“Today me will live in the moment, unless it’s unpleasant in which case me will eat a cookie.” – Cookie Monster

Or, in my case, cake. I don’t really even like cake, but I’ve had a lot of it this week. A slice every night leftover from Ryan’s lacrosse party we held at our house. I’d much rather eat apple pie or warm chocolate chip cookies, but after two crummy appointments this week, I’m going with cake.

First, my dermatology appointment on Monday. While I have a few dermatologists at Anschutz who help me deal with skin cancer and medication reactions, Cathy is my Boulder gal who tends to diagnose everything. She was quick to point out that my skin is worse than she’s seen it before. The psoriasis from my Simponi is just getting to be too much to deal with. I now have spots on my scalp and worse, a few under the wafer that sticks to my skin and holds my ileostomy bag. My arms and lower legs/ankles continue to be a mess as well. She also took a few biopsies which thankfully were not full blown squamous cells, but were rapidly headed in that direction thus two slices out of my hand and lower ankle. Ouch. While I have stopped the Crohn’s med that was causing most of my skin cancers, my skin is just so damaged and cannot recover with the addition of new immunosuppressive medication. I will finally be going into surgery on Tuesday to have the gnarly cancer removed from my forehead by my pal, Dr. B at Anschutz. Stay tuned for the update on that. It will not be pretty.

Second, on Tuesday I had my GI follow up with Dr. G. While I wanted to give Simponi a bit longer of a try with the help of the GI derm who is experienced in medication reactions, he was fairly certain I wouldn’t be able to stay on the Simponi. He was right. He tends to know what he’s talking about and is nearly always right ;-). So, goodbye Simponi. It’s just too hard on my skin. The plan is to only stay on the Cellcept (the drug that replaced my skin cancer causing Crohn’s drug) and scope at the end of July or early August. He will scope through the mouth and through the stoma to see my small intestine. He will also scope my colon. If he sees active Crohn’s disease we will have to go back to the drawing board and discuss other medication ideas that he has. I have agreed with this plan with some trepidation. I am very worried that Cellcept, a drug he has not really ever used for Crohn’s before will not prevent my disease from getting worse. However, he assured me that it is in a similar category of my old medication and has confidence that it will work. Or, at least not make things worse until we can give my skin some time to recover and then we can add more if we need.

On top of discussing the need to stop the Simponi and save my skin we talked about some other colon symptoms I am having. Without getting into too many details it could be one of two things. The first is diversion colitis which is non-specific inflammation of the mucosa of the defunctioned (non active) colon. The second is possible continued disease activity despite the colon taking a break. The only way to truly diagnose what is causing my symptoms is scoping which we are not ready to do until I am on the higher dose of Cellcept for 3-4 months. This discussion gives me the most worry. Liza (my stoma) is not quiet. She constantly keeps me busy with her need to empty multiple times during the day or night. It’s enough to deal with so to have my colon decide to join in on the activity is really tough. She needs to sleep. Maybe I need to come up with a name for her too so I can read her a bedtime story or something. My symptoms do not hit me daily, but they have increased a lot over the past few weeks that it is definitely at the top of my mind. Also, at the top of my mind… there was no discussion on Tuesday at the possible chance for reversal. Things are just not going in the right direction with the medication changes and now these new issues with my colon. I hope there is still hope, but Dr. G did not bring it up and nor did I. It did not seem appropriate and that made me really sad.

So, by embracing the suck, I am eating cake. And, now with my cake I am going to brainstorm a name for my colon friend who has decided nap time was over.

On a positive note, Emily is home for the summer- yay! She killed it with nearly all A’s, including organic chemistry. She will be shadowing my GI at Anschutz this summer and also other doctors in the ER and elsewhere through a class she is taking. Ryan is one week away from wrapping up junior year. He cannot wait! He did just wrap up an amazing lacrosse season where his team made it to the quarterfinals in the state tournament. I do not love watching replays of some of the hits he takes, but I do love watching him play. By the end of his senior year I might actually understand the rules.

I will continue to try to keep my chin up and pray that the winter snowstorm expected this weekend is a lie. It’s 86 today and we are forecasted to get 8 inches of snow on Saturday. That’s Colorado for ya.

