, while things aren’t perfect I feel like I will not be needing to make any trips to the ER or start that devilish steroid drug. Yes, I am knocking on wood.

My gut update is that I “think” I am still in remission despite having to stop my infusion due to a drug reaction. I’ve been on a pretty low dose of oral Rinvoq since June. I saw Dr. G last week and he would like to increase it before I do flare, but in the same breath we are dealing with liver toxicity. Increasing it on a hunch that I’ll likely need more soon isn’t the best approach until we know for sure. Since active upper small bowel disease is often easy to miss by going on symptoms alone- not to mention after this many years you tend to suck things up a LOT, he will scope in January to most accurately evaluate how it’s working.

My biggest issue is the incredible amount of nausea I’m dealing with due to a stomach that does not empty well. This has been hard to deal with since nothing can really be done. Zofran helps, but too much causes slow motility and with so much fibrosis in my gut that’s not good either. It’s a vicious cycle. So, I keep popping the pills and heavily rely on ginger chews and distractions.

Now that I got that out of the way I can tell you about my busy involvement in the Crohn’s and Colitis Foundation! I have taken on the Advocacy Lead role for our region of Colorado, Wyoming, and Utah. This involves speaking out for change in legislature both at a state and federal level (budget cuts, better access to care, etc) as well as just creating awareness for those of us that suffer.

I also had the honor to be a patient speaker at Spyre Therapeutics all hands meeting in Boulder last week. I personally met with their Chief Medical Officer, CEO, and two Senior VP’s of Clinical Development as part of the meeting. They are a biotech company and are developing some next generation antibody treatments for Crohn’s and Colitis. They are in phase 2 clinical trials and wanted to hear from a patient. I sat in front of a room of 100 employees from all over the country including several doctors and shared my story. We talked a lot about insurance issues, being involved in a clinical trial, medication and surgery complications, combination therapy, etc… It was such a neat experience to be able to talk firsthand to a company who is literally developing the next type of treatment I need. It was perfect timing coming off of Dr. G’s appointment when I asked him what’s next for me. He said “Jen, we get creative. I’ll put my head together with my colleagues and may have to make things up as we go because you are at the end of your rope.” This is hard to hear, but at the same time I am so hopeful for companies like Spyre and Merck (who is closer to that treatment). The VP of Spyre, a GI doctor, told me that in the 25 years she’s been practicing she has never heard of such a complicated and tough journey. I could have sat up in front of this company for hours with all the questions they had.

Other than that, the Night of Hope gala planning is in full force and as the Auction Chair I’ve been busy getting auction items and getting the Board and Committee to motivate as well. It’s going to be such a fun night on November 8th with a Roaring 20’s theme and a Craft Cocktail Competition. I can’t wait! If you or anyone you know has a small business and wants to get their name in front of 300 people by donating an item, let me know! Or, any connections you have for awesome auction items would be gladly accepted too :-).

Lastly, Liza is about to take flight over the Atlantic. My bag (and her bag) is packed. She requires a lot! We are heading to Europe for 2 weeks and I am banking on feeling great, no explosions, no security issues, no bumps in the air when emptying, and menus that I can read so I order what’s right for me! I need to prepare a notecard that says “I have an Ostomy for Crohn’s Disease” in German and Czech to be able to hand to the security at the airports and train stations. I do not want to be taken back to a room and basically be strip searched like I was in Australia again!

October will come with more liver tests, Dexa scan (long term steroids are killing my bones), labs, and continuous conversations with Dr. G. Hopefully nothing new to report other than how our trip went which is going to be amazing for both Liza and I!