We had a lot to talk about last week. It’s not usual for us to only go a few weeks before we need to talk through things again. Unfortunately, the rapid drop in iron and more skin cancer is not something we expected to happen so quickly.

First, the iron discussion… Dr. G is concerned about this because typically in the past this meant my disease was very active. We can’t tell for sure why the drop without scoping so we will just have to go with the assumption that somewhere in either my small intestine or colon my Crohn’s is not doing well. The results of these labs were sent to my hematologist and after reviewing them he ordered me to receive 3 IV iron infusions. Normally I only get 2 infusions, but the levels are so low that they want to give me more. My first one is scheduled for March 1st.

The azathioprine (skin cancer drug), was not as easy of a discussion. Sadly, I need to stop it. The skin cancer is just getting out of control and the longer you are on the drug the worse the skin cancer can get. I sort of expected Dr. G to allow me to decide, but he was pretty decisive in asking me to stop taking it. I stopped it last week and now we need to let it wash out of my body over the next 3 weeks. I will then begin a different immunosuppressant called Cellcept. Dr. G fully admitted that he consulted with his colleagues in transplant for this suggestion. He has not used it yet for Crohn’s, but it is in the same category as azathioprine and some of his colleagues have used it. He feels there is a good chance it will work and have less skin cancer risks. I am staying on the Simponi injections that I receive monthly and am still weaning the prednisone in the meantime.

The interesting thing about Cellcept is that it’s the same drug that Ryan is on for his autoimmune liver disease. In addition to Crohn’s which he receives Remicade for, he has a liver disease as well. Breaks my heart. Ryan is on a very low dose of Cellcept and I will likely be on twice what he is on, but will increase it slowly.

It’s hard to sit and anticipate what could be happening without being on a good course of treatment right now, but we just have to hope for the best. I know I am in good hands and as Dr. G said “this is going to take work.” I know he wants nothing more than to get me healthy enough for a reversal someday.

Lastly, I did have an appointment with the dietician as well. That was a good appointment in realizing that I am back to the base weight I was at before all of these surgeries. She did order labs to check my Vitamin D, B12, Folate, and Zinc. I will get those take and report what the results are. Hopefully I’m not deficient in those as well.

Oh, one last thing… one of my skin biopsy sites is infected. The site on my calf. It’s a really gnarly looking picture that I will not share on my blog. I want my fans to keep coming back 🙂 I’m on a topical antibiotic and need to report how it looks by Friday to my dermatologist. This is one effect of being on immunosuppressants and could also be from nutritional deficiencies.

**I forgot to publish this one on 2/11

Today is one of those days. I got some more bad news yesterday. I went in to get labs and part of those labs were my iron binding panel and ferritin. Typically I need IV iron once a year due to a slow, downward trend of my iron and ferritin from longstanding Crohn’s and diseased bowels that don’t absorb well. Well, it’s no longer a slow drop. It has nosedived in 3 months and it’s really concerning. Normally your iron should be above 50 and your iron saturation above 20%. My iron is at 30 and my saturation is only 7%. Your ferritin should be between 15-300 (ideally around 100 at least). Mine is at 11. This is a drastic decline from my last lab values.

I do wonder if this contributes to some of the symptoms I have been having that I have been attributing to prednisone withdrawal. The fatigue, headaches, higher heart rate… It makes sense.

Anyhow, I got a message from Dr. G and he wants to get with me on a Telehealth on Tuesday to discuss these results, why he thinks this is going on, and to give me his suggested plan with the azathioprine (skin cancer causing drug).

My biggest worry is that my Crohn’s is continuing to be very active despite this ileostomy and medications. My hope is that this is due to the additional small bowel that was resected that we can continue to watch and treat (with IV iron), but I’m fairly certain iron is absorbed much higher than where I was resected causing concern for active disease. Or, bleeding in the colon which I would be unaware of since I am not using my colon.

I guess the good news is that Dr. G is clearly wanting to chat and found time in his busy schedule to do so. He doesn’t see very many patients each week- only being in clinic on Tuesday or Thursday mornings. I’m thankful he responded quickly to speak to me about these results and got me on the calendar right away.

Time for an update on my running! You all know that running is one very important thing that helps me get through this difficult, bumpy, chapter of life these days.

I lover running in winter. I will take a freezing day over a 60 degree day to run any time! We’ve had a few decent snowstorms lately, creating a lot of ice and frigid temps, but that doesn’t stop me. Last Friday I ran when it was only 5 degrees and pretty icy. I bundle up, put on my nano-spikes so I don’t slip and head out the door. It’s a lot more difficult running on snow, but who doesn’t like a challenge?! What doesn’t kill you, makes you stronger. I’ve had some decent spills in the past, but it doesn’t deter me from getting out there.

