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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!