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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This post is a bit different. It’s mostly because I want to remember this time in my life and someday reflect back on how I felt.

Have you ever gone through some really tough times and you hear incessantly from people, “stay positive”, “this too shall pass”, “everything will be fine”, “God will never give you more than you can handle!”, “everything happens for a reason…” These phrases literally make me cringe.

Most of you know that I am not a negative person. I have been through a lot and still hold my head up and do 90% of what I set my mind to. Whether that’s travel, spending time with family, exercise, volunteering, working, tasking away at home… I am not the sit on the couch and feel sorry for myself sort of person. I don’t really have an option but to be strong. I mean I do, but where would that leave me?

But, what does instill negativity in me is toxic positivity which is pressuring people to look on the bright side and suppress their anger, sadness, anxiety, and grief. It leaves us feeling alone. Instead, a healthy way of supporting is shielding people from those hard times and inviting them to express their pain, show them they are not alone, and that this won’t last forever.

There is an Emily Dickinson poem that starts out “Hope is the thing with feathers- that perches in the soul- and sings the tune without the words- and never stops- at all.” She never says one stops hearing the song of hope, but that hope never stops playing. So instead of telling someone to “stay positive”, or “God won’t give you more than you can handle”, maybe say “I’m sorry you are so sad, overwhelmed, or in so much pain. Your pain is real, but the song of hope is still singing. I know you can’t hear it, but someday you will.”

I know that’s a bit odd of a post for me, I’ve just been really struggling lately with this flare, side effects of prednisone, and nearing my first infusion of a whole new scary territory for me. In one week I will start a regimen that has not been approved or studied very well as a combination of treatments. There are a lot of risks. On top of that, my prednisone has induced some weird side effects this time around. It’s so different. I am dealing with a very low heart rate that is really a struggle as well as some muscle, tendon issues which could be prednisone as well. Tomorrow I will start the antibiotic I need to be on to prevent some weird type of pneumonia. Who knows how that will go, but I’ll remain hopeful.

I’ll end with saying that I know so many dear friends and family who are going through hard times right now. Whether it’s sickness or grief, they don’t need you to constantly tell them to stay positive. They need you to validate their emotions, actively listen, be empathetic, and really just tell them that “it’s ok, to not be ok.”

The holiday’s can be a very joyful time, but also a tough time when you are missing those you’ve lost, don’t feel well to embrace some traditions in their fullest, or just suffer from overall sadness and feeling overwhelmed. I have always loved Christmas and this year is a bit harder for me, but I will start by breaking my “don’t decorate until after Thanksgiving” rule and breaking out the Christmas stuff today and see where that leads me.

Thanks for reading and Happy Turkey Day! I’ll post once I start the new infusion next week.

It’s 3 am and here I am wide awake on prednisone. Sadly, I don’t see any light at the end of the tunnel on this dose for a bit. This flare has been a doozy. Ugh. I think I rank this in the top 5 over the past 22 years.

The past few weeks have been really challenging for me and I’m about to enter what Dr. G calls “new territory” with treatment. The Crohns mouth sores (see last blog) have gotten better, but the fact that one went to the bone- called pyoderma gangrenosum, indicates the severity of this flare. Last I wrote I thought my stomach was a little better, but since then I have had some incredibly painful afternoons. Twice I have actually had to dig into the old strong pain meds and had thoughts of the ER.

Our chat last week settled on a plan that is pretty scary to me, but there isn’t really other options. I will remain on Rinvoq, but back up to the highest dose of 45 mg. I have noticed the occasional pill in my bag so we aren’t sure how much I’m absorbing. I will also be starting Remicade at a very high dose. The max gram per kg allowed by dose, but also more frequently than most people. I will do it every 4 weeks vs 8. On top of that, continuing steroids for a bit. This is a ton of immunosuppression. More than I have ever been on and a combination of treatments that has not been studied well. Dr. G was very honest about this. We will watch my labs like a hawk and do everything possible to keep me safe. The other risk is because I was exposed to Remicade twice many years ago (not used optimally) that there is a chance I have developed antibodies. For that reason, a severe allergic reaction is possible. So, I will definitely get my first few treatments at an infusion center vs. at home.

