Always have an Advocate

You may or may not have noticed that I haven't been active on social media in quite a while. I've been posting stories here and there on some life things and food happenings, but haven't actually posted since mid-September. Here's why: Many of you know from personal contact or from seeing said stories on Instagram, that I had the worst flare up that I've ever had since my diagnosis of Ulcerative Colitis three years ago. Due to a slew of compounding circumstances at the very end of August, most of which out of my control, my body flared worse than it ever has before.

I actually thought I was finally on the mend mid-September, but it turns out that was just the beginning. Low and behold there was some hidden mold right where I was resting. My body continued to flare. It got so bad that I was unable to eat any food without extreme irritation, not even chicken!, for about two weeks. I was basically surviving off of water, bone broth and saltines (probably more nostalgia from sickness as a kid than actually doing me any good--hello gluten!). I could barely stand or walk around without my heart racing and getting out of breath. I couldn't even stand to brush my teeth. I couldn't shower. I had to take a bath, and that was all that I could really do in a day--it completely zapped me of energy. I started seeing an acupuncturist, in addition to the upper cervical chiropractor I was seeing, to help my body recover and decrease the bleeding/rebuild blood. I started to feel a little more energetic, but was still extremely fatigued and only eating bone broth, chicken and rice.

Now it is important to note that I was in Canada at this time, where I did not have any health coverage, and I knew I would be going back to the US at the start of October and could get the blood work I needed done then. Ordinarily had I been feeling this poorly, I would have gone to see a medical physician much sooner. It is also important to indicate that while I do prefer a natural approach to healing over medication, I also understand when medical intervention is necessary. Many of us manage our conditions without medical intervention (I was in remission before this flare!), but it is extremely important to listen to your body and not be stubborn or afraid to get the help that you need. It does not mean that you've failed, and it is okay to accept help.

Fast forward to the start of October and I wasn't much improved. I was supposed to drive down from Victoria (on Vancouver Island in British Columbia) to California--a 16 hour drive, give or take. Luckily I have the most amazing mother in the world and she flew up to Canada so she could drive me, my car, and my dog home.

We stopped at my cousin's house in Oregon along the way for some extra rest and recuperation, then continued on our journey. It was a 4 day trip, and we arrived home on Monday October 8th. I had blood work done (ordered by my incredible primary care physician) that Wednesday. I was so weak that my mom had to get a wheelchair to get me to the blood lab. Luckily my doctor marked it urgent, and it came back Thursday. Here are some of my results:

Of particular note are how low all my blood cell levels are, and how high my inflammatory markers (CRP and SED rate) are. The PA at my physician's office called us as soon as she saw these results and said I needed to go to the ER right away. For your reference, hemoglobin (HGB) levels are normally within 13.0-16.0 and they transfuse at 8.4 and below--mine was 5.8. When I checked into the ER Thursday afternoon around 3pm, my resting heart rate was in the 150s (this is normally an exercising heart rate level!), and the blood work showed my HGB had dropped even further to 4.9. I've never experienced such a flurry of people around me.

Photo on the left is after my initial blood work--down 20 pounds at this point (118lbs at 5'6")

They proceeded to give me a blood transfusion, but then my whole right arm started to swell up. I couldn't even close my hand because my fingers were so swollen and painful. Luckily Sonora Hospital has these fantastic blood warmers (thank youuu to my amazing nurse who thought to try that!) and that helped significantly with the swelling. After the first transfusion, they drew my blood again and my hemoglobin was still below 8.4 so they decided to give me another unit of blood. It was getting late (blood transfusions take foreverrrr) and I just wanted to go home. My ER doctor said he would let me go home after my hemoglobin was back up after the second transfusion--it reached a whopping 8.5. I talked to him a bit about my condition and how I had been self-managing successfully before. Something in me reminded him of his own daughter, who also self-manages her health, and he came back and said he really just couldn't let me go home knowing I wasn't going to get the health I needed (I didn't have a gastroenterologist yet). He didn't want to see me back in the ER in a few days.

