Upper Endoscopy with Botox Injection...

This coming Thursday, I will be having an upper endoscopy(EGD) with Botox which is medically known as an Esophagogastroduodenoscopy. I have had at least six of these procedures in the past and have found them to be beneficial.

Symptoms I experience when it is time for another round of Botox:

• I experience pain and soreness in my upper abdominal area which is generally located at the top of my stomach right where my lower ribs are centered. It is especially noticeable when pressure is applied, like when I am nursing my daughter.
• Whenever I just begin to eat, I will start experiencing stomach cramping and spasms. Since this has been something that I have dealt with over the years, I try to mentally remind myself what is going on physically with my body. The sudden fullness that I am feeling isn't because my body is no longer hungry, it is because of my pylorus not functioning as it should. The cramping and spasms are a result of that. I try to slow down my eating and chew my food better. It is not always a helpful and productive process. Sometimes I am unable to finish my "GP sized" meal so over time, if this continues, my weight will drop.
• It is extremely rare for me to wake up during the night with any type of abdominal pain. (Intestinal pain is a different story.) When I am in need of another round of Botox, I will wake up during the night and experience upper abdominal cramping and spasms.

Results I experience after a round of Botox:

• Usually within a few days to a week, I will notice a change in the frequency and intensity of the stomach cramping and spasms. The time frame varies with each procedure. Over time I am able to resume my normal diet and amount of food with no pain. 

What is an endoscopy with Botox injections?

An upper endoscopy (EGD) is a procedure that is often performed as an outpatient procedure. It is where an endoscopy of preformed and Botox injections are administered into the pylorus. It is the same idea as a having a pyloroplasty done, just less invasive.

Pyloroplasty: A surgery where the lower part of the stomach (pylorus) is widened to make it easier  for the contents of the stomach to pass through into the small intestines.

Botox Endoscopy: It is generally an outpatient procedure where an endoscopy is performed. The   Botox is administered into the pylorus (the lower part of the stomach). The Botox helps relax the pyloric muscle so food can empty easier.

Pylorus: The lower part of the stomach which is muscular and thick. If the pylorus is thicker, food   has a harder time passing through which could account for stomach cramping and spasms.

Prepping for an EGD with Botox:

At the hospital where I go to have my endoscopies, the general rule is that you are to be NPO (nothing by mouth) after midnight with the exception of the allowed and approved morning medications. With each patient, doctor and hospital, the exceptions will vary. However gastroparesis patients are different with their digestive processes and are often delayed. The hospital where I am going has GP patients be on a clear liquid diet for twenty-four hours prior to the procedure and be NPO (nothing by mouth) after midnight except for the allowed and approved morning medications.

Procedure:

As with any procedure there is the whole waiting process. Once you have been checked in, you will be taken back to a holding bay/room and prepped for the procedure. You will give a brief medical history, check off your medication list and go over any known allergies. After changing into a gown and those fashionable hospital socks, you will have a blood pressure cuff put on, have the leads to a heart monitor and an IV placed. I am always dehydrated and dry so it is always hard for the nurses to find a vein. 

There is a nurse who works in the endoscopy unit at the hospital where I go. Her bedside mannerism and nursing skills are amazing. Years ago when I was having one of my endoscopies, as always, my veins were being hard to find. If they found one, it was either too small or it blew. They called her into place my IV (which has happened several times since). As she was walking up, she starts telling me who I am. She knew what type patient that I was, the disease I had and who my doctor was and not because of my chart. She is that good of a nurse. Her skills are amazing! We need more nurses like that today.

The anesthesiologist and doctor who will be performing your endoscopy will come by and access you. When you are finally ready, they will take you back into the procedure room. Where I go, they generally go through the process one more time to make sure that I am who I am. You will lay on your side, get hooked up to the machines (oxygen in your nose along with blood pressure and heart monitors) and have a bite block placed in your mouth which is secured around your head. Once you are ready and everything is placed, the sedation medication is given.

One time, I had had some type of test before my endoscopy. I was in the room, hooked up, prepped and ready. Luckily for me, the sedation hadn't been given. It hit me, I had to go to the bathroom. It was the biggest ordeal and inconvenience to get everything unhook and reattached. The lesson in this story, use the bathroom before your procedure. It never hurts to try.

In the past, I have been given a combination of Fentanyl and Versed. Recently, I have been given Propofol. Personally I seem to wake up easier and quicker with the Propofol. I do not have the lasting drowsiness. Once sedated, the endoscopy scope is inserted through the bite guard by mouth through the esophagus and stomach into the pylorus. The Botox is administered here.

