*Hahaha jk

THE BEFOREMATH

As you are probably aware, I was diagnosed last December with gastroparesis after many months of extreme stomach and back pain, nausea, vomiting, and general feelings of an alien baby trying to rip itself out of my abdominal area. Gastroparesis is a condition that affects the movement of the muscles in the stomach. It makes it difficult or impossible to digest food.

I started seeking medical attention for the symptoms way back in May or June of last year, but no one knew what was up. It got to a point where eating a meal would cause me to barf about 30-70 times a night. I didn’t understand how someone could barf that much and still be alive, but luckily I was still ticking. I went to the emergency room many times pleading for help but they just threw morphine at me for the pain and shrugged their shoulders. Luckily my family doctor, who is the best person in the world, worked hard to get me in to see a gastroenterologist. And luckily that gastroenterologist was also an amazing person who worked very quickly to determine the cause of my symptoms and to help put me on a treatment plan.

After a scope he determined that I have gastroparesis and placed me on a medication called domperidone (insert jokes about champagne here). One pill about 30 mins before each meal and I was livin’ the dream. The dream here being that I didn’t barf up my entire insides after each meal anymore. That’s basically THE dream everyone has for their lives right? Yeah, thought so. So that was working wonders and I started skipping through life again. Okay we all know I wasn’t actually skipping because I can barely walk through life at this point, but that is to say I was very satisfied with the results of the medication. I could eat again and I was in far less pain. Huzzah!

A few months on the one-pill-before-each-meal regimen, I noticed that the pills started to seem less effective. The nausea, vomiting, and pain were coming back after most of those meals. So I went back to my family doctor who told me that my body can get used to the medication. She upped my dosage to two pills before each meal and I left her clinic feeling hopeful. Unfortunately, I only had about 2 good weeks on the new medication dosage before I started getting violently ill again. So I rushed back to my doctor who tripled my dosage and said that I would now be on the highest dosage possible of the medication. So I left and tried that. It worked a little but the symptoms soon came back with a vengeance. (CURSE YOU, STOMACH!)

I did some research on gastroparesis and I knew that there were some possibilities in my future which included not being able to eat food anymore. I know some people with gastroparesis who have to get their nutrients through feeding tubes and IVs. I’m so glad those options are there for them, but I’m obviously hoping to prolong the ability to eat food before we have to look at those options for me. And then I found some research on botox injections being used to treat gastroparesis. I read that a patient can go in for an upper endoscopy (which I have had before to diagnose the gastroparesis and it wasn’t too bad of a procedure), and a doctor can inject the pylorus with some botox to relax those muscles and help empty the stomach quicker.

So I made an appointment to go back to see my specialist and discuss my options. He wasn’t thrilled about how high my domperidone dosage was, and I certainly wasn’t thrilled about that either – especially because it wasn’t really working for me. So I asked him if I could bring up something I read on the internet and chat about the option of it. He was all ears, so I asked him what he thought about botox injections. He said he has never performed the procedure himself but he has read some studies on it, and it doesn’t seem to work for everyone who has gastroparesis. Generally, it is more effective for people with “Refractory Gastroparesis” which is a type of gastroparesis that doesn’t really have a known cause (unlike let’s say gastroparesis caused by diabetes, an obstruction in the esophagus, etc). I am one of those people and he agreed that I am at a stage where nothing else is working so we should at least give it a try.  I’m very thankful to have doctors behind me who are willing to go out of their comfort zones and try different things to help me have the best quality of life possible. I have had some doctors in the past who would have immediately shot down my ideas.

So my appointment was scheduled for a few weeks later, just in time for my birthday (and birthday cake).

PROCEDURE PREP

An endoscopy isn’t a very complex procedure so it doesn’t take much effort to prep your body for this. I received a letter in the mail from the hospital with instructions about what to do to ensure a successful endoscopy. The most important thing on that list was fasting. For someone with a healthy digestive system, it is recommended that you cannot eat food after midnight on the night before your procedure. I know that it takes way longer than usual for food to leave my body, so I decided to fast for longer. I wasn’t willing to eat something and take the risk that my doctor would go down into my stomach to inject the botox and find lots of food there, making him unable to perform the procedure. I was determined to eat cake for my birthday. So my procedure was on a Monday and I decided to eat supper on Saturday and then fast until after my procedure. Luckily this worked and my stomach was empty for my endoscopy. Success!

I was also given a sheet in the mail to list all of my medications, their dosages, the last time I took them and why I was on them. That’s pretty straightforward stuff so I’m sure you can figure that out for yourself without me having to explain how to fill it out.

That’s it! That was my prep! How easy, right?

THE PROCEDURE (DUN DUN DUN)

So for starters I will tell you the scientific name of this procedure: Upper Endoscopy with Botox Injection.