There are a few precautionary things that need to happen on this combo of meds. I need to update a vaccine and I will have to go on an antibiotic until I’m able to reduce my prednisone dose down a bit. The antibiotic is to prevent some rare type of pneumonia. This all feels so overwhelming to me, but I don’t really know what else to do.

The other piece of news is that I had my MRCP to check on the stricture in my common bile duct. The stricture is beginning to change and my case was discussed at length. The good news is, while growing, the stricture is not showing worrisome features right now. This can change though which is why an MRCP every 6 months is needed. The bad news is my CA19-9 test ticked up a bit which is a marker that is watched closely to gauge if we need to worry and investigate further. After discussions between Dr. B and radiology, the decision was made to recheck this test in Jan. If it keeps going up I will need an ERCP which is a scope procedure into the bile ducts. These are more invasive procedures which normally are tolerated ok. However, for me, Dr. B said this will be very challenging because I have such extensive fibrosis in my upper GI tract. He said there is a big risk of pacreatitis and other complications which given what’s going on with me right now would be extra terrible. So, more waiting, but honestly I don’t think I could handle anymore procedures now anyway.

On a positive note, my mouth is so much better and my abdominal pain does tend to show up later in the day. The first half of each day is ok minus the twilight zone I am constantly in from prednisone. I attribute these moments of relief to the fact that it takes food a bit to get to that lower left area where my disease is active right now. Once there it’s like pouring salt on a wound with mucosal ulcers. Yes, I do have moments early in the day that hit me hard, but they tend to last less than a minute as things slide through that part of my gut. Thankfully, I’m not obstructing- things are moving to Liza ok. I’ll take any good hours I can get to be able to work, visit my kids, walk the pups, see friends…. Any distraction is welcome. Until about 3 pm ;-).

Hopefully, approval happens quickly so we can get this party started and get off the devil drug prednisone STAT. This middle of the night blogging is a bit ridiculous…

I can’t even believe I’m writing this… I’m back on the Devil Drug. This literally came out of nowhere, but here we are again in a pretty crummy Crohn’s flare. This one is completely shocking me because while I hadn’t been feeling amazing, I really thought I was doing just fine. There is a lot to figure out in the coming weeks, but I’ll give you a glimpse of what the past few weeks have been like.

I’ll back up though and chat up some good news first. The Crohn’s and Colitis Night of Hope Gala was amazing! The support from my family and friends was a true blessing and I was so honored that they shared such an important night with me. It was so fun to get all dressed up and support something that is so near and dear to my heart. Over $220,000 was raised and I just loved being part of that success.

The week after that I went in for my transjugular liver biopsy. It was a terrible, long, invasive procedure that gave me a lot of anxiety, but the results were good and that’s all that matters. The biopsy still showed somewhat of a blood flow problem, but less than back in March so Dr. B thinks we are in the clear. For a blood flow issue anyway…. There are still some issues to address with regards to liver enzymes and the common bile duct stricture changing. Those results are pending as of just today. Stay tuned….

Now onto the flare… Do you know what Magic Mouthwash is? Google can be your guide, but in short it is a mixture you get from a compound pharmacy of about 8 different ingredients to help soothe Crohn’s in the mouth. Yep, it goes there too. Mouth ulcers are not an uncommon symptom of Crohn’s. I’ve only had a few minor episodes in my life that have been soothed by salt water rinses or Orajel. These sores have been terrible. So much so that I had to go see my oral surgeon. Dr. G wanted him to biopsy one, but when the surgeon looked it was too severe for him to touch. One ulcer is so large and deep enough it is showing bone. He prescribed two prescription rinses full of numbing ingredients, antibiotics, steroids, etc. Needless to say, eating has been a challenge. It’s been so painful, but thank goodness for these rinses which have helped tremendously. A numbed mouth is a happy mouth.

