It’s been a week since my follow up with Dr. G and I am still barely bringing myself to write about it. It’s too much. It’s just too damn much.

If you haven’t read my last post or two you should do that before you read this one. It’ll give you the back story and will explain why I was so shocked when I hung up the phone last Thursday after my telehealth. I burst into tears. I still don’t know what happened or how I even got to this point. I clearly was in post-sedation denial after my scopes because I swear I remember hearing some encouraging news.

Almost exactly a year ago (Aug 27th) I entered the hospital and after two surgeries and horrible complications, I came out three weeks later with an ileostomy. A month after that I went back in for a much more major surgery after my small intestine began falling apart and my ostomy fell beneath my abdominal wall. This was all so hard and devastating, but I made it. While I have not had the greatest time with this bag, I have been doing ok, until now…

Dr. G kindly squeezed me in last Thursday. He had been thrown into an unexpected week and was asked to cover the ICU. He could have easily requested that we reschedule, but he didn’t. He hopped on the zoom on his phone and through FaceTime we chatted for a good 30 minutes. I wish he had rescheduled.

Just as I said in my last post, I asked Dr. G not to sugar coat anything about my results. Well, he took that expression to a new level. First, after he looked further at my scope results, pictures of my colon as well as the peri-anal area he confirmed that even with a year of bowel rest, my Crohn’s has not stopped and I have crossed the bridge over into peri-anal Crohn’s. That is a terrible diagnosis. Once Crohn’s gets to the peri-anal area the complications and aggressiveness is too much to go back on if you have failed multiple medications. I have what they call “refractory Crohn’s.” I have failed nearly everything. Something in my body is resisting every single medication. So, while yes, some areas did improve (maybe 25% of my colon got better and great small bowel results) the first piece of bad news he gave me was that I have zero chance of reversing my ostomy. It would not be successful. Not only do I have peri-anal Crohn’s now, my sigmoid colon and below is so damaged that I would not have the muscle to be able to control my bowels. Liza will be with me forever. I am absolutely heartbroken. I have not even processed this. I don’t know how. I especially don’t know how when the next piece of news he gave me was even worse.

My colon needs to come out. I can barely even write that sentence without bursting into tears. I never in a million years even thought that would have to happen. There will be many more discussions around this and truthfully, I was in such shock when he told me this that I couldn’t even process any questions to ask him. But, I will briefly explain why.

I have a liver disease called PSC in addition to Crohn’s. These two together make my chances of getting colon cancer exponentially high. So high that a yearly, more advanced type of colonoscopy is required. Dr. G, for more reasons than me just not completing the colon prep could not see half of my colon. Biopsies were done blindly so the screening was compromised. Future screenings will continue to be inaccurate. The safest option is to remove my colon.

There is a lot more information around this that I am gathering answers for. Dr. G got called away to an emergency so we had to hang up, but that was ok. I was completely overwhelmed and need to process what to ask him. Right away his nurse scheduled an in person follow up for Oct. 4th. That’s a bit from now, but considering he’s usually booked 4-6 months out I appreciate that Carrie gets me in no matter what. In the meantime I do have an email out to him to ask a few more questions. Once I get those answers I will give an update. I need more explanation on what prevented him from seeing my whole colon, how long we can wait to do a total colectomy (praying a year or 2??), some numbers on risks, what happens with rectum, etc. I’m limiting too many questions until October, but hope to have the above answers soon. I can then explain more in my blog about PSC. I do plan to also ask for his colleagues opinions (just as I did prior to surgery a year ago), my surgeon’s opinion, as well as my liver doctors opinion.

So, I guess my “concern” in my last post about what I thought were somewhat crummy results came true. In even more ways than I ever imagined. I am absolutely devastated and overwhelmed. I am so sad. It has been a very difficult week.

Finally, you know how sometimes when you are thinking about something such as a new recipe to grill, a new mattress you want to buy, dog food… that your social media pops up with ads for this kind of stuff. So incredibly eerie. Well, the morning after I got the news…after a night of zero sleep I popped on my airpods and Spotify to walk the dogs. The very first song that came up on my Daily Mix that truthfully I have never heard before (or don’t remember hearing) was “A Little Too Much” by Sean Mendes. It brought me to tears on my walk. That was fun. Listen to it. It pretty much sums it up for me. This is not just a little too much, its too damn much.

