Did you know that the word “shit show” is actually in the Merriam-Webster dictionary? It is a noun described as: “something (such as an event or a situation) that is chaotic, contentious, or unpleasant to an excessive or absurd degree.” Yes, and yes. This is my current life situation in a nutshell. Who knew my liver biopsy would land me into a cardiology appointment next week?

Remember that liver biopsy I needed to get because my liver enzymes have been high? The one my hepatologist ordered to see if one of my Crohn’s medications was causing a drug induced liver injury? Or possibly the raised enzymes was due to my autoimmune liver disease (PSC) or an overlap of another autoimmune liver issue? Of course this couldn’t be an easy answer could it?

My enzymes are not elevated due to either of these scenarios. Instead there seems to be a blood flow problem in my liver called venous outflow obstruction. Blood is backing up in my liver causing damage. This was a very unexpected pathology finding to myself, my liver doctor (Dr B), and Dr. G.

The first step after this news was an abdominal ultrasound to see if the large hepatic and portal veins of my liver were blocked. That came back clear minus a few hemangiomas that will be investigated fully at my liver MRI I will be getting next week. The next important step was an echocardiogram to see if there is a blood flow problem at the heart level. That did not come back normal.

There were some abnormalities on my echocardiogram that showed a thickened pericardium (sack that holds your heart), a dilated inferior vena cava, a variation of flow into the heart, and some other thickened valves, mild pressure increases, etc. I really do not understand much of this at all. I don’t know if these are significant/worrisome findings, normal with age, normal with autoimmune diseases or what? I will find out more next Tuesday when I see the cardiologist Dr. B referred me to. This doctor has already seen the echo and suspects I will need a cardiac MRI, but I need to see him first. All I know for sure is that blood is not leaving my liver in a way it should and we need to figure this out before it is damaged too much.

I am extremely grateful for Dr. B’s quick action to get this testing going and to get me into a cardiologist so soon. I am going to ignore the fact that this cardiologist is the Director of Heart Failure and Transplant and hope he is just Dr. B’s golf buddy doing him a favor to see me next week. I am also extremely grateful for Dr. G. While this is not a GI issue at all, he called me last Friday to explain the echo results in layman’s terms and gave me some comfort that I was in good hands. He said that a team and more tests would figure this out and get me on a path to reversing the damaging process happening to my liver. Dr. B was out of town so I think he was stepping in as to not leave me hanging with results over the weekend.

When I did finally speak with Dr. B he told me it is not unreasonable that my symptoms of upper abdominal fullness (kinda like a stuffy nose) and so much exhaustion with exercise is due to blood not flowing properly. I thought it was Crohn’s related. It still might be as I do have all of that upper bowel disease, but this makes more sense. I mentioned in a past blog these feelings as well as how running is not enjoyable to me lately. It is pure will.

I can laugh a bit at the absurdity of this situation, but in all honesty, of course I’m worried. This is really heavy. GI stuff is one thing. Liver and heart blood flow problems is a whole other level of scariness. The rapidness of these appointments which normally would take weeks and months with these doctors is somewhat alarming as well. Regardless of the outcome of next week’s appointment though, I am really tired of the constant testing, waiting on results, unknown’s, and nerves. I just always have a pit in my stomach and it’s been hard to sleep and concentrate. My emotional release of exercise is harder for me so my mind goes crazy. I did see Dr. G a few weeks ago and we talked through how hard this is. How in his words “I can’t seem to catch a break and this must be so wearing”. He has offered to put in a consult to speak with a psychologist and I’m working towards that appointment.

As for the “known” liver disease I have, PSC, I have my MRCP next Thursday that will evaluate the small strictures as well as the larger stricture in the common bile duct. And, while there was concern I might have to stop Rinvoq due to heart issues, we are ok for now. No clots were seen in the echo which is what Rinvoq can cause. We will continue with daily Rinvoq, Entyvio infusions every 8 weeks, and in May I will have a small bowel MRI, and 2 scopes to see how things are truly going for my Crohn’s. That seems to be the least of my worries these days. Sigh…

Hopefully all of this heart/liver stuff can be solved with a few medications or something really easy. Or, maybe my Crohn’s is still really flared up causing abnormalities elsewhere and this is all just going to resolve on it’s own. Who knows. Next Tuesday can’t come soon enough though.

On a positive note, Dr. G has gotten me out of ever having to do jury duty! I got called the the federal courts to be on call for the next 5 weeks down in Denver. Yeah, that is not going to work with all of these appointments. I didn’t ask him for full dismissal, just a letter asking for postponement, but I think he too thinks, enough is enough, and wrote a letter to dismiss me for my lifetime! A federal case could be juicy and interesting, but I need to focus on this shit show for now.

First, before I forget, I want to thank all of you who have been reading my blogs and writing your well wishes to me through the comments portion. I am embarrassed to say that I am not a WordPress expert and somehow missed a whole bunch of comments over the past 6 months. It doesn’t seem to notify me properly, but I now know where to look so keep them coming. They do help! My goal is to take a class on WordPress/website building for some possible future endeavor’s, but for now, please accept my apologies. I am very grateful for all of you that take time out of your day to read about my journey. A journey, that truthfully, I have zero idea where it’s headed…

This post will be short. I don’t have a lot of pep in my step lately to think very positively so bear with me. Things have been a bit tough navigating through the various adulting stages of life right now. Not to mention blow after blow of bad news and worry.

