Think about all the people you see in one day carrying around a backpack and you think nothing of it whatsoever. It is only natural you would assume they were carrying books from school, the library, a change of clothes for the gym after work. It would never cross your mind that the person was wearing the back pack as a life saver. By looking from a distance you never know the person is receiving life saving nutrition and medication through the pack .
I suffer from a disease known as gastroparesis which means my stomach is pretty messed up and paralyzed. When I am able to take a few bites orally I have to spent most of the day curled up in bed crying in pain and the food doesn't absorb anything, And now things have got so bad motility wise if I tolerate anything orally I ended throwing up undigested food two days later...trust me I know it is super gross.
Gastroparesis and pseudo obstruction disorder don't mix well together either. There is absolutely nothing pretty about constantly vomiting or having dumping syndrome. No one likes to point out that your tube opened and you have bile pouring through your shirt...these are tough diseases and very little can be done besides managing symptoms. We spend a lot of time laying in hospital beds, crying in pain, praying for relief, and quite a bit of time in the back of ambulances unable to be home home with our family members.
Options are limited, if the problem is somewhat minor sometimes diet changes can make things better simply avoiding super fatty foods, avoid large quantity of ruffage like certain fruits and veggies, and things high in fiber can be harder on the person to digest. There are some that respond really well in liquid diets and drinking a lot of meal replacements like boost and ensure. Unfortunately, most cases are very severe and require much more medical intervention.
There are surgical options that require feeding tubes to be placed, they can be placed in the nose, which is called a douphauff, placed through an endoscopic procedure called a gastrostomy tube, and another surgical tube that is surgically placed in the small intestine called a jejuneostomy tube. Given it is feeding tube awareness week I am going into a little bit of detail about which each tube is.
1) The douphauff is a small yellow tube that is passed down the nostril into the duodenum. When it is placed the patient is generally fully awake and sits up as the tube is passed. It can be uncomfortable because they must leave the guide wire in until x-ray can confirm that the tube is in the right place because they have a tendency to coil in stomach and constantly need readjustment. Once the tube is in the right place they pull the guide wire and it is much more comfortable. The first few days it can be a bit rough, but it gets a lot easier. They are generally used for more short term feeds.
2) A gastrostomy tube, generally known as a G-Tube is placed under anesthesia usually done endoscopically. They go in and make a whole in the stomach and there is a much more long term tube to run feeds into the person's belly. The procedure can be uncomfortable like any surgical procedure, but the meds help and you find yourself able to just take Tylenol. It is a more permanent option for someone who is going to be tube fed for an extended period of time.
3) A Jejuneostomy is a little bit more invasive surgery done under general anesthesia, generally laproscopically. The tube is placed in the jejunum which is the beginning of the small bowel. Recovery time is quite a bit harder since they generally spike the intestine to the abdominal wall so nothing can leak into abdomen cavity. These tubes are generally done when the stomach has to be completely bypassed for reasons like gastroparesis.
All of these tubes have different ways they can be fed...an IV pole with gravity or a pump can be used and with a G tube it can even be bolused which means a syringe is filled with tube feed and pushed into the tube. You will see most tubies of all ages carrying around backpacks that hold their bag of tube feed and have a special place for their pump so they can live a pretty normal life just have to be cautious about getting your line stuck on some thing. Most of the time people don't even notice the backpacks or that there is a tube coming out of them.
I'm telling you all of this because I was late to Feeding Tube Awareness Week and I believe that knowledge is power, the only way people aren't going to be freaked out by people with tubes and other things is for us to share our experiences.
In my case I've lost all stomach function and intestinal function also...we haven't given up on tube feeds, but it is unlikely we will be able to attempt that much longer. I have a central line in my chest which is another thing a lot of us tubies have in common no matter what their age. Sometimes our guts just can't let us get enough in so we have to have extra IV fluids and sometimes even IV nutrition. It is nothing for people to gawk out...we don't have third eyes or anything like that. We just have a different way to eat, be we are still cool and can do everything you can. I have a two year old little boy who has never known known his mommy not sick.
I am not ashamed of being a tubie and I think if we can just get more awareness out besides one week a year or even one month a year. There are so many things people make judgments about when they see someone with a feeding tube and it makes me angry. One of my big pet peeves is people staring at me when they see my central line or my tube hooked...if you have questions just ask me because I'm fairly open and most assuredly unashamed. Sadly, there are always going to be people who don't understand and people who feel they have the right to say ignorant things but that is their own person issues at work. I decorate my backpacks, IV poles even my walker now and I'm twenty seven. People scoff at me like I'm trying to show it off of attention when I promise I'm not it is for my own amusement and helps me accept being sick. I hope this was able to answer some questions it was a very brief overview and if you ever want to chat or ask more questions I'm always up for a good conversation.
No comments:
Post a Comment