I am proud to say that Liza (and I) set a goal and we reached it! A huge part of my life over the past 15 years or so has been running for fun and running races (also for fun because I’m slow and that’s ok). I have run a few marathons, countless half marathons, 10 milers, 10K’s, 5K’s… I feel such a sense of accomplishment when I cross the finish line. I don’t win age groups or come even close, but I challenge myself with the races I choose and go for it. So, in April I decided to go for it again and signed up for a Mother’s Day weekend race (a tradition of mine) – the 8 mile Greenland Trail race. I know, I know… why didn’t I choose a 5K or a 10K to start? The truth is I have a hang up on those distances. They are way too crowded since they are so common. Plus, in my eyes, not challenging enough. Because they are so popular they must be easier right?! 😉 Hindsight IS 20/20 and I probably should have gone with a 10K, or at least I should have read the fine print for this race. It started at 6,900 ft and the peak was at 7,500 ft. Ummm, I live at 5300 ft. That’s quite a bit of elevation gain to start higher and end higher! Oh well.

I was doing great with the training runs until about two weeks ago when I doubled my oral Crohn’s med per Dr. G’s orders. This med is an immunosuppressant and in particular it is used with transplant patients. We are using it for Crohn’s now because there is reason to believe it can help there as well. Anyhow, the doubling of it has really taken a toll on my body. So much so that I almost canceled my race, but I knew how disappointed in myself I would be if I didn’t give it a try.

So, on Saturday, despite the heat (it was 89 in Denver that day) and forecasted winds, Craig and I headed an hour away to Larkspur with the pups so I could run. I hydrated and hydrated and hydrated! Both before the race and during the race. It is so important I do that since I am not using my colon. There was SOOOOO much uphill. Boy, was that tough. I stopped a few times to drink, walked a bit, stretched once, but I did it. And respectfully so! With all of my stops and walking I still finished in good time and definitely beat my goal that I had when I was at the start line. I had no expectations and I was happy with my finish time. Emptying Liza was absolutely disgusting in the porta potties, but it is what it is. I did not have to empty during the race and overall I think she did pretty well. There was one point around mile 5 that I felt a bit funny in my head, but I stopped, drank more, and that feeling went away.

I’m not sure I will do another race this summer. It’s just too warm and my risk of dehydration is too great. Plus, my skin and sun just do not go well together. But, to have that first race under my belt and some new swag for my medal wall feels pretty good. I am still very, very sore as my hamstrings took a beating, but it means I pushed myself and that’s what I needed. There are so many emotions still inside of me about this whole ileostomy experience and what my future might hold so pushing myself and letting those emotions out during a run is important.

As for the Crohn’s itself… as I said last week, I have a lot to talk to Dr. Gerich about at my appointment on May 17th. I am overall doing ok, but have some concerns about some symptoms in my colon. I did have a lengthy phone call with the GI dermatology specialist last week as well. I sent her a photo of some of my psoriasis spots with some questions about when I can expect the spots to get better. In summary, after talking and her looking at my photos, she said the ideal thing would be to stop my Crohn’s injections (Simponi) to save my skin. However, she understands that we need that med for my Crohn’s. So, she is going to brainstorm some ideas with Dr. G and see what we can do. I am fairly confident at this point that we likely will have to stop the Simponi. It’s just too hard on my skin and truthfully Dr. G wasn’t all that thrilled about me continuing it, but I wanted to give it a try (with the help of the dermatologist) and hope for the best. Thankfully, Dr. G always seems to have a new med or idea in his back pocket, but it does worry me to possibly have to change again. I just really want to be evaluated for reversal and can’t without a solid and consistent treatment plan. Not much I can do at this point though, but trust that the doctors will do what they need to get me there.

Oh! Once last thing. As I also said last week, Liza and I wanted to practice soaking in a tub. Well, with the help of a neoprene belt we did that last night. Good news is there were no leaks during the soak and I felt pretty confident doing it. The bad news is, I woke at 4:00 and yikes, my contents were soaking through the wafer and nearly coming out on my skin. I could see it happening. Thankfully, I was able to catch it in time, but did have to change out my entire system again when I had just changed everything yesterday morning. Usually I can go 72 hours, but this one lasted less than a day. I had woken up at 1:00, but did not feel full enough to empty. I wonder if I would have emptied then if I would have stopped the leaking? No way to know and I guess I would rather have a leak at home than when I am out and about during the day! Anyhow, it shakes my confidence a little, but at least knowing it didn’t happen while I was soaking and I can prepare for the future. When I do take those soaks in Iceland this summer I will probably have to change out my appliance that night or first thing the next day no matter if I’m on day 1 or day 3.