I think the Rinvoq and Entyvio infusions definitely helped me get back on track to feeling better- most of the time. I’m noticing a bit more symptoms as the 8 week mark approached for my infusion so I suppose there is a chance in the future Dr. G will increase that to every 4-6 weeks. Scopes in May will likely determine the infusion plan. I have a follow up with Dr. G next Tuesday, but I think it might be pushed out until we figure out yet another bump in my already too bumpy road.

Unfortunately, I had to schedule a liver biopsy for March 5th. My liver enzymes have gone up even more to about 3 times what they should be. My biggest worry is that we are going to have to stop the Rinvoq. My liver dr, Dr. B, wants to get to the bottom of this. Due to my lab results and my fibroscan showing advanced liver fibrosis in December, it is time to figure out what is going on. He is suspicious for either a drug induced liver injury or some other sort of immune mediated liver injury. He does not think my lab value trend is due to my PSC. So, I don’t know what to wish for. Do I want the news to be that we have to stop a medication that is likely helping my Crohn’s or do I want to have something else wrong with my liver? PSC is quite enough in my opinion.

I will still be getting a liver MRI in April to make sure the stricture in my common bile duct is stable. This stricture is what he thinks is advancing PSC, but the lab trend I’m following is a separate issue. I literally don’t even know what to think anymore. I am so fucking tired of this. More worry. More sadness. Enough.

A friend recently shared a post with me written by Adam Grant that REALLY spoke to me:

“In hard times, urging people to stay positive doesn’t boost their resilience. It denies their reality.

People in pain don’t need good vibes only. They need a hand to stay steady through all the vibrations.

Strength doesn’t come from forced smiles. It comes from feeling supported. “

I couldn’t say it any better.

Today marks the one-year anniversary of losing my colon. I will probably never completely get comfortable with this new life, but as the months go by, it becomes a bit easier to have a bag. Or, should I say, normal? I pretty much do all the things you all do. While it can get messy and I do need to have a plan in place to be able to empty at all times of the day, I have accepted that this is how it’s going to be. You can’t really “hold it in” when you have a bag, just as others hold their bladders, but thankfully I have not had any major explosions or leaks in quite a while. I will definitely never get used to looking at a red raw intestine poking out of my belly; it’s rather gruesome or surreal, which is maybe a better word, but it is what it is. I’ve had a pretty great year of adventure and activity to show that I am not letting this hold me back.

However, as I look back at the last year and re-read a post I wrote 24 hours before surgery, I am finding myself having a bit of the “I told you so” mentality. Exactly what I wrote did happen. Below is what I wrote one year ago.

“Crohn’s is far from over for me. In fact, the majority of it will still live in my body even after I have my colon taken out. You have a lot more small bowel than you do colon, and I have Crohn’s in a large chunk of the small bowel that I have left. I will still be treated aggressively with infusions and oral medications. I will still have scopes, and I will always be waiting for what’s next. This surgery on Monday could put my small bowel Crohn’s into a big flare like it did in 2021.”

My Crohn’s did come back with a vengeance. I wrote several blogs on that, which I hope you have taken the time to read. While feeling much better, I am still fighting this Crohn’s battle. On top of this my liver is fighting a battle of it’s own. This is something I definitely did not predict and has been very overwhelming and heart wrenching for me to handle. The next few months will be come with many lab tests, scopes, imaging, quite possibly a liver biopsy, and a whole lot of worry.

Don’t get me wrong, even with these 2 terrible blows, 2023 had a lot of great things as well that FAR surpasses this bit of shitty news. We traveled a ton, bought a condo, got a puppy, sent Ryan of to U of A where he is having a blast, dropped Emily for her senior year (gulp) at Baylor where she too is kicking butt, spent a ton of time together over the holiday’s skiing and hanging out, and so much more! I am heading into 2024 with a bit more worry than I’d like, but I’m leaving 2023 with a ton of great memories and a whole list of things I learned.

What I learned…

Doctors are not experts in everything, and some choose to ignore you (my surgeon to be precise). You need to be your own advocate. While we don’t want to over-react and be hypochondriacs, we know our bodies best. Speak up. Call the after hours doctors, ask questions, bug the nurses. This is their job and if something doesn’t feel right it probably isn’t.

In the same breath, actually speak up. I should have spoken up about some of my symptoms a bit earlier last summer/fall as my small intestine started to act up, but I was jus so sick of it. I can’t do that anymore. Don’t try to be a hero.

Those people who give you unsolicited advice, such as what you should eat or how you should think, are just wanting you to feel better too. Try to keep the eye rolls to a minimum. They’re just trying to help.

People get sick of hearing your story. Believe me, I’m the most sick of it! Your blog will be less read, and people will drop off, but that’s ok. You aren’t doing this for them. You are doing this for your mental health and mostly to show others who have chronic illness that a life full of adventure can still exist if you just give it a try.

There are still plenty of Facebooker’s out there who will never turn the corner to Instagram so update those people too.

There are still adults out there who think the large intestine, the large bowel, and the colon are three separate organs. Some think that since I only had one of those, my colon, removed, I can still sit on the toilet and go like a normal person. Or, if I say my Crohn’s is in my small bowel, they ask how my small intestine is doing. I’m not kidding. I must be naive to think that basic human anatomy is something people know as adults, but I am never going to stop laughing about this.