Post Procedure:

It is a quick procedure. Once you are back in the holding bay/room and awake, your doctor will come in and discuss the procedure with you and your designated driver. Afterwards, you will be discharged. As with any sedation, no driving is allowed. It is a day where you can lay around on the couch and watch tv without feeling guilty. Your throat may be a little sore from the scope. I have never had any issues with nausea after sedation. The success of Botox varies with each person. Some patients experience relief immediately while others do not. The effects of Botox usually last around four to six months for me personally.

As always, I am not a doctor. I am just sharing my past experiences with Botox. Each patient is different so the results will be different. 

This picture was taken with my daughter after a endoscopy with Botox.

http://www.botox.com/

http://www.gastroparesisclinic.org/treatments.php?pageId=1181&moduleId=204

http://www.mayoclinic.org/tests-procedures/endoscopy/basics/definition/prc-20020363

http://www.medicinenet.com/endoscopy/article.htm

https://medlineplus.gov/ency/article/002922.htm

an important life lesson...

It is hard to believe that the end of the year is here. Honestly, where does time go? This upcoming May, it will be eight years since my diagnosis of gastroparesis. Looking back, I never thought that I would go through and experience the things that I have experienced over the past eight years. I feel that my experiences have made me grow as a person. Several years ago when I was really struggling with my gastroparesis, I often wondered what would happen to me as a person based on what the doctors told me. I never imagined that I would be at peace with my health condition, be happily married and be a mom.

On Christmas Eve, our daughter will be four months old. It simply blows my mind. She has been such a blessing to us. Motherhood is amazing. Over the years, I had doubted and worried what life would be like if we were to have children. Would I be able to physically do it? What kind of life would we/I be able to give our child because of my disease?

Several weeks ago, I noticed that my GP was acting up. I began experiencing stomach spasms. Almost immediately, I knew that it was time for another round of Botox. I had always wondered what would my child think about seeing me in the hospital. Would it bother them? Would it effect our relationship? What would they think? I went last week to have the Botox administered into my stomach. As I was being taken back into the procedure room, I thought about how my disease was taking me away from my family. Instead of spending time at home making memories, we were at the hospital. I have always feared that I would miss out on some of our child's life because of my disease. Whenever I woke up, I was greeted by my husband and daughter. After I woke up and got my bearings, I asked to hold our daughter. I was a mess physically, but I learned a really important lesson. Regardless to how I feel or look, whether I'm at home or in the hospital, I will be my child's mother. My disease does not affect or change that.

an uneventful summer...

This summer has gone by so quickly. It is hard to believe that it is already August. Jacob and I have been talking this past week. This coming Sunday, August 10th, we will have been married for one year. This past year has gone by so quickly. It honestly seems like we just had our wedding, like it was yesterday so to speak. 

Since that time, I lost my sweet boy Duke. Duke was an amazing dog. He grew up with my brother and I. He was always right there along side of us. We pretty much did everything together. He was a very protective dog. I always felt safe when Duke was around. After I was diagnosed and eventually had to leave my job, I grew even closer to Duke. Whenever I would be drinking my clean out preps, Duke would lay right at my feet with me. After coming home from every procedure or surgery, Duke would be there waiting. It was just comforting and sweet.

After Duke's death, it was really hard on me. I didn't deal too well. Jacob and I decided in time to get another puppy. With Duke being part lab, I knew that I wanted another lab for their companionship and good nature. We adopted Pepper. She is a combination of lab, bullmastiff, great dane and pitbull. She's going to be a big girl when she is full grown. She is just as friendly, loyal and protective as Duke was. She is FULL of energy and into everything. Puppies are so much fun.

Our summer has been pretty low key and uneventful. My clean outs are still about the same. Some days they work and others not so much. Back in June, I had a "really good" clean out. I woke up the following morning and knew that it had been too much on my body. I could barely move. I spent all morning on the couch and finally let Jacob know that I needed to go to the hospital. I had started vomiting from being so nauseous and dehydrated. There was no way that I would replenish the fluids that I had lost. When we got to the ER, Jacob had to check me in. I was asked if I needed a wheelchair to get back into a room but I refused. Yes, I may pass out once I get to the bed but I am determined to make it there by myself. Hello stubbornness!

After they found an vein, got some fluids and medication on board, along came the blood work. In my head, I was thinking two, maybe three IV bags and I am out of here. I will be perfectly fine, good as new. My ER doctor, who was really good, came in and explained that I had acute kidney failure. My blood work revealed that some of my levels were off as well and as a result I needed to be admitted. I didn't really know what to say. I had just had an ultrasound of my kidneys a few weeks earlier which showed that my kidneys were fine. My bladder wasn't functioning as it should and was retaining fluid but my kidneys were just fine. I had only heard stories of this happening to patients. How could this happen to me? 

