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!

For the first time in probably 6 or 7 years my scopes showed endoscopic remission. It felt like a miracle when I got the news, but not really a celebration. My infusion did what it needed to do, but not without significant cost. It is in a category called Anti-TNF inhibitors and it’s pretty clear now that this bucket of medicines is not playing friends with my body.

I’ve been mentioning for a few posts now some mouth ulcers and skin rashes and how we (Dr. G, Dr N, and I) suspected they were due a lichenoid drug reaction from my infusion. However, we all collectively agreed we needed to just keep going and hold off for scopes in hopes that if I was in remission we could treat through the side effects. I think I could have done that if it was just the skin rash. But, my mouth started to get worse with more pain and loss of taste and my hair started falling out in clumps.

Two weeks ago I met with Dr. N, the dermatologist, and she saw firsthand that continuing this infusion was coming with significant and worsening lichenoid reactions. She took a look in my mouth/throat and was surprised at how gnarly it looked with redness, lesions, and white patches. She questioned why Dr. G or my oral surgeon hadn’t started me with a steroid rinse. She then used a specialized dermascope on my scalp to do a hair analysis and that pretty much sealed the deal. I’ve been diagnosed with lichen mucositis in my mouth and more worrisome, lichen plano pilaris on my scalp. It’s a condition that leads to permanent hair loss. We HOPE we are in the beginning stages and can halt the process, but it’s been two weeks of steroid spray and I’m still losing hair rapidly and it has even affected my eyebrows. We’ve had more discussions this past week and she is promptly adding an oral medication in.

Dr. G got me in to see him very quickly after he heard from Dr. N to make a plan. She told me that since she’s not a GI, it’s not her place to tell him what to do, but that she’d be very descriptive and clear in describing my situation- lol. I think part of him was hoping I’d say I can suck this up, but I know he wasn’t expecting that. In his eyes he finally found something that works and to walk away from that is frustrating. He was really great to talk to though and he told me how happy he was that Dr. N got involved in my case to do so much testing and analysis. He also basically thanked me for sucking this up for so long. He didn’t quite admit though that he looked at me like I had 3 heads when he looked in my mouth 2 months ago. I had been telling him I had a sore throat and redness for weeks and when he looked inside he didn’t see a lot. Dr. N explained in the beginning lichenoid mucositis can be very painful, but very subtle in appearance. So, neither he nor I were wrong. I was in pain, he couldn’t see it. Pretty typical. We laughed about how he should know by now I am very in tune with my symptoms and that I don’t make crap up.

It was a long appointment, but in the end we made a plan. I am back on the Rinvoq which in combination with this infusion led to that nasty pneumonia in January. So, to combat that I am on the antibiotic again for 2 months while the infusion washes out. Then, we hope I’m in deep enough remission that the Rinvoq will take over. We have room to go with the dose. We also talked about other drugs that are in trials. I don’t have any other options now, but the Rinvoq. So, if this doesn’t work I don’t know what we will do. I just can’t think about it. Unfortunately, while in remission from active disease, I still have significant fibrotic damage which is always symptomatic. Liza isn’t lining up well anymore with my stomach wall either. I guess this is not uncommon and thankfully causes pressure and not the pain the left side involves. I did have a partial bowel obstruction a few weeks ago that we think was adhesion related. Thankfully it resolved overnight, but I will be having my yearly MRE (MRI of the small bowel) in 3 weeks to look at everything scopes can’t reach.

This news is pretty devastating to me for a few reasons. Having to stop a medication that is finally working for my Crohn’s and then dealing with potentially irreversible hair loss and no end in sight. The infusion will still be working in my body for about 8 more weeks. It was a very high dose given to me quite frequently. Dr. N has been wonderful and very encouraging and is really on top of adding in what we need to stop the hair loss. She thinks Rinvoq could help with that too. Along with Rinvoq and my infusion, I’m on Otezla for my joints and we are adding in Acitretin to help with the hair loss and rapidity of squamous cells popping up (another issue). There is a worry with my liver with all of this so labs will be very frequent and my liver doctor is now involved. We need to make sure this is safe, so things might need to change soon. My joints are still an issue, but I’d be willing to stop the Otezla if I have to. I may need to pick my battles.

I’m sure none of you are very surprised to hear this news. When I left Dr. G’s appointment he walked me out saying to watch out for a certain side effect from the oral steroid rinse. I said I wasn’t experiencing any of that and he looked at me and smiled and said “Jen, if anything is going to happen, it’s going to happen to you.” THIS!!

