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!

There are a lot of good things going on in my life right now. Believe me, I realize that. Our kids are great, Ryan had amazing colonoscopy results (no active Crohn’s!!), we are about to embark on the trip of a lifetime – our second time to Australia to see my bestie as well as New Zealand (that will be a story in itself with Liza!), we will be spending more time in the mountains, getting two off to college, and countless other positive things. But, even with all of that I have had to give myself permission to meltdown recently. This whole lifelong ostomy bag/Liza life is exhausting and overwhelming.

I did need to start iron infusions after finally my ferritin tanked along with all of the other iron labs. I had my first infusion last week and will be getting four more. It’s so frustrating that it took this long and that my tank has felt so empty for so long. Being iron deficient is really a struggle. It means you are so low in healthy RBC’s that carry oxygen to our tissues. It is down to the core exhausting. I push, push, push myself to continue to work out and run because it’s the only thing mentally that helps me get through this “life”. But, it has not been that enjoyable for a while. It’ll take time for the iron to kick in- probably another month or so, but at least we are finally getting somewhere. My hematologist says I’m either not absorbing iron well from damaged intestines or there is some inflammation somewhere.

As if the iron deficiency isn’t exhausting enough, I also get extremely dehydrated thanks to no colon. One of the colon’s many major functions is absorbing water. I’ve talked about this quite a bit before in past blog posts. It is the real deal. I drink and drink and use hydration packs and I still never feel great. Especially in the heat of the summer. This is really tough with exercise.

Today I am paranoid because despite drinking a ton, my output has been very, very low. This doesn’t happen often, but when it does, something is wrong. My hope is as the day goes on I begin having more output and that pain doesn’t occur. Pain and low output would mean a blockage. My thoughts are that it is dehydration related and I intend to stick with that theory. No time for anything more!

The heat of the summer is just forever going to be a pain with Liza. Sweating more with a bag and an ostomy belt is just what it has to be during these months. The skin irritation and itching seems to be more intense so I use tips and tricks to deal with that. Oh, it’s so fun.

So, that in a nutshell, is why I am having a few meltdown’s lately. It’s just so tiring day in and day out. I’ll get off the pedestal in a day or two and be proud of myself again that I can still run at all. Someday, I will do a big race again, just not today.

I just put some pic’s on my Instagram story and page (@thisgirlsgotguts). I am very much annoyed by Facebook and the thousands of ads, people who share literally everything, complaints, and stalking capability. I rarely post there anymore except a photo dump once in a while of trips or big events that I know family would enjoy seeing. Anyhow… the point of this blog is that I am not one to use all of those insta filters to make your face, skin, or body look perfect. My reality is very real to me. Why do I need to filter who I really am? I’ve got wrinkles, big scars, a bag that hangs off of me… I’m me and I’m not hiding that. I think you all realize that in my very open blog posts over the past 21 months.

Some of the pics I posted… some sweaty post run pics, a shot of my irritated skin around the adhesive of my wafer, a large scar, a post workout bag inflation. It is what it is.

My latest update is that I think I dodged the CT enterography bullet. I haven’t actually heard from Dr. G after my lab results came in, but my WBC looks even better. I am under the assumption we can wait and do the CT and scopes within weeks of each other for disease activity evaluation in September(ish). This will be a yearly thing for me for the rest of my life. Hopefully not more than yearly.

I will be seeing my hematologist in a few weeks to look at my iron numbers. I strongly hope that my ferritin is finally at a number that insurance will allow me to receive iron infusions. Even though my iron saturation is 6% (normal is above 20%) and my iron is at 20 (normal is above 40) insurance will not pay for iron until your ferritin is around 25 and below. Mine was at 60 in March which was a drastic drop from a few months prior. Dr.’s like to see it above 80 or so for women (the range is 15-300). Insurance companies are frustrating. We’ll see. The best thing would be that everything has improved, but I’d like some relief if those saturation numbers are still in the toilet. I have noticed the exhaustion level skyrocketing lately which is either iron deficiency or perimenopause (yes, it’s so lovely that went into full gear after my ovary was removed). It’s likely a combo of both.

Tuesday I had a Facetime training with a nurse to administer my first self injection of Skyrizi which will now be every 8 weeks. I am done with the 3 infusions so this is the next step. Talk about medical waste. It’s this huge medication filled cartridge with a needle that you adhere to your skin. It administers the medication over 3-4 minutes and then you throw the whole thing away. It has sounds and lights and to me, seems like overkill. But, I guess it’s cheaper than having your insurance company pay for you to go to a facility and have a nurse slowly give you the med.

