I just put some pic’s on my Instagram story and page (@thisgirlsgotguts). I am very much annoyed by Facebook and the thousands of ads, people who share literally everything, complaints, and stalking capability. I rarely post there anymore except a photo dump once in a while of trips or big events that I know family would enjoy seeing. Anyhow… the point of this blog is that I am not one to use all of those insta filters to make your face, skin, or body look perfect. My reality is very real to me. Why do I need to filter who I really am? I’ve got wrinkles, big scars, a bag that hangs off of me… I’m me and I’m not hiding that. I think you all realize that in my very open blog posts over the past 21 months.

Some of the pics I posted… some sweaty post run pics, a shot of my irritated skin around the adhesive of my wafer, a large scar, a post workout bag inflation. It is what it is.

My latest update is that I think I dodged the CT enterography bullet. I haven’t actually heard from Dr. G after my lab results came in, but my WBC looks even better. I am under the assumption we can wait and do the CT and scopes within weeks of each other for disease activity evaluation in September(ish). This will be a yearly thing for me for the rest of my life. Hopefully not more than yearly.

I will be seeing my hematologist in a few weeks to look at my iron numbers. I strongly hope that my ferritin is finally at a number that insurance will allow me to receive iron infusions. Even though my iron saturation is 6% (normal is above 20%) and my iron is at 20 (normal is above 40) insurance will not pay for iron until your ferritin is around 25 and below. Mine was at 60 in March which was a drastic drop from a few months prior. Dr.’s like to see it above 80 or so for women (the range is 15-300). Insurance companies are frustrating. We’ll see. The best thing would be that everything has improved, but I’d like some relief if those saturation numbers are still in the toilet. I have noticed the exhaustion level skyrocketing lately which is either iron deficiency or perimenopause (yes, it’s so lovely that went into full gear after my ovary was removed). It’s likely a combo of both.

Tuesday I had a Facetime training with a nurse to administer my first self injection of Skyrizi which will now be every 8 weeks. I am done with the 3 infusions so this is the next step. Talk about medical waste. It’s this huge medication filled cartridge with a needle that you adhere to your skin. It administers the medication over 3-4 minutes and then you throw the whole thing away. It has sounds and lights and to me, seems like overkill. But, I guess it’s cheaper than having your insurance company pay for you to go to a facility and have a nurse slowly give you the med.

Lastly, I have been back to running more consistently over the past 6 weeks or so. The runs are slow and tough, but I’m doing them. I am probably a minute off of my normal, healthy pace, but that’s ok. I attribute that to continued recovery and low iron which hopefully will get better soon. My goals have been “Can I make it up that hill without stopping?”, “Can I make it 2 miles without stopping?”, “Am I faster than last week?”, “Can I do at least one of the miles under 10 min?”. The answer currently is yes to all of those questions :-). I’m pretty close to 6 miles for distance. The elevation around here is no joke though. Oh the hills! Plus, it’s Colorado so you’re starting at 5,500 feet anyway. I am thankful for all of my neighborly running pals I see along the way who always stop to chat (and let me catch my breath!). However, I am not thankful for the heat of summer with this bag. The sweat and skin irritation is not fun at all whether I’m running or just doing strength training. I do often wonder what my skin will look like over the years to come with the constant adhesive on my skin. Liza has been a champ so far though and although I will forever have days of frustration and tears that this is my life now, the alternative is much worse.

It’s been a minute since I’ve written. Time has been flying. We are almost halfway through May with Ryan’s graduation coming fast. If you’ve gone through the last kid flying the coop yourselves you will know how emotional it can be. It’s sad, but also really exciting to watch your kid soar through the last bit of high school and get ready for that next step. Ryan will be headed to University of Arizona in Tucson where he will be in the business school. He’s also in the middle of lacrosse playoffs which is exciting after a fantastic season with an amazing group of boys. Ryan knows the club coach at Arizona who he plans to chat with. Or, he may choose club golf or an intramural sport of something. It’s fun to have a few options ahead of ways he can meet some new friends, while studying of course ;-). He likes to be busy and no doubt will find some athletic activity.