Unfortunately my clean out was to blame. My body just couldn't keep up with the clean outs anymore. My doctors recommend that I speak with my GI about getting some type of port (I believe that is the correct word) where I can run IVs at home during the night while I clean out so that this doesn't happen again. During my hospital stay, I had eight IV bags to my knowledge which resulted in me retaining eighteen pounds of fluid. It was so uncomfortable and I prefer that to not happen again. (Are those legs and ankles not scary looking?)

When I see my GI next week, we'll discuss the whole port idea, the possibility of another round of botox for abdominal pain, my clean outs as usual and weight gain.

a GI appointment...

I went to see my GI the other week. The appointment was very beneficial and productive. During the appointment, we discussed the success of the Botox injections that I received back in December to help  reduce my stomach spasms. Last fall I started experiencing these painful yet nauseating colon spasms. When this first started happening, I could not figure out what was going on. Is it even possible to have pain in the remaining eight inches of colon that I have when it isn't even hooked up to my digestive tract. Very, very strange. After speaking with my surgeon and GI doctor several times since then, the colon spasms haven't stopped. It is just something patients sometimes experience after having the type of colon surgery that I had. However they are so random. I never know when they are going to happen or where. I was once in the grocery store and it was so bad I honestly thought that I was going to have to just leave my cart in the middle of the store and walk out. At this last appointment, my GI gave me something to help with the spasms. Hopefully the is new medication will help during those unpleasant times.

Another thing we talked about during my appointment was my weight. Fully clothed, I weighed in at 85lbs. My GI expressed his concerns and dislike about my weight which I fully understand. This brought us to my clean out routine and "future plans". He explained that he did not want to remove any of my small intestines. We discussed my current routine and my small intestines decline in motility just like with my colon. As for now, I am to continue clean out as is doing it three times a week. As time progresses, we will up the medications as we see fit. If my Linzess stops being as effective as it is now, we will substitute it for another medication in hopes to buy me some time. The whole overall goal for me is to not max myself out medication. He did explain to me that when the time comes, we can do a feeding tube which would be placed into my small intestines for additional nutrition and possible weight stability. I am sure my facial expression was not the best when I heard that but I'm a determined and stubborn person. I am not interested in having a feeding tube. I have enough going on below my rib cage. I do however know from experience, that once you get to a certain point and you're so sick, you'll do just about anything to feel better.

This is taken almost a week after my colectomy. It was bad.

These were taken the morning and afternoon of my ileostomy surgery. I made Jacob take these pictures so I could look back and visually see how bad it was. Over time, you sometimes lose perspective and forget how an experience actually was. The morning of my ileostomy surgery, I couldn't move without vomiting. I couldn't move my hands and feet. I have never been so sick in my life than what is depicted in these two pictures. During those hospital stays and just being so sick, my fears and perspectives changed. You could have pretty much done whatever to me medically because I was so sick. Situations like these are what my GI and I are trying to avoid. If that time does come, I want to already have somewhat of a plan in place so I am not sick as a dog and having to make a life altering decision.

Since Jacob and I have been married, I have done really well during my clean outs at night. I have only blacked out, no passing out. Our bathroom is separate from our bedroom so I have always wondered if he would hear me if I was to pass out in the bathroom. I have to sleep with the fan going so I don't get hot and I am honestly not waking him up every time I get up during the night. To me, it's ridiculous. Well Wednesday night during my clean out, I got up to go to the bathroom and I had to sit in the floor to finish cleaning my bag. Looking back now because hind sight is always twenty-twenty, I should have known I was in trouble. I got up to wash my hands and I just got that feeling. I thought to myself that I'd better get back to the bedroom. I made it about two steps into our bedroom and I passed out cold. I think my head hit the door before hitting the hardwood floors because it was throbbing. My left side took the blunt of it. It took me a few minutes to get my bearings back. Needless to say, Jacob had no problem hearing me and I'm pretty sore from all of it.

the effects of GP and a cold....

In December I went to have another endoscopy where my GI doctor stretched my pylorus, the part where my stomach and small intestines meet. While he was in there, he administered some Botox injections to help stop the spasms that I had been experiencing for quite some time. Before the procedure, I got a chance to talk to him about my clean outs. Over the past few months, my clean outs have just become more difficult and less effective than when I first started back cleaning out after my ileostomy surgery. We had discussed the week before over the phone my concerns regarding this. I am currently half way maxed out on my cleaning out routine (medication wise) and it has only been since April since I had my surgery. It isn't looking good considering how quickly I've had to increase my dosages. Originally when I started cleaning out, I "planned" on stretching the increase in dosages way out, however this hasn't been the case. At the rate I am going, I am going to be maxed out before too long. I explained my concerns to my GI and asked him why this was happening and what in the world was I going to do even though I know that it is unrealistic to ask that because that is something that we will deal with when we get there. We just deal with today and take it a day at a time.