This post is a bit of a mishmash of stuff including random things people ask me about my ileostomy.

1. It turns out that it is not that uncommon to name your ostomy. As you know, mine is named Liza. I kind of wondered if naming was weird for a while until I started reading other blogs and a facebook group for ostomy athletes. Take note that there are some really kick ass ostomites out there who are literally going on backcountry climbing trips, heli-skiing, running ultra marathons, triathlons, entering lifting competitions…you name it. Pretty inspiring. Anyhow, most of these folks have a name for their new found friend that is poking his/her head out of their belly. It makes sense. Our stoma’s move and wiggle when we clean them. They might as well have eyes so a name is definitely warranted.
2. The only time you smell it is when you empty it or change the whole system. Someone sitting next to you, your dog, your doctor… cannot smell it. THANK GOODNESS! This is because the products are really top notch. The seal is really tight and there are various odor eliminating drops you can add to your bag. On the flip side, emptying it can produce some terrible smells. I’m quickly learning that certain things I eat (eggs) make me want to pass out when I empty.
3. You don’t need to do anything special when you shower. I shower exactly like I did before, but with a bag attached. When I’m done I take a blow dryer to it. I’ve never had any problems with showering and once in a while I shower without a bag on. Only in the early morning though when my guts are quiet and nothing will shoot out.
4. Someday I will get brave and soak in our amazing bathtub that has never been used- lol. We did a major remodel last year and I have a gorgeous tub that has gone untouched. I just ordered a neoprene belt and when it comes I plan to try it. We are going to Iceland this summer (someday I’ll blog about how that decision came to be) and I am determined to soak in the GeoSea Thermal Bath’s that are in north Iceland. The baths are comprised of sea water heated from the earths core. They are supposed to be healing and specifically for psoriasis which I have plenty of right now thanks to my injection Simponi! I can’t wait! We will not be far from the Arctic Circle in far north Iceland so a heated sea bath sounds amazing.
5. No, I can’t lie on my tummy. Or do any sort of core exercise for my back while lying on my tummy either. This is a major bummer as I do love to sleep on my tummy- especially in the summer. I’m just afraid the bag will burst and it’s advised not to.
6. It farts and is unstoppable. You know how when you feel gas you can feel it coming and can usually (hopefully) hold it in? Well, there is no sphincter for Liza. She toots whenever she feels necessary and there is zero way she can give me a warning. It can be quite embarrassing when you are out in public!

I think that is all of the random thoughts I have right now. Feel free to ask me any question you have!

As for an update on how things are going… I had my 5th of five iron infusions today. I think it’s helping a little, but should feel the full effect in a few weeks according to my dr. They will re-check my levels in July to see if I need more. The increased dose (doubling) of the Cellcept has been a bit hard for me, but I’m trying to adjust. Mostly fatigue, headaches, and some crazy low blood sugar type feelings. I’ve notified my GI, but I am hoping it’s a temporary thing and I will get used to it. I’m still having skin/psoriasis reactions from Simponi, but we are working on that too. I think I’ll know in the next 4-6 weeks if I’ll be able to stay on it. I see Dr. G in a few weeks and will have a lot to chat about including some colon activity that is a bit worrisome.

Other than that, all things considered, I think I’m doing ok. It’s a busy time of year and I am grateful to be able to participate in nearly all of “life” right now.

Sometimes the strength within isn’t a big fiery flame for everyone to see. Sometimes it’s a tiny spark that whispers ever so softly “keep going, you got this.”

I’m struggling this week. Now, I did have the most amazing run I’ve had since I’ve been back on the trails. But, it didn’t happen without me wanting to scream the entire time which no doubt influenced my pace to run faster than I have yet. This is hard. Life with an ileostomy sucks and this week my sense of hope has been a bit sparse.

First, I continue to be rattled every time I go to change my entire appliance and I see my small intestine poking an inch outside of my abdominal wall. It’s red and looks alive. Well yes, it is alive, but when you touch it to clean it and it moves, it’s absolutely horrifying. I literally have one of my organs poking out to basically say “hello” every three days. Grasp that for a second.

