My struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
Pancreatitis is kicking my ass. I feel like right now I’m in the longest endurance race of my life. I’ve been missing from the blog since August 2nd. A lot has happened since then and almost none of it good.
The Beginning Symptoms of Pancreatitis, August 3rd
My family drives to Reedsport, Oregon every summer to visit grandparents. On the way up on August 3rd, I experienced very bad nausea, burping, and constantly felt the urge to throw up while climbing the mountains.
I thought this was just a side effect of traveling for the first time with a stoma. But now I believe it was the beginning symptoms of pancreatitis.
Eventually, it started to hurt really bad whenever I ate. I thought it was a partial blockage at first, so I spent three hours chugging hot coffee, tea, and water. But I continued to be in a lot of pain. This is odd, because all the partial blockages I’ve experienced before, once they’ve cleared, I felt completely fine.
But this wasn’t happening and each day got steadily worse. At one point, the pain was so bad that I hurt everywhere, I was crying, rocking back and forth, and my knuckles were white from clenching my hands.
My family gathered around me, watching me go through all this pain, and asked if they should take me to the ER. I said no though. Because when you have a stoma, it is very clear when you should go to the ER:
- Fever over 100.5
- If you can’t handle the pain
My pain was unmanageable. But that’s a subjective feeling that has no tangible proof. Without other symptoms, I don’t like to go to the ER because I’ll probably end up being really uncomfortable for hours only to be sent home. I might as well be uncomfortable in the comfort of my own home.
I stopped eating and called an advice nurse, who made a phone appointment with a doctor. The doctor said there’s not much I could do except take antiacids. Tests needed to be done in order to see where the problem was coming from (pancreas, kidneys, gallstones, etc.).
My Ostomy Nurse’s Advice, August 8th
I remembered to email my ostomy nurse on August 8th. Ostomy nurses deal with people like me all the time. In some ways, they know more than your primary care doctor because they are connected to all the specialties like GI and surgery.
She called me back the next day and wanted me to go to the ER right away because she thought I had a narrowing of my intestines (a stricture).
But after she realized I was still having output, wasn’t bloated, and wasn’t vomiting, she decided to pass along all the info to my surgeon and make an appointment with him.
She told me to go to the ER right away though if I
- Developed a fever
- Started vomiting
- Became bloated
I also needed to chew my food as if my life depended on it and I decided to eat things that are easily dissolvable, like white bread. This managed to reduce my pain to manageable levels and by August 10th, my family started the trip home.
Waiting for my appointment with my surgeon
Once I got home, I didn’t know what to do because I still hadn’t gotten a response from Dr. Freshman, my surgeon. I called my ostomy nurse and she gave me a specific number to call and ask for an appointment with him. I got one for Monday, August 15th.
During the days leading up to the appointment I ate
- Sourdough toast
- Scrambled eggs (but not every day-they caused some pain)
- Juicing drinks (I avoided red for possible imaging tests or procedures)
- Nutritional drinks like Ensure to make up for the calorie deficit
Doctor Appointment with Surgeon, August 15th
My mom drove me to Antioch for my appointment with my surgeon, who looked slightly worried about my symptoms. He was sure the problem was with the pancreas and sent me off to get labs.
Antioch is more than an hour away so by the time I got home the lab results were back. The lipase test showed my levels were at 2,060. The acceptable range is 0 to 95. My number was more than 21 times higher than it should be.
I, however, didn’t know what I was supposed to do, so I took a nap. Eventually, my surgeon called to tell me that with levels that high, immediate hospitalization is required. There is no other way to get the levels down besides bowel rest and pain control.
The ER, August 15th
Even when you know hospitalization is going to be required, you still have to go to the ER first. And it took forever to get admitted to the ER. As I was waiting, curled up into a little ball on the chair, the pain started getting worse and worse.
With pancreatitis, the pain is in your upper abdomen and it is really intense. It feels like someone is stepping on you because there is so much pressure.
The days before being hospitalized, it only hurt if I touched it. But by this point, it hurts all the time especially if someone touches it or if I move so that my stomach crunches.
Finally, they get me in and hooked up to an IV, and give me morphine. After an ultrasound and C-Scan, I’m admitted to the hospital.
Pancreatitis Pain Management
Morphine is an experience. You don’t have a trip but it hits you very strong. Strong enough that it’s a little unpleasant in some ways.