With that, they transferred me to Modesto hospital--an hour long ambulance ride away. My mom followed us there. I was checked into the ER around 1:00am, where the student nurse tried to draw blood from my IV and couldn't, and then tried to draw blood from my other arm and couldn't. She was rooting around with the needle until my mom finally told her to stop. She went to the head ER nurse and asked her to have someone more experienced do it--they were able to draw from the IV. Finally around 5:00am they admitted me to the cardiac unit of the hospital. You might be wondering why a gastroenterology case would be admitted to the cardiac unit. Well, the combination of my severe anemia (even after the blood transfusions), extremely elevated CRP, and very high resting heart rate put me as a cardiac risk patient.

Because of this, the hospitalist put me on Q4. This means they were drawing my blood every FOUR hours to check my hemoglobin levels. They also put me on protonix, an antacid, because my GI was extremely acidic (eat your veggies people!). At 7:00am the nurses prep for a shift change and the day nurse is officially on at 7:30a. My first day nurse, Jennifer, was phenomenal. She made sure we had everything we needed--she got extra pillows and blankets for my mom, made sure she had tea, she even got my mom in on the nurses' Togo's lunch run, and was frequently checking on me and my IVs to make sure my fluids weren't running out and there weren't any bubbles in my lines.

Q4 for a few days results in a pretty beat up arm

In the evening, I finally met the GI on call. When I was first diagnosed, it was actually proctitis not colitis, meaning the ulcerations were only in my rectum and had not ascended to my sigmoid colon or any further. So, I did not want to do a full colonoscopy unless it was necessary. Luckily, the GI was on board. He also put me on an iron drip that evening (and each evening for the rest of my stay in the hospital). Then I got the joyful experience of the colonoscopy prep. If you ever have the option, NEVER get the tropical flavoured one, it's absolutely disgusting. I sadly did not have a choice. Now, if you've ever had to drink this stuff, especially if you have an extremely inflamed colon, you know there isn't much time before realizing you have to go and going. I had a roommate and was VERY lucky in that she wasn't in the bathroom whenever I needed to get up, and also that my mom was always there to help me out of bed. It can be challenging when you're weak and wrapped in a way-too-big hospital gown and IVs. Not to mention fitting the IV machine in a very tiny bathroom is a struggle when you're in a hurry.

Meanwhile, I was still on Q4. Once you're admitted to the hospital, they send lab techs to draw your blood and let me tell you, they are AWESOME at drawing blood. Practice makes perfect is definitely a thing. My night nurse got anther chair and more blankets for my mom so she could put her legs up and try to get some sleep--nurses are awesome. I tried to get some sleep, but sleeping in a hospital is not an easy task. My roommate was a moaner and groaner, machines are constantly beeping and you have to wait for the night nurse to come in and replace the medication/clear the bubbles/turn it off, there's always commotion happening outside your room, and there's that pesky Q4.

Fast forward to my colonoscopy Saturday morning. They gave me demerol in addition to the anesthesia. All of a sudden I went from very awake taking my glasses off, to knocked out hard. Even with the demerol I distinctly remember a moment of "owww that hurts," but not being conscious enough to even open my eyes, let alone say anything. It turns out my ulcerations were no longer just in my rectum, but had progressed to 90% of my colon. NINTY PERCENT!! Now after this procedure I was extremely out of it, as to be expected. Post-anesthesia there is no asking the doctor questions, or even knowing the results of the test until he rounds later in the day. Luckily my mom was there as my advocate and she was able to talk to him after the procedure. She asked questions like, "What timeframe can this extensive progression of this disease occur?" His answer? Absolutely this can occur in ONLY ONE MONTH! I had no idea.

I don't remember waking up in the post-procedure room. I don't remember the wheelchair ride back to my room. All I can vaguely remember is saying, "I hate drugssss. I don't know why people like thissss." But I did know I didn't have anything to worry about because my mom was there, always checking on me, always talking with the nurses, making sure everything was on point and always being her very warm and friendly self. Not only is it so important to have someone there to support you when you cannot support yourself, but they can make magical things happen just by being NICE.

My phenomenal day nurse, Jennifer, liked us so much she somehow managed to get me my OWN room. This changed everything. Not only was I finally able to get some actual sleep without all the literal moaning and groaning from my roommate, but my mom was too! In fact, our new night nurse, Aman, got her a geriatric chair that reclined into a makeshift sleep chair. Again, nurses are awesome. Q4 continued.