Second, I was back at Anschutz last week to see a dermatologist (more on that in a bit) and as I was walking the halls I saw a few of the nurses that cared for me when I spent 3 weeks on the surgery floor. I didn’t talk to them and they probably didn’t recognize me, but it brought back some terrible memories. When my small intestine fell asleep and I was on a feeding tube for 8 days for a blockage that lasted forever. When my surgeon, Dr. V stuck his fingers inside me at my bedside to try to get my ileostomy to wake up and work better or when he came in at 10 pm or 5 am because my pain was so horrible and he just didn’t understand why or how to make it better. That Friday when he sat with Craig and I and told us he hadn’t seen these issues happen like this before and that he didn’t know when I’d ever get to go home. The 3 am hand holding by my nurse Sabs (Sabrina) when I was in tears, overwhelmed, and scared. The uncontrollable crying on Craig’s shoulder before he left for the night when I had no idea if I would ever get through this. The phone call from Dr. G trying to comfort me and tell me it would be ok when truly I didn’t think it could be. The charge nurse Aly, who took over my care a few nights in a row and just sat with me and emptied my bag for me at my bedside because I just couldn’t do it anymore. The pushing of the pain button, watching the clock for my next round of meds, watching my first ileostomy retract under my abdomen and being scared to death that my abdominal wall would be filled with output and lead to major infections. The sitting in pre-op yelling at Dr. V and crying that I have had enough and he needed to just pull it up, re-stitch it, and send me home. Then to wake up and overhear him on the phone with Dr. G saying that he couldn’t do that and I had to have a major surgery with a slice six inches up my belly, the end of my small intestine and ascending colon removed, and adhesions that had completely stuck my intestine to my abdomen cleaned out. The epidural for pain after that, the ice chips, the vomiting, the fear, oh the fear…. It’s a lot. This is a lot.

So, when there are days you see me and I’m more quiet than I usually am or don’t feel up to doing much, I want you to know that I am still reeling from this experience. You don’t just move forward from something like this very easily. You may think that I’ve moved on since there isn’t much I’m not doing now, but this is FAR from over and as of recent I am getting really worried this is going to be my forever. Sure, I can keep my head up, get back to doing what I love, but the reality of my situation is pretty crummy. I’m having some more feelings in my colon that are terrifying me and I am still working through the medications.

The good news is I did see an incredible dermatologist last week, Dr. S. She is very experienced with the medications I’m on, the psoriasis that one caused and has come up with a plan with Dr. G to hopefully get me through this. I will be doubling my oral dose of Cellcept which should help the psoriasis, while also treating my Crohns. I will continue to split my Simponi dose (injection) for the next 4-6 weeks. Once the Cellcept has built up enough in my body we will try to do a full dose of Simponi and go from there.

Don’t get me wrong, science is truly amazing and the fact that I can actually function normally with an organ poking it’s head out is truly mind boggling. But, it’s still hard and sometimes I wish the whispers were a little louder to tell me “I’ve got this.”

I’m happy to report that I am back on some medications to treat my Crohn’s. This skin issues are far from resolved, but we are giving a new technique a try. First, Dr. G had me start Cellcept (that replaced my skin cancer causing drug). I started that right after my last post. He spoke with the specialized GI dermatologist and she thinks this will help the psoriasis. I also did about a week of some heavy duty steroid cream. It helped, but is not something I can do long term. Things settled quite a bit and Dr. G gave me the green light to try the Simponi injection again, but at half the dose. So, on Sunday, Craig gave me the shot, but only pushed half of it in. The rest is sitting in my fridge for 2 weeks from now. I’m 48 hours out and while I’ve seen a couple of new psoriasis spots pop up it’s not like the major reaction I had within two days of my last full dose at the end of February. So, I’m keeping my fingers crossed that the psoriasis response will be minimal. The hard part is I have been told that you can go days of feeling like you are in the clear and then your skin can start terribly reacting. I have been really itchy and get paranoid that more spots are coming, but so far so good.

Dr. G made it clear to me that he does not think I will be able to do the Simponi long term. He warned me about what he has seen happen with psoriasis and this drug (severe/disfiguring psoriasis), but at the same time we need to at least try it again. He’s just looking out for me and I appreciate that. I actually think I’m pushing continuing the Simponi more than he is. I won’t be stupid and if I see more spots pop up I will stop.

I did get a call last week from the specialized GI dermatologists office. Dr. S would like to see me this Thursday. I did not expect that call as Dr. G said she was booked months out, but I guess she was able to fit me in. Once again, the attention to my care is incredible.