You feel in your heart and chest first, like BOOM, and then you immediately feel it go to your stomach. When it gets to your stomach, there is a hot sensation and then it tingles out to your extremities.
It’s very weird and intense. It could almost be nice feeling but it’s a little too much. But it works instantly. The pain disappears in a blink of the eye.
I’ve had morphine before but it’s not usually the first thing they give you. Usually, it’s liquid Tylenol.
You have to be in excruciating pain or even begging for morphine. Although I have to admit, by the time I get to the ER, normally my pain is bad enough I’m automatically given an opioid, usually Dilaudid.
But normally, your nurses start decreasing the doses after a few days and try to get you on Tylenol before you are discharged. But with pancreatitis pain, they kept giving me morphine through my whole stay. And they sent me home with Norco, which is a mix of hydrocodone and acetaminophen.
Nobody knows why the pain associated with pancreatitis is so bad. But opioids are often used since they work on the opioid receptors in your nervous system, changing the way you perceive pain to lessen the amount you feel.
My Stay in the Hospital for Pancreatitis, August 15-17th
I’m sadly used to hospital stays now. And the treatment for pancreatitis is very similar to how an ulcerative colitis flare is treated.
You have to go on bowel rest which means no water, food, or even ice. It gives your pancreas a break, allowing the lipase levels to go down.
When you are getting all your medication and fluids from an IV site, it’s important that you have one that works properly.
I have a whole bunch of bruises on my arm and hand because nurses had to mine my veins. The ER puts IVs in the crook of the arm. The hospital likes to put IVs in your hand or forearm.
Because when you’re in the hospital for more than one day, it’s really hard to have an IV in the bend of your arm. It’s impossible to keep your arm straight 24/7. The slightest bend has the pumps beeping at you incessantly.
Hospital nurses always complain so much about ER nurses putting the IV in the bend of the arm. Because of this, I’ve always been curious about this difference in IV procedures.
So, this time, I asked my ER nurse if she could put the IV in my hand since I knew I was going to be hospitalized. But she told me that the ER’s policy is for the IV to be in the crook of the arm because they don’t know what kind of tests patients will be getting.
I was bummed because I knew this meant eventually my IV would fail. And sure enough, really early Tuesday morning, my IV stopped working and my machine started beeping.
My first experience with a vein illuminator
The nurse tried to put an IV in my hand and it was very painful because of IV infiltration. This is when fluid leaks out of the vein into the surrounding soft tissue, causing inflammation, tightness of the skin, swelling, and bruising.
She didn’t want to torture me a second time, so she called an ICU nurse up into my room. I had to wait about an hour for her.
When she came into my room, she was pushing a machine that looked like an overhead light. It shines a light on your arm and veins show up that aren’t visible to the naked eye. It’s a lot like a black light for veins.
Apparently, everyone calls this woman for mining veins because she kept getting calls and she would answer “oh I’m with this patient now, I can be down there in 10 minutes.”
With the light shining over my arm, illuminating my veins, she tried one in my forearm. But that one infiltrated too. Luckily, she stuck a vein on her second try and I got all hooked up again.
But I found it funny and frustrating because they went through all that work and five hours later the doctor takes me off the IV.
On my second day in the hospital, they tried putting me on liquids. I had apple juice first and I threw that up. Later in the day I got some broth and was able to keep that down.
On the third day, the doctor on call thought I could try real food. My levels had dropped from 2,060 to 500. That’s still high but a whole lot better than being in the thousands.
He said, “If you do really well with the food then we will release you with some pain meds. Because it’s still going to hurt when you eat, but as long as you can eat and not throw up and not feel extreme pain, we can get you out of here.”
I was ambivalent about this. It’s not like I wanted to stay in the hospital but I didn’t want to leave too early and just have to come back later. The whole admission process is hell.
My room was right outside the nurse’s station and I heard the doctor telling my nurse this and she was like “Really? Are you sure she’s ready to go home?” I laughed to myself and thought, “thanks for sticking up for me.”
Later I had some jello, which made me nauseous, and then some toast, which I did okay with. I didn’t eat much of the lunch they gave me but I still ate some. And it gave me so much energy.
Before that, I was exhausted. When you’re in that much pain you tense up and everything hurts. And I wasn’t eating or drinking for days so I had no energy. It was a struggle to even walk from the car to the emergency room.