The snow on the mountains is breathtaking this time of year. Long’s Peak looks spectacular with the crisp, blue skies around it. Staring at the mountains while on the trail causes me to zone out a bit once in a while. It’s hard not to forget everything and soak in the beauty.

It’s been about 5-6 weeks since I started running and I’m progressing pretty well. I can now run 3.5 miles without stopping! My longest run has been 4.5 miles and I think I’m close to increasing that distance a bit. One of my major goals is to get back to the speed I was before so I’m working on the same distance for a while at a time. I have a ways to go, but finally have clocked several run’s at a 9:50 pace and look forward to continuing to trim that pace. If you know where I live you know that there are hills everywhere so my endurance is doing pretty well since I can’t avoid the uphills.

In addition to running, Liza was an absolute champ on Monday up in Vail! We skied all day and clocked about 30 miles and 14 runs. It was so fun! The weather was perfect, no lines, no traffic…. I can’t wait to get back up there.

The picture below of the “Legendary Back Bowls” sign represents what we named our dog Blue after. Blue is named after “Blue Sky Basin” which is part of the back bowls in Vail. It’s just stunning and our favorite spot so a well deserved name for a dog!

Lastly, a photo of me after my run last week. I actually don’t dress that warm now that I look at the picture considering it was 5 degrees. I’m always freezing inside, but can’t stand being hot while running. No filter there. One of my biggest pet peeves is people who use all the filters on Insta and make themselves all perfect looking. Life isn’t like that- be real! Pretty safe to say that I’m hiding nothing when you see some of my gory pics in my website gallery :-).

Well, I guess things just never seem to continue in the right direction for me. I got some bad news last week and it has hit me pretty hard. I have mentioned before that the drug that worked the best for me, azathioprine, also can cause skin cancer. I had to stop this medication in August of 2020 because I had several squamous cell skin cancers over the course of a few months. I had to have 2 MOH’s surgeries (a special type of skin cancer surgery used on visible areas of the body to prevent more tissue from being taken than necessary) on a few of them. One on my lip and one on my ear. The ear one was really tough. Since the ear doesn’t have any extra skin they had to cut a flap from my cheek, pull it over to attach it to my ear to re-establish blood flow, and then take it down a few weeks later. I had probably 30 stitches for that. When I stopped the medication my skin was so much better.

Now, only about 3 months into re-starting the azathioprine, my skin is exploding again and I had to have 2 biopsies that both came back as squamous cells. I have a 3rd spot on my hand that looks like it might be a recurrence of another squamous cell as well. The decision was made to re-start the azathioprine because it worked well for my Crohn’s and has the best chance of working again so I can get rid of this ileosotmy/bag. Of the two spots, the one on my leg was removed completely during the biopsy, but the one on my forehead near my hairline will require another MOH’s surgery. Due to it’s location I am quite worried at what that process will be like.

This news is devastating to me because I want nothing more than to get my Crohn’s under control, my colon healed, and have my intestines put back together so I do not spend the rest of my life with an ileostomy. I have exchanged messages with Dr. Gerich and he is worried both with staying on azathioprine and with coming off of it. He told me this morning that he is consulting with his colleagues in both the Crohn’s and Colitis Clinic as well as the transplant team to see if there is another immunosuppressive drug that will work for Crohn’s, but not cause skin cancer. So, for now I will wait and hope that he can come up with a new plan.

For all of you science geeks out there who like to see the gory stuff, here is a pic of my ear after the cheek flap was created. The good news is I have almost no scar. You cannot tell at all that I had this surgery thanks to an amazing MOH’s surgeon, Dr. Brown at Anschutz. I hope she can just as successfully pull off another surgery on my forehead.

“It takes courage to say yes to rest and play when exhaustion is seen as a status symbol.” -Brene Brown

We live in a culture where you feel un-important unless you are always busy. Filling your calendars with work, appointments, activities, and events makes you feel like you are more worthy. That you are making a difference in others lives, are influential, more responsible, more valuable… It’s even more prevalent these days with all the social media and being able to draw attention to yourself by putting yourself out there online for the world to see. As I’ve seen my kids work their way through high school and go off to college I have longed for the days when life was more simple. There’s just so much pressure these days to be involved in a million things, be smarter, more talented, and just plain busy.

Lately I have been forced to be “ok” with rest as I wean off this horrible prednisone. I wish I could describe to you exactly how awful this stuff is, but unless you’ve been on it before you probably won’t totally get it. It’s brutal getting off of. The extreme exhaustion, headaches, light headedness, moodiness, awful nausea, shakiness… ABSOLUTELY HORRIBLE.