The first "food" I got to eat--lime jello

Saturday night, post-colonsocopy, was also the first time I was allowed to have anything other than ice chips! I was so excited to even be able to drink water. But the food! Even the plain piece of chicken and some rice that I had for dinner that night was AMAZING. I hadn't eaten for about 54 hours. Q4 continued.

Sunday. Because I was moved to a different room, my day nurse changed. Introducing Megan! Another awesome nurse! But, lotsss of bleeding due to irritation from the colonoscopy. My GI seemed surprised by this (even in his 30 years of experience), but people I have talked to have experienced the same thing. So this may or may not happen for you. Due to all this extra bleeding, shocker!, my hemoglobin levels dropped again. The hospitalist ordered another unit of blood.

Now here was where things went awry. From my experience at the Sonora hospital, I knew that my body does not do so well with cold blood. Apparently blood warmers are not a thing in the cardiac unit at this hospital. They do, however, have warmers in the cardiac ICU. None of the nurses knew how to use it. Megan got this janky old looking machine and recruited another experienced nurse to help her set it up. Now the warming machine at Sonora hospital was basically a small box that the blood ran through--there was an extra pouch that was inside this machine, and that's all. There were no extra pumps, no extra cavities, just a simple portable warmer. The one at Modesto hospital was a very different story. It was an additional pump unit that had it's own container for the blood and a container of water that was warmed. It had a double tube system--the inner tube had the blood, and the outer tube had the running warm water. The transfusion went smoothly for about 2 to 2 1/2 hours. My mom had been napping on her geriatric chair, but got up at this time. It was getting close to dinner so it was time to call in my very special order (as close to AIP as possible, in addition to the no/low fiber diet the GI prescribed). It was at this time that she looked at my transfusion line and said, "what's that?" I looked down and immediately knew we had to act fast. I said "That's air in my line! Pause the machine!"

There were several more sections just like this further down the line, tracing back to the blood warming machine. This one was less than a foot away from entering my arm.

At some point over the previous couple of days, I had explained to her that having air in your IV line is not a good thing. Ordinarily small bubbles are not significant and won't do any damage. However, if there is too much, it can go to your lungs and cause an air embolism. Not good. The amount in my line looked pretty significant to me. We immediately called the nurse and she cleared the line (a pretty messy process), which somehow got air in it again. She took the warmer off. Had my mom, my advocate, not been there and see that exactly when she did, I might not be here today.

Luckily she did and I got to eat more delicious chicken for dinner. Q4 decreased to Q12! We were both SO excited about this. Helloooo sleep. The blood draw in the morning showed my hemoglobin was up to 10.2! Amazing! The hospitalist was reluctant at first, but eventually agreed that home was best to recover and I was released later that afternoon.

It has been a month and a half and I'm doing much better. I'm able to eat so many more foods, and even exercise! It's hard to think that a mere two months ago I couldn't even stand up to brush my teeth, and now I'm doing squats and going up and down stairs like no body's business. I'm eating mostly AIP, an indulging in some favourites (yum yum coffee and chocolate). But most importantly, I feel like I can enjoy and live life again. This has just another step in this GUTventure of mine...

Moral of the story...

*Always be sure to have an advocate there for you. It can be a parent, a sibling, a spouse, a friend. Anyone you trust to look out for you while you are unable to look out for yourself. It can literally save your life. PLUS, it is so comforting and so much less stressful knowing that someone is there to support you.

**Be nice to your nurses!! They are incredible, extremely caring people, and can make your healthcare experience significantly better.

***A special thank you to anyone who donates blood. It saved my life and I could not be more grateful.

If you got all the way to the end, thank you for sticking with me! I appreciate your attention and support. If you have any questions, want to share an experience, or anything else, please don't hesitate to reach out!

Happy Healing!

Disclaimer: This post is meant to share my experience, and to create awareness and a space for open communication. In no way is it meant to replace or override medical advice, and if you are experiencing any symptoms or have any concerns about your health you should consult your doctor.

#ibdawarness #ibdawarenessweek #ccawareness #ibd #ulcerativecolitis #healthadvocate #donateblood


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