Warning to you… l get pretty personal in this post and share some things 99% of people would be too embarrassed to talk about. But, this is my reality and when I decided to start this blog I promised myself I’d be real.

It’s taken me a minute to recover from scope day. A bit of an emotional roller coaster for me with varying degree’s of news and I’ve pretty much had a stomach ache since.

First, the prep. The miralax/gatorade mix went totally fine. It filled my bag so quickly and soon was pretty clear. The enema part was not so great. I was to give myself three enema’s to clear out any remaining gunk in my colon. While not being used, the colon does still produce mucus and who knows what else. These are the colon symptoms I’ve been talking about. Giving it a break doesn’t really mean you avoid sitting on the toilet at all. There is some activity. Anyhow, the enema’s were excruciatingly painful. I was able to only do two and by two, I mean 1.5. It hurt so bad. And, you are supposed to be able to hold the saline inside you for a bit before you sit on the toilet. That was impossible for me. Several tears, holding my breath to get through it, and cuss words were had.

We got to the hospital and I got situated with the gown, IV, etc. before I headed back to the consent room where I met with both the anesthesiologist and Dr. G. I told Dr. G about the enema’s and he was concerned as pain is not normal. I asked if he would swing by after which normally doesn’t happen. He seemed really busy and just said “maybe”. I moved to the procedure room and remember the last few seconds when the anesthesiologist talked to me that he was going to make me comfortable. After that I remember nothing until I woke up. For the majority of my past scopes I do remember bits and pieces of the procedures and Dr. G moving me around to get the scope to do what it needs to do. He did do 3 scopes- the deep upper endoscopy, the ileoscopy, and colonoscopy.

When I woke up I was in horrendous pain in my lower left. So much so that they gave me a bit of fentanyl and called Dr. G to come in to make sure there were no complications. The fentanyl took the edge off and he did come in and felt around my abdomen. He didn’t find anything concerning so we don’t really know what the pain was all about. It mostly resolved although I have had a constant ache in the lower left since then. I do know he had a hard time moving through my colon so it could be some of that.

He spoke with us for a little while and I got different pieces of news. First, the small bowel looks great which is very comforting. I think cutting out the section of bowel they did last October did the trick. By great, I mean no active disease happening. I do have a decent amount of scarring in the upper part of my small intestine that is from past disease. He monitors that to make sure the scarring does not get worse and produce strictures that would cause blockages. The distal part of the colon looked pretty good. He said some minimal inflammation was there, quite a bit of scarring and pseudopolyps (healed ulcers that only occur in very severe disease), but that overall it was much better than before. The bad news is he was unable to get a good view of the proximal colon. There was a lot of mucus build up likely due to me not being able to complete the enema prep. He took some blind biopsies and we will go from there. He took multiple biopsies throughout the whole colon.

The most concerning piece of news (that I still need a full discussion on) is that there were 2 area’s in the very distal area (the a$%*) that were active. I know, TMI, but this is Crohn’s and this is what Crohn’s is all about- your butt, your gut, rectum, poop… It’s a really lovely disease let me tell you. He found an ulcer he thinks is healing and also a defect which he said could be either a sinus tract or beginning of a fistula. He asked me if I was having any symptoms of a fistula. A fistula is a connection between 2 parts. In this case, it would cause discharge- basically stool coming out when you pee. I am not having these symptoms, but it’s possible I am not having these symptoms because I am not using my colon. I have so many questions about this that I will ask next week. Either way, these 2 things going on in that location are discouraging news. Even if I do not have a fistula, an ulcer and sinus tract is not good. This is an area that you really, really, do not want Crohn’s to occur. The complications are endless. I have never had issues here. So… I am trying not to jump the gun and his optimism about my colon is not being overlooked, but I’m sure you can understand why I’m concerned. He said it certainly explains why the enema’s were so painful and that we’d talk about all of this at my follow up along with trying another medication. Hopefully, my knowledge and understanding of Crohn’s in this area is not as bad as I think it is.

I wish August 18th would come sooner so I can get answers. We need to get biopsy results back and I suppose the wait is giving me time to think about my questions and giving him time to come up with a plan and what he’s thinking about my success rate of reversal. I am very confident we are not ready for that and I am going to ask him not to sugar coat anything when I talk to him. I want the honest truth. Things do look a lot better than a year ago and I am grateful for that, but I have a very unsettled feeling about all of it.

