Today marks the start of Crohn’s and Colitis Awareness week. It seems that every disease, illness, or condition has one of these weeks. I think we can all agree that we are aware of our situation 365 days a year, but it’s nice to have time set aside to recognize it a little more.

It’s also the time of year where many of us are looking at finishing out the year donating to certain causes, charities, giving trees, etc. I know I wish I did a little better and didn’t wait until December to process most of my contributions. I do appreciate Colorado Gives Day on December 7th though and the nationwide giving day was yesterday which I took a part of.

If you are so inclined and would like to help out the CCFA I have a link below. CCFA is the nationwide foundation.

https://www.crohnscolitisfoundation.org/donate

I donate to the nationwide foundation each year, but I mostly donate specifically to the Crohn’s and Colitis Center at the University of Colorado Hospital where I have been a patient at for almost 8 years. My doctor started this clinic. I meet with one of the foundation people every year where she updates me on what is going on with research, educational programs, treatments, etc. within the clinic. Currently they are using donations to fund the Biobank for Crohn’s and Colitis which is extremely useful. It is a repository that stores human tissues for purposes of research to help in understanding health and disease such as how our genes affect the process. Another area the funds are used for is for the fellowship program. If you would like to help out more locally please go to.

https://giving.cu.edu/fund/crohns-and-colitis-center-gift-fund

We all have foundations that are close to our hearts and really just encourage you to find something to support. Each and every one of us has friends or family that is somehow effected by life threatening illnesses, chronic disease, job loss, and more.

My update for the past few days is that I recovered from the 3rd covid vaccine, but do have to slow the roll on my Crohn’s meds. My Monday labs confirmed extreme immunosuppression so I need to cut my azathioprine in half. Dr. G stated when my lymphocytes get below .4 it’s dangerous. Mine are .3. I am supposed to start my Simponi next week (the injections), but we shall see… Not the greatest news, but might explain some of my nausea as well.

Apparently I have the most inconvenient digestive process. I am getting quite tired of Liza being fairly quiet during the day and then picking up steam around 7 pm through 5 am. I am getting up at least two times during the night to empty my bag and never quite get back to sleep peacefully. I’m sort of half asleep all night because I worry about leaks. I shouldn’t worry because I think I finally have a good wafer system that has been holding me 3-4 days, but it’s all a bit unsettling.

The timing of emptying seems like a vicious cycle to me. I’m not sure how to get the process to reverse. It’s as if everything needs to build up before it wants to come out. I guess the good news is that prior to this whole ileostomy I was getting up to go to the bathroom in so much pain and I’m not in pain anymore. I just wish I could have a good night sleep.

Last night was especially tough. On top of Nocturnal Liza, I have been dealing with the 3rd Moderna vaccine side effects. Ugh. I reacted terribly with the second vaccine with 48 hours of high fevers and feel pretty crummy this time as well. It’s not as bad as round 2, but I feel like I’ve been hit by a truck and had a 101 degree fever. Because I’m immune compromised I received a full dose for the 3rd one and not just a booster. My GI isn’t even sure what benefit I’m getting from the vaccine due to the medications I’m on, particularly prednisone, but I still got it. He wanted me to wait until I was at 20 mg of prednisone which I finally am at. I sure wish I knew I’d have full advantage of it if I was going to feel this crappy. I also really hope this is it for the vaccine for a while. I’m not sure how much more I can be sucker punched.

So, while I wanted to get more done today and go for a walk with friends I’ve been on the couch since 4 am. Thank goodness for Apple TV and Netflix. No bueno to having to edit Ryan’s AP Lang essay. I mean he only had 8 days to write it. He now wants to watch the Bronco’s game and I’m not a great editor with a pounding headache, but life goes on…

I hope everyone had a wonderful Thanksgiving and were able to spend time together and give thanks for so many wonderful things!

It has been one heck of a year, but I have so much to be thankful for! Yes, my health is not exactly ideal right now, but it could be SO much worse. I am doing just fine and more importantly had a full Thanksgiving meal including my absolute favorite, apple pie. Boy, was it delicious. For lunch I had all the traditional food- turkey, mashed potatoes, stuffing, carrots, green beans, bread…. I even had a sliver of pumpkin pie.

It’s interesting how many people think I can’t eat normally and I guess when I think about it, that would be a common reaction. Liza is placed at the very end of my small intestine. I’ve lost a few feet of it over the years, but there is still probably 18 feet for food to go through and digest before it empty’s into my bag. So, it’s really all broken down and has no trouble coming out. I do have to still be careful and avoid raw fruits and veggies, but other than that I can eat anything.