It’s okay to sit on the couch with a good friend and just sob your eyes out. It’s ok to scream, throw things, and feel how you feel. Be real. Let others see you for who you really are. You are allowed to have a full day in pjs without showering or brushing your hair like I did yesterday. Just change your underwear and brush your teeth please.

It’s okay to rest, take naps, say no to things or cancel plans for no reason at all. I don’t care if you cancel on me because it’s too windy outside. In fact, you might be my best friend if you do.

I am learning to accept that I am not the energetic runner that I once was. Yes, I still run a few days a week, but they are slow runs full of fatigue and nine times out of ten I am pushing myself out the door. I don’t enjoy it like I used to, but boy do I feel so much better when I do it. I hope to get back to enjoying it very soon. Keep pushing yourself to do the things you don’t always love to do if they help your mind.

We don’t have to be grateful for everything, but finding one thing to be grateful for every day will make the bad days better.

2024 is a new year, and who knows what will come my way? I plan to take it one day at a time, and hopefully, no matter what is thrown at me, I will continue to handle it with grace, grit, gratitude, and guts. I’m sure there will be plenty of bad days, but for this year especially, I hope the good days far surpass the bad ones. Chin up, let’s do this!

Today is my last day on 5 mg of prednisone. The crash and burn this med gives me is very real and has been very tough. Withdrawal is brutal giving me horrible fatigue and headaches. I say it’s my last day, but there is a possibility I will split my 10 mg tablet further than just in half and do 2.5 mg for a week. That’s tomorrow’s problem.

The good news is I think the Rinvoq is helping. I have had a lot less pain and while it’s still catches me by surprise sometimes, I have noticed improvement. The true test (as I’ve said a million times before with other medications) will be what happens when the steroids are completely washed out of me. That will take a few months. I had another telehealth with Dr. G last week and the plan is to stay on the max dose of Rinvoq for 8 more weeks and then taper it. I don’t think he knows or has decided what the final dose will be. We are just taking it one step at a time and remaining cautiously optimistic. Cautious because my labs are still showing I’m in a Crohn’s flare. I am also incredibly nauseous which isn’t a great sign, but could be the medications.

The bad news is that while trying to get my small intestine back on track my liver has apparently taken more of a dive. These are unrelated, maybe more coincidental, but this is how my life rolls. I’ve been hitten by a mack truck of bad news yet once again. I already wrote about my PSC (liver disease) and how back in October a stricture in the common bile duct was discovered. Something that was new and very alarming to both myself and my liver doctor, Dr. B. We had a telehealth and made a plan of future imaging to watch this closely. During that appointment he ordered a fibroscan which I had last week.

A fibroscan is a test that measures the fibrosis/scarring of your liver. It had been 5-6 years since I had one which was done at the time I was diagnosed with PSC. I really need to stop telling myself before tests that everything will be fine. I had the test and within 30 minutes heard from Dr. B. The results are not good. Five years ago I barely had any fibrosis and today I am sitting at stage 3 which is considered advanced scarring – meaning severe liver damage. This is one step before cirrhosis.

We exchanged multiple messages back and forth. He is quite surprised with the results given that my liver enzymes are only mildly elevated. But, as we know, my labs never quite match up with what is going on in my body. Some of my Crohn’s labs are matching up with my Crohn’s right now, but not one of the big ones, which remains normal. And, they were not matching up at all when Dr. G scoped me.

This news is really upsetting. It seems that my PSC is advancing rapidly. The damage to my liver is likely the smaller ducts within the liver getting strictured which is blocking blood flow and causing fibrosis. I did wonder the validity of the fibroscan, but Dr. B told me it was a good study. The test is done 10 times on the same spot of the liver and then an average measurement of fibrosis is given. It could be exaggerated due to liver inflammation, but given the amount of prednisone I have been on Dr. B does not think my liver is inflamed. The other upsetting piece is that while Crohn’s has many treatment options, PSC has none. Only things that can help with symptoms. There are some clinical trials happening, but I am told given the severity of my Crohn’s I would not qualify. Thankfully, I have no symptoms. Symptoms apparently occur in more acute cholangitis attacks and when you get to the cirrhosis phase.

We will proceed with the plan of doing another MRCP of my liver in April. My liver labs will be followed closely along with a CA-119 test which is a cancer antigen test. That has always been very normal. Nobody is worried about cancer, but a number that the hepatology doc’s like to follow. The biggest worry is the complications of PSC that will coincide with the fibrosis, ultimately leading to transplant. If my liver numbers continue to elevate I will have a liver biopsy. But, for now, there is nothing to do but wait on more tests. Honestly, I almost wish I never had the fibroscan and didn’t have to hold onto the knowledge of what is going on since nothing can be done. In the meantime, I will hold onto the hope that quite possibly the fibroscan is wrong and if it isn’t wrong that it will be years, even decades, until I enter stage 4. I will also remain grateful that my two doctors are the Director of the Crohn’s and Colitis Center and the Director of Transplant Hepatology at the very reputable University of Colorado Hospital. I am truly lucky to have them.

Lastly, Dr. G and Dr. B have had a few conversations recently about my Crohn’s and PSC and the safety of the medications I am on. The consensus is we are ok to proceed as it is very important that my Crohn’s get under control. If my liver numbers go crazy we would have to stop the Rinvoq, but for now we stick with it. Dr. G told me that while he has seen this type of rapid progression with PSC and we can’t take the news lightly, he has been very worried about my Crohn’s and assured me we are doing the right thing. He is just as bummed and shocked about the liver news as I am. Fingers crossed my Dec 22 labs don’t show anything worse.