I rarely take off my wedding rings, but when I want to, I certainly prefer they don’t get stuck. The whole drug induced lupus suspicion that led me to an IBD specialized rheumatologist and dermatologist thankfully turned out to not be so. However, that did not solve my problems. The rash didn’t magically disappear, the joints are even more swollen, and I got to experience a mouth biopsy on my soft palate done by an oral surgeon due to an explosion of mouth ulcers. Yes, yes, things could always be worse, but No Bueno!

I’ve had so many conversations with doctors over the past few weeks it’s actually ridiculous. But, in the end we really just need to wait until my scopes June 11th. If my medication is working we (or I) need to figure out how to deal with the rashes and possibly mouth sores. It’s still unclear what is causing the sores. My pathology was read by my dermatologist and she is leaning towards also a drug reaction from my infusion. But, given my past history of mouth ulcers with flares, it could be that too. While the rashes are not due to drug induced lupus, they are definitely due to an overall drug reaction from my infusions. There could be a systemic medication, but for now we are going to try a cream.

The joint issue is probably my biggest complaint, but I am so incredibly thankful that I got connected with Dr. K at Anschutz. She really is amazing. I had ultrasounds of my ankles and one of my elbows to get an idea of what was going on. Those showed a decent amount of fluid and inflammation in several joints. This also really involves my hands which really stinks. When we originally discussed my symptoms prior to ultrasounds she prescribed Celebrex. But, given the ultrasound findings she determined we needed to treat this more aggressively over the next year and put me on Otezla. I’m sure you see commercials for that.

Dr. G has continued to be involved in 3 way conversations with these other doctors and keeping me in the loop. When we talked a week or so ago he told me that he presented my case at 2 national conferences. I’m not sure that’s a good thing, but happy to have so many ears and brains listening and figuring out next steps for me.

These darn scopes can’t come soon enough. My gut has felt off the past few weeks, but I was told the Otezla can cause that so I’m going with it! It’s summer and I’ve got a lot of great things going on. No time for a flare!

Eeek, it’s been a while since I’ve written in my blog. Crazy how time flies. You won’t be surprised to know I have continued my track record of constant doctors appointments. I did finally get my infusion approved to be given more frequently only to start developing more rashes and joint pain. This is a bit deja vu of something that happened to me probably 12-15 years ago. I am in the midst of a bunch of testing, but it’s possible my medication is causing drug induced Lupus. But, in true Dr. G style, he’s on it. He basically fired my outside dermatologist who had very inconclusive answers and theories on how my Crohn’s could be treated more effectively. Pretty sure you aren’t a GI dude… Since I am lucky (or unlucky) to be part of the deeply rooted interdisciplinary team at Anschutz I was able to get into an amazing rheumatologist and dermatologist quite quickly. Dr. N who mostly works with oncology patients and rashes that come with chemo was fantastic and took 2 biopsies we are waiting for. Dr. K in rheumatology spent a long time with me and we are waiting to get ultrasounds of a few of my swollen joints. Dr. G took a ton of blood tests. So, no answers yet, but I think we will get there soon. Dr. G made it very clear to these doctors that I am on my last resort of Crohn’s meds now and we need to figure out how to treat “through” whatever is going on without having to stop my medication. Both of these new doctors gave me hope that we can do that. The good news is my gut is feeling pretty decent so we think my med is working. Bad news is these symptoms, along with overall just feeling sick hasn’t been easy. An itchy rash and joint swelling is making me lose my mind- literally.

Now that I got that out of the way, I can share that there have been so many great things going on with the Crohn’s and Colitis Foundation! I have truly enjoyed my Board position and we have spent a lot of time together the past few months. About a month ago I got to give my story in front of patients, care givers, and doctors at the IBD Learning Event in Denver. I also moderated the doctor’s discussion. I formed my “Awesome Ostomie’s” Team for the Take Steps Walk that will be June 1st in Denver. So many of my amazing family members and friends have joined my team and I’m so excited and blessed to have so much support. A few weeks ago we had our Board retreat in Colorado Springs and we all put our heads together to help bring the 2025 Strategic Plan come to life. We all shared so much energy and passion and I’m excited about what’s to come! We’ve also had our first meeting for the Night of Hope Craft for Cure’s Gala that is coming up this November. We are already busy working on auction items so if you have any ideas please let me know!