The sores started about 3 weeks ago and then about 2 weeks ago the pain went to my gut. I had a telehealth with Dr. G and swiftly agreed to go on Prednisone. He knows it’s bad if I agree to that so quickly. He ordered a STAT CT, but had told me if the prednisone was helping to skip it. Last Friday I thought I was doing better so I canceled it. That was a terrible idea. The weekend was horrible and had a few pain episodes of nearly passing out. If we hadn’t been in the mountains I might have gone to the ER on Saturday. Instead we laid low at the condo and I barely left the couch. Sunday was a bit better and it has improved since then, but I did go in for the CT on Wednesday. Dr. G wanted to rule out an abdominal infection. This CT was not a good “Crohn’s” specific test but it did tell us I’m in a flare which was obvious to me anyway.

So, here I am on the Devil Drug again. Not sleeping at all, but certainly productive. I hate prednisone so much, but hate pain worse. I’m slowly introducing more solid foods into my mouth, but avoiding salt and acidity like the plague. Ouch! I don’t know what the long term plan is for me or how we evaluate if we need to change up my Crohn’s med again. My stomach pain episodes are less frequent and long so I think the prednisone is doing it’s job. Dr. G was able to squeeze me into his calendar on Tuesday where I assume we will make a plan. For now I’m staying pretty busy which is a good distraction.

This is all so frustrating for me. I had been dealing with a lot of nausea and fullness due to damage in my upper GI tract. But, I had finally felt like I had a handle on managing those symptoms and they were becoming less noticeable. I know I’ll get out of this like I always do, but come on Crohn’s… enough already!

I just passed my 3 year anniversary (stomaversary?) of acquiring Liza. I have some new followers, so in case you didn’t know, my stoma is named Liza. Gotta keep it real right? Three years ago I acquired Waldo, but Waldo disappeared under my abdominal wall and a new much healthier Liza was formed. Anyhow, Liza is here to stay and thankfully she’s been pretty good to me lately.

It has been a busy month of all sorts of Crohn’s related things so this is going to be a long blog. To start though, I want to mention that I finally hiked my first 14’er after living in Colorado more than 30 years. For those non-Coloradan’s, a 14’er is a mountain peak that lies above 14,000 feet. No, you do not hike from sea level. This hike started around 10,500 feet and over 3.5 miles we climbed to the top. It was extremely difficult and I didn’t feel great, but I took it slow and achieved something huge for me. I was way outside my comfort zone, but I knew that I could always turn around. I hydrated very well, but didn’t eat well because I was pretty nauseous. Liza had to be emptied at 14,200 feet which was interesting. My hands were frozen so Craig had to help me. We hid down in a little rock hole area. I don’t know if I’ll ever do another hike like this, but I am so happy that I took the leap and did it with Craig and Ryan. The old me could have done much better, but the toll on my body the past few years has really shown itself so I will take it!

Last time I wrote I mentioned that I was going to be having a test called a Small Bowel Follow Through to see if there were any areas of stricturing or narrowing that an endoscopist could widen for me. The results did not show that was the case. Instead it just showed how scarred, distorted, nodular, and tortuous (there were a lot of adjectives in the report) parts of my small bowel are. Most specifically where my intestine attaches to my stomach and in my lower left tummy. So, no new info as we really knew all of this was the cause for nausea and upper abdominal fullness. I agreed to the test in case there would possibly be a solution to help my symptoms, but there isn’t. The test only requires you to sip a little contrast, not food, so obviously it showed my stomach emptying fine- in most positions. It apparently doesn’t empty at all when I am on my side which is interesting because it should.

Dr. G would like me to do a gastric emptying test to see how well my stomach empties with a meal. I told him “no thank you”. I need a break from the Crohn’s tests. I feel how I feel, he thinks my stomach doesn’t empty well with food which I agree with, so why do another test? The solution would be some sort of motility medications that apparently have some nasty side effects. I’m not interested. I am just going to manage this the best I can. Maybe someday I will change my mind, but for now I want to just be done.