Matthew and I showed up about 45 minutes early for my procedure just in case they needed to prep me beforehand. We probably didn’t need to be that early but I’m an eager beaver so I probably wouldn’t have it any other way. I was also really nervous leading up to the procedure so I wasn’t thrilled at the thought of just sitting at home staring at the wall waiting for the right time to go to the hospital. I think the only reason I was nervous was for the results of the procedure more than the procedure itself. I’ve had an endoscopy before and it was very straightforward and not at all painful, so that didn’t really concern me. It was more of a “I have so much riding on this” sort of nervousness.

So we showed up early and had to wait in a secondary waiting room next to the clinic, which so happened to be in a little room filled with vending machines. That felt like a slap in the face when I had been fasting for 1.5 days but, like everything, I managed to get through it. I’m such a strong, strong woman.

I got called in to meet with the nurse before the procedure and I had such a lovely nurse. She asked me questions about the botox and the gastroparesis because it isn’t a very common thing. She then asked me some questions about my health, if I had pacemakers and such, informed me that I couldn’t drive or make any important legal decisions for the next 24 hours, and put my IV in. I was then sent back out to the waiting room until they were ready to take me back for the endoscopy.

Sometime later they called my name again and it was go time. I followed the nurse into the procedure room, confirmed that I was, in fact, Lisa Walters and I was, in fact, born on my birthday. They put me on a stretcher and wrapped a heated blanket around me. It felt like a spa day. Then my doctor came in and we had a little chat where he explained the procedure to me again. They began by spraying this really gross freezing spray into the back of my throat. It tasted nasty but I got over it quickly. Then they had me lay on my left side, gave me some sedative medication through my IV, put a mouth guard in my mouth so I wouldn’t chomp down on the tube, and it began.

I remember feeling like I couldn’t really breathe when the tube was placed in my mouth, but I was also sedated so I really didn’t seem to care. It felt uncomfortable but it was cool seeing my stomach on the screen. But then they made me close my eyes. I don’t remember a lot. I remember some uncomfortable feelings and a bit of pain in my stomach when I assume the needle was injected, but most of it is a blur. I didn’t think I was really out of it, but later in the evening I made a comment to Matthew about how it only took about 2-3 minutes but he ensured me I was in the room for more than 30 minutes.

During the procedure, my doctor went down through my esophagus, stomach, and pyloric sphincter. The pyloric sphincter is where the injection was placed, in hopes to relax the muscles in the pylorus. Look at me, sounding like a doctorb (the b is for bargain).

After the procedure, they told me I did a great job (obviously…I’m wonderful), and then wheeled me into a recovery area. Matthew met me there and then I tried to take 75 million selfies with him while we waited for my doctor to come and have a chat with us. I think I was so busy paying attention to selfies that I didn’t even listen to anything the nurse was saying. So apparently sedated Lisa likes pics of herself even more than conscious Lisa does. I didn’t know that was possible.

 

 

 

 

 

 

 

My doctor came in to see me and said the procedure went well. He told me I only had to wait an hour before I ate again. He also told me I will have to stick to my regular domperidone dosage before meals, at least for now. I am going to schedule a follow-up appointment with him for next month to see if we can lower the dosage at all. He didn’t give me much information about how I would feel after the procedure or when I would start to see results, because he had never done this before and there is so little information available. The results also vary so much between patients that he couldn’t guarantee anything to me. He said “hopefully this works” and was on his way.

THE AFTERMATH

As soon as the procedure was done I wanted to eat a 5 course meal. I read information about the procedure online that said effects of the botox can be felt immediately OR it may take time for effects to be felt. That didn’t really narrow it down for me, but of course, I gravitated towards the “felt immediately” because that was what I wanted. So I expected myself to feel better ASAP, which wasn’t very realistic. I ate some chicken fingers for supper a few hours after the procedure and felt very uncomfortable and had a lot of stomach pain. So naturally I got very sad and kept saying things like “IT DIDN’T WORK AND I WILL NEVER GET MY CAKE AGAIN, WHY IS LIFE SO CRUEL TO ME?!?!” Matthew reassured me that I had to give it time because he is smart and level-headed and also wasn’t on sedatives.

The next day I still felt some pain and discomfort. My stomach was really tender and it even hurt to sit up. I assume that it was a bit swollen and sore from the injection. I wasn’t expecting to feel that way, mostly because I had never found any information on the internet about what to expect following the procedure. Matthew and I decided to go see a movie that night because I wanted popcorn in and around my face. So we went to see It, I screamed a bunch, I ate tons of popcorn and m&ms, I felt stomach pain, I came home and threw up and then laid on my heating pad for the rest of the night. I made more comments about the procedure not working and I probably cried a bit because I’m really good at that. But one thing I did notice was that I only threw up once, which is like a record for me. Usually, when my stomach is full and I can’t digest the food I will throw up at least 8 times before I start to feel some relief. “So maybe now my thing is just throwing up once after every meal instead?” I wondered. Matthew and I agreed that it would certainly be an improvement. But I really shouldn’t have jumped to those conclusions so quickly, maybe my body just didn’t want me to stuff it full of butter-laden popcorn and chocolate so soon after a procedure and after 15 months of not being able to eat snacks. I was being impatient.