Well, 7 weeks of no official Crohn’s meds has caught up with me. I get it, but this is not fun. For safety reasons we had to let the old meds wash out of me for a bit. Add to that, a few weeks of unexpected lab abnormalities plus an infection, and here we are… Oh, not to mention that apparently my body has decided to be a bit resistant to prednisone.

Last Wednesday I got a call from Dr. G’s nurse that he wanted to get on a telehealth with me ASAP. I had a feeling he was brewing up a different plan. Sure enough, we chatted on Thursday and he suggested changing course. I did not fight him one bit. He was probably surprised, because normally I am full of questions and doubts. If the original plan was one that would work quickly I’d push him more, but Entyvio takes 3-6 months to work and the Azathioprine takes 2-3 months. I truly don’t have the time to wait for both symptomatic reasons and the damage that is continuing for my small intestine. I was having a rough morning on our call so that certainly helped my lack of resistance, but brought out some empathy on his part. He could tell I was struggling.

All of those TV commercials you all see on Prime Time for Entyvio and Rinvoq will be my new life. Not only did I start Entyvio infusions (as of today), I am also going on Rinvoq. This is a lot. But, Rinvoq is supposed to work within 2 weeks. Dr. G is hoping to use the Rinvoq to get my Crohn’s under control enough for the Entyvio to take hold. He’s hoping we can stop the Rinvoq at some point, but we will just have to see. It’s also going to be a bit of a fight with insurance.

Being on 2 biologic medications, plus still being on prednisone (25 mg) is a bit scary to me. I did question Dr. G on that- ensuring it’s safety. I have been on 2 biologic medications before (Stelara and Entyvio) so it should be ok, but Rinvoq is a different category so of course it’s nervewracking. We will watch labs closely and knowing I can get in touch with him quickly helps.

Thankfully, Dr. G was able to get me a 28 day supply of Rinvoq as samples while we fight the insurance battle. That’s pretty incredible considering what these medications cost. Sticker price is $12K a month for Rinvoq and over $20K for Entyvio. What a racket. Yay for great insurance and co-pay assistance programs! Anyhow, I got the samples right away and will start the Rinvoq tomorrow. I could have started Friday, but we had a busy/fun weekend and I just didn’t want to risk unknown side effects. I didn’t want to start today because I had my infusion.

This has all been so tough for me, but I understand why we are doing this. I am thankful for Dr. G and how on top of this he is. Not many dr’s out there have 4-5 chats/appts with their patients in a matter of weeks. We have another one on the books in a few weeks. Hopefully not sooner.

For now, I will hunker down on the couch tonight and recover from the Entyvio infusion. They always make me a bit tired and out of it which is going to be interesting since the prednisone itself makes me feel like I’m on another planet. I’m just glad there were no issues. The at home nurse was fantastic and it’s so nice to be able to sit in my cozy coffee corner with an IV instead of hopping in the car. TBD on what tomorrow holds for me post infusion and starting Rinvoq, but if we can get this tummy pain better I will be so grateful. Let’s GOOOO….!

My productivity level has been extremely low this past week. I am literally going through what feels like detox. This is too fast of a prednisone taper for me. Time to put the brakes on. I was able to do 35 mg for a few days and then dropped to 30 since last Sunday. I feel like I am on another planet with the inability to concentrate or keep my eyes open yet I can’t actually sleep. I am going to stick with 30 for another week I think and then go down by 5 mg weekly. Dr. G will let me do whatever I feel is necessary since I have been down this road a million times. I have weird reactions to prednisone. I get a little bit puffy in the face (pretty mild), but I also lose weight. Most people gain. I don’t get it. Thin skin is definitely an issue though. Any slight nick, bump, or scratch draws blood.

I have been worried that my increase in abdominal pain is because I really do need a higher dose of prednisone since I’m not on any new Crohn’s medications and stopped the Crohn’s meds I was on after Dr. G scoped. I know the Skyrizi and Cellcept weren’t working great for disease control, but it’s clear now that they were doing something for my symptoms which was only mild tummy pain back then. It was important to stop thought to allow them to wash out of my body. I certainly didn’t think it would take this long to get on new meds though. I also have developed some mouth sores which is a common symptom in Crohn’s flares. Ugh. I am holding my breath that I can get through this quickly.

I had my labs re-checked and the good news is my WBC is coming down a bit so there is less of a concern for an abdominal infection. I got the green light to re-start my oral Crohn’s immunosuppressants. Well, kinda…. Because I can never seem to live a dull free week I found myself at another appointment yesterday with what seems to be a bladder infection. Seriously! I started an antibiotic and because of that and how suppressed my immune system is I cannot start my Crohn’s meds until we treat this infection. My lymphocyte count is almost to the floor so it would be dangerous to start more immunosuppressive medications. So, we wait another week. Another piece of good news though is that my Entyivio infusion got approved and is ready for scheduling. I will be getting an IV infusion in my home every 4 weeks which should start mid-November.