That’s the past few months in a nutshell! Hopefully I will get some answers soon on what is going on with my skin and joints and am able to feel better. I am on the calendar to have scopes June 11th where we hope and pray this medication is actually keeping my disease under control. It’s never easy to predict what is really happening with my disease as we all know so fingers crossed we are getting there.

I’ve been out of the hospital from my pneumonia infection for about a month. My mind is happy about that, but my skin is not. About a week after I got home I broke out in a horrendous rash that apparently was from the Bactrim antibiotic I was taking. So, I went back to the original antibiotic I used to prevent this pneumonia. We thought that would be the end of the rash since it disappeared for a bit, but about a week ago it returned. Not on my torso as in the first time, but all over my arms, legs and face. So, back to the drawing board to figure this out…

I’ve had two appointments with Dr. G in the past few weeks trying to figure out next steps. The pneumonia and now the rash has thrown a wrench into our plans. Thankfully he feels that I have not lost my chances with my infusion since I had to delay it when in the hospital. I was able to get quickly scheduled and medication delivered and I had an infusion at the end of January. However, he is concerned this new rash could be related to the infusion. I don’t think so because I had 2 infusions in December without a rash, but he says it can be delayed. So, to figure this out we are going to get through the next week or so with the antibiotic and once I’m off of steroids I can stop it. If the rash doesn’t return (it’s getting better over time) then we know it was the antibiotic. If I have my next infusion and it returns, we have a problem.

In addition to this we have decided not to start the Rinvoq. This way we can get off the antibiotic (if I’m on 2 Crohn’s drugs I have to be on it) and will be on a much safer path with treatment given the reoccurrence of pneumonia risk. I’m a bit apprehensive given how sick I was last fall to go down to one treatment, but also ok with it. One treatment would really be nice. If at any time my symptoms worsen we have a very low threshold to go back to the Rinvoq.

As if all of this isn’t enough for me I have also been having quite a few discussions with my liver doctor, Dr. B. If you remember, back in the fall the stricture in my common bile duct grew a bit and my CA 19-9 level ticked up a bit. He thought about doing an ERCP procedure to investigate further, but Dr. G stated I was too sick to do that last fall. ERCP’s are pretty invasive and come with a high chance of complications. We decided if the CA 19-9 level increased again in January we would do the ERCP. Well, it did. I was prepared to do the ERCP and once again Dr. G says I am too sick to do this procedure.I’m not very comfortable waiting given it seemed important we investigate this last fall. Dr. B says the level I’m at is not worrisome yet. Yet!? Can we please just figure this out and take action if appropriate before it becomes worrisome? It took so many messages and finally a conversation with Dr. G that we firmed our plan. Dr. G tried to talk me off the ledge with worry, but he did also say that if it were him, he’d want to know too. He stressed his worry though and my bad luck with things lately. I am not far out of an infection and not back on a treatment plan he feels comfortable with. He just doesn’t want me to get more sick and head into a worse flare with such an invasive procedure. I get that and I appreciate his concern. In the end, the plan agreed upon by all of us is that I will repeat the CA 19-9 test at the end of February and if it has gone up again we will do the ERCP whether I’m sick or not. Let’s be honest, I’m never not sick.

This is all a bit much for me, but I’m taking it day by day and really hoping that things finally settle down a bit. If I could go two weeks without an appointment or test I would be thrilled! The good news is the lungs allowed me to get back on the slopes to ski! The mountains are my happy place where I can clear my head. Good for the soul.

It’s been a minute since I have written. The end of the year was busy, but a ton of fun. We had both kids home, enjoyed some fun holiday outings with friends, soaked up some time in the mountains, and just enjoyed being together. The other great part is that I was feeling pretty good. I started my new infusion on December 2nd and things went pretty smoothly. It’s a bit hard to tell if meds are actually working with steroids in my system so more than likely the steroids are keeping my disease under control, but they are slowly washing out. Once washed out of my body, we know if the Crohn’s medications are taking effect on controlling the Crohn’s.

Fast forward to December 30… I woke up feeling kind of blah, but couldn’t pinpoint what was going on. We had plans to spend New Years in the mountains with friends so we packed up and headed up to our condo in Keystone. On the way up my dermatologist called with the biopsy results of a growth on my scalp I had her get a sample of. Sure enough, another squamous cell cancer (thank you Crohn’s meds). This will require another MOH’s surgery and since it’s on my scalp it going to be a really tough one. Likely hair removal, multiple procedures, etc. I have a consult tomorrow and if all goes well I will need to move forward with this later this spring.