I will be repeating a bunch of labs this week and next week to check on my zinc/copper levels, cell counts, liver numbers, etc. Hopefully all looks good.

Other than that I have been able to get out and run a bit more. The weather is warming up so I’m starting to try to figure out how I will stay hydrated without the use of my colon. I’m using Drip Drop and drinking a lot of water. I’m toying with the idea of signing up for a race over Mother’s Day. Every year for as long as I can remember I have run some sort of Mother’s Day weekend race. I have a hang up on 10K’s because they are always so crowded and I’m used to going longer. There’s an 8 mile trail race I’m intersted in. I won’t be ready for the whole thing, but might be able to tackle most of it with some walking in between. It’s a trail race which are my favorite. They’re harder, but the scenery and therapy of being in your own thoughts on a quiet trail usually makes up for it. It’s why I love to run the hilly trail by me.

There was a lot of nerves in anticipation of Liza’s first flight last week, but everything went fairly smooth! First, I highly recommend TSA pre-check no matter if you have a medical appliance or not. I went through the process a few weeks ago with an application, background check, getting my fingerprints taken at the airport… It was so easy. $85 for 5 years is definitely worth it and lucky Ryan got the benefit too by being a minor. His boarding pass was stamped for approval as well. I just told the security person that I had an ostomy and they were so nice. No patting down at all. That along with not having to take supplies out of my bag, take my shoes off, belt, etc. made it so much less stressful. I was nervous enough just to fly. Craig was a bit jealous and probably has already filled out the application for he, Ryan, and Emily to move forward with the process.

Thankfully I did not have to empty my bag during the flight. Of course, it was only a 55 minute flight to Salt Lake, but I’ll take what I can get! I was getting a bit nervous prior to landing because it seemed my bag was getting quite full. We were in descent though so I needed to wait. Ends up, the bag was mostly filled with air. Thank goodness it didn’t pop! I did not have the same problem coming home so I don’t know what that was all about. It could have been time of day. The first flight was 6 pm and with already having a few meals throughout the day perhaps my small intestine was letting out more gas. The return flight was early.

We spent 4 nights in Park City and skied 3 days. Emptying continues to be a royal pain in the butt on the slopes, but it is what it is. All the snow gear, public toilets, slippery ski boots… all a recipe for disaster. I have learned to use the handicap stalls because the toilets are higher and I don’t have to squat so much. My ileostomy is in the upper right quadrant of my abdomen so it is quite low squat I have to do each time. The higher the toilet seat the better. I did have a mom with her little girl give me a dirty look as they were waiting for the handicap stall. They just needed extra space like I did. I didn’t say anything, but would have gladly explained why I was in there if she had asked.

Skiing was a lot of fun despite the way too warm conditions. We either skied on ice or in mashed potatoes. Still so great to get away!

I did have my urgent telehealth with Dr. G last week. He was home with his kids so I really appreciated him taking the time to meet with me. I sort of expected him to question if my rash was due to the Simponi, but he did not at all. In fact, he seemed more concerned than I did. He said this can happen with this medication and that it can get progressively worse, way worse…. Therefore, he instructed me not to do my next injection. He didn’t want me to start the Cellcept either (the drug that’s replacing the skin cancer drug). He is chatting with a specialized dermatologist and will get back to me. She’s been out which is why it’s taking so long. I guess she came from Penn and works specifically on skin issues associated with GI diseases (there are a lot) as well as the medications that cause other skin issues. Who knew there was such a specialty?!?

So, for the past few weeks I have not been taking any Crohn’s meds at all. This does fill me with some anxiety as I know I need to always be on treatment. Hopefully we can get on track with a new plan soon.

The pic’s below are the skin cancer that is on my forehead caused by my oral immunosuppressant and the psoriasis rash caused by the Simponi. Good times, good times…

“You can’t skip chapters, that’s not how life works. You have to read every line, meet every character. You won’t enjoy all of it. Hell, some chapters will make you cry for weeks. You will read things you don’t want to read, you will have moments when you don’t want the pages to end. But you have to keep going. Stories keep the world revolving. Live yours, don’t miss out.”

I woke up today with an uneasy feeling. A feeling of panic, anxiety, on the verge of tears… This happens to me once in while and it’s hard to pinpoint what is causing it. I know I have a lot going on, but this feeling always shakes me. Thankfully, I can usually get through it by going out for a run or a walk or putting on a funny podcast. I feel lucky that those techniques work for me. Most of the time.