I mentioned last week that I have had some recent news about my autoimmune liver disease called PSC. It stands for Primary Sclerosing Cholangitis.  PSC is a chronic liver disease where the bile ducts in and outside the liver become inflamed and scarred eventually becoming blocked. This causes bile to build up in the liver and damages it. Around 80% of people with this need a liver transplant at some point in their life. I was diagnosed incidentally in 2018 when I had an MRI for Crohn’s. My liver was very large on the MRI which led to further testing adding a liver dr, Dr. B, to my list. At that point it was very mild and since 2018 there has been no progression, until now… Each year I get a specialized MRI of the liver and bile ducts called an MRCP. I had the test about a month ago and didn’t think for one second anything would have changed.

I received a message from Dr. B the next day that there has been progression. There is now some beading of the bilary tree in one of the lobes of my liver, but most alarming is a stricture in my common bile duct. He asked me if I was itching or jaundice which I am not. My liver labs look good and my tumor marker is normal. Yes, every year I get a fun lab test called CA 19-9 which measures the chance that your body is carrying cancer somewhere. Usually they use it for pancreatic cancer, but it’s appropriate for liver as well. Mostly it’s the bile ducts they worry about developing cancer. However, with this new development we need to be a bit more vigilant with testing. He is going to check liver labs more often and rather than a 12 month MRCP I will repeat it in 6 months to ensure stability of the stricture. This was very tough news for me as you can imagine. I am going through a lot with Crohn’s that I just need this to be fine. The waiting game is hard. These strictures can grow fast so I really hope that’s not the case for me and it can just sit quiet and not grow. Initial band-aid treatments would involve stents.

PSC is not common, but a large percentage of people who have PSC also have Crohn’s or Ulcerative Colitis. Truthfully, it’s more worrisome to have this than it is to have Crohn’s. I am grateful to be part of a wonderful team of Hepatologists who have a relationship with the GI drs, but it’s a tough pill to swallow. Dr. G was pretty bummed to receive this news as well. I did ask Dr. B if this stricture was at all causing issues with my upper abdominal Crohn’s as the bile duct does drain into the duodenum, but he doesn’t think so. The stricture is not causing an major narrowing right now.

All of this worry is not good for my gut. Thankfully, I feel pretty decent in the mornings despite 2-3 hours of sleep each night. I have energy and have been able to still run 3 days a week (at a faster pace these days thanks to prednisone), strength train, and of course walk the pups a lot. There is a reason why steroids are banned in the pro’s! But, as I fill my belly with food and drink, as the day moves on I struggle. For now, I will take the “feel good” beautiful Colorado mornings and live them to the fullest. The sunrises have been absolutely incredible lately! I feel very lucky to enjoy what I can and try to keep my chin up. If I can’t be active I go into a dark hole and nobody wants that!

I think I have approximately slept 2-3 hours per night in 4 weeks thanks to my old pal prednisone. Good news is I’m listening to a ton of audible books and feeling very productive during the day. But, this cannot be good. I am absolutely exhausted, but not, if that makes sense.

I unfortunately, have been stuck on the full 40 mg for nearly this long, only starting to taper a few days ago. There have been some complications that Dr. G and I are trying to get to the bottom of. I began prednisone and the two oral immunnosuppressants (azathioprine and allopurinol). Within 4-5 days I was having a ton of abdominal pain. We first thought it might be the azathioprine although I’ve never experienced pain with it in the past. He had me stop it and that was not the culprit. I thought I might be having pain with the steroids, but now I don’t think that either.

I wanted him to allow me to get back on the Aza/Allo. I messaged him a few weeks ago and said that I would just gut this out and hopefully things will improve. He called me the next day and no, he did not want me to gut it out. Surprise, surprise. He wanted more information stating that he is worried I am resistant to steroids and the inflammation is getting worse. So, about 10 days ago, I had more labs done and another CT. The initial CT results (more on that later) had the radiologist saying there was improvement of inflammation. The labs though… OOF. My WBC is very high and one component of it is through the roof. The immature granulocytes which usually mean infection. Problem is I am not having any fevers or anything. Plus, you’d think with an infection the pain would be constant and not intermittent. My liver numbers are also very high along with an increase in my CRP which is another inflammatory marker. Sooo… it’s almost like the labs might be catching up to what he saw on the scopes and first CT in September.

I am very unsettled only being on prednisone and no actual Crohn’s meds. While steroids do magically take away inflammation they do not have the same functionality as Crohn’s meds do which help stop the process of my immune system attacking itself. Unfortunately, after another lengthy phone call with Dr. G on Thursday- the 3rd in just a few weeks, I am still not able to start anything.

Back to the CT… yes, he said there is a little improvement, but in the same breath he said that the CT study was not a great exam. My bowel was not distended well so the data he got isn’t all that accurate. He knows how to read CT’s well so he did say we still have very long way to go and there is still multiple loops of very thickened bowel and scarring. I told him that when drinking the contrast I was in a lot of pain and was surprised things didn’t look worse. The interesting thing is the first CT I drank more of the chalky barium contrast and last week it was more clear iodone based so maybe that made a difference.

Anyhow, we chatted a bit and while I have no fevers he is pretty concerned about the WBC number. Steroids can increase WBC, but in the past it has only done that by a tiny bit. My WBC is more than double what the top number should be. That said, he wants me to reduce my steroid dose to hopefully 30 mg by mid this week and then repeat labs on Thursday. If the WBC is not coming down he might give me a round of antibiotics. In the same breath, if it remains high it also could be the Crohn’s talking loudly as WBC and liver numbers definitely increase with active flares. It’s a bit tough to fully know what’s happening. Unfortunately, as I said before, this means I still cannot start back up the immunosuppressants until we get to the bottom of this. We don’t want anything else messing with labs.