Lastly, more on this later and why I feel this way, but if one more person tells me “at least you aren’t in pain anymore” I literally am going to slap them. Carry on…

The picture below resembles what seems to be a normal day for me over the past 19+ years. Prepping for scopes. I literally have had more than 20 colonoscopies, at least 7 upper endoscopies (or deeper), a flex sigmoidoscopy, and tomorrow we will add an ileoscopy to the list. The ileoscopy will be through my stoma. The upper endoscopy will be on steroids and go deeper with some sort of extension tubes so Dr. G can get past my duodenum. I believe so anyway. The approval I got in the mail indicated that so I will find out more tomorrow.

I had to call the office today and speak to a nurse to clear up some prep confusion. Ultimately, I am on a clear liquid diet, have to drink 64 oz of a Miralax prep, AND take 3 fleet enema’s tomorrow morning. WTAF?! I don’t even use my colon so am thinking this is quite overkill. That’s a whole lot of Miralax to clean out my small intestine. I get cleaning out the sludge of my colon, but 3 enema’s?! Oy. I imagine I will be emptying my bag like crazy tonight and in the morning. I don’t have any comments yet about how the enema’s will go because that is all new to me. I’m sure it will be amazing 😉

Three scopes will take quite a while to do as he will also biopsy everywhere. He’s re-staging my Crohn’s disease to determine how things are going, but also checking for any pre-cancer. With Crohn’s and also PSC (primary sclerosing cholangitis- a liver disease) I have a greater chance at getting colon cancer. If I had just PSC I would still require a yearly colonoscopy. Anyhow, hopefully they sedate me well enough for all of this. I’ve woken up during scopes before and it is not exactly fun.

I’m quite anxious about all of this. I did have my appointment with my hematologist and just as I suspected when I saw the lab results, things do not look good. I have only about 10% iron saturation (normal is 20-50%) in my blood and my iron is below 30. My ferritin is high. So, what this means is that I have iron in my body, but it is being held onto by inflammation and not making it to my bloodstream. This is called “anemia of chronic disease”. The bulging in my lower abdomen is still present, but is not a hernia. And, to top it off, my platelets are high and my WBC is creeping high as well. These are also indicators of inflammation.

I hope all of the above are not indicators something is wrong, but I am preparing myself for some disappointment. I suppose it’s possible that the inflammation is coming from somewhere else. I did get really sick after Iceland (strep and then a cold/cough). Perhaps my body was just rebelling a bit? This is my attempt at keeping the glass half full. Not sure it’s exactly working…

I guess not much I can do, but wait and see. I do not expect many answers tomorrow as the real story will be told by the biopsies. But, I do plan on asking Dr. G before the procedure to share any news he has so I don’t totally lose my mind waiting for my follow up on August 18th. It will just depend on how busy he is. He doesn’t normally have time to pop his head in afterwards, but I will at least get a report that should tell us something. I need to make sure I remember extra supplies too as they will remove my bag during the scopes and if they are anything like the surgeon team, they are not exactly stellar at measuring correctly for the bag.

Speaking of my surgeon…. he was just named as a Top Doctor in the 5280 magazine as one of the 3 best colorectal surgeon’s in Colorado. That’s great!

Stay tuned for scope updates soon…

“The trouble is, you think you have time.”- Buddha

This has always been a quote that has stuck with me. Life truly is short and there are no guarantees what the future will look like for you. Everything can change in an instant.

So, my advice to you is to go for it when it comes to travel, because you really don’t have time on your hands. I am not saying you have to be a world traveler by any stretch. Some of our greatest adventures have been weeklong road trips or just quick weekends away on the fly in a budget hotel. We’ve have several times like this with the kids and those experiences in a way are more meaningful and impactful than flying across the ocean. Just spend time together and don’t wait for the perfect moment. One thing I wish I would have done when the kids were smaller is skipping the soccer game, the lacrosse game, pulling them out of school for a few days… It’s truly ok to miss these things once in a while. I can guarantee a day together as a family doing something fun will have way more impact in the future than those 60 minutes on the field.

