Tuesday, October 21, 2014

G-tube Placement

I was originally going to blog/vlog about my g-tube placement, but there were a lot of complications when I got tube placed. Not necessarily from the tube itself, but a lot of problems arose because the tube was placed.

I didn't want to vlog while I was in immense pain and discourage someone from getting it. I also was in so much pain that I didn't even want to move.

I'm one of these rare cases that had a lot of complications. That's probably because I have a stubborn stomach and I got my tube placed so late in my life.

So instead, I'm just going to do a wrap up of events. I'll might make a vlog too, but I'm camera shy.

Pre Surgery

I was very excited for my g-tube. I couldn't wait for my surgery to come. For me, the stress of eating was going to be lifted off my shoulders and make my life easier.

Post Surgery

I was in a lot more pain the both the doctors and I expected. I knew I was going to be in pain because I don't have to fat on my stomach, but I couldn't even lift my self. Anything that involved moving my stomach muscle (which is almost everything) caused me a good amount of pain. It was also immensely tender for anyone to touch my site. My GI doctor said it was strange how tender I was.  


When I was given my formula (Nutren 2.0), they gave it a slower rate with less food. After the first two feeds, I was really full. You know that feeling after Thanksgiving dinner were you could throw up from being so stuffed. That was me with just two cartons (roughly 16 ounces) of formula over 4 hours. I guess feeling that full was not so normal. 

I also had this abnormal pain in my stomach. Whenever I would eat, it would feel like someone was stabbing my stomach with a knife. The doctors were pretty confused on this one. I assumed it was because I had fasted for 36 hours and since my stomach was healing, I just had to take eating easy.  The stabbing feeling only occurred randomly when I ate, so I just thought it would go away. 

My doctors also started my on Flagyl for a bad stomach bacteria they found in my stomach. 

Since I had no infection and everything was healing really well, they discharged me 3 days later. 

At Home

It was hell.

Crying most of the day from the pain. Being so nauseous that I couldn't eat or drink. I couldn't finish my night feeding because my acid reflux would burn my chest and throat. I would almost throw up all my formula. The second morning home, my doctor told me to go to the ER because I screaming in pain from my stomach. After 10mg of vicodin, I was able to wobble to my friends car as she drove me to the ER. 

At the ER

My boyfriend was bored at the ER
Going to the ER has it's own long story, but lets say 5 hours later I finally got a bed after crying in the waiting room the whole time. 

They ran some x-rays of my stomach to figure out what was wrong. The good news was my g-tube was in perfect position and worked fine. What was causing all my severe stomach pain was that I was severely constipated. I hadn't gone poop in 5 days by the time I was at the ER. They said the culprit was all the opiates the doctors had given me for the pain. Between all the morphine from the surgery, Vicodin in the hospital and at home, and the morphine they gave at the ER, no wonder I couldn't have a bowl movement .

The ER sent me away with some Miralax (light laxatives). I started them when I got home that evening and all the next day. Still nothing. The pain was getting worst so I called my GI doctor while I was crying on the other line. She told me to get OTC laxatives because they were much stronger. That definitely did the trick. After 6 days, I finally got the stomach to start moving.

More Culprits

Even thought my gtube site was still very sore, at least I wasn't crying in pain from my stomach. After a week, I was finally able to start coughing without being in immense pain. 

I wish thats were everything got better,  but it didn't. 

We had two additional culprits. Flagyl and Nutren 2.0. 

My flagyl made me so nauseous that I could barely eat. I could barely walk. I felt faint just trying to use the restroom And speaking of restroom, I started having the opposite problem in the bathroom. Severe diarrhea 6-7 times a day. My night feeds would make me wail at night for hours. I wouldn't be able to finish them, then cry for more hours until my acid reflux finally would let me sleep. 

For the first time in my life, I finally understood what the doctors meant by "quality of life". They would always say, "this and that would increase my quality of life". I had no idea what they meant because I had never been in so much pain were it effected my life greatly. But on those nights, I knew exactly what they meant. I cried even harder thinking this is how I would feel for the rest of my life. 

After a few days of this going on, my grandma and I figured out the nausea was from the Flagyl. So we had that antibiotic changed out. Even though I started to feel better during the day, at night I would cry the whole night and be completely weak in the morning. By this time, the doctors were worried about my well being and told me I was being admitted back into the hospital for hydration and to figure out what was going on. 

Back in the Hosptial

10 days after my surgery, I was admitted back into the hospital. Ironically, I was feeling a lot better. I regained a lot of my energy since I didn't feel nauseous the whole day (thanks Flagyl). But the doctors were worried that I was severely dehydrated and started on what seemed like the equivalent of feeding me a sea of water. 

They tried the Nutren at a very slow rate over 8 hours. Lets just say after the second hour, I told the nurse to stop the feed. At the point, I knew it was just a formula change that needed to be done.

The next morning, they gave me electrolytes (pedialyte) through my tube at a higher rate to see if I could tolerate a higher rate and to give my body more fluids. It went it without me noticing, so they decided to start a different formula. 

As some side information, I have delayed stomach emptying. I can't eat very much and I don't get hungry often (hence why I'm got the g-tube). So the Nutren 2.0 was too much for my small stomach to handle. Nutren 2.0 does have a lot of calories, but it's also very dense. My body just couldn't empty the Nutren fast enough.

So they put me on Peptamen 1.5. Peptamen was less in calories, but since the formula was already broken down, it would be easier on my stomach. My stomach would have to do less work and hopefully wouldn't cause my acid reflux to flare up. The Peptamen went in very well. I just had very minor acid reflux, but I will take that any day over the Nutren. With all the problems being solved, I was discharged.

Back at Home

I was really nervous the first night with my Peptamen. All the other nights were miserable and I was afraid it would be same with this formula. I was also doing more peptamen at a higher rate at home than I was at the hospital. 

But it went in perfectly. I actually had no acid reflux at all that night and finally got my first night of sleep after 2 weeks of misery. 

G-tube Now

I'm almost 3 weeks post surgery. My site it still healing. It's going to take two months to heal. After the two months, I can go back in to switch my peg tube to a mic-key. 

I'm still pretty annoyed with my peg tube. It's long and bulky. I have to tape in a way that my shirt constantly sticks up. I have very minor discharge, but let me tell you, that stomach acid burns your skin. I have to change out my dressings in attempt to keep the acid of my skin. I have some minor granulation tissue forming on a area of my hole (that stuff hurts really bad). I'm actually counting the weeks down until I get my Mic-key tube. 

That being said, it is so nice not to be worrying about my calories. I get 1500 calories at night. So if I'm having a bad eating day and can only managed to eat a 1000 calories that day (or even less), I know that I'm getting a bolus feed at night. I feel my energy slowly coming back. I actually have energy to get up in the morning and do things. I do start to get sleepy in the afternoon and I get pretty tired in the evening. But I think it's a good start. 

I left the hospital at 95 pounds and the goal weight is 120 pounds. The doctor said I should be gain roughly 3 pounds every month. It's a slow process, but hopefully this will get my body nice and healthy.

In the mean time, my appetite is slowly but surely coming back. I found a new drink that I love though. Milk tea with cotton candy. Sorry blood sugar. 

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