So horrible in fact that they actually make 1 mg tablets so your weaning process can go that slow. At one point in the hospital I was on 70 mg. The normal dose for Crohn’s is around 40 mg. I weaned by 10 mg every few weeks, then by 5 mg a week and then by 2.5 mg. Well, once I got under 10 mg I really started feeling like hell. I have not been under 10 mg in nearly a year when I was in a clinical trial. I relayed this info to Dr. Gerich on Tuesday and he instructed me to go more slowly. So, although I was at 5mg last week, I went back up to 6 mg. I actually do notice a difference which is crazy to me. How just 1 mg can make such an impact.

This weaning situation has forced me to rest. I no longer feel like I need to be busy because frankly that seems impossible to me. I am so exhausted. I have been falling asleep very easily while just sitting on the couch. Getting out of bed is a struggle and there are days when I can’t wait to crawl into bed. I have been watching A LOT of tv. At first I felt guilty, but I don’t anymore. I need this. I need to listen to my body and get through this with rest. The next few months as I wean, life is going to be hard.

Thankfully, the mornings are my best time after I have been in bed for about 9 hours. I am able to walk the dogs, go for a short run or workout in the basement. I feel pretty ok until about mid-afternoon and then the nausea and fatigue set in. Dr. G feels that this is all due to a combo of the prednisone withdrawal (by mid-day my body is wanting more) and the azathioprine.

As for updates on the rest of my appointment there isn’t a whole lot to say. I’m continuing the current medication regimen and labs are being followed closely. I cannot get on the full dose azathioprine as my labs show just a bit too much immunosuppression. My metabolite level is looking better though. The medication is in the zone of being “effective”, although barely. We will re-check again in 3 weeks. The real goal now is getting off the prednisone without my disease flaring again. I just want to be stable on the actual Crohn’s meds and off of this steroid band-aid fix

The picture here is the 5 mg and 1 mg prednisone tablets, my drip-drop hydration that’s important, and the many supplements I take to prevent malnutrition.

It’s been a few weeks since I have written. Not because I haven’t wanted to, it’s just been a difficult ending to 2021 and start of 2022. Liza is overall doing ok, but a lot more active than I’d like her to be. The nightly emptying and catching me too quickly on errands is getting frustrating. I’m not sure what’s going on. Maybe my body is just exhausted, overwhelmed, or the emotions are adding to it.

It’s also been very difficult getting off of prednisone. I was dropping by 2.5 a week for a while now, but this past week I made the executive decision that I need another week at the current dose of 7.5 mg. I have not been on any dose under 10 mg in almost a year. During my entire clinical trial I remained on 10 mg to give me a little buffer should things not go well. I wonder what would have happened if I wasn’t on any steroids at all during that time? I’m sure it would have been even a worse road for me.

Steroids are literally the worse medication I have ever been on. I’ve had multiple stints of them over the years and I hate them. So does Dr. G. He really tries hard to avoid them. They are terrible for your body and the withdrawal effects are awful. Headaches, extreme fatigue, shakiness, body aches…. I could go on and on. Hopefully I can be steroid free in the next 4-6 weeks.

The last week of the year was tough. One of my best friends son’s passed away unexpectedly and it just breaks my heart. I am grieving for her and her family so much. The loss of a child is unimaginable and it has been hard to grasp what they are going through. A few of us are trying to be by her side through this whole journey, but I wish I could do more than walks, lunch, talks…

Two days after that as I was planning his reception with some of my girlfriends I was receiving text messages from my neighbors that I should start packing my things. The Marshall Fire was only a few miles from us. We did not have to evacuate, but had the winds not subsided we would have been next. There is dry open space between us and the closest neighborhood that burned down. We could view the fires from Emily’s bedroom and the corner of our yard. It’s absolutely devastating. It’s a community that we frequent. Ryan was born at the hospital over there. It’s our Costco, Target, pediatrician, dentist… I have driven through the area a few times since then and I cannot believe the path the fire took. Over 1,000 homes burned to the ground, but in an erratic pattern. Multiple neighborhoods are untouched between the one’s that burned. It was the wind and the embers that caused such an odd fire path. It’s so sad to see.

I ended the past week though with something rewarding. As a registered therapy dog handler with ATD, Frisco and I were able to visit a site where insurance claims were being filed. Frisco gave some hugs to a few of the fire victims. They told us how much it meant and how just those few minutes with Frisco brought the stress level down a bit. I was so glad to do this and have another event next week at the Louisville Library. They are providing counselors for victims and asked that therapy dogs be present.