Anyhow, this post isn’t Liza focused. I wanted to wrap up the last few days of our trip with words so I can go back someday and live this adventure again.

After we left the farm up north we headed to Kolugljufur Canyon. While not as big as some of the other canyons, this one was pretty breathtaking as well. One thing to note… if you are thinking of going to Iceland and have small kids- wait! None of these places we went have safety features to prevent someone from falling in. We experienced cliffs that dropped to land or water everywhere. No guard rails, few ropes… Craig and I both said we would have been a nervous wreck on this trip if our kids were younger.

After that we went off to a dairy farm and had some ice cream that was made there before we headed to the Snaeffelsnes Peninsula. There we saw Kirkjufell mountain and made our way to Arnastapi. This was a bit of a bummer. There is a beautiful 3 mile cliff walk we wanted to do between Arnastapi and Hellnar. Craig and I attempted the walk that night, but the weather was terrible. We were hoping to get up in the morning to do it, but the rain kept coming. It is still a stunning coast though and the weather and fog added to the beauty in its own way.

We finally headed down to the Golden Circle which is the part of Iceland that most tourists hit. It’s relatively close to Reykjavik. I am glad we ended the trip that way and didn’t started. It was packed with people and tour buses. However, there were still some really neat places. We went to Pingvellir National part and visited the Almannagja Gorge. This gorge is a rift between the tectonic plates of North America and Eurasia. We also saw the Kerid Crater which while very buggy, was pretty neat. There was more to see on the Golden Circle, but we were pretty much done with the masses of people.

If you ever get the chance to go to Icleand, do it! It is probably the most beautiful place I have ever visited. From the many waterfalls- all very different, the hike at Mulagljufur canyon and other basalt canyons, weaving through the east fjords, staying in quaint towns in unique accommodations, making it to the north coast (our favorite), the rain, the sun, the multitude of landscapes, the food, discovering the love for Skyr icelandic yogurt, the .5 selfies that Ryan regrets taking on day 1 as it led to a daily requests, colorful Reykjavik, beautiful churches, crazy rock formations, kind people…. avoiding the blue lagoon and not seeing a single puffin. I have the perfect itinerary for you and would be glad to help you plan!

Lastly, the toilets there are the BEST! Now, I know there is no conservation of water happening, but the powerful flush that cleans the bowl so well definitely made emptying Liza a much more sanitizing experience for me!

Ooops, one last thing… we had a very clear day on the way home and had the opportunity to see Greenland from the plane. Craig took the picture below. Five years ago, at age 12, Ryan took the other picture of us flying out of Cairns, Australia over the Great Barrier Reef. The longest flight in the world is from L.A. to Singapore. The distance between Iceland and Australia is just 100 miles less. We really have been on top and bottom of the world!

“In like a lamb, out like a lion” seems to be fitting for our trip to Iceland. There are lambs and sheep absolutely everywhere. They actually surpass the number of people- 800,000 lambs vs 325,000 people. For every stretch of road we drove we saw thousands. Turns out the kids really like lamb and they tried lamb sandwiches, lamb soup, lamb cutlets… Ryan says I need to learn how to cook it now.

Liza ended the trip with a bang (or like a lion), literally. Our second to last night we stayed at Hotel Geysir which was a lovely hotel right next to Strokkur Geysir. There are several geysirs in this geothermal part of Iceland. For us, it was more of a stop along the Golden Circle between a few other locations we wanted to check out. Truthfully, the geothermal areas of Iceland are quite pathetic compared to Yellowstone. So, if that’s your interest, save your money and go to Yellowstone and the Grand Teton’s – another one of our favorite trips!

We checked in and the kids hung out while Craig and I took a little walk around the area, watched Strokkur erupt, and managed to not take a single picture. We then had the most amazing meal at the hotel restaurant. It was sooo good! I had a feeling I might pay for it later, but not in the way I did.

Our room coincidentally looked out at some of the smoking geysirs. We went to bed and around 3 am I woke up to a literal explosion from Liza. I was a mess. The bed was a mess. Getting to the bathroom was a mess. It was absolutely disgusting. I’ve had leaks before, but NEVER anything like this. It took an hour to clean up and re-apply a new bag with Craig’s help. Liza was still pretty active so getting a new bag on was a chore. I had to throw away my pajamas because there was no way to clean them.