I am still having really bizarre cravings and am letting my body decide what to eat which continues to be a ton of salt, including nachos. I have been suffering from terrible nausea and reflux type symptoms. I’m not totally sure if those are due to medications or disease higher up, but it’s been a bit rough. I am trying to figure out what eases the symptoms. So far, not much except milk products. They seem to help coat the stomach. I am on a prescription antacid, but it doesn’t do a ton. I have a message into my GI because there are days I am absolutely miserable. So much so that I’m so distracted that I don’t even really notice Liza anymore.

On a positive note, I have really gotten the hang of going out and emptying my bag with barely batting an eye. Going on errands or to friends and families houses is no big deal. I’ve got my latex glove stash in my purse and the process is pretty quick. I am thankful for that.

I am also thankful that I have not taken Tylenol in probably 2 weeks. I really am not in any pain anymore which is such a relief. I am a bit uncomfortable with the pressure of the whole system I wear, but not in pain. Hopefully the nausea subsides soon and then life will be so much better.

Oh wait! I lied. I was in pain last night. Pain from laughing! We went to a friends for dessert and played some games. I haven’t laughed like that in 3 months and my belly sure felt it. I ended the night with a heating pad in bed, but it was absolutely worth every laugh. Still a bit sore this morning…

It’s been wonderful having Emily home for Thanksgiving break. Having us all together makes my heart so happy. You know I must be feeling better if I made my family do our yearly family pictures. It was a windy day, but I’m excited to see how they turn out. It’s something we do every year and while it annoys the heck out of them as we try to figure out what to wear and attempt to have a natural smile after 150 camera clicks. However, I know they will be thankful someday we have those pictures.

We’ve all been through a lot and have come a long way in a few months. I count my blessings every day.

Boy have I learned a lot about how the body works on this journey! I knew some of what the colon did, but not quite to the extent I was about to learn when I had surgery to put it to rest. Everyone warned me in the hospital that becoming dehydrated can happen very quickly when you are resting your colon. Your colon absorbs all the water from your food and helps your body hydrate. On top of water, your colon also absorbs salt which is very important for muscle and nerve function. It has been estimated that a person with an ileostomy loses about a teaspoon of table salt per day. That’s a lot!

Upon leaving the hospital the surgeon and nurses definitely spoke to me about oral rehydration solutions. These are various recipes of drinks with added salt in them to replace some of what is lost without my colon. I felt like I was hydrating enough and honestly didn’t think much of them, or use the recipes at all, until about a week ago.

I don’t know if it’s because I have become more active and need more salt, but cravings are the real deal! I keep thinking back to when I was pregnant with both kids and had to have strawberries and Panera chicken noodle soup with Emily and burritos with Ryan. These cravings must be fulfilled quickly!

So, this week I have resorted to sipping on a cranberry juice, water, salt rehydration solution and filling my interesting salt cravings. I hate to admit this in public, but yesterday, out of nowhere, I HAD TO HAVE MCDONALDS. I stopped and got a cheeseburger and small fries, pulled into a parking lot, and ate every last bite. I have not had McDonald’s in years. Honestly, do people really eat there anymore? There are so many other great burger joints around that are much more natural and probably way better for you, but no, I had to have McDonalds. It was delicious. Then today, I needed nachos. I thankfully had tortilla chips and shredded cheese so I made myself a plate. It too was delicious.

Don’t worry, I’m still eating healthy things such as smoothies, dinners with the family, etc. But, for now I am going to let my body tell me what it wants and hope that these cravings don’t hit me at 3 am. Interestingly, when I had labs done yesterday I was low on sodium. Our bodies are smart!

I still can’t believe I admitted to inhaling McDonalds yesterday, but when I started blogging I committed myself to not holding back. You’re getting all the good, bad, ugly, and slightly embarrassing stuff from me.

Liza has been a bit of a pain in the butt the past few weeks. There is a big dip between my large incision and Liza so my wafer does not lie flat. Hopefully with time the scar will settle down a bit, but in the meantime it is making it difficult to create a nice seal. This is causing leaks and skin breakdown which is no fun. I can make it up to 48 hours between changing everything out, but I’ve had a few less than 48 hour success stories lately. Ideally I’d like to make it 72 hours because all the extra leaking and changing is not good for my skin.

Craig and I are trying all sorts of variations of angles with the wafer, barrier rings, etc, and we will keep trying. With the suggestion of my Ostomy nurse Kerri, I picked up a different brand of supplies at a medical supply store today. Never did I think I’d be spending so much time on the phone, online, and now shopping around town for what I need. It’s a good thing when we remodeled our bathroom earlier this year that we decided to add more storage. I can run a business with all the stuff I have collected in just a few months.