The hard part of the college thing for Ryan is that he has Crohn’s himself and we have to navigate how to get him infusions every 8 weeks. Insurance will only allow a patient to go to a single infusion center. For now, we are keeping his infusion center in Colorado and will have to fly him home every 8 weeks. A few of them fall over breaks, but several he will have to make the commute which is really unfortunate for him. I feel terrible, but I can’t control what hand he was dealt. He’s in good hands and the best news is that Dr. G knows a Crohn’s doctor in Tucson at the U of A. At my appointment with him last week he said he would be more than happy to take Ryan on as an adult patient and help coordinate with the Arizona doctor when we are ready.

As for me, I am officially done with prednisone. A hard thing to get off of, but I made it. Now we will wait and see how things go. It takes a while for prednisone to completely wash out of your body. The hope is that the Skyrizi has taken over enough to treat my small bowel Crohn’s so we won’t need more prednisone. Despite having low blood pressure at my last Skyrizi infusion we moved forward with the 3rd infusion last week and it went fine. Dr. G had them pre-medicate me with a few things which helped. With the infusion part of Skyrizi over I will now be using a self injector patch in 3 weeks and then every 8 weeks after. I have never seen a self injecting patch so I will let you know what that’s all about when the time comes!

As for how I’m feeling I think I’m doing ok. However, I have the most cautious GI ever and he is not willing to grasp that feeling quite yet. I am having some pain episodes which I think are very likely due to adhesions. I feel things get a little stuck, pressure, or noise and then eventually go to the bag. I have had so many abdominal surgeries that I can’t expect there not to be some repercussions. I really do not need a definite answer to what these pain symptoms are. I am moving through my day quite fine. Yes, they disrupt my sleep once in a while, but I’m sure every person reading this is disrupted by some sort of ache and pain daily. Yes, I also suck up a lot, but it’s how I roll. You have to with this disease. We have to eat to survive. My plumbing is forever scarred and narrowed in spots. It is what it is.

At my appointment last week I shared this info with Dr. G (he knew something was up since my re-hospitalization tests) and made it very clear to him I am fine just moving on. Well…. he keeps looking at my labs and isn’t happy. I have had a continued high WBC and platelet count which he wants to get to the bottom of. He wants me to get a CT enterography which is a specialized CT of the small bowel. When he mentioned this I questioned the necessity and what would we even do with the findings. I peppered him with questions and doubt that I needed to have this test. I reiterated I’m overall ok, much better than a few months ago and can’t we just wait until late summer or early fall when he wants to scope? Scoping through the stoma (Liza) is hard because the angle is weird. He can’t get very far. He has to scope from the mouth too. Also, can’t get very far. So, each year I will need imaging like the CT enterography to go along with the scopes. I would like to have all of these tests done at once so we have a solid picture at the same time.

We went back and forth and ultimately agreed to re-check my WBC. Results came back and they were much better. I was thinking “Perfect. Now we can just wait until scope time.” WBC is still high, but decently better. I sent a message thinking I was in the clear. My message back… “let’s re-check your WBC in two weeks and then we will decide on the CT.” Ugh. I am forever in limbo phase. Always waiting for the next test result. I would really just like to move on.

So, that’s my update. I think I’m doing fine, but Dr. G not convinced. Good news is it’s a busy few weeks ahead so I will be at that two week mark very quickly. Then, we will move on right?! For now I am going to continue to try to come up with “bag friendly” outfits for graduation and all the fun things coming up. That is not an easy feat to find tops that will accommodate a bag that starts off small and over the course of a few hours looks like a right sided bulging bag of potato chips attached to me!

The past few weeks have been pretty on par with my trend of moving on up and out of the past several months. Some definite bumps that worry me, but a lot of good things too.

First, the fun things…. Craig and I went to San Diego for a little getaway and to watch Ryan’s high school lacrosse team play a few games. When planning the trip I was a little nervous I wouldn’t feel ready, but it went great. We had some yummy and fun meals with a few other senior parents, watched 2 competitive lacrosse games (won one in OT!), had some great beach walks, a hike around Torrey Pines Nature Reserve and just got to spend some time together. I felt decent the whole time and was very grateful.