Finally, after scrubbing the room and and figuring out how to sleep in a bed that was not exactly clean, I crawled in and burst into tears. I know things like this happen with ileostomies. But, it really was the last thing that put me over the edge. Liza did do pretty well on the trip, but not great. I was emptying more than I normally do at home, feeling quite nauseous a lot of the time, and just constantly being reminded she was there with me. The flight home was a bit challenging. I had to empty a total of 5 times while airborne on the 2 flights. Once it was when we were still on the ground waiting for weather clearance. It’s just a lot to deal with.

Don’t get me wrong, we had an amazing time and I am so incredibly glad and grateful that we took this trip. It was the trip of a lifetime and did bring me more confidence that while “crap happens” I can get through it. Also, I did manage a giggle after a few days that this explosion happened while several explosions were happening outside. I just sometimes wish my life wasn’t so dependent on Liza and that I could go back to a little bit of normalcy sometimes. That’s fair, right?

In two weeks I have three scopes that will give me some news about my future. I am still having some colon symptoms that I could do without. I also have quite a swollen belly, that is a bit lopsided (more bulgy on the left than right). And, to top it off my iron study I had done today was pretty discouraging with poor results. Hoping this will work itself out. On Monday I am seeing my hematologist who watches my iron and to go over today’s lab results. He always does an exam so I will have him feel around and if he’s concerned I’ll chat with Dr. G. Maybe just getting back to eating how I was before will help. I guess in the end, if things are heading south I at least was able to spend part of my summer on a fabulous trip with these fun, adventurous, lovely peeps below.

I love trip planning. It’s one of my favorite things to do and if money was no object I would do it all the time. As we made the decision to take this trip and venture around the whole country rather than the Golden Circle tourist trap I knew it would be a bit unique on it’s own. There are hikes and towns so far from Reykjavik that I was pretty sure we’d run into less people and that is definitely true.

Part of what I wanted to do was stay in places that are different from what we are used to. I nailed it! First, we drove up through the east fjords which were absolutely breathtaking as we wove around the sea in and out of the fjords. We stayed in a cute town called Seydisfjordur in the top floor apartment of an old schoolhouse built in 1943. Completely renovated inside it was a perfect spot to spread out and do laundry.

After a hike to another stunning canyon called Studlagil the next day (and a roadside bag dump) we drove north to Husavik, the whale watching capital of Iceland. Liza successfully and very happily soaked in a thermal sea bath right on the coast. The baths were heated sea water and only 30 miles or so from the Arctic circle! It was an experience I will never forget. Zero issues and gave me more confidence for future water adventures.

We then checked into a place called Laxhus. The owners have a farm and put 4 cube like accommodations on their property. Each slept 2 people and highly resembled shipping containers retrofitted as sleeping quarters with a bathroom. There were several windows that looked straight out at the sea and mountains which was incredible! This so far was my favorite location and the sunny day we had made it even sweeter.

The only bummer thing about coming up here is that I was really looking forward to whale watching. It’s supposed to be the best spot in all of Europe with several different species. While Liza emptying is going fine, she has given me a decent amount of trouble in the sheer volume of stuff to empty and a whole lot of nausea. Must be due to a combination of a lot of things, but it’s been enough that I just didn’t think I could stomach a boat ride. It’s really too bad because the weather was perfect and the sea nice and calm.

The next day we enjoyed another sunny day in Akuyeri which has an adorable town, great food, and pretty botanical gardens. This wrapped up the exploring part of the north and I think Craig and I both agree that this is our favorite coast.

After leaving Akuyeri we knew we had quite a long drive to tomorrows end goal so we stayed in the northwest. This was the most difficult location to find a spot. While I began booking places 4 months ago it took time and patience to find anything. There are so many farms up there so all places are guest houses or hostels. While I am adventurous, I do want my own bathroom! I think that’s acceptable when you deal with the unknowns of an ileostomy right?! Thankfully, a few weeks ago there must have been a cancellation and I was able to snag Stein Farm Family Apartment in Saudarkrokur. It was an apartment attached to a family farm home right on the coast. Another amazing view and great to spread out again. The owner was very nice and we got to meet and snuggle with their flat coated black retriever puppy who was just 3 months old. That fulfilled our puppy craving for a bit!