Most of the leaks have been in the middle of the night which is hard. I am so grateful for Craig who always gets up and helps me without any sense of annoyance or frustration. It is difficult for me emotionally and sometimes I’m in a bit of pain, but he never wavers and is by my side 100%. I am so lucky. The process involves a lot of supplies, measuring, cleaning, cutting, powder for the skin breakdown, laundry, sometimes changing sheets…. It’s not a quick 5 minute middle of the night ordeal and falling back to sleep isn’t easy. Setting my alarm to empty my bag is hard enough so could do without the extra leaks. I know Craig could too.

I did have one leak last week while walking with a friend and somehow didn’t notice until I got home. I was wearing my stealth belt and had a tighter tank top on so it all stayed within that. What a relief! I am so worried about my first leak outside the home, but I know it’s going to happen at some point.

On that note, Liza did successfully make it through six lacrosse games this past weekend for Ryan’s tournament. Below is a photo of all of the supplies I need to make sure I have with me. Plus, a backpack of extra clothes. I successfully emptied my bag several times at the tournament and boy was I thankful for a very clean large bathroom with many stalls! The toilets were about four inches off the ground though so my squat to empty was VERY low. The other bad part was that in my haste and worry to make sure I had everything I needed for Liza I forgot a coat, blanket, and anything warm for the weekend. It was freezing and windy! Leave it to Craig and my other good friend who saved my bacon with a coat and blanket. If you know me well enough I usually have multiple layers on to keep me warm. My kids make fun of me for the four coats I wear skiing.

https://thisgirlhasguts.com/wp-content/uploads/2021/11/supplies_21-1.png

Ever since I was diagnosed with Crohn’s I have had a hard time keeping my weight stable. When your small intestine is so damaged it has a hard time absorbing nutrients and keeping up with the nutrition you need. I did my best and my body definitely did it’s best for me. When I was pregnant with Ryan I spiraled into a Crohn’s flare and was considered high risk. I had ultrasounds every few weeks to make sure he was growing because I was not really gaining weight. Turns out my body was taking care of him and giving him literally everything from me. In my entire pregnancy I gained 12 pounds. He was 6 pounds and full term!

I have continued to manage over the years and have learned to get the nutrition I need to be able to be as active as I’ve wanted. Sure, I should have had a few more pounds on me at times, but there is also the balance of feeling good and not consuming things that would send me into a downhill spiral. I also take ton’s of multivitamins and get labs regularly to watch things such as iron, b12, d, electrolytes, etc.

I started to lose a bit more weight in the middle of this past summer and then when I spent 3 weeks in a hospital bed I lost even more. It’s crazy how fast every single muscle in your body atrophies in such a short time. Then, when I was finally out (after all of these hospital visits) the struggle to eat was very real. I am doing so much better with eating (like night and day from 2 weeks ago), but the weight is not coming on. Right after my visit with Dr G. I stepped on the scale at home and was 98 lbs. It really is depressing. Clothes don’t fit and I feel disgusting. While I know there are people out there who wish they could lose a few pounds, I am just praying that the weight comes back. It goes both ways and I hope we can all understand that the struggle has two sides.

This morning I had a Zoom appointment with the long time GI Dietician at CU which went pretty well. I didn’t come out of it with any magic amount of calories, fat, protein, etc. I’m supposed to consume every day. She didn’t ask me to make a food diary or eat certain things. She put my mind at ease. She re-iterated what my body has been through the past 2.5 months and told me to “just maintain.” My body is using so much energy right now to heal. I am only 3 weeks out from the most major of all of my surgeries and if I can just not lose anymore weight I am heading in the right direction. The worst thing she wants me to do is eat too much and push my nutritional needs too far. I’m eating quite a bit. Several times a day, the dinners my family eats, lots of peanut butter, protein bars, smoothes, meat, milk, yogurt… I’ll get there.

We have another appointment on the calendar for early December. At that point if the scale isn’t ticking up a bit we will dive deeper into specifics of what I can and should do to make it happen. Until then, I feel a lot better that things are ok for now. I will continue to do my best, but don’t really need that extra stress as I continue to heal.

Lastly, I am not allowed to lift anything more than 20 lbs or engage my core for 6 weeks. Yesterday, I really wanted to start doing some lower body exercises. I went to the basement and started to do some things and noticed right away that literally everything engages your core. So, I stopped! I’m not going to screw this up. I will wait the 3 more weeks and listen to my drs. For those of you who know me well, with past running injuries I have not listened to this advice at all. Not this time folks. I will not be that stubborn again. Not worth it. I’ll go for my daily walks and in 3 weeks I’ll be able to walk both of my pups as well. Two big golden retrievers and bunny rabbits are not exactly good for my belly right now- too much pulling!