As soon as we got back we went to the John Mayer solo acoustic concert with some good friends. Highly recommend! It was the best concert I’ve ever been to. Again, a late night, and my body pulled through.

This week I also got back to running again. Not gonna lie. It’s a bit discouraging and is killing my lungs and legs, but I’m doing it. The trade off for my mental health is worth it. Finally, the fog in my head that I have been having is thinning out. So many people think it is torture to run, but for me, it is one of the most enjoyable, head clearing, soul searching, things I’ve ever done. The strength training I did for 4 weeks has certainly helped along with getting rid of that nasty colon. While I have noticed a struggle with endurance, I have also noticed that I don’t have that yucky feeling in my tummy anymore. When I would run prior to surgery stuff would be passing through my un-used colon which was not supposed to happen. It was just so sick.

The bumps have been the prednisone and my Skyrizi infusion. I made the decision to slow down my taper again. I’m sure I sound like a broken record when I say how hard it is to wean off of prednisone. I was getting the common side effect of withdrawal (shakiness, headache…), but I was also noticing an increase in abdominal pain. Nothing terrible, and tolerable, but enough burning pain episodes that I decided to slow down. The first day I tapered it was just the shakiness, but mid-week this week I have noticed a bit more pain so I think I may actually stick with this dose for two weeks vs one.

The biggest bump was the Skyrizi infusion I had on Wednesday. The first time I had no issues. I felt a bit rundown that night and the next day, but it was fine and how I typically feel after infusion type medications. On Wednesday, I kept getting really low blood pressure during the infusion. Several times it was in the 70’s/50’s. The nurse slowed the rate and it went back into normal range, which is still low for a normal person, but is my normal range (100/60 ish). When we finished it was back in the 70’s/50’s again. I felt fine. I was sitting in my chair and had no concerns. The nurse left and about 20-30 min later I felt awful. Light headed, dizzy, and truly thought I was going to pass out. I crawled into bed and felt so bizarre for a few hours. Afraid to get up.

These types of reactions are not a huge deal compared to what people go through with chemo, dyalysis, etc. but I needed to let the nurse know. She is contacting the pharmacist and my dr. and I’m guessing next time they will have to slow the rate even further and then observe me after. I will say, I am a bit surprised the nurse left me with a low BP like that and didn’t observe. Thank goodness I wasn’t driving my car home from an infusion center which is how all of mine have gone in the past.

Labs were also taken that day and they are not great. Still a continued high WBC, platelets, and neutrophils which is a sign of active Crohn’s. My immune system is very low too, but that’s to be expected. A few other numbers pointing towards continued anemia which I was hoping would start to improve. It’s still really early though with the Skyrizi. Full effect doesn’t take place for a bit so I don’t feel discouraged. I just pray that I can stay on the Skyrizi and that there are no further concerns given my reaction the other day. I’m two days out and still feel a bit off. Hoping that means it’s doing it’s job and killing whatever nastiness is going on inside “smalls” my small intestine nickname. Btw, smalls is like 20 feet long (or maybe 16 for me with what has been removed). Not sure why they call it small.

I see the quote a lot that says “We can do hard things.” It can resonate with each of us in so many different ways. No matter who you are or where you’ve come from, every single one of us has dealt with and overcome so many hard times in our lives. It’s often hard to think about and recognize those defeats when we are deep in the thick of it. Especially when there are multiple hurdles continuously being thrown your way and the light at the end of the tunnel seems to keep moving backwards. My hope is that all of you can think about and be proud of what you have gotten through. Most importantly, if you are going through something right now, hang in there. Stay strong and keep plowing forward. Truthfully, there isn’t a single day you haven’t gotten through because if there was, you wouldn’t be able to read this.

Over the past 9 weeks I have had some very, very dark days. Between the reality that my Crohn’s has come to losing my colon, to the pain, complications, my recovery moving backwards, inability to eat, weakness, heading back into a small bowel Crohn’s flare, did I mention pain….? It all was so overwhelming and scary and there were days I really thought that I was going to feel this way forever. I saw no light. No hope. The days leading up to re-hospitalization were some of the worst days of my entire journey with this damn disease both physically and mentally.