Those 3 nights are times I will never forget and I’m so happy that we got to experience something more unique. Memories like that are meaningful and will last a lifetime. I know the kids and Craig have appreciated getting out of our comfort zone a bit and away from the mainstream American way.

And, to top it off, with the unknowns and difficulty of dealing with an ileostomy, I was able to get out of MY comfort zone and feel a bit more confident and getting back to what I love. A life of adventure, travel, and experiencing new things :-).

Stay tuned for the last few days of the trip (playing catch up). Liza went off the deep end a bit.

I knew Iceland was going to be beautiful, but I don’t think I knew just how much. We are only 3 days into our 10 day trip and I am in awe with how many different landscapes there are, how green it is, and just how much it takes my breath away. It is wet, cold, the sun has only shown for a few minutes, but it doesn’t take away from anything.

Liza did great on the flight over the Atlantic. No issues with emptying on the plane at all which was such a relief! She was quite active the first few days and I was very nauseous, but I think I was dehydrated and couldn’t keep up with her. Much better today.

The first day I did have to empty in a zip lock in a parking garage which was a first for me. Turns out, that’s going to be a thing with me in Iceland. Happened again today on our hike. Not a big deal, but carrying the goodies with us until we can find a trash is rather disgusting. Not much I can do though! She did spring a leak this morning in the hotel just about an hour after i changed her out for a fresh bag. We didn’t do anything wrong. I think it was just faulty equipment. Thankfully it happened while we were still in our room.

We’ve been busy exploring and soaking (literally) in everything. There is so much to see. The waterfalls are everywhere pouring out from the glaciers. The beaches are black sand, the cliffs are amazing basalt columns, the canyons are massive and incredibly lush with green moss everywhere. The glaciers are a gorgeous blue, and while its cold and rainy, the mist and fog add to the beauty in their own way.

We’ve stayed at 3 great places so far and the food has been delicious. I’m not getting too adventurous with what I’m eating but Ryan inhaled a lamb sandwich that he loved and Emily really enjoyed her lamb and veggie soup tonight.

The favorite part for me so far has been a hike to the top of Mulagljufur Canyon today. It’s one not mentioned much in the guidebooks, but that’s why I chose it. A hidden gem off the beaten path. It was more beautiful and unlike anything I have ever seen. It’s going to be hard to top this one. Check out the photo’s on my Instagram!

Off to Hofn and the eastfjords tomorrow. I’m really looking forward to staying in Seydisfjordur tomorrow night. It is nestled between the mountains and is said to be the most picturesque village in all of Iceland.

All in all, I can say that while I was anxious to go on this trip, Liza has been treating me well, we are having a fantastic time, and it feels so great to be doing what we love. Traveling, exploring, laughing, trying new things, and just being together. It might slightly help that the kids get their own room most nights (rooms are tiny here!) so they can escape from us a little ;-).

(n) A strong desire or urge to travel and explore the world.

I am so lucky that my whole life has been filled with travel and adventure. Ever since I was very small my parents taught us the importance of spending time with family, friends, and seeing new places. We took countless road trips out to the east coast, explored the midwest, Colorado, Florida… As a teenager they took me to London and Paris. In college I was able to study abroad in England and got to travel to Scotland, Italy, Austria, Switzerland, and Germany. Thankfully, Craig has that same love of travel and when we had kids and they got a little older, we made the decision to show them somewhere new every year. Some years those were road trips. We did a New Mexico, Arizona, Grand Canyon, southern Colorado road trip. One year we did Yellowstone and the Grand Tetons. We’ve taken them on adventures to Hawaii, Belize, Seattle, Vancouver, Whistler, an east coast road trip from North Carolina to Boston, Oregon, Texas, California, Park City, skiing all over Colorado, and so many other states and cities. Every summer we go to Minnesota and during the Covid summer we crossed the border to Wisconsin and showed them that- not a long trip, but somewhere new! Our grand (and my favorite) adventure was in 2017 where we went to see my best friend Heather in Australia. We saw Sydney, Cairns, snorkeled the Great Barrier Reef, experienced a remote island.. Next year we are hoping to go back to Oz to visit her again and hopefully New Zealand. We’ve been planning this trip for a few years when we learned the Women’s World Cup soccer tournament will be there.