Hopefully Liza will settle down a bit. I’m trying to rest a little more, but I’m not the greatest patient for that. The running has been slow, but it’s happening, so that’s good. It feels nice to get out in the fresh air and reflect on life a bit. I see Dr. G in a week. Fingers crossed he has some good news for me. I’m still not on all of my Crohn’s meds because my labs are too poor so that’s something that I am praying for. Lots and lots of prayers for so many people.

Today was the day! My lungs were on fire, my legs felt like jelly, and my feet felt like I was running through peanut butter, but I did it! I went for my first run. It was slow, it was painful, it was overwhelming, it was exhausting. But, it was also incredible, amazing, beautiful, and awesome! Exactly two months since my last major hospital stay and 4 months since this whole nightmare started. I didn’t think in a million years I’d be running before the end of the year. Here’s to the power of positive thinking, hope, prayer, healing, and never giving up. Oh, and most of all, a TON of support!

We do not live in a flat area. In fact there are hills every which way you turn on our trail. Perhaps I should have headed over the the rec center where the trails are flat. But, when you have the view I have and the trail is outside your back door it’s hard to make yourself drive anywhere.

The first 1/2 mile was basically uphill. I stopped at the top to catch my breath. My lungs burned so much. I ran about another 1/2 mile and walked some more. Mile 2 I did not stop! Then, mile 3 was mostly uphill so that required some walking. It was a gorgeous morning (pic’s below) and I was so blessed to be out there again. My pace is incredibly slow and my heart rate much, much higher than my old running heart rate, but I’ll get there.

Liza did great! I wore my stealth belt along with another wrap to keep her secure. I don’t know if I need the extra wrap, but it gives me a sense of confidence. I had a few stitches of pain, but overall noticed my lungs about a million times more than I noticed my belly. I need to figure out the hydration piece a bit better along with knowing if I should eat before or not. I feel like I need a little something before I head out, but never like to run with food in my belly. However, not having my steroid before I run is a recipe for disaster so a little food is necessary for that.

This whole “back to running” will be a process, but this morning was a good start. I’ll try to get out there every other day while doing more strength and core work in between. I’m down to 10 mg of prednisone which is wreaking havoc on my exhaustion level. Resting might be more necessary which I am terrible at. Maybe a New Year’s resolution?

When Dr. G sat at the end of my hospital bed 4 months ago and assured me that eventually I’d be able to do everything I loved to do before I didn’t really believe him. I definitely didn’t believe him in the first few months when I was hospitalized so long with so many terrible complications. I can’t wait to tell him he was right-so far. 

Liza and the family headed to Vail and without hesitation took to the slopes just as I have every year.  I took it easier, but minus my lack of core, it felt great! The core piece is interesting. I have zero ability (and I mean zero) at this point to engage it to help me “pole” myself along on flat surfaces.  So, I avoided cat walks as best I could. Other than that, my legs felt strong and I had no problem skiing for two days. Unfortunately, for the mountains there is hardly any snow so none of our favorite runs were open in the back bowls, but it was still great to get away. Probably better for Liza to not to push herself back in Blue Sky Basin anyway. I’ll need more core to get back there. 

I managed to empty ok with all of my gear on. I had one slippery incident with more clean up than I would have liked, but overall it was ok. Because I don’t ever feel my bag filling up it’s hard to tell when it’s full under my ski coat so I was finding myself checking more often.  I am happy the placement of my stoma is higher so putting on ski pants is not an issue. Most placements are right at the belt line which to me seems impossible to wear anything normal. 

It’s crazy how much extra air my bag seems to hold at altitude. When we headed to Leadville on Monday for shopping and lunch I thought it was going to explode! It blew up like a potato chip bag. We were at nearly 11,000 feet in the highest incorporated town in North America. Go big or go home!

I changed out my whole system this morning and Liza and my belly look as healthy as can be. I was wondering if skiing would create some irritation, but it didn’t. That is a big confidence boost for sure! The stealth belt I wear keeps my ostomy pretty secure. I’ll need a bit more support when running. Amazon is taking care of that in the next few days. 😉

The mountains are supposed to get dumped on over the next week. We are excited to come up to Breckenridge over New Years for a few more days. Hopefully a day trip to Vail too before Emily heads back to Baylor.  I feel so lucky to live so close to the slopes and incredibly blessed to be able to do what I love. 

Running is next. Very soon. 

“I’ll look back on this and smile because it was LIFE and I decided to LIVE it.”