But, you know what? I did it. I got through it. I got through having an entire major organ, a cyst the size of a grapefruit, and an ovary being removed, a 9 inch scar, infection, sooooo much pain, nausea, eating literally nothing, a partial small bowel obstruction, and a relapse of my Crohn’s. Oh, not to mention the fact that Liza (my ileostomy) is here to stay and every 3 days I see her poking out of me in the raw when I change my bag. I do need to mention that my optimism or feeling proud feeling I have cannot overshadow the fact that I will always struggle and be sad about that piece.

Yes, I’m still dealing with a Crohn’s flare with steroids and a new infusion, but life is so much better. I feel pretty good! I can’t tell you the last time I took Tylenol and I am eating 90% of what I ate before. I’m still trying to gain weight after reaching a plateau a few weeks ago, but I’ll get there. I’m trying to gain the normal weight I need to, but also the weight of a lost colon.

The best part about the past few weeks is the realization that getting that yucky, diseased, inflamed colon out of me has made such a difference in my quality of life. My body was fighting so hard using up all of my energy to deal with that nasty organ. I really noticed this when I started working out again. Even though for 5 weeks I barely walked at all, I have been able to do nearly everything I did before surgery in just the past 2.5 weeks. My basement workouts have been great. Pretty full of energy. I’m taking long walks, hiked with Craig on Sunday, and I will be running again soon. I’m taking 4 weeks of strength training before I try to hit the trails. I do need to reiterate that steroids are likely helping this situation, but I’m still very hopeful. On Monday I dropped from 20 to 15 mg and so far it’s been fine.

I am proud, grateful, and so thankful that I have come this far. But, I am no different nor have I dealt with more than so many I know. Despite what people say to me about the depth of what I have gone through, believe me when I say that there are people I know dearly who are dealing with far bigger battles than losing a colon. Much, much, bigger…. They are my hero’s. Truly. I just kept putting one foot in front of the other and made it my priority to stay tough and get through this for myself, Craig, and the kids. But, in the same breath I was able to recognize that you can’t be strong every day. It’s ok to cry, scream, throw things, and have terribly awful days. They are all part of the healing process. So, if that’s what you need to do to get through today then do it.

There will continue to be bad days, but for now I’m soaking in all the “wins.” Good riddance colon! I’m sad it came to this, but I’m glad to be done. I may not get through my March Madness bracket, but I got through losing you.

The day finally came for me to get my first Skyrizi infusion. I’m certain you’ve all seen the add blasted on tv multiple times by now. One of the many, many, biologics I have been on in my life.

To refresh your memory on my history, I was diagnosed in 2002 back when they didn’t quite have a handle on how to treat Crohn’s. I started with some pills, transitioned to Remicade when my GI at the time took me off Remicade because I was in remission. That was a bad choice. You should never go off of a drug that is working for you or can build up antibodies to it. For years I was in and out of remission where I tried oral medications, Remicade again, Humira, Cimzia, Methotrexate… all medications you’ve also seen on TV. I had my first small bowel resection in 2011. In 2014 I began seeing Dr. G when my Boulder GI couldn’t help me anymore. This was about when my disease landed high up in my small bowel which is pretty rare. Dr. G got me through some tough times, but when the disease continued and landed in my colon in 2020 (17 years it was only in my small bowel) I failed Stelara, Entyvio, and the clinical trial I was in. I did respond pretty well to a combination of Entyvio and Azathioprine for quite some time, but had to stop due to multiple skin cancers that developed. I have had several pretty intense surgeries on my face to remove them. Stopping this and failing a clinical trial, ultimately led to the creation of Liza, my ileostomy, and the removal of my colon.

I should back up to say that the upper small bowel disease (the duodenum) that Dr. G got me through is still the most important piece of this whole story. Even more important than losing your colon. It’s an area he still worries about because surgery there is extremely complicated if not impossible to lead a normal life after. He’s watching it like a hawk hence his hurriedness to get me on a new medication. Currently it is pretty scarred over from old disease, but has not seen active disease in quite a few years. We are praying it stays that way and I will continue to be scoped yearly to take a peek.