In June of 2020 we were supposed to go to Germany and Austria with Ryan while Emily went to Italy and Greece on a school trip. Well… we all know what happened to 2020, and 2021… Our United credit stood and last Christmas we were supposed to go to Kauai. Well… we all know what happened to me last fall… Three surgeries and months of hell did not put me in the best position to head out over the Pacific. Thankfully, United STILL honored our credit which now really will expire at the end of the year. So, we are going to Iceland! Can’t let thousands of dollars of plane fare go to waste right?!

Why Iceland? Well, it’s been a bucket list item for a while. And to be completely honest, long before it became so popular. We thought about going back to mainland Europe, but we needed to get something booked and with Covid restrictions still a little up in the air about 6 months ago we didn’t want to go to Europe and be stuck in one place. I feel like if you are going to mainland Europe you should knock off a few countries and we weren’t sure about traveling over borders. Emily wanted to go somewhere cool (as in not hot). She lives in Texas most of the year. I don’t blame her. I too, hate the summer heat. I haven’t heard one person say that they didn’t think Iceland was one of the most beautiful places they’ve been.

Most people stay a little more south and southeast. We will be taking Route 1 around the whole country and seeing just about everything we can see, staying at a new place every night. There will be waterfalls, beaches, canyons, glaciers, geothermal fields, caves, quaint towns, whale watching, unique food…. so many new things.

There will also be Liza. That piece of this trip has me quite nervous. I have flown on shorter flights with no problems, but never have I had to empty in the air. That won’t be an option for me. I have thought of ways to make things easier, but I know there will be unpredictable situations. I don’t know if I’ll be in remote places without bathrooms and will have to shovel a hole to bury my, you know what… I have no idea what the food situation will be or what will happen if I soak in a thermal bath. I’ve prepared extra supplies, have plenty of hydration packs, snacks, meds, and have mapped out a detailed itinerary, making sure our hotels and guest houses at least have private baths, but I know there will be hiccups.

If I’m being completely honest too, I have not been feeling all that amazing lately. My colon is not quiet and it has been causing me some significant bouts of pain with what I think is diversion colitis (or I hope is, and not active Crohns). So far, it’s mostly tolerable and I’m working through it without it disrupting to much of my day (nights and early AM are the hardest- probably because I’m lying in bed and not distracted). I’ve been gritting my teeth a bit, napping more, and moving forward. Scopes are 4 weeks away. I can get to that point where we will have answers and make a plan. I’ve had my 4th vaccine (yes, that did kick my ass) and I’m bringing some steroids in case things really go south. This is all just going to be one huge experiment and I am just going to roll with it. I have been looking forward to this trip for so long so in my eyes, there is no choice but for it to be a great one! I’m hoping it will be somewhat healing for me to get away and I will come back refreshed and feeling good again.

I plan to have my Insta page be busy with stories, posts, and hopefully do some blogging too. I won’t have my computer though so make sure to follow me on Ista @thisgirlsgotguts.

“Actually, the best gift you could have given her was a lifetime of adventures….” Lewis Carroll, Alice in Wonderland

If any of you read my last blog you will see the pic’s of the horrific skin cancer surgery I had done on my forehead. It literally looked like I had a bullet hole in my head and then a 2 inch gnarly red incision after. This led me to a new haircut with bangs which after a lot of angst I’m actually kinda enjoying. Fast forward to only one month since that surgery and I think you can say I probably have one of the best MOH’s surgeons out there. Dr. B is amazing. Check out my scar now. You literally can almost not even see it. I expected it to heal well, but thought it would take a lot more time than 4 weeks to look this good.

While my Crohn’s treatments have caused so many skin cancers, I am certainly happy to have this surgeon on my lengthy team of Anschutz doctors!

As for updates on the Crohn’s front itself…. I don’t have much. Dr. G wants me to repeat labs next week as my last set showed an increase in a few numbers we don’t like. I am getting really anxious for my August 3rd scopes where we re-stage everything. I am still having some colon activity that is worrisome, but I’m trying not to let that take up too much space in my brain.

