Wednesday, February 22, 2017

How I am eating today? Do I Still have a feeding tube?

There seems to be a lot of confusion on why I still have a feeding tube... As well do I still have a feeding tube? So I'm going to straighten those questions out & explain what is now going on in my current situation. You have got questions. I have got answers!!                                                  So Yes I still have my GJ feeding tube. I also have my port a cath. (My port will be going nowhere. That option isn't even on the table.) But as far as feeding tubes I have a tube called a "GJ" tube. That means I have two tubes built into one tube. So the G stands for Gastric. It goes into my stomach. The J stands for Jejunal. That tube goes in through the same spot and continues down into the small intestine called the jejunum. Here is a good image:
(this photo link: https://goo.gl/images/sUdUxT )   People who are tube fed with Gastroparesis 99.9% of the time will need to fully bypass the stomach in order to sustain nutrition. So I always fed through my small intestine by a pump that slowly pumped in formula basically 24-7.
completely leaving my stomach out of use. Because my stomach was so paralyzed at the time putting anything into my stomach caused severe pain and nausea. It was so bad I couldn't keep a sip of water down for years. That's how I almost died in the beginning. So we leave the stomach out of the picture and put a tube in the small intestine the jejunum. The jejunum is where your nutrients are absorbed. So the stomachs job is to mush up the foods we eat. Then the stomach sends it all nice and mushed up into the jejunum (small intestine) to be absorbed. So for years putting a tube into the small intestine and pumpkin formula into that small intestine was how I ate. So why do I also have Gastric  "G" tube? Well my stomach is paralyzed. That meant I sometimes would need to drain bile out of it. I also liked the fact you could eat some ice chips or drink a little and drain it out of the gastric tube. It is a great tool. So my tube is two tubes in one.... And that's how it all worked..... Now skip ahead to today I am eating by mouth. It's been a long process and it's not over. I slowly gained ability to drink my fluids. I slowly built my way up to be able to get balanced nutrition. I then built up to be able to take medication by mouth. With Gastroparesis it's tricky because food or medicine will sit in my stomach a lot longer then normal because it's paralyzed. It can sit in my stomach for over a days time... But we seem to be doing okay. My diet is now mostly liquids. Which is okay! And a lot of Gastroparesis patients live on full liquid diets. I drink a ton of Orgain meal replacement drinks. 
But it's food! My diet is particularly liquids the past 8 weeks. I eat some solids but my bulk nutrition comes in from these Orgain drinks. (I can't eat fruit or veggies keep in mind. They are too hard to digest and I get sick)  Also if you remember a while ago  I had to go back on one can of formula a day... due to my body adapting to the special protein in my formula. The formula is made for Gastroparesis so it's "pre broken-Down proteins" So when I eliminated it and just had normal protien my body was not absorbing it right... My body was not used to regular food proteins. That was the start of another weening process. I've been on a can a day via my G tube since. That's huge! I had to pump formula into my intestine at a very slow rate honestly. I never hit goal. (Which is why IV fluids were needed. I was choosing between formula and fluids every day. So then we did daily fluids via IV through my port. We are currently off those IVS they were the first to go.) so now I put my formula not into the small intestine but into my stomach. It also is done via gravity... Not a pump... Which means I have a can in a few minutes tops. That's the same as drinking it! (Minus the swallowing.) 
I just put it on this big syringe and pour it into my stomach via the gastric tube.  I accidentally did not get my formula one day last week. And I normally always feel it if I don't get that can of formula but I did not feel it. So for a few days now we are on half can of formula. (Obviously if it does not work we will go back up to one can daily.) SO WHY DO I HAVE A FEEDING TUBE?! Well you guys, I could go sign the death papers. (You have to sign forms stating you understand that removing a feeding tube will lead to death and you basically wave the ability to sue your doctor for taking the tubes out. (Family as well would not be able to) because obviously if you need nutritional intervention to stay alive... You're gonna die or have severe complications by take feeding tubes out.) but I am taking my time to take it out to let my body get the fuel it needs. I don't want to drink the formula by mouth. I mean it's formula. I haven't had the gags in months. (Knock on wood) once I start throwing up I don't stop. So I also don't want to rock the boat of the pukies. I want my body to be in its happy place and stay there. (As do my docs)  I also have a little hand surgery coming up so I want that J tube For one reason... Pain meds slow gastric motility for everyone ... So they make you digest slower. That's why you get nauseated ect on pain meds. I want that tube for that surgery recovery.  I want to see how my body handles that surgery. Every thing down to a tiny cold or tummy bug can alter my course of disease. It has the ability to put me back in bed, change how my Autonomic nervous system is operating, it dysregulates it further. It could put me back to J feeds... So we want to have our tools for that and we want to make sure this body is ready to really take those training wheels off. Getting a feeding tube put in is very hard and most GI doctors do not even do them. In fact we have like three places in our whole state. They mentally have a hard time putting them into a person who seems fine. Also young... They don't like putting them in younger people. Basically babies and elderly patients will get them easily. But for some reason they find it mean to do it to someone like myself. I suppose nearly starving me to death in the beggining was a lot nicer?? I'm not sure how I feel about that stigma of an excuse. So feeding tubies are hard to get in the first place. My stomach is STILL PARALYZED it's just able to tolerate foods right now. It's a fight daily but it's worth it. Actually my small intestine is a little paralyzed as well, if we wanna get technical. My stomach paralysis comes from my neurological condition Dysautonomia. (That is also the reason we have this improvement in my GI function. My Autonomic Nervous System is sending the messages better to the GI tract.)  So I am doing super well with the feeding and now I hope you can see the difference in the way I use my feeding tubes. In the beginning I ate through my small intestine totally bypassing the stomach. The stomach was not used for anything! I had to drain bile out of my stomach because it would just sit there. Stomach was out of order. Now I am able to literally put formula into my stomach. And eventually I won't need the formula. We are weening off of it. So that's how I eat, the changes in feeding tube uses, and why getting feeding tubes removed isn't just so easy to do as far as the getting one back in if needed another one down the road. The goal is to remove this two in one tube but it's not hurting anything. We don't want to set me up for failure by moving too quickly. I do have to make the decision in April I believe to replace the feeding GJ tube. (As they need replaced regularly) if it falls out or gets pulled out in the meantime I will most likely choose to try to leave it out and see what happens. (Yes those things happen often with feeding tubes) but also its clamped into my small intestine so no also ripping it out on purpose is not an option either lol... so there is the update on my Tubie life -Chelle