Skyrizi was approved for Crohn’s last fall and from what I understand has been a hot topic for GI’s. It is an IV infusion at weeks 0, 4, and 8. After week 8 I will give myself an injection at week 12 and then every 8 weeks after that. Craig will actually be giving me that injection just like he has with all of them. What a great guy ;-).

My infusion yesterday was done at my house which was very convenient! I had all of my supplies and medication delivered on Wednesday including an IV pole. I had warned her that I was a tough IV stick and she was able to get it on the second try. She actually got it on the first try, but when she tried to push saline prior to starting the infusion a clot had formed so she had to re-do it. Since it was the first time I received Skyrizi and her first time administering it she did it at a very slow rate while watching me very closely for allergic reactions. She drew some baseline labs and watched me for another 45 minutes when I finished to make sure I was still doing well.

Last night I felt pretty “medicated” and tired, but overall ok. Today I feel a bit run down, but that is always the case with these IV medications for me. I don’t know how long it will take to start working and helping my small bowel Crohn’s, but I imagine at least 2 IV doses. Right now the plan is to stay on the 20 mg of prednisone for another 5 days and then taper. However, I think I will be chatting with Dr. G about that. I’m still having some pain episodes and don’t feel ready to taper. I am also on an oral immunosuppressant called Cellcept that I have been on for at least 18 months.

I go into this whole Skyrizi experience with some cautious optimism. Unfortunately, my Crohn’s is refractory to so many medications. But, hopefully getting the bad colon out has less for my body to work for. I think there really could be some truth to that and I am ready to take on the challenge. As much as I like Dr. G and enjoy our chats, if I could get through the year without seeing him more than 2-3 times that would be amazing.

I’ve had a few people ask me lately if I notice my colon missing other than obviously not sitting on the pot anymore. Yes, I do! I feel a bit hollow without it. Definitely the feeling that something is missing. It is 6 feet long so I imagine most people notice it when it’s gone, but I suppose I could be wrong. It is a really odd feeling knowing that I have no ability anymore to go #2. Maybe TMI, but if you decided to follow me you get what you get 🙂

I am happy to say that I have had a decent week since I last wrote. No doubt this is due to the addition of prednisone that I spoke about. After I decided I couldn’t take it anymore I contacted Dr. G and asked him to prescribe me some. He was out of town, but thankfully his colleague reached out to him and a 20 mg dose was decided on. It has taken that edge off. I am still having some bouts of pain, but currently as I write this, I have gone over 48 hours without the need of even Tylenol. Also as I write this I have a heating pad on in hopes that I can continue that streak. I’m learning to identify a few things that are painful to eat. Today’s culprit, yet again, is raspberry yogurt. I think I have the problem with strawberry too. Interesting to me because this typically hasn’t been a problem in the past, but I wonder if it is the seeds. I’m hopeful will get through this without Tylenol.

Late last week I saw Dr. B who is my hematologist and follows my iron. My iron and iron saturation is drastically low, but my ferritin is within range. So, I cannot receive iron infusions yet. However, he thinks my ferritin could be inaccurate due to inflammation so we will continue to follow it again in 2-3 months to see if it’s time for iron. My other labs were quite poor. In fact much worse than when I was hospitalized a few weeks ago. Very likely pointing to a small bowel Crohn’s flare as myself and Dr. G have suspected thus supporting the darn devil drug, prednisone, making it’s way back to my body.

The good news is that my Skyrizi infusions were finally approved! Boy, that took a long time. I got the call last Friday and my first infusion will be this Thursday at my house. I have never had a nurse come to my house for infusions, but my choices were an infusion center an hour away or the comfort of my recliner. I am actually pretty psyched about not having to go anywhere. I guess the medication and supplies will be delivered tomorrow by FedEx and then Thursday morning the nurse will come and administer. My only hesitation is that I am a very hard IV stick. I sure hope she’s good because often times it takes 2-3 tries and a change in nurses to make it happen. I should probably get in touch with the nurse to make sure they have the small needles and several of them.