I felt a little better on Dec 31st and was thinking about going out to ski, but then started to get the chills and it was all downhill from there. I spend the next few days mostly cooped up in the condo battling fevers and headaches. I took a Covid test which was negative. I didn’t have a cough and really only had one day of sneezing and blowing my nose, but then those symptoms were gone. We go home on Jan 2 and I was still really sick. The fevers were getting higher so because I’m on so many immunosuppressants, Dr. G wanted me to go to the ER to be evaluated. My PCP had already ordered a viral panel which really only showed I had Rhinovirus- the common cold. The ER stuck with this diagnosis and while they did do a chest x-ray and listened to my lungs (all normal!) they basically gave me Tylenol and said it’s a virus and I’d feel better soon. They did give me an antibiotic for possible sinus infection, but that did nothing.

That weekend got even worse with higher fevers and more severe headaches plus a little bit of a dry cough. Monday morning I messaged Dr. G at 6 am and called the office at 8. He was quick to reply and started making a plan to get me direct admitted rather than going through the ER again. He was mostly concerned about meningitis. I didn’t mention the cough to him because it was just not that frequent. I had shortness of breath, but I attributed that to feeling so terrible with high fevers and headaches.

I was admitted Monday evening to a smaller UCHealth hospital than Anschutz. They were amazing. From the minute I got there there was a plan with the attending Dr to order a head CT, chest CT, head MRI and a bunch of labs. I had the head and chest CT within a few hours. Head was normal, but chest pointed towards some sort of pneumonia. By this time I was on oxygen because my level dropped to around 78-80% which is hypoxic. A lung dr came in pretty quickly to discuss results and plan. They didn’t want to start antibiotics yet because they wanted to ensure they were attacking it the right way, but they did start basic amoxicillin. The plan was if I worsen, it is likely something called PJP Pneumonia and they would start Bactrim. By the next morning I was on Bactrim so I am assuming something with my stats (my oxygen needed to be increased) led them to that decision. Plus it sounds like the CT showed a pretty classic picture of this type. However, they needed to do a Bronchoscopy to get some lung fluid to sample and test to be sure.

Sure enough, I was diagnosed with a Pneumocystic Pneumonia called PJP. It hits the immune compromised. It’s caused by a fungus that’s in the air that we all breathe in, but people like me can’t handle. If you remember, I mentioned that prior to starting my latest infusion I needed to go on an antibiotic to prevent this EXACT type of pneumonia since steroids and 2 Crohn’s meds crush my immune system. Well, apparently I was not immune to the pneumonia. I honestly was very lucky. I went from a clear chest xray to hypoxic in 36 hours and it was still progressing quickly. Had Dr. G not direct admitted me I could have been in much worse shape. I spoke to the lung dr about the seriousness of this type of pneumonia. No doubt some angels (thank you mom and dad) were looking out for me. I actually do have an angel story of something that happened Sunday night that was a sign from them I can tell you if you ask me :-).

I stayed in the hospital until Thursday and have been doing so much better since then. I don’t really feel like I have any pneumonia symptoms anymore. I don’t have a cough and only a little short of breath when I exert myself such as walking uphill. My biggest complaint is that I have to take an antibiotic 3 times a day and am on an obscene amount of steroids again. Both hard on my stomach and sleep. They had me on 80 mg of prednisone the first 5 days. That’s insanity.

The harder part is that I have halted all Crohn’s meds until I get to the other side of this. My last infusion was 4 weeks ago (I was supposed to have one yesterday) and my last Rinvoq was on December 30th when I started fevers. Dr. G and I are meeting next Thursday to make a new plan. I have no idea what this will entail, but my guess is I blew my chances with the infusion, Infliximab. We were still in the ramp up phase where you get infusions at week 0,2 and 6. I missed the 6 week one. I have no idea what the repercussions of stopping Rinvoq will be. Many medications stop working when you stop them and try to start again.

So, needless to say, an incredibly hard and frustrating start to 2025. My gut feels ok now thanks to prednisone, but this is a real worry considering how bad my disease had gotten in the fall. I hope we don’t move backwards from the progress we made since then. Only time will tell.

I’m pretty sure we set a record by meeting our deductible in the first week of January! Thank goodness we have good insurance.

February 1st is going to be the start of my New Year 🙂