So now I get to begin the fun taper process which is HARD. Withdrawal is brutal. The fatigue has set in even more along with nausea and headaches. I’ve also had an increase in pain. He was hoping I could drop right to 30 mg, but my body needed 35 for 3 days (pushing it!) and now I’m on day 2 of 30 mg. If you are one of my sweet friends who I see and talk to regularly, bear with me. Craig, watch out. It hurts my mood, I can barely keep my eyes open, and look like a zombie.

It’s so odd that I wasn’t having a ton of symptoms when he scoped. Or at least that the symptoms were not these horrible burning pain episodes. I think he just happened to scope a bit early before my bloodwork went crazy. Infection is still a possibility- just not holding my breath.

Lastly, I’ll probably write a blog about my liver in the next few days so stay tuned. I am battling issues with my second autoimmune disease devil called PSC. Primary Sclerosing Cholangitis- google if you want. I had imaging on that a few weeks ago and did not expect any news, but news I got. In the meantime, stay tuned for how this pans out later this week with the labs.

“Denial is the shock absorber for the soul. It protects us until we are equipped to cope with reality.”- CS Lewis.

I’m not actually sure I’m equipped to face reality, but here we are. You’ll have to read my post I put up a few weeks ago to get totally caught up on the bad dream that never seems to end for me.

While we are 9 months out from taking out my colon, a post surgery flare is still very much a real deal for me. According to Dr. G, it’s the sickest he’s ever seen my small intestine. We tried really hard post surgery to get on Skyrizi as fast as we could in hopes it would work, and work, it did not. Not even close. We knew I was headed into a flare when I was re-hospitalized after getting my colon removed. Post surgery flares are a big worry for me, from the stress it takes on my body. We just couldn’t catch it. We had to give the Skyrizi at least 4-5 months to try to work.

Interestingly, despite being the sickest he’s ever seen my small intestine, my symptoms are more tolerable than when they were in my colon. I am moving through life ok, but don’t feel great. However, there has been a very, very, big part of me that frankly has been sick of it and admittedly didn’t listen to what was going on that well. Dr. G completely gets that. He told me that I needed to live my life and take a break from it all.

My last blog said I was heading into a CT. I had that, and there was significant disease activity in areas he couldn’t reach by scope. Last week I had a 75 minute sit down with Dr. G and he brought me out of denial real quick. I went into the appointment with the attitude that I’m ok. We can make a change, but I don’t want anything drastic since I can deal with how I’m feeling. I then got a side of Dr. G I have never seen.

He sat back in his chair, crossed his arms and said. “Jen, this is not the time to be tough. You are very sick and I am very worried about your Crohn’s.” He then said “Do you want me to go down the dark road of what life looks like if your stomach stops emptying.” Ummm…. no, no, I do not, but I needed to hear it. There is so much disease up where the intestine leaves the stomach as well as an area of stricturing which is scar tissue that has caused narrowing with active disease around it. He showed me in detail the CT images, where my bowel dilates, and the thickening features. On the scope he showed me how large the ulcers are and how that area is narrowed as well. He then went down that dark road and explained how complicated surgery is in this area (same surgery as a pancreatic cancer patient) and in the end I likely would end up needing IV nutrition given how damaged other areas are as well. Being without a colon is the least of our worries.

He scared the crap out of me, but I also pushed him a bit more. I wanted him to consult with other dr’s that his opinion of what is going on and plan was the best. Pathology from scopes was unremarkable which is a bit odd, but happens. I needed more heads to tell me that this is Crohn’s and not just a crutch in an attempt to ignore that something else that was going on. That actually was already on his agenda for later that day at the IBD conference.

He had the meeting with several other dr’s who were in agreement of what we are looking at and what needs to happen. Pathology is more difficult in this area, but it definitely didn’t show an infection or other disease possibilities. It just didn’t have some of the normal path features for active Crohn’s, but pictures don’t lie. The areas where biopsies were taken could have been just too damaged. I won’t bore you with the options set forth on treatment, but will tell you what his strongly preferred plan of action is. I will be going on high dose steroids for the next few months while 2 immunosuppressant drugs kick in. One of these is the one that caused all of my skin cancer, but I don’t have a choice. This worked in the past and we are going to pray it works again. I will also be going on Entyvio infusions every 4 weeks once insurance approves them. This is A LOT. I am devastated.

He called me last Thursday and we chatted for nearly another 30 minutes on the phone. I tried to fight him on the steroid dosing a bit, but he’s worried that if we don’t get some of the disease under control that the oral drugs and the infusion will not take hold and work. He was willing to let me make some minor adjustments, but cautioned how fast my colon went from active disease to being removed. We can’t risk it. He feels terrible. He even said if I wanted to get another opinion he wouldn’t be offended at all. I feel like I’ve had several opinions since he presented it to the IBD board. I have slam dunk Crohn’s. We are going back to what worked for me in the past, including Entyvio, which is what I think any doctor would do. As Dr. G said, we are running out of options.