On November 5th Dr. G reviewed my labs and sent me an email to get back on my Crohn’s meds! I am thrilled! I am also able to start tapering my prednisone dose by 2.5 mg a week. I am hopeful that a smaller drop in dosage will produce less steroid withrdawal symptoms.

He submitted an approval request for Simponi so when/if we get the green light for that I will add that into my regimen. Insurance is always a struggle. Ryan has Crohn’s as well and getting his Remicade infusions approved to be done at Children’s has been a nightmare. Our insurance wants him to have them done at home or another facility. Neither option feels right for us due various reasons. So far we have been able to fight this successfully, but it’s been a major pain.

We will continue to follow my labs weekly to make sure my lymphocytes don’t get too dangerously low. They are still low and my WBC and platelets are still high, but everything is being watched closely. This means mask wearing for me is still very important.

There are things I want to get back to doing, but probably will wait a bit longer due to my labs. I did start back at the Broomfield Children’s Library with Frisco. He is one of the ARF (Afternoon Reading Fun) dogs and young kids read to him most Thursday afternoons. I have been volunteering for the past few years at Good Samaritan Hospital as well. This, by far, is the most rewarding experience for Frisco and I, but I’m not quite ready yet. Once I go back I will make sure that I am not anywhere near a COVID floor which really was the case already. It’s more than that though. I admit that I have a bit of hospital PTSD. At my surgery follow up with Dr. V last Friday (everything looks good by the way!) I had a lot of anxiety. I wanted to get out of that place as fast as I could.

I also get my iron checked regularly. About once a year I need a round of a few iron infusions. I had some in July and am not there yet, but anticipate needing some in the next few months. My iron is getting towards the bottom of the range.

Finally, since my hospital discharge I am back on all of my multi-vitamins that seem to go down and digest just fine. I take about 15 pills of various things every morning and already I have noticed they are helping my energy a bit. In a few days I have an appointment with a nutritionist and will fill you in soon!

My bag can be concealed pretty well. As long a it’s not full it fits pretty close to my belly. The black belt is called a “stealth belt.” The black piece hanging down has a zipper. So, I just unzip, lean over the toilet and empty. It also makes the bag feel really secure to me. This is especially important when walking or when I eventually get back to working out, running, and skiing.

As I said once before you cannot go through a nightmare like this without a sense of humor. Waldo is dead. He was not meant to be and we are not going to mourn him. Instead, we welcome Liza, named by a wonderful, quick witted friend of mine. Coincidentally this is the same creative person who brought unicorn, rainbows, and glitter to my hospital room :-). Remember the song? Well, this version is “there’s a hole in my belly, dear Liza, dear Liza…” I think it’s perfect. He became a she, and it’s a much nicer name. So far, Liza is behaving well.

Now onto educating all of you about the nuances of a stoma and all of the gear you need to go along with it. This whole ordeal is quite the learning process and I’m still learning something new almost daily.

First, all the supplies to attach to Liza and keep her healthy. There are various types of bags that stick on or clip onto a wafer that adheres to your skin. They come in clear or with a bit of a cover. I definitely prefer the ones with the cover so I don’t have to look at my digested stuff all the time. To empty the bag you just lean over a toilet several times a day (face forward with a decent squat) and open up the velcro and it all comes out. Then you close it back up and move about your day.

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About every three days (hopefully not less than that) you need to change out the wafer and make sure everything looks ok. You take everything off, clean around Liza, tend to any skin breakdown issues, measure Liza, cut a hole in the wafer the appropriate size, fill any weird skin gaps with waxy material to prevent leaks, put the wafer back on and attach the bag. For the first six weeks Liza will shrink a little so measuring is important. There is a piece of paper with various sizes of holes on it. You choose the hole that fits best and cut that same size hole in the middle of the wafer to place over the stoma.

The timing of all of this is really important. Ideally you do this in the morning before any food or drink so that Liza is quiet and not trying to output anything at the same time. This doesn’t always happen though. For one reason or another there will be leaks. I have woken up in the middle of the night a few times with Liza (or Waldo) leaking all over my belly. It has even happened while sitting at the kitchen counter. It’s an embarrassing, frustrating, overwhelming, mess when this happens. I am forever grateful for Craig who helps me every single time for the messes and every single planned change as well.

