Thursday, March 5, 2015

Showing The Tube, Why?

I don't know why I feel so strongly to share these pictures of my feeding tube but I feel it is important so people can learn. and the last thing I am is ashamed of it in anyway ... it is a new part of me and I am going to show it. Show it for me. Show it for others. Show it for knowledge. Show it for Gastroparesis. Show it for strength. Show it for other tubies out there. Show it for awareness. Feeding tubes exist.

before I get started I would like to touch on something that has been brought to my attention recently. "overweight" people can and do have feeding tubes too. In fact some are "overweight" due to malnutrition. A feeding tube isn't for the "skinny" it is for nutrition. In fact while attending Mayo Clinic I met a Friend while we were both going through the same test that day... That test was called a gastric emptying study... That is where they force you to eat (hahah at that point you typically can't eat) So the study is where you eat radio active food I had eggs and toast ugh. Then they take x rays I think it was the first hour then every two hours... or something like that. you have x rays all day.  I was soooo sick they also make you NOT take your regular medications. but this sweet lady who I felt for and she felt for me (it was a mutual suffering) we talked while we would briefly wait in the back waiting room for our next x ray. And it came to find out she had a condition called Crohn's disease. She told me she ate a handful of food everyday and that was literally all. I believed her right off the bat. She told me she had experienced some frustrating situations with being over weight and not able to eat. And she thought it is what caused her to gain the weight. I agree because your body will eventually freak out about not getting nutrition and go into storing mode... I don't know the outcome of her study but mine was slowed gastric emptying and that is gastroparesis so yeah. I will never forget that lady and her suffering I think at the time she suffered more then me and had such a harder time getting help because of people's excuse me but ignorant abilities to be cut and dry. Not everything is just plain and simple as it seems. I was wasting away daily so of course the doctors could see that I was loosing weight and not well. and there are a lot of sufferers out there so don't forget the world and people are not cookie cutters.

I guess I am sharing the final project... healing is healed.... swelling is down... however my nutrition needs to improve immensely! I was very sick and in pain all day. However feeling better tonight (knock on wood)  I highly recommend children's gummies multi vitamins to people with tummy issues. They are probably saving my hide right now! Still on 20 ml an hour of feeds. My goal rate again is 125ml an hour. phew it seems so far away. But I am no quitter. That you will not see. if you are interested in what this tube is sticking out of my stomach... This is called a peg jejunal/gastronomy feeding tube. I eat through it. There are 2 ports one goes into the jejunal (small intestine) and that is where my food goes. (so I don't vomit it up) and the G part is through the stomach. Now I vent through that. Venting is letting excess air that can get trapped in my tummy out. let me remind you I have this due to a paralyzed stomach. so slow gastric emptying can lead to air stuck in my stomach and that is very painful. and uncomfortable....it leads to a lot of bloating. I also while venting can suction out food. Say if I get sick from eating something I can just vent it out and not puke. (well sometimes I still puke and I can't get it all out but I wonder if it is the content of the food I ate) ...yes I can eat food and drink by mouth but it is never for sure that I can keep it down. and I can not eat enough to sustain proper nutrition leading to malnourishment. (not fun I am experiencing that with my feeding tubes currently because I am starting out. You have to build your way up) The tube is painless unless I sleep wrong, or it is yanked. Then it can hurt pretty good. I'm still climbing up that mountain-Chelle