Post-Discharge Pancreatitis Recovery
Because I did well on the solids the doctor decided to discharge me on Wednesday August 17th.
My main goal during my pancreatitis recovery was to get my nutrition up and keep my weight on. This was so I could go on with my ileostomy takedown surgery. When you go into surgery, you don’t want to be anemic or malnourished.
But keeping my weight the same ended up being impossible with how sensitive I was to food and liquids.
Extreme Low-Fat Diet
I was not given a really specific diet to follow, only that I should avoid fat.
I’ve never kept an eye on the specific amount of fat I consume on a daily basis. But I’m having to do that now because I’m extremely sensitive to it. It doesn’t matter if it’s “good” or “bad” fat-all of it is bad for me right now.
I’m trying to not go over 10 grams, which is hard to do. But I find when I go over that number, the pain and nausea are worse.
The first day back from the hospital I made udon because, at its most basic, it’s broth and noodles. And I felt pretty good.
But on August 18, I violently vomited up my toast and butter. Sourdough toast with butter has always been my savior throughout my flairs. I fell back on it without thinking about the fat content of butter.
I could tell while I was eating it that it wasn’t perfect. But I wasn’t nauseous and I was able to take my dog on a walk. When I got back, my mouth was suddenly full of saliva, I grabbed a bag, and vomited. Later that day, I threw up all my water.
All the vomiting I was doing was a new experience for me. Throughout my life, no matter how sick I am, I almost never throw up.
For some reason, water made me very nauseous. And electrolyte drinks were even worse. Because of this, my dehydration situation was getting worse and worse.
I was having difficulty breathing and talking and I had no energy at all. My heart rate got extremely high if I got up to walk and my blood pressure was very low.
Rapid Weight Loss
When I was hospitalized on Monday, August 15, I was 116. Nine days later, I weighed 105, so I was losing a little over a pound a day.
Going on a Liquid Diet
By Saturday, August 20th, my pancreatitis pain started to increase again. On Monday, August 22nd I had my follow-up appointment with a primary care doctor.
He ordered more blood work and sent me off to infusion to get IV fluids because I was extremely dehydrated.
The difference between before and after getting IV fluids was drastic. Before, my mom was having to hold me up. At one point it felt like I was having a heart attack. After, I was walking briskly without any help.
The blood work showed that my lipase levels had increased from 523 to 575 and the doctor told me it would be best if I went to an all-liquid diet.
I bought a whole bunch of different stuff to try including jello, pudding, sherbet ice cream, and Sprite. But the problem with liquid diets is that everything is sweet. The only savory clear liquid is chicken bouillon.
The whole time I’m trying to recover from pancreatitis, I’m also worrying about my upcoming ileostomy takedown surgery. For a while I wasn’t sure if my surgery was still on because I hadn’t heard any news.
I got a call while I was still in the hospital from scheduling, reminding me of my surgery date and asking me pre-registration and pre-surgery questions. Also, all my pre-surgery appointments were still scheduled.
Before a surgery, there are always a lot of phone appointments with various people part of the surgery team. The appointment I was waiting for though was the one with my surgeon, which was on Tuesday, Augusts 23.
He laid down the facts, which helped me set my goals. In order for him to feel comfortable with the surgery, I needed to get my lipase levels down by half (around 290) by Friday, August 26th. Otherwise, the surgery would have to be rescheduled.
He was also very concerned about my weight and encouraged me to add some steamed vegetables into my diet. Even though the primary care doctor suggested a liquid diet up to the surgery date, he felt that would put me in danger weight-wise.
I’m Approved for Ileostomy Takedown Surgery
When Friday rolled around, I managed to get my lipase levels reduced to the desired levels, which means my surgeon is letting the surgery happen.
Ileostomy takedown surgery is super-fast and easy. They close the holes in my stoma, pop that part of the intestine back into me, and sew me up. This all takes about an hour. The surgery is Tuesday, August 30th with an arrival time of 8:30.
My Pancreatitis Diet Right Now
- For breakfast, I eat cream of wheat made with water, extra salt, and a drizzle of maple syrup.
- Mid-morning, I have a popsicle.
- Lunch is a soup mixed in my Vitamix containing chicken broth and a steamed veggie. I’ve tried potato, acorn squash, and cauliflower.