The following day I still felt pain. Lots of pain, but not my usual gastroparesis pain. Although I don’t really know the pain you are supposed to feel after your pylorus is injected with botox, I assumed that was where the pain was coming from. I spent another day being sad that things didn’t work.

AND THEN THE FOLLOWING DAY I FELT REALLY GOOD AND I ATE CAKE!!

So after about 3-4 days of recovery from the procedure, my stomach started to feel like it used to feel before it crapped out on me. I can now eat 2 meals a day and a small snack. That is a HUGE improvement because I was down to eating one small-ish meal every evening and then half the time throwing that up too. I am SO impressed with the results of the botox. I have had 4 different kinds of cake this week: red velvet cake, chocolate eruption cheesecake, chimi cheesecake, and ice cream cake. I also had a cronut. IT WAS GLORIOUS.

I’m going to focus on eating more nutritious things going forward, but I really needed to get all of that cake in my mouth after over a year of not eating cake. I feel like a changed woman.

I plan on keeping you all updated about the botox, because we have no real clue how long it will last. Studies expect me to get approximately 6 months out of it. My doctor hopes I can get closer to a year. Then I will go in for another injection when this one starts wearing off. It’s certainly not a permanent fix because it doesn’t cure the gastroparesis and over time my body will get used to the botox and it won’t be as effective. But I’ll let you know how long my injections work for and how many years I can get out of it before we start looking at other options. Also, I’ll let you know how effective the treatment is for making my stomach look younger and wrinkle-free! Jokes and jokes.

Have any of my readers who have gastroparesis tried this? What were your results? I want to know all the things!

5 Comments on A New Hope: Lisa’s Inspirational* Botox Journey

  1. Jayne
    September 18, 2017 at 5:50 pm (4 weeks ago)

    Hi lisa loved reading this. I’m curious, there’s a suspicion of EDS right? EDS brings along lots of weird spasming shit and I wonder if that’s what has impacted your sphincter muscle??? Botox obviously relaxing it. My mum suffers with a spasming oesophagus so I might talk to her about botox! Thanks for an entertaining and informative post. Hope it continues to work for you xx

    Reply
    • damselinadress
      September 18, 2017 at 5:55 pm (4 weeks ago)

      Hi Jayne, yep the doctors are pretty sure I have EDS. I know there seems to be a lot of people who have both EDS and gastroparesis and I’m not entirely sure of the science behind it. My doctor also isn’t 100% sure it is my sphincter muscle that is my problem but he wanted to try just in case. I hope Botox is an option for your mom!!

      Reply
  2. Sheryl
    September 19, 2017 at 1:56 pm (4 weeks ago)

    Very interesting read. Yes keep us updated, and eat some cake for me!

    Reply
  3. Ariane K
    September 19, 2017 at 2:15 pm (4 weeks ago)

    I’m just so happy for you!!!!! I’ve been on an extremely restricted diet because of my mystery disease, and would cry happy tears and eat cake all week if my GI system suddenly worked again. What a dream – I mean, the fact that it worked at all is SO BIG! Kudos to your doctor for being open to trying, what a gem. And way to advocate for yourself and push the envelope! So, so great!

    Reply
  4. Madison
    September 19, 2017 at 7:04 pm (4 weeks ago)

    I am 18 years old and I have Ehlers-Danlos, Dysautonomia , Hypothyroidism, Central Adrenal Insufficiency, Widespread Joint Instability, Scoliosis, Chronic Pain, Low Vit D,  Raynauds Syndrome, Colonic Inertia, Small Intestinal Dysmotility, Gastroparesis, Small Intestinal Bacterial Overgrowth, Pancreatic Insuffiencey, and  Esophageal Spasms which all cause a great host of symptoms.  I was diagnosed with GP in December 2015 and we tried many medications and then we tried botox in May 2016 got 2-3 months out of it and then got another round in October. When it wore off that time the effects were catastrophic. I couldn’t tolerate anything at all. I ended up on an NJ tube. I saw a surgeon in March and we decided to try a pylorplasty (the permanent surgery version of the botox). I had the pyloroplasty at the very end of May and instead of helping it irritated my GI system severely made my motility slow to a near halt. I stayed in the hospital for 4 days (normal is overnight) and could keep nothing down but was sent home anyways. Then two days later I was in the ER and then admitted for 17 days and now have been on TPN for nearly 4 months now. I could no longer even tolerate NJ feeds. I have also been told by a motility specialist they found botox and placebo injections have the same effect and people felt massively better with the placebo injections to, so the science isn’t completely sound on it. In addition, apparently the gastric pacemakers are better for people have Diabetic gastroparesis or idiopathic vs caused from a connective tissue/autoimmune conditions

    Reply

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