I’m sure lot of this has to do with how much uncertainty is going on with my Crohn’s lately. I feel like I am in such a limbo phase right now with all of the complications of my medications. The skin cancer and rashes they are causing is unsettling and I worry that I won’t get to a good place with my Crohn’s and will have to live with this ileostomy forever.

I’ve had quite a few people ask me lately “how is Crohn’s doing?” I mean that is the most important thing right? It is. I think it’s doing ok, but we can’t really tell for sure. With my colon resting, nothing goes through it so we don’t know what it looks like. We don’t know if the inflammation and severe ulcers and bleeding are still present. We don’t know if I would still be in pain and in the bathroom all the time if I was using my colon again. The good news is my small intestine seems to be doing well. I don’t have a lot of pain there. Some once in a while, but the bowel resection helped most of it and it seems to be holding its own for now.

I have a telehealth with Dr. G on Wednesday where he wants to discuss the Simponi and the recent rash. I am so grateful that while he is always booked months out, he never fails to fit me into his schedule. Sometimes I worry he’s going to kick me to the curb with the constant complications that come up. The biopsy did show psoriasis that can be caused by this medication. We’ll see what he says. Not sure if he will want me to stop the Simponi or not. I do not want to stop it, but I can’t live with the rash forever. I just pray for an easy answer.

Once we can get on a solid treatment plan we can plan for scopes to evaluate my colon, etc. The plan will be for 3 scopes. A colonoscopy, an upper endoscopy through the mouth, and another endoscopy through the stoma. But, we can’t move forward with any of that until I am on a consistent course of medications.

I will be starting the Cellcept on Wednesday- that replaces the skin cancer causing med I was on. It is strictly an immunosuppressant and needs to be used in conjunction with some sort of biologic for Crohn’s. If it’s not the Simponi, it will be something else. Stay tuned.

So for now, I will continue in this chapter and keep editing along the way. It’s really all I can do.

First, the good news. I finally received my first IV iron dose today! It really is something I look forward to because I know in a few weeks I’ll start to feel better. Interestingly, I will be getting 5 infusions and not 3. Something to do with the type of iron, insurance, and how low my levels are. That seems like a lot of iron to me, but I just do what my hematologist says. I assume blood doctors know a few things :-).

Oh, more good news is that tomorrow is my very last day of prednisone! I hope so anyway. I have been given permission to stay on 1 mg a bit longer, but I’m going to see how it goes and make tomorrow my last dose.

If you read my last post you know that my skin cancer issue is complicated by an infection at the biopsy site. Well, the antibiotic cream didn’t work so I started an oral antibiotic. It looks much better now.

My B12, Folate, and D3 all look good. I do have a zinc deficiency though so we are addressing that with a 14 day course of a high level zinc supplement. I have had to use a lot of brain cells and the vitamin rep’s expertise to figure out how to get 50 mg of ELEMENTAL zinc. I had no idea that the zinc I was taking was not very efficient so there is some magic conversion chart we consulted and now I know how to get to that level. I will be getting levels checked again in a month.

The zinc discussion leads me into my bad news. I have a rash all over my arms and legs. It has been with me in a milder form for a few months and last week it exploded. Coincidentally, it exploded a day or two after I took my Simponi injection. According to my GI and my dermatologist Simponi can cause this psoriasis type rash after being on it for a little while. I am praying with all my might and keeping my fingers crossed tightly that this is not the case. I saw my dermatologist again today and she took a biopsy. They will do a stain and in about a week we should know from the biopsy if this is drug induced or just a classic case of psoriasis. If it’s drug induced I will be devastated because all I want is to get on a good Crohn’s med and already had to stop one.

My GI is entertaining the small chance this could be from my zinc deficiency because I guess a rash sometimes occurs in deficient individuals. I told him I will gladly entertain that idea and hope his glimmer of hope is accurate.

Thursday I have a different dermatology consult with the MOH’s surgeon where she will discuss with me what the surgery for the skin cancer on my forehead is going to entail. All I know is that the insurance letter with all the codes I got in the mail is quite overwhelming. When I see words like “complex, skin flap, graft…” I cringe. I hope she just threw a ton of codes in there for approval and my surgery will touch none of those words. For now I’m going to put a little ice on the biopsy on my arm which needed 2 stitches today. Good times, good times….

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.