It is so nice to have some better days and I am cautiously optimistic that more will keep pouring in. Even just getting out and enjoying some of the many days of sunshine we get in Colorado has been so good for my soul. Finally.

I have been waiting to hit the 6 week mark since I went in for surgery. It’s supposed to be the beginning of the timeline where I will feel recovered. Hmmm…. I’m not sure I believe that, but what I do believe is that I am a long way from where I was a few weeks ago. I’m not going to get hung up on this date. I think my setback of going back into the hospital has probably added some time to my recovery. I’m holding onto the fact that in the past 7 days I have only needed the “strong stuff” twice, am eating more, and finally able to get out on some decent walks for exercise. I am putting back on some weight too which is a huge relief. My low with my first surgery in 2021 was 97 lbs. My low this time was 102 about a week ago and it’s gone up every day since then.

The hard part though is that while I am eating more and putting on weight, the digesting process has had some real lows over the past few days. I have this area in my lower left abdomen that causes me pain and truthfully, worries me a bit. Saturday night I woke up in a lot of pain as something was trying to move through. I heated up some hot water and that helped move it, but it did terrify me a bit. Yesterday I had more pain in that area again. I’m functioning through it and Tylenol, a heating pad, or hot water is helping, but it’s enough to make me reach out to Dr. G and accept his offer…

Last week Dr. G ordered a fecal calprotectin test to test for inflammation in my small bowel. Basically I dumped some contents of my bag into a container and it was tested for inflammation. It came back high. Part of this could be some residual effects of the partial small bowel obstruction, but it also could be some active Crohn’s. It’s probably a bit of both. He mentioned that he really does not want to start me on prednisone, but is ok with a lower dose if I’m still struggling. If you have followed my blog or know me at all you will know that I consider prednisone the devil drug. It is so hard to be on, but it sure does some magic for inflammation and pain. I told him last Wednesday that I wanted to give it the weekend and see. Last night I messaged him and told him I think I need it. For me to ask for prednisone is saying something. I hate that stuff and he knows I hate it. But, I want to keep turning a corner and not end up obstructing again. So, we will see what he orders for me. I think it will be a fairly low dose in order to help with the inflammation, but only minimally cause some of other awful things like insomnia, headaches, agitation…

Part of the reason Dr. G wants to avoid prednisone is I’m hopefully pretty close to starting the Skyrizi infusions. However, we are going on more than 2 months of the approval process with insurance. It’s ridiculous. Skyrizi (I’m sure you’ve seen the commercials!) is newly approved for Crohn’s disease and something Dr. G has wanted to get me on ASAP to continue to treat my small bowel. There is no indication that this approval is happening quickly so prednisone may help me in the meantime. We’ll see. There are no guarantees of anything, but I want to give it a try.

On a happy note, what has helped me tremendously over the past few weeks is our new golden retriever puppy “Rocky”. There is a long story of how this happened, but the short of it is we have used the same breeder for 22 years and love her so much. An opportunity for a boy came to us in December that we couldn’t pass up. Well, we could, but if we wanted another puppy from her we would have had to wait until 2024. She’s semi-retiring and moving. We had just lost Frisco and mentally weren’t quite ready. And then my surgery was another obstacle. But, in the end we said yes, and it was such a good decision and honestly feels like it was meant to be. It was fate to get that phone call mid-December from her after she learned of Frisco’s passing. A litter with a 2 year waitlist of 7 boys and 1 girl was born December 10th. Since we have had 3 golden’s from her so far, she quickly offered us the chance to welcome a new little one to our home. Rocky is a dream. He’s so laid back, nearly potty trained, and yes, while he does have his obnoxious puppy moments it has been perfect for us. Blue does’t want to admit it yet, but he loves him too. They play tug, chase each other, and mostly just cuddle up together. It really has been good for the soul.