- Midafternoon is another popsicle.
- Dinner is soup again.
- Around 8 at night I have sherbet ice cream.
I’m 104 now and most of the time I’m extremely dehydrated. I got IV fluids again on Friday-my heart was racing so fast the machine couldn’t read it. It was kind of scary.
Getting up sucks. I get dizzy, tingly, and have to gasp for breath. Lying down also hurts sometimes too because my bones are protruding more than they usually do. I have no padding at all.
I’m so hungry that I’m beyond hangry. Which is very odd and honestly part of why I’m in so much pain. Every other time I’ve had to go on a liquid diet, I’ve been so sick that I’ve had no appetite. I never felt hunger pains or like my stomach was eating itself.
And I still feel pretty sick but my appetite is alive and well. So, all my pain is blending together and making it hard for me to decipher what I’m feeling at any given moment.
Is it pancreatitis pain? Intestinal pain? Or hunger pains?
At the end of my rope
Yesterday I made my Fire Roasted Tomato Soup which uses nonfat Greek yogurt. It does have a half cup of shredded cheddar cheese in it, but I figured with the serving size, it wouldn’t be too much fat. But I was wrong. I felt great eating it but 5 hours later, I was in a lot of pain.
I know how to deal with pancreatitis pain now and I know what causes it and what I can do to make it better.
However, what completely broke me and made me feel like I was at the end of my rope in terms of endurance and hope, was that the pain felt intestinal. I started crying because I was so overwhelmed with all the different types of pain I was feeling.
The pain was centered around the stoma but my whole abdomen felt like it was going through an ulcerative colitis flare. I’m not supposed to have ulcerative colitis anymore. And that’s why I was so scared, worried and stressed.
I’ve heard horror stories of people having their colons removed only to find out that they have Crohn’s disease. So, this horror story is playing in my mind, “what if that happened to me?”
Checking my stoma
I decided to take my bag off to check to see if my stoma was swelling up and cutting into the hole opening. What I saw disturbed me. I’ve always had a slope after the surgery. But I suddenly had a slope beneath my stoma too.
Whenever I take my bag off for longer than a bag change, I get in the tub. And as I was laying there, every time my stomach went through a cramp or spasm, the slope would bulge up and down.
And it was scary because every time the slope bulged down, it looked like my stoma was going to pop right back into my body, which would be very bad.
I felt incapacitated with fear. My first surgery didn’t scare me at all. Now I’m terrified that there is something else wrong with me. Even though there’s probably not.
I have an appointment with a GI doctor on Monday, the day before my surgery and hopefully, I’ll get some answers and find some peace of mind.
Finding Bravery and Positivity
I woke up this morning scared and was trying to figure what to eat. But I immediately got into a better mood because of Zion Harvey, the first child to get a double hand transplant.
The Today Show was on in the background and they were doing a piece on him, following up with how he was doing a year after the surgery. And he was so positive and happy. He’s doing amazing and has gone through so much and he’s just a little kid.
It reminded me of what Rosewana, one of the hospital housekeeping staff that cleaned my room, said about working around sick children.
She cleans the children’s ward. And some people refuse to clean that area or request to be transferred because they find it too depressing to be around children who are so sick. But she says she loves it because the children are so strong and positive and happy. She finds it inspiring.
Seeing Zion made me remember all that, and I said, “I was in a really bad place yesterday but today’s a new day. I can do this.”
I’m a food blogger scared of food
I’m scared of food right now. This unfortunate fear has occurred often in my struggles with ulcerative colitis and now again with pancreatitis. It’s one of the main reasons I’m a food blogger.
When I’m force-feeding myself even though I know it will hurt, when I try my hardest to keep from dropping weight drastically, I want to remember my love of food. I’ve always loved food. I’m a foodie. But ulcerative colitis forever changed my relationship with it.
Right now, I’m making a list of things I want to eat once I’m able to again. There is not one sweet thing on it so far.
I decided to share a picture of me with my ostomy bag. Just because I’m getting rid of it tomorrow, doesn’t mean it isn’t in my future. I need to love my body with or without it and accept what I cannot change. Wish me luck on my surgery tomorrow!
My story continues in Part XIV – Ileostomy Takedown Surgery
Facebook Video Updates
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Recovering from Pain and Standing in the Sun
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years