Part of the reason I chose to skip that test is I have a few weeks worth of liver stuff coming up. My liver stuff is much more scary to me which might seem odd to you, but it is. My liver enzymes remain elevated so on September 25th I will have a transjugular liver biopsy which is different than the percutaneous biopsy I had in March. This type of biopsy will allow the radiologist to evaluate intra-hepatic pressures and venous outflow to see why my liver is struggling with blood flow. Or, maybe not tell why, but will tell us if it’s progressed with more fibrosis in the past 6 months. This is something my hepatologist, Dr. B is very on top of. If it is not worse than 6 months ago we all can breathe a little that this might be a slow progressing diagnosis of Budd Chiari. A few weeks after this I will have my bi-yearly MRCP to evaluate the stricture in my bile duct. The protocol is to keep a vigilant watch on this every 6 months for a while to ensure more invasive testing/biopsy doesn’t need to happen. Since I have Primary Sclerosing Cholangitis of my liver, bile duct strictures are red flags for a potential to turn malignant. Dr. B feels very good about it based on my cancer antigen tests being low, but things can change fast so we watch it.

I have saved the best for last! In just 9 days I will be attending the Night of Hope Gala for Crohn’s and Colitis Foundation (CCFA) that I have been part of planning. I have worked with the most amazing people and am so excited to share this special night with friends and family. I have my fancy dress and necklace and can’t wait to get all dressed up for a wonderful and beautiful evening honoring a few special people and raising money for a foundation that hast TRULY been a lifeline for me. Without it I would not be here today. The money that is raised at the Gala will go to the CCFA and be used for research, clinical trials, and support. Dr. G has personally received more than a million dollars from the foundation for some past research. It is not funding him specifically right now, but it is supporting many other important pieces of research. I’m on the Board of Directors now so I get to see what goes where! The money raised helps people like us and we rely heavily on foundations like this to work with donors, hold fundraising events, and many others things to make our quality of life better. I am so touched and blessed by those of you who have helped in your own way either monetarily, hugs, meals, phone calls, walks…. all of it.

Oh, actually, one last thing. About a week ago I went to my Ostomy Support Group and the speaker was a woman named Raina O’Dell. She suffers from Ulcerative Colitis, has an ostomy bag, AND wrote a book that is now on Amazon called “Bare”. It is a raw, transparent, beautiful, and heartwrenching story of her life. She breaks up each chapter as a “life”. She has been through so much from a tough childhood, bankruptcy, marriage to a drug addict, illness, and more. She is now holding retreats where people who are struggling through life or have had trauma, learn to write about it as therapy and ride horses (she has two). Anyhow, she told me to keep writing, so there ya go!

Summer is flying! It has been a minute since I have given an update on how I have been doing since I received some news about my gut at the end of May. I think being busy has helped me deal with some of the news I got then. We had to increase my medication due to still some active disease and discovered that there has been some pretty extensive damage to my upper GI tract from the nastiness of Crohn’s. This damage does explain some of the symptoms of nausea and fullness/pain.

Since then my symptoms have mostly remained. I went up on the Rinvoq only to come back down about a week ago because it’s raising my liver numbers too much. They are already raised from a known bloodflow problem, but adding to it is not what my GI or liver doctor want. Unfortunately, this could lead to more active disease because I need more Rinvoq, but we need to be careful. I have the second liver biopsy in September. We will watch the liver numbers, get biopsy results, and then decide what to do.

I had an impromptu telehealth with Dr. G last Monday. He would like me to get a test called a Small Bowel Follow Through. It is an xray test with contrast that can take 1-4 hours and is done real time by an interventional radiologist- Dr. D. There are abnormal areas of my small intestine that did not show up well on my MRI I had in May. The contrast didn’t distend the bowel. I always seem to have a hard time with contrast getting to certain areas. We are unsure if it’s tech error, how my gut works, or what, but Dr. G would like a better look via a different, more controlled approach. I did fight him on the necessity of this test a bit because I told him surgery is out of the question for me and if that’s the only fix for my symptoms then so be it. I will learn how to deal. He told me depending on what the interventional radiologist who will do the SBFT finds, there may be areas that a specially trained endoscopist could reach with a scope and dilate (widen). So, I said yes. If I can have a simple procedure to alleviate some of this I will gladly accept it. I do think there is a chance we won’t get any information from this test in which case my symptoms are due to having so many abdominal surgeries (adhesions outside my gut pulling my intestines) and active disease we still need to tackle.