I should have written this post a few days ago to let everyone know that I did in fact make it out of the hospital for Super Bowl Sunday commercials. I was released Sunday morning with a whole bunch of meds for my tummy inflammation/ulcerations and the partial obstruction kink seems to have worked itself out.

I am happy to say that I have been doing better this week with eating and pain. Pain is still very present, don’t get me wrong, but my output has returned to a semi-normal state and I am eating solid foods again. My appetite is very poor though so it takes a bit of determination to eat. I dug out the old “sea bands” some of you might remember using on your wrists for morning sickness.

While things seem to be pointing in the right direction I’m having a hard time keeping my chin up and staying optimistic. I’m scared I will go downhill again. Most of you who know me are probably thinking to yourself that I rarely have that kind of attitude. But, the few days leading up to heading back into the hospital were so hard and terrifying for me. I just can’t catch a break and I wonder if I will ever have a day again where I feel normal.

This recovery takes 6-8 weeks and I know I’m only 4 weeks out, but my patience is waning and my couch corner is getting really old. Healing is exhausting. I want my energy back and I want to smile more. I want to stop worrying that something will go wrong again. I want to stop feeling crummy. I want to take walks without it knocking me out. Exercise has always been my mental therapy and without it I am having a very difficult time. I want to leave my house for more than one errand.

I have been letting myself cry more and it feels better to have that release. My months and years of holding a lot of it in is breaking. The Saturday before I landed in the hospital I had a huge sobbing cry with two good friends of mine on my couch. It felt good to let it out. I cried with Dr. V on the phone the day I went into the hospital. I had some good cries in the hospital by myself and today I let the tears flow again. I guess I need to just keep letting myself do that. I shouldn’t think I need to be a superhero through this, but I think it’s a characteristic of being a mom. You just want to be strong no matter what.

I know all of you want me to be recovered and on my way to happier times as well. I’ll get there, but in the meantime I’ll ask for your patience. I get a lot of text daily asking “how are you doing today?” Sometimes it takes me a bit to respond. My life already is revolving around this 24×7 so sometimes it’s nice not to have to think about it non-stop. Maybe if I’m not having a great day I won’t respond. There is no guidebook for this. I will feel good one day or hour and crummy the next. It’s not an uphill slope, rather it’s a roller coaster and a frustrating one.

Through all of this I want to thank each and every one of you for your love and support. I truly could not get through this without you. From the meals, hospital visits, shoulder’s to cry on, ears to vent, hugs to hold, messages, dog walks, couch corner chats, all of it… I am forever grateful.

My “acceptable shit show” I spoke about the other day finally came full circle last night. You’ll never believe it, but I actually finally saw a GI for, you know, a GI issue. 🙄

Let me back up a minute to catch you up if you haven’t read my earlier blogs. Since I was admitted Wednesday evening it took a full 24 hours to figure out who was following my case. Then, that person, the hospitalist Dr. Gould, didn’t actually know what to do because she’s not a GI. She is a lovely person, but this is beyond her. She got in touch with my surgeon and my GI, Dr. G, but it was late Thursday night so Dr. G didn’t get the message until Friday morning. Finally orders were placed and I was moving in the right direction, but still hadn’t actually SEEN a GI which I think is vitally important in my situation. Get someone to put some eyes on me so I can ask some questions! I’ve had some of these issues before and know a little more than the average person. Heck, at this point, I’m practically a GI myself.

I had sent Dr. G a message Thursday afternoon and found it very odd he hadn’t heard from me. Friday morning Dr. Gould told me that he said he wasn’t aware I had been admitted. Hmmmm… was he not getting my messages? Did Dr. V honestly not tell him I was in rough shape. So, I sent another message. A few hours later I called the office and asked to get a message to Dr. G’s nurse to “please have Dr. G read my messages before the weekend”. At 6:15 Dr. G messaged me “I’m going to call you.”

Not long after that Dr. V called me, “Jen, how are you?!” I filled him in, not too happy with him at this point since he always speaks to me in a condescending way. We chat, he says he’s ordering a GI consult and that Dr. G “can’t help me at this point”. Um yes, he can. I’ve been with him for 9 years. He can give me his ear, answer my questions without making me sound like an idiot, give me some hope, not question my symptoms… Needless to say I didn’t keep him on the phone very long.