My biggest fear which I’m sure will happen at some point is a leak while I am out in public. I have an emergency kit in each car with extra supplies and a change of clothes. The good news is I have mastered the public restroom bag emptying. I just make sure I have latex gloves and wipes in my purse.

On October 28th Craig and I drove back to UC Anschutz for a visit with Dr. G at the Crohn’s and Colitis Center. I was anticipating this visit for a few weeks and pretty nervous at what his thoughts were for my future. I have been so lucky to have him as my GI over the past 7 years. He has brought me out of some rough flares and is always looking for the next best medicine to get me healthy again. On top of that though I never, ever feel rushed when I am with him. He will spend an hour with me in person or on Zoom, no problem. He will call me on a Friday afternoon or respond to an email on a Sunday evening.

As I said before I have had Crohn’s since 2002 and over the years have been through multiple times of remission, multiple flares, countless medications, and a surgery in 2011 to resect the end of my small intestine. Many people with Crohn’s become non-responders to their medications over time. This has happened with me through various biologics such as Remicade, Humira, Cimzia, Stelara, and others. The combination that did work well for me was oral Azathioprine paired with Allopurinol and a monthly infusion of Entyvio. The Aza/Allo wreaked havoc on my skin though and I developed so many squamous cell cancers that we stopped it.

Prior to this appointment Dr. G had told me that once I was through surgery we should re-try the Aza/Allo combination again because that is what helped my gut. I don’t love the idea, but I agree. My gut is going to win on this one. Hopefully, my skin is in a little better spot because of a new dermatologist who has done various peels and treatments to get my skin in a better spot. I told him I want to be as aggressive as we can to get the disease under control and he also wants to do that. In addition to this oral combination he plans to prescribe Simponi which is a biologic. I will be giving myself shots at some point in the future.

What I was most nervous about though was hearing his current thoughts about my chance for a reversal someday. Meaning, re-connecting my small intestine to my colon and going back to the plumbing we all have and no bag. Prior to surgery he told me that my chance for reversal was “not 0%”. This was terrible news. Dr. V had given me slightly better chances and now with nothing going to my colon, old disease taken out, recent CT scan and the agreement we will get more aggressive on treatment I was hoping my chances were better.

The news is better! He is now giving me a 50/50 chance at reversal. I will take that news! I’m not sure when we will re-evaluate how things are going, but if my chances went up that much I decided to leave it at that for now.

Upon writing this note, Dr. G wanted to see where my labs were at before we re-started the Crohn’s meds. Because they are immunosuppressive drugs and my lymphocytes are already very low he wants to be safe. I am really hoping that things look better next week.

I was so happy to be home on Monday, October 25th! I truly mean it when I think this was the answer I needed. It’s a bit hard to look at the huge scar and coughing and sneezing hurts like hell, but to not be able to feel every drop that enters my bag is so comforting.

We are so thankful for all of the meals and gift cards we received over the past few months. There is no way we could have done this without the amazing help of our friends. After this surgery though I was feeling ready to get back to the kitchen. I was still eating carefully, but each day brining a bit more courage. By the weekend I told Craig I wanted to go out to eat. We went to an Italian place in Broomfield and I had spaghetti and meatballs! From that night on I have pretty much cooked and eaten what Craig and Ryan are having. Small amounts and still a ways ago overall, but I’m getting there.

Every day I also have been going for walks where I am increasing my distance and am up to a bit over three miles. Soon I will start to get back to some strengthening exercises. I am not allowed to lift anything above 20 lbs for 6 weeks and cannot do anything that engages my core. There is still a lot of discomfort and tightness feeling in my abdomen and it is very hard for me to picture a day where I’ll run again, but I’m trying not to think of that yet. I’m a long way from that and I am trying to feel confident that I’ll get there someday. Hopefully I will be able to ski this winter! I’m also dying for the day when I can walk both of my sweet pups again. I can handle one of them, but both are too hard with the pulling. I want to give Craig a break, but he never complains. Of course he doesn’t.

The doctors did sent me home with narcotics from the hospital, but after two days I didn’t need them anymore. I hate narcotics and have a pantry full of them right now. At this point I was taking Tylenol three times a day and still on Lyrica. Really, my heating pad does most of the heavy lifting.

Another thing I am very happy about is that while high, the placement of my stoma is not causing any issues. I am so glad it wasn’t placed in the lower right quadrant because it would make buttoning pants very hard. The bag would also hang out and be hard to conceal. My stoma is high enough that I can button my pants and wear a belt. There are also various types of wraps and ostomy belts to help make your bad feel more secure and tight to your body. Often, you can’t even tell I have a bag on.

The healing process, but looking pretty good overall.