In the meantime while all of this has been going on I have taken 2 leaps… First, about 6 weeks ago I started seeing a GI Psychologist. I have never needed or wanted therapy, but as some of my interests have been harder to do (running eased my mind), I had been finding it very hard to deal with the last few years and knowing this will never end for me. She has been a great ear to talk to and we are working on ways to help me accept my disease more and find more joy in each day by trying to take my mind away from it all. Losing my colon, having an ostomy bag for life, and knowing there is likely more to come for me is overwhelming and very, very, hard. I have typically been a pretty positive person, but lately it’s been more difficult to find the glass half full attitude.

Second, not only am I on the committee for the Night of Hope Gala for Crohn’s and Colitis that is in 6 weeks, I am now on the Board of Directors for the Crohn’s and Colitis Rocky Mountain Chapter. So, for those of you who know me, you are welcome :-). Yes, a big part of this is fundraising, but I will also be helping with some education events, getting more of a community up in my neck of the woods, etc. I have met some incredible people, have made new friends who also are impacted by Crohn’s, and have thoroughly enjoyed being part of the team that helps raise money for more research and hopefully someday a cure. I personally have participated in a clinical trial that this foundation funded and many of the medications I have used wouldn’t be here without the CCFA. It is a vital part of why I am here today doing what I can still do.

Speaking of that… I am about to try to embark on a huge hike. My first Colorado 14’er. I’m not gonna lie, this might be more than I can chew, but you don’t know until you try right? Craig and I did a decent hike a few weeks ago to test my body. I learned a lot and did not feel well on the way down. I hydrated well, but did not eat enough. I need more salt in my hydration. I need to take more breaks. The 14’er will be twice the elevation gain we did and there is a very strong chance with how I have been feeling I won’t make it, but it’s important to me to just take the leap. What’s the worst thing that could happen? I am going into it with a positive attitude, but also a very realistic one. I will be careful and will turn around if I need to. I will take it very slow and my hope is that with a lot of breaks and proper hydration/nutrition that I can do this. I just hope no more Colorado wildfires pop up in the meantime so we have clear air to breathe in!

I will have my SBFT test Friday and a hike a week from tomorrow so will update again soon!

The last few weeks have been incredibly busy and I have not had the chance to really sit and think about the news I got a few weeks ago. That’s probably a good thing honestly. But, last night as I was curled up in bed wiling myself to throw up (I didn’t) I realized that I may not get out of this situation easily.

I had to apologize to Dr. G for not jumping for joy when he told me that my Crohn’s medications are helping heal my gut. Because for me, I just see the damage that has occurred that not a single medication will fix. Yes, things did look better when we scoped. We seem to have landed on two medications that are working. We are not there yet with still a moderate amount of disease ,but we have room to increase my infusion timeline to every 4 weeks and my Rinvoq back up to 45 mg in hopes we can get to true remission.

The devastating news is that while they helped heal my gut, the damage that has occurred from the disease activity last fall is pretty significant. Dr. G had a hard time scoping due to a weird, complex change in the anatomy of my duodenum. My upper small intestine is fibrotic, tightly angled, and lacks mobility. My stomach isn’t emptying well either. The good news is this explains two symptoms I have been speaking about for months- nausea and upper abdominal fullness/pain. Sometimes the most frustrating part of being sick is not knowing the “why’s” so I am thankful for that. He also feels the lower left is struggling too. Scopes just don’t reach that part.

Dr. G and I had some lengthy conversations about all of this. The first appointment was frustrating to me because I could tell he was in a bad mood that day. He seemed annoyed that I wasn’t celebrating the “win” of finding medications that work. He didn’t seem understanding or as though he was listening to what I was saying. I needed the Dr. G I knew the past 10 years. However, a few days later he called me to discuss one more thing and he was the doctor I knew. We talked through how I was doing and he said that he now understood. We discussed some ideas for me to help manage this and even suggested a medication that may take the edge off. He talked about surgery a few times. I am miles away from a decision like that, but for him to bring it up let’s me know it’s on his mind. He doesn’t lightly suggest things he’s not considering so that’s a bit scary to me. I just hope that future is years from now.