Yesterday I got my shingles vaccine which he made me do even though I’m not 50 yet. I didn’t know it was recommended for immunocompromised. Yes, yes, I’ll get the flu and covid vax asap, just give me a moment. A steroid regimen, plus chemo drug which is paired with a second drug, and the infusion are going to be tough. The side effects will be worse than the disease. When you go pick up your RX and have more anti-nausea meds than you do prescription bottles that’s saying something. Steroids are awful. Azathioprine is awful. I don’t know which is worse.

So, bear with me as I try to get used to these meds again which I will start tomorrow. I will say that I had a bit of a reality check the past few days with some pretty bad pain episodes. I’ll be watched closely with labs every 2 weeks to check for bone marrow issues and scopes again in 6 months. I trust I’m in good hands. I’m just so over it. You probably are too. I eat very healthy, rarely drink, exercise, get rest, yet my Crohn’s will not ever leave my side. I wish they knew more 20 years ago on how to treat this from the beginning like they do now.

I recently had a series of labs that showed almost no inflammation in my gut. Either they ran the labs for the wrong person or in a matter of 10 day’s my gut decided to go into overdrive and attack itself again. Neither of these are the answer. I am the poster child for labs not even remotely telling my story. Sure, sometimes they are not in the right ranges when it comes to flares, but this is not the first time I have gone from amazing news to horrible news in such short time. My Crohn’s is back with a vengeance in my upper small bowel.

In 2014, I left my GI in Boulder when he couldn’t help me anymore and Crohn’s took over my upper small bowel (duodenum and proximal jejunum). I began seeing Dr. G since he is a Crohn’s and Colitis expert. It was a hard time because disease in this area is extremely rare and can lead to many complications. Dr. G actually scared the crap out of Craig and I at the first appointment when he spoke about it. I’ll never forget him saying to me “do you want to keep your small intestine?” when I balked at one of the treatment options he was suggesting. We had to get aggressive and over the course of the next 18 months or so he miraculously got that disease in remission. Since then it has only once mildly resurfaced in that area. Until last week.

I have had my surveillance scopes on the calendar since May to check the health of my gut and how the Skyrizi has been working. I have been feeling ok. Not great and really tired, but far from how I felt when my colon was on fire with Crohn’s. I’ve been having some upper abdominal pain and nausea, but not enough that I felt the need to bring it up with Dr. G. My thoughts kept going back to basic indigestion or all of the scar tissue I have collected over so many surgeries that likely were going to cause a life with intermittent abdominal pain. I can’t make a big deal out of every symptom I have. I’m middle aged, approaching menopause, and have 2 autoimmune diseases. I’m never going to feel like I did when I was 25. I also got really sick and tired of talking about it so if you asked how I was doing I’m sure my answer was “I’m fine!” I was really beginning to wonder though why after a series of 5 iron infusions I wasn’t feeling the energy relief I had been used to from past iron treatments.

I met with Dr. G before my scopes and we chatted about how I was doing. I mentioned the symptoms, but told him it was probably just indigestion or scar tissue and it’s fine. I told him my labs look good so I can assume he won’t find anything and we can feel good that the Skyrizi was working. He agreed and even said if things look crystal clear we could get me off of my oral meds (Cellcept). We both felt confident this would be a quick procedure with good results. We couldn’t have been more wrong.

I picture an image like a little devil that sits on your shoulder, but he’s inside of me. “No colon? No worries, I’ll burrow my ugly head back to one of my old hiding spots”. It is a living nightmare that will not end. I awoke from my scopes to have Craig read me the report that it was back. The pictures are gnarly and sure enough I have severely active Crohn’s in my duodenum and proximal jejunum that includes inflammation, erosion, erythema, a unique “cobblestoning” look, and ulcers. I have milder active disease near Liza which is not uncommon. Recurrence of disease near a surgery site is normal, but the much more aggressive upper disease is devastating. I compared these pictures to the one’s I have from a year ago and it is mind boggling how different they look. To say I was shocked is an understatement.

Dr. G normally doesn’t see patients after scopes. In fact, before my scopes he told me that we would chat about the scope results and the upcoming CT (scopes only reach so far so the CT shows the middle part of the small intestine) later in September. He’s a busy guy and I was fine with gathering all of my results and discussing everything in a few weeks thinking it would be an easy discussion. Instead, being the kind and empathetic guy he is, he stopped by to see how I was doing knowing I had the report. He’s bummed. I’m bummed. We are both surprised. I literally cannot catch a break.

We will make a plan in a few weeks which will most certainly entail stopping the Skyrizi and trying whatever is next on the list. We can’t let this ride out as he says. We can’t ignore disease in this area. Even though I’m functioning through my symptoms we can’t just assume that things will get better on their own. They won’t. I have such an aggressive type of Crohn’s that could be come severely life altering if we ignore this area. It’s super rare and far worse to have disease here than in your colon that can be easily removed without other complications. Surgery on your small intestine near your stomach creates an entire set of possible horrible outcomes.

So, I’ll await pathology results (maybe/doubtfully/hopefully it will be a weird infection making it look all gnarly?) and go get my CT on September 20th which I pray doesn’t show us anymore bad news. I have so many thoughts and questions floating through my head right now it feels like it’s going to explode. It’s overwhelming, maddening, and makes me so sad and frustrated. I regret not speaking up that I’ve been feeling off the past month (since I got a terrible virus on our trip actually), but at some point enough is enough and you just deal with discomfort. You can’t set off alarm bells for everything. I do have my answer for my iron infusions though. It’s absorbed up high and most certainly couldn’t take hold with so much inflammation. When is it enough?