We came up with a plan of increasing my Linzess on the days I clean out. On those clean out days, in the mid-afternoon, I will take an additional Linzess and use it as a "push". This will help give me a better clean out and buy me some time without having to increase my clean out medications. The downfall is that I am already on a higher dose of that medication and it is expensive. My insurance doesn't want to pay for the additional medication. If we can't come to some type of middle ground, there are several similar medications that we can try. Overall, I do feel like I have a little bit of room to experiment with those medications and buy myself some time. That gives me some comfort and relief. However the whole reason I am dealing with this is because my small intestines are doing the same time my colon did. I am losing the function of them. A few years ago when I found out my colon was losing its function, I had a test done. I found out that my small intestines were fifty percent slower than the average person. I just assumed that since they were already slow, they'd eventually get slower and that's what I am dealing with today. It is kind of weird, it bothered me at first because I've already been through this with my colon. I really didn't want to go through it again. But then, the more I have really thought about it, I'm fine with it. God isn't going to give me more than I can deal with. I have been through this before. I can do this again. I do hate it for my husband and family. It isn't fair for them. I have learned something though from working with my previous job and I will never forget this. Regardless of my medical situation, I live in a place where I have access to medical care. I don't have to travel for days on foot or wait for a doctor to come. I have clean water and clean supplies to take care of my ostomy. I am extremely blessed.

As I have stated before, I am stubborn and I think I can do whatever I want whenever I please. My GI has tried to explain to me as well as my family that I am not normal. My immune system is not strong. I believe around seventy percent of your immune system is in your intestines. This makes me more susceptible to illnesses as you can imagine.

It was the weekend before Christmas. I had been feeling really well and went out to run a few errands. That night I started feeling funny. I just assumed it was a GP flare up since those can range in feelings with me. I was wrong. It turned out to be a cold and I can't stand having a cold. I made a horrible mistake and tried to clean out the following day. It only made me feel worse because it wasn't an effective clean out and it left me feeling miserable and weaker. I didn't hardly leave the couch that weekend. On Monday, I felt somewhat better so I assumed that I was getting better. Wrong. Tuesday, that being Christmas Eve, I was determined to feel good. I was trying to do things around the house and of course for the holidays but I could not breathe. It was as if I couldn't get enough air because I didn't have enough energy and of course I'm trying to do stuff. I should have been resting but of course, I wouldn't listen. We were suppose to leave Thursday morning to go on vacation so I needed to clean out Christmas day. I had no idea how I would be able to physically do it. I had this fear that I wouldn't be able to move Thursday morning from my clean out due to being so weak.

I woke up Christmas morning feeling pretty rough. I got the majority of my clean out medicine down without losing it. I promised Jacob that I'd never clean out again on Christmas. I knew that day would be horrible. We went to both of our parents' houses for Christmas. I wasn't missing the festivities. My nausea was through the roof. I know I took more than the recommended dose that day. It was kind of like a catch twenty-two. It had to keep myself hydrated to avoid a migraine but the liquids made me so nauseous. What do you do? That night at my parents, I was so nauseous and out of breath, I could bearly move. I still hadn't packed for vacation. When we got home, Jacob said that he'd do it for me but I'm all about control (one of my downfalls). I don't know how but I got myself packed and ready to go. I did a lot of praying that day.

The next morning when I woke up, I was so weak I couldn't shower. I shower every day regardless. I was in the bathroom and nearly passed out. At that point, Jacob insisted that we go to urgent care. Normally, I would bulk him and insist that we wait a while and see if things get better. However I listened and made my way to the car. I was so weak and unable to breathe, I wondered if I'd make to the car. We got to urgent care and waited for hours. I have never felt so bad in my life except for the day of my ileostomy surgery. I felt the very same minus the vomiting. The PA that saw me told me that if she would have saw me in the ER, she would have been doing a work up for sepsis. I felt real good about then (just kidding). She referred me to the local ER. There was no way I was riding to the hospital I normally go to. She believed that it was just a cold but I needed to have fluids, lab work and x-rays. When we got to the ER, they took me back within minutes. The ER doctor wanted to check to make sure I didn't have blood clot in my lungs. My labs and x-rays came back normal. It turned out to just be a cold. He explained to me that with my immune system combined with my GP, it was just more than my system could handle. I was really shocked. If a cold did this to me, what would the flu do? Needless to say, I'm pretty scared of a cold. I got on the scales a few days later to weigh and my weight had dropped to 84lbs. Since then, I have been really careful.