I will keep plugging along, be more cautious, and we will touch base in the fall or at any moment that I need his input. I have a tendency to suck things up a little too much so he’s keeping an eye. Given what appears to be some lack of mobility of my gut pushing things through is a red flag for obstructions. The thought of the OR again makes me sick to my stomach so for now I hope we can simmer down the disease that is still active and maybe that will do the trick. I am giving myself permission to be mad, scream, and cry while also shaking my head, laughing, and cussing at the absurdity of the situation. I have said this before and I’ll say it a million times more… “I can’t make this shit up.”

My apologies for the lengthy delay on my liver and potential heart issue update! I thought I wrote about it, but after a few people (who usually always read my blogs) asked me this past week what was going on I realized I never did write that post.

In short, my heart is just fine. There is nothing in my echocardiogram or cardiac MRI that can explain why my liver is struggling with bloodflow. Sooo…. back to the drawing board. Honestly, while it is excellent news that I do not have a heart issue, Dr. B was thinking (and kinda hoping) it was some sort of mild pericarditis that could have been easily treated with a medication and clear the clog that is going on throughout my liver.

Don’t get me wrong, I am very glad not to have a heart doctor added to my list of specialists. Especially this dude who a good friend of mine named “Dr. Wanker”. LOL! It would take forever to write about the ridiculous appointment Craig and I went to prior to him ordering a cardiac MRI. He basically looked at me across the room, found out that I exercise regularly and told me that nothing could possibly be wrong with my heart. He was very condescending and dismissive of my concerns. More importantly he was dismissive about Dr. B’s concerns. He was an ass. When I got home that night and read the visit notes in my portal he had written down that the purpose of my visit was to be evaluated for a kidney transplant. What the heck? He didn’t even take the time to write visit notes about the right person. My kidney’s are just fine thank you. I relayed this absurdity to Dr. B and who was clearly a bit embarrassed.

Back to the liver. Right after the cardiac MRI I had a long appointment with Dr. B. We absolutely cannot just let this go even if we don’t have a source of the problem. My liver enzymes are high, my biopsy showed hepatic venous outflow obstruction (on the spectrum of Budd Chiari disease), and my fibroscan showed a “stiff” liver due to blood backing up. We have 3 test results showing an issue. Ideally Dr. B would like to do another liver biopsy very soon to see if this has progressed. However, the recommendation is to wait one year. He does not feel comfortable with that and neither do I. So we will do the biopsy this fall which is 6 months from the last one.

The biopsy will be done as a different approach. It will be a transjugular liver biopsy where they go in with a catheter through the jugular vein in your neck, past the inferior vena cava, and into the larger hepatic vein of your liver and ultimately take a biopsy. They can test pressures and can get more information regarding bloodflow than a normal biopsy. In hindsight had Dr. B known my first biopsy would show a bloodflow problem he would have done this approach in the first place. The whole thing sounds awful to me, but I understand the importance of making sure this isn’t progressing into worsening fibrosis.

The only thing that might possibly change the plan is if my liver enzymes miraculously go back to normal. There is still a very small thought that my Rinvoq (Crohn’s med) is wreaking havoc but while there is data in can increase liver enzymes there is zero data that it can cause a stiff liver and blood to back up. The only real test would be to stop the Rinvoq which we definitely cannot do (if it’s helping my Crohn’s).

On that note, I have scopes May 29th to see how the Rinvoq and Entyvio are working. Scopes only go so far so I will also have an MR Enterography which is essentially a small bowel MRI to see the 15 or so feet in between that scopes cannot reach. I’m a little nervous because while I am not having much pain at all lately other than some fullness feelings up high, I am having a significant amount of nausea. Zofran has been my friend lately.

On a good note my every 3 month cancer antigen test is completely normal once again. We just keep doing it regularly as a screening for the stricture in my common bile duct. Nobody is worried about cancer- it’s just a protocol that needs to be followed for these types of strictures that are very hard to biopsy.

Lastly, I have connected with some normal and non-depressing women who have an ostomy. I’m going to join them next week for dinner and a support group. The support groups I did when I got Liza were such downers. Full of people who just felt so sorry for themselves and weren’t active at all. I will let you know how the meeting goes as well as about the amazing Night of Hope Gala I am helping with soon!

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.