So after reading my previous post (if you missed it, you can read it here: http://maintenancerequiredblog.blogspot.com/2015/02/tough-decisions.html) and possibly seeing me around the past few days, you know I have a tube in my nose.
I was really nervous about having to walk around with a tube in my nose, but it hasn't been as bad as I expected. I definitely get that second glance that people make when they see it, but I'm okay with that. It's weird, I get that. I've never seen anyone with a feeding tube, so I don't expect that many people I see on a regular basis have either. I don't mind questions about it at all, either. Actually, I even appreciate questions, because that give me the opportunity to spread some awareness about MCAS and gastroparesis. Plus it takes away the awkward "elephant in the room" feeling that comes when people try to ignore it. So please, don't be afraid to ask questions!!
ANYWAY, the real purpose of this post was to answer some questions about the tube that I've been asked and share a little bit what it's like living with it. Spoiler Alert: probably not a good birthday present option for your kids...just saying =P
Here are some common questions I've been asked since getting it last Thursday. If you have any I don't cover here, comment on facebook or here on the blog and I'll do my best to answer them!
What is it?
I think I've covered this more or less at this point =) It's a feeding tube that goes through my nose, down my esophagus, through my stomach, into the middle part of my intestines. It is providing me with supplemental nutrition directly to my intestines so I don't have to eat all my calories.
Why do you have it?
This one is not as easy to answer. The short answer is my stomach and top part of my intestines are partially paralyzed and do not work properly, so I cannot eat normally without severe pain and nausea. The tube allows me to get the nutrition I need to keep my weight up without having to force myself to eat knowing it's going to cause major problems.
The more complicated answer is related to the MCAS diagnosis I received about a month ago. Mast Cell Activation Syndrome is a systemic condition, meaning it involves multiple organ systems in the body. For me, I have significant GI involvement. Not only do I have extra mast cells in my gut that are hypersensitive, but I also have mast cells also the nerves that trigger the stomach to contract and digest that are hypersensitive. The result is that the mast cells are triggering a reaction in the stomach itself AND causing motility issues by involving the nerves that control motility and digestion. The combination of these two factors causes my nausea, pain, bloating, distention, etc.
How long will you have it?
We are looking at 4-6 weeks. The reason it is in my nose is because it is a temporary feeding tube. There are more permanent options that are surgically placed directly into the stomach or intestines. However, since the purpose of mine is for a temporary "re-set" I did not want surgery. Because we believe that a major portion of the underlying cause are my mast cells, the idea is to give my stomach a reprieve. While I have the tube, I do not have to stress about consuming enough calories to sustain life because they are pumped directly into my intestines via Herman (my tube). This allows my stomach to rest. We are still in the process of finding an effective MCAS treatment. Hopefully, during the time I have the tube we will find a medication combo that works well. Once the mast cells are more stabilized, the idea is for me to transition back to a more normal diet. At this point we have no reason to believe that this is a permanent solution. We are using this a tool to allow my body to rest and recover while we find a long term treatment.
Can you eat with it?
Technically, yes. While right now, I'm not eating a whole lot because my stomach can't handle it, there is nothing about the tube itself that prevents eating. Eating is actually encouraged by the stomach and GI tract follow the same "use it or lose it" concept that applies to other muscles. Just like when you don't work out, you lose muscle, if the stomach is not stimulated at all, it can stop completely. When that happens, it can be very difficult to get it going again. I do eat popsicles (feel AMAZING on a sore throat =P) and drink broth and smoothies right now. As things settle down, I will start adding in soft foods like mashed potatoes and scrambled eggs and progress from there as I can tolerate it.
*Side note* It does feel really kinda weird to swallow with the tube =) I can feel it tug on my nose when I am swallowing a piece of popsicle or smoothie. Just a fun fact for your enjoyment =)
Does it hurt/is it uncomfortable?
Kind of...the first few days were really rough. I had a very sore throat and nasal cavity. At this point it is more uncomfortable. The tube has more or less formed to my nose and throat so it doesn't feel like I'm being stabbed every time I swallow and it hits the lining of my throat. There is still some irritation in my nose because it does shift a bit as I swallow or talk. There is also a big feeling of pressure in my sinuses which is probably the most uncomfortable part right now. So if I sound a little nasally when I talk, that's why =) I'm also having some issues tolerating the formula so far. We are still not sure if it's the formula itself or just my body getting used to tube feeding in general. So things are not 100% yet, but definitely an improvement.
How does it work?
The tube is placed so one end is taped to my face and the other end is in the middle of my small intestine. The part that extends out of my nose is attached to what looks like an IV bag filled with my formula. The formula bag is then connected to my pump. The pump delivers the formula into my tube at whatever rate it is set to. Because my tube goes to my intestine and not my stomach, I have to be on slow, continuous feeds. The intestines do not have the same capacity as the stomach to hold food so not as much can go in at one time. That is why you may have seen me walking around with a backpack that has a tube coming out of it. I have the pump and formula bag in the backpack so I can "eat" on the go. At night, I have an IV pole next to the bed that I am hooked up to. I've only forgotten twice so far when I've gotten up to go to the bathroom in the middle of the night...
Is it working/Do you feel better?
Another kinda complicated question...is it working, yes, the formula is going into my intestine like it should. Do I feel better, yes and no. Like I mentioned, I'm still having issues tolerating the formula. That is not uncommon in starting tube feeds. Our body is not used to having food delivered directly to the intestines, so there is an adjustment period. In addition, the formula I am on may contain some things I am sensitive to, so we are still in the troubleshooting phase for that. so I am still having some digestive issues and feeling unwell. HOWEVER, the severe pain and nausea that I was having on an almost daily basis is gone. Because I don't have to stress about eating and make sure I'm getting enough calories, my stomach is getting a much needed break. That is fantastic! I am so thankful to have this reprieve. So is it doing what we hoped, yes, but the potential for even greater improvement is there and hopefully we will get there soon.
Can you shower with it?
Okay, I haven't actually been asked this one, but I know there are always unspoken questions, so just to clear up any confusion, the answer is YES! I can swim with it, too, if I wanted. There are very few limitations that I have other than no contact sports and that's just because of the risk of it getting pulled out, not because there is anything about the tube itself.
And that's all I've got!
I hope that answers some questions you may have about the tube! Again, like I said at the beginning of this post, if you have anything else you wanted to ask, please do!