I finally have avoided denial and are scheduled to get the 4th vaccine for Covid on Monday. Dr. G told me to do it about 6 weeks ago and I ignored him. I felt so bad after all of the other shots. But, today after finally getting in to see my PCP after several years of avoidance I was convinced. Dr. G did ask me to “please check in on your PCP every once in a while.” I never really see it as necessary, but now understand the importance to make sure I am up to date on everything else. And, to push me a little more into things I should do, but am avoiding. She was pretty clear that the Cellcept I am on is quite stronger than the old immunosuppressant I was on. In fact, the dose I take is the same dose as kidney transplant patients use. Ok, ok. I get it. I also realized that after scoping me in August, Dr. G may increase that dose even more so I better get my system ready. To top it off, we are traveling internationally in 2 weeks so boosting me up is necessary. Hopefully the 4th time is a charm!

I’m a bit behind on blogging so I’ll probably post again in a few days about a few more things I want to chat about… For now, I have become a hockey fan again and am going to watch the Avs hopefully bring home the Cup tonight! After going to 10,000 hockey games of my brother as a kid I sort of fizzled out.

It’s taken me a while to write this post as I wrap my head around the massive incision down the middle of my forehead. On May 24th I went in for my skin cancer surgery. The spot was biopsied back in February and results showed it was a well differentiated squamous cell skin cancer. This was the last straw for my Crohn’s medication, azathioprine. After probably 15 squamous cells over the years caused from this drug, enough was enough. Unfortunately, it had already done some damage and I had to have this cancer fully removed. Even more unfortunately, while it was well differentiated on top, as she started excising it she diagnosed it as much more complex and aggressive. Dr. B had to get it out in 2 separate surgery steps (about 90 minutes in between) and it left me with a 2 inch incision down the middle of my forehead. The nerve wracking part is because it was much more aggressive and not as well differentiated as she thought it would be the final sample was sent off to a lab for further analysis. She said we need to make sure I don’t need more treatment. We still do not have the results from that biopsy so I’m a bit anxious. I am so glad that I had the surgery and had it removed because she told me that the next stage would have meant that it had gone to my lymph nodes.

I was in an incredible amount of pain once the numbing medication wore off. I am not allowed to take ibuprofen (it can cause stomach bleeding and is dangerous in Crohn’s patients), but I very quickly got permission from Dr. G to do a few days worth. I don’t know if I could have handled the pain without it. I did try a few of my leftover narcotics from my bowel surgery, but I absolutely hate that stuff. One dose was enough for me to just ask Dr. G what to do. Thankfully he got back to me very quickly.

On another note, yesterday was 9 months since my bowel resection and re-creation of my stoma, now called Liza. I can’t believe how fast time goes. The nights can be very long for me as I struggle falling back to sleep from emptying, but the weeks and months are flying.

I also realized that today is exactly two months away from the big scoping day. I am scheduled for an upper endoscopy, colonoscopy, and ileoscopy (scope through stoma) on August 3rd. It was funny scheduling with the gal at the clinic because she had to add all of these up and figure out how much time to book Dr. G for. Usually colonoscopies are very quick, but he needs 90 minutes for all of this chaos. Sadly, while I don’t even use my colon I still have to do all the yucky prep to make sure my small intestine is clean! UGH. I thought I could dodge that bullet. Not only do I get to drink prep and dump my bag until it is clear, I get to do two enemas for my colon. I mean seriously…. I have had at least 20 colonoscopies in my life. Can’t I get a little break from the prep?!

I am very anxious to see how things look. Dr. G will do several biopsies which I will have to wait for results on, but he should be able to give me some information that day. The biopsies tell the real story though and I will have to wait until August 18th to see him and talk through the plan moving forward. It’s interesting because for soooo many years I was always worried about my small intestine biopsies because that’s where my Crohn’s was. It was never in my colon. Now, I only am worried about the colon biopsies. Of course I should be concerned about all of it, but I’m hung up on the part that is resting. I hope that between now and then things are quiet.

I’m excited to see what Emily thinks after she shadow’s Dr. G next week. This past week she has been taking a Wilderness EMT class at Anschutz and got the opportunity to shadow in the ER. She was exposed to so many neat things and scenarios all week and is now up in the mountains learning more. It’s a lot of trauma type stuff. It’ll be quite a different experience in a GI clinic next week, but it’s such a great opportunity to help guide her through the whole pre-med process.

Lastly, before I sign off I have included a few pics of my skin cancer surgery. Don’t scroll further if you easily get grossed out :-). I have a haircut next week and as you can see, it might be time for bangs again…