It’s been a minute since I have written. This is probably a good thing because it means Liza is on less of a rollercoaster. It’s crazy we are coming up on 2 years since she arrived. It seems fast in a way, but also slow. Reflecting back on what has happened is still so overwhelming and the thought of it’s foreverness even more daunting. But ,here we are, and life moves on I guess. I will likely be posting less and less over the months and years as there are fewer updates. Sometimes you will wonder why I’m posting, but I hope you understand that I need to document this journey to get me through it. So, keep following me if you want or take a back seat. I truly appreciate the support you’ve been able to give me so far.

Now for the latest Liza adventures! Liza and I traveled 22,575 miles recently to the incredible countries of Australia and New Zealand! That is a LOT of bag empties over the South Pacific. But, she did it. There were definitely some bumps (more than turbulence!), but overall she did pretty well. The initial hurdle was my body still thinking we were on Colorado time despite sleeping and not eating a full night. I went to do my first bag change early in the morning and she was wildly shooting out all kinds of stuff making the bag change very messy and time consuming. We went through more products that I wanted to, I had tears, but finally she calmed down and we got a good seal with the bag.

Things moved along ok despite how hard it is to empty a bag at 38,000 feet in a tiny bathroom where you barely have enough room to squat in front of the disgusting airplane toilets. But, then I got the crud. At first I thought it was strep because I had no other symptoms and my throat was killing me. Dr. G had given me an antibiotic just in case I got traveler’s diarrhea. Well, I decided to figure out how to use that as a zpack for strep. So, in Twizel, not far from Mt. Cook National Park in the South Island of New Zealand, Craig and I did a little antibiotic dividing on a cutting board with a butter knife in a motel. LOL! The pills were the wrong dose so we had to split them. This left along some white powder which made us laugh at the absurdity of the situation and the suspicious look of cocaine snorting. I think it did the trick though. My throat felt much better by that night.

However, a day or so later I got a cough and cold and felt feverish. I did a Covid test which was negative. I had several messages with Dr. G’s nurse because I was due to do my 8 week Skyrizi injection. The Skyrizi was sitting in my bestie’s Heather’s house in Sydney as we traveled NZ so it could remain refrigerated. I was told not to do it until I felt better since I was feverish and we didn’t know if I had an infection. In the end, I did the injection on Hamilton Island close to a week late. Not ideal, but this meant the crud was coming to an end which was a good thing.

The hardest part is when Jen get’s sick so does Liza. There is more output, more cramping, and harder to empty because I feel like hell. It takes energy to get up in the middle of the night or detour from a plan to get her squared away. My energy was zapped more than normal as I felt more dehydrated, but we made it through.

While slowing us down the sickness did not prevent us from having an absolutely spectacular time. We did so much over 19 days. We saw 2 countries, went to 3 Women’s World Cup soccer games at 2 stadiums, visited boutique winery’s for tastings, hiked, skied, dipped our toes in the ocean, spent 3 days on a glorious island with amazing beaches, did a scenic flight 500 feet over the Great Barrier Reef, visited best friends, drank at old pubs, made several scenic drives, stargazed, took ferries and trains, saw wallaby’s, cockatoo’s, rainbow lorakeet’s, humpback, and pilot whales. It’s remarkable how each day was so different from the next. A trip we will truly never forget and feel so lucky we got to do.

Lastly (sorry I know this is LONG), I have a little TSA story for you where I lost my mind. As we were going through security in Sydney before we flew back home I got pulled aside because my abdomen lit up on the screen. I told 3 people that I had an ostomy which in the past they just have me touch my bag, they swab my finger and put a piece of paper quickly through the machine to check for explosives debris/powder (I think). This time they grab another lady and she says we need to go to private room for a thorough pat down. I nicely walk with her knowing I don’t want to cause a scene with the government. She takes my shoes to put them through security again and then starts to do the pat down with the wand. Up and down every part, in my crotch, armpits, butt, etc. In my head I am thinking this is not right. So I say “this is all for an ostomy bag?” She says “you have an ostomy?”. “Ummmmm, yes I told 3 people out there!” She proceeds to tell me nobody out there told her I had an ostomy and that this was a miscommunication and never should have happened. But, now that the paperwork had started she needed to complete the procedure. I LOST IT. F’bombs everywhere. She still sends my shoes through security and has to hunt down THREE people for a signature before I can go. I was so pissed. I told her she needed to “educate her god damn staff” asked her how many more “f’ing signatures” she needed and many more explosive comments. Maybe I overreacted, but it was frustrating, humiliating, and so violating. I do worry that writing down my passport number and getting all of the signatures doesn’t put a red flag on me for suspicious person in the future who had to go through a pat down in the back alley.

This trip was one we started planning more than 3 years ago. When I got so sick I was worried that we wouldn’t pull it off. But, our trip to Iceland last year restored some faith in me that I could do it. Then, I had to have my colon removed and my thoughts went into the hole again. I was nervous and miss traveling pre-Liza as it was so much easier and more comfortable, but I have a passion for travel and won’t let Liza take that away :-).

Next up for me will be sending two kid off to college (never good on the gut) and then about 6 weeks full of several tests and scopes. I will have a series of labs, ostomy stool test, 2 scopes, a CT enterography, and a visit with Dr. G. All of this is to evaluate disease activity and hope that the Skyrizi is doing it’s job. Stay tuned!