Earlier this week I got the green light from Dr. G to start my Simponi. This is two injections on day one, one injection two weeks later, and then one injection every month. Last night Craig had the pleasure of giving me the first two shots. I’m so glad he doesn’t mind doing this for me. I’m always a bit nervous with these AntiTNF medications. They are pretty intense and you have to be watched really closely via labs. I’m pretty tired today, but so far so good. Fingers crossed it stays that way!

I will continue to get labs very regularly to watch my infection fighting numbers, platelets, inflammatory numbers, etc. Dr. G will also continue to watch my metabolites for my oral Crohn’s meds. There is a neat test available that tells us how effective the medicine is right now in my body. As you can see from the below results, I’m not in the range of effectiveness right now. This is because I had to lower my dose since my infection fighting numbers are too low. Dr. G says the Simponi should help raise the level a bit, but we aren’t sure what it will do to the rest of my numbers. Hopefully we can be in the green range- safely.

I cannot say enough about Dr. G and his staff. Not many doctors email you so often to give you updates on where your labs are at, what to do next, etc. I am very lucky to be in his hands. This is all such a juggling act. He mentioned this morning he may tinker with the oral med dose a bit and have me alternate doses. We will see what labs show. I want nothing more to get in the right range with everything and heal up my gut. This has been quite the journey.

I’m looking forward to a busy few days and weekend with friends and family. I’m counting on Liza to be a champ!

She’s gonna forever say “I’ve got this.” Even with tears in her eyes.

Ok friends, this post might be a bit of a downer, but it’s time to be real. Maybe it’s because it’s the holidays which tend to be a time reflecting back on memories of time spent with family. Or, maybe it’s because it’s the end of the year and also a time to reflect on what this year held for all of us.  But, I’ve had a tough few days.  I appreciate the constant support from friends and family telling me how strong I have been during this journey.  I agree, I have put up a fight and truly am not going to let this ileostomy take over my life and the goals I have ahead of me.  I won’t.  But, it’s ok to not be ok.  Some days are harder than others.  Some days are exceptionally hard and bring you to your knees. Sometimes the tears flow and flow and flow and don’t want to stop.  I’ve had a few of those days recently.  

A flood of memories and emotions have overcome me lately. Most of you know this, but if you don’t,  I lost both of my parents in 2016 and 2017, just 14 months apart from each other.  Both losses were very unexpected and took two absolutely incredible parents from me way too soon.  They were way too young.  There is not a single day that goes by that I don’t think about them.  The loss overwhelms me.  I think the loss has hit me harder in the past few months when I have wanted nothing more than to talk to them.  Parents take care of you. I need mine.  I want to hear their voices. I want to feel their touch. I want their words of encouragement, advice, love… I do feel their presence, but it’s not the same.  I miss my dads witty sense of humor and my moms never-ending kindness and grace. I could write a novel about what I miss about them. I want them to see how their grandkids have grown and the wonderful adults they are turning into.  They would be so proud of them.  The reality of having your parents die when there was so much life left for them to live is incredibly tough.  There are so many realities lately that I am struggling with.

This brings me to Liza.  Friends, I literally have an organ poking out of my abdomen with a bag attached for my digested food to empty into. While it is fascinating and I am so thankful in the roles that science and doctors had in this discovery, it is absolutely horrifying. How do you really grasp this?  You don’t. Or, I don’t.  Don’t get me wrong, Liza is working like a champ.  But, the reality of the situation is really tough.  I AM living my life again.  I’m eating normally, running errands, having outings with Craig and friends, working out, looking forward to skiing… But, she has also taken a lot from me.   There is not a moment in my day that I do not think about it.  The constant awareness of how the bag feels and worrying about when I need to empty.  The sleepless nights and nausea.  The overanalyzing every slight pain and discomfort.  The CONSTANT bloodwork. Every single week I head to the lab and then worry about the results as they come in.  The not being able to be on a good Crohn’s medicine regimen because my body can’t handle it right now.  The ebb and flow of my emotions.  “Yes, I’ve got this, it’s all going to be ok.” to “Holy shit, what if this is my life forever?”.  The worry about leaks and hassle of changing the whole system out every 3 days.  I feel like a prisoner sometimes.   The guilt. Oh, the guilt.  It has taken a lot from Craig and my kids. 

Today is a day I feel like I could go on forever about how hard this is.  I know I sound positive in a lot of my blogs.  Those are all very truthful.  I am being real in each post I make.  Believe me (I’m sure some of your are thinking this), I 100% realize there are people I know and don’t know who are going through much, much, much worse situations.  I am sad for them. I wish I could make it better and I DO feel blessed that I have what I have. But, everyone has their own reality, and today, my reality is this.

Someone said, “I don’t know how you do it”. I said, “I didn’t know I had a choice”.