At 8:30 on a Friday night Dr. G calls me. Short story, he did not get any of my messages until 6:00 that night. His damn nurse/gatekeeper never forwarded them to him! Not only did Dr. V drop the ball by not letting him know I was admitted, so did his nurse. I put 2 and 2 together why Dr. V said Dr. G can’t help me. He was like “shit, she better not get in touch with him”.

So, we talked for 20 minutes. He answered all of my questions, gave me some hope this will resolve, had some new insight on some of the pain, apologized a few times about his nurse, told me he was home this weekend and that if I needed anything at all to call the on call doctor and he would get in touch with him. Bless his heart. He must be so annoyed. He hung up saying how sorry he was that I could never catch a break.

His insight on my tummy pain is that my stomach lining is so inflamed and irritated that it’s likely starting to ulcerate. This is happening on top of the small bowel obstruction. So, he also ordered a GI consult.

At 10 am this morning a great GI, Dr. F came in. He loves Dr. G and sends all of his tough cases to him. He raved about him that he is the top Crohn’s guy in the region. He actually seemed a little intimidated that he was treating one of his patients now. We talked through the tummy stuff and he ordered a few things that I definitely think are helping.

Long story longer… I have had a much better day. It started off a bit rough, but got better. I tolerated full liquids (pudding, yogurt) without much pain, ditched my IV because I’m drinking ok, and tonight I had my first solid food since Tuesday. Chicken noodle soup (minus the veggies) and a piece of white toast and peanut butter without the crust. So far, so good!

I’m guessing that tomorrow if I handle breakfast ok I can get the heck out of here for the Super Bowl commercials. Finger’s crossed!

One thing I have learned so much about over the years with Crohn’s is how important it is to be your own advocate. Not all of us are great at it or if we are, maybe part of our family isn’t. It really is a game changer in healthcare.

While I am very glad to be at a hospital that is much closer to home and 10 times easier to get to and park at, it has its cons as well. Yesterday was a bit of a shit show around here. An acceptable shit show because the plan for partial small bowel obstructions is the same no matter where I’m at, but it was one interesting day.

I was told that the surgery team was in charge of my care here. All day I kept hearing how Dr. Walker would be coming by to see me. Even the hospitalist, Dr. Gould said that. We didn’t really have official orders in place for me. I was on IV fluids, no food or drink by mouth, pain and nausea medications on board, but no REAL plan. Then at 6:30 Dr. Gould comes in flustered and embarrassed. She was so confused as well. Why hadn’t surgery been by to see me? What is the next step? Honestly, who IS placing my orders? She finally just messaged my loyal Dr. G at Anschutz and a better plan started to come into place.

Dr. had been out of town and was unaware that I was hospitalized until he heard from Dr. Gould. They connected and the new plan is the addition of a steroid called Budesonide that releases in your gut. It is not systemic so does not cause all the major side effects it’s that the devil drug prednisone causes. Another thing that was added was Protonix. Some of my pain starts in my stomach, I get a break, and then it lands in my lower left abdomen for an extended time. The initial pain is likely a very pissed off stomach from so many NSAID’s and very little food. NSAID’s are a big no-no with Crohn’s, but allowed for a few weeks after surgery. I don’t think there should be that allowance, but I did what I was told to help my pain. Anyhow, the Protonix will hopefully help some of that pain. With regards to self advocacy, none of the above would have happened without me pushing to make it happen.

Last night was pretty rough as well as this morning, but the day got a little better. I’m certainly not able to eat much, but I am able to handle liquids like chicken broth and graduated to pudding tonight. These pain episodes are brutal, but hopefully the time each of episode lessens this weekend.

The next goal is to get an actual GI here to lay their eyes on me. Even with the progress we made by finally getting some actual orders placed I am mindblown that a GI has not seen me here given I literally had 1/4 of my GI system removed. Dr. G messaged me around 6 pm that he is going to call me so I will ask to make that happen. Again, self advocacy!

Look for another update soon.