Lastly, I have been back to running more consistently over the past 6 weeks or so. The runs are slow and tough, but I’m doing them. I am probably a minute off of my normal, healthy pace, but that’s ok. I attribute that to continued recovery and low iron which hopefully will get better soon. My goals have been “Can I make it up that hill without stopping?”, “Can I make it 2 miles without stopping?”, “Am I faster than last week?”, “Can I do at least one of the miles under 10 min?”. The answer currently is yes to all of those questions :-). I’m pretty close to 6 miles for distance. The elevation around here is no joke though. Oh the hills! Plus, it’s Colorado so you’re starting at 5,500 feet anyway. I am thankful for all of my neighborly running pals I see along the way who always stop to chat (and let me catch my breath!). However, I am not thankful for the heat of summer with this bag. The sweat and skin irritation is not fun at all whether I’m running or just doing strength training. I do often wonder what my skin will look like over the years to come with the constant adhesive on my skin. Liza has been a champ so far though and although I will forever have days of frustration and tears that this is my life now, the alternative is much worse.

It’s been a minute since I’ve written. Time has been flying. We are almost halfway through May with Ryan’s graduation coming fast. If you’ve gone through the last kid flying the coop yourselves you will know how emotional it can be. It’s sad, but also really exciting to watch your kid soar through the last bit of high school and get ready for that next step. Ryan will be headed to University of Arizona in Tucson where he will be in the business school. He’s also in the middle of lacrosse playoffs which is exciting after a fantastic season with an amazing group of boys. Ryan knows the club coach at Arizona who he plans to chat with. Or, he may choose club golf or an intramural sport of something. It’s fun to have a few options ahead of ways he can meet some new friends, while studying of course ;-). He likes to be busy and no doubt will find some athletic activity.

The hard part of the college thing for Ryan is that he has Crohn’s himself and we have to navigate how to get him infusions every 8 weeks. Insurance will only allow a patient to go to a single infusion center. For now, we are keeping his infusion center in Colorado and will have to fly him home every 8 weeks. A few of them fall over breaks, but several he will have to make the commute which is really unfortunate for him. I feel terrible, but I can’t control what hand he was dealt. He’s in good hands and the best news is that Dr. G knows a Crohn’s doctor in Tucson at the U of A. At my appointment with him last week he said he would be more than happy to take Ryan on as an adult patient and help coordinate with the Arizona doctor when we are ready.

As for me, I am officially done with prednisone. A hard thing to get off of, but I made it. Now we will wait and see how things go. It takes a while for prednisone to completely wash out of your body. The hope is that the Skyrizi has taken over enough to treat my small bowel Crohn’s so we won’t need more prednisone. Despite having low blood pressure at my last Skyrizi infusion we moved forward with the 3rd infusion last week and it went fine. Dr. G had them pre-medicate me with a few things which helped. With the infusion part of Skyrizi over I will now be using a self injector patch in 3 weeks and then every 8 weeks after. I have never seen a self injecting patch so I will let you know what that’s all about when the time comes!

As for how I’m feeling I think I’m doing ok. However, I have the most cautious GI ever and he is not willing to grasp that feeling quite yet. I am having some pain episodes which I think are very likely due to adhesions. I feel things get a little stuck, pressure, or noise and then eventually go to the bag. I have had so many abdominal surgeries that I can’t expect there not to be some repercussions. I really do not need a definite answer to what these pain symptoms are. I am moving through my day quite fine. Yes, they disrupt my sleep once in a while, but I’m sure every person reading this is disrupted by some sort of ache and pain daily. Yes, I also suck up a lot, but it’s how I roll. You have to with this disease. We have to eat to survive. My plumbing is forever scarred and narrowed in spots. It is what it is.

At my appointment last week I shared this info with Dr. G (he knew something was up since my re-hospitalization tests) and made it very clear to him I am fine just moving on. Well…. he keeps looking at my labs and isn’t happy. I have had a continued high WBC and platelet count which he wants to get to the bottom of. He wants me to get a CT enterography which is a specialized CT of the small bowel. When he mentioned this I questioned the necessity and what would we even do with the findings. I peppered him with questions and doubt that I needed to have this test. I reiterated I’m overall ok, much better than a few months ago and can’t we just wait until late summer or early fall when he wants to scope? Scoping through the stoma (Liza) is hard because the angle is weird. He can’t get very far. He has to scope from the mouth too. Also, can’t get very far. So, each year I will need imaging like the CT enterography to go along with the scopes. I would like to have all of these tests done at once so we have a solid picture at the same time.

We went back and forth and ultimately agreed to re-check my WBC. Results came back and they were much better. I was thinking “Perfect. Now we can just wait until scope time.” WBC is still high, but decently better. I sent a message thinking I was in the clear. My message back… “let’s re-check your WBC in two weeks and then we will decide on the CT.” Ugh. I am forever in limbo phase. Always waiting for the next test result. I would really just like to move on.

So, that’s my update. I think I’m doing fine, but Dr. G not convinced. Good news is it’s a busy few weeks ahead so I will be at that two week mark very quickly. Then, we will move on right?! For now I am going to continue to try to come up with “bag friendly” outfits for graduation and all the fun things coming up. That is not an easy feat to find tops that will accommodate a bag that starts off small and over the course of a few hours looks like a right sided bulging bag of potato chips attached to me!