On Days like today, I wonder how I made it through. I couldn't eat because I wasn't in a situation that I could go to the bathroom, so I spend the whole day without eating much of anything. Plus I was more active then I every am, and I feel it. My head hurts, my stomach hurts, my feet hurt, my eyes hurt, and basically my whole body hurts. I feel like I got run over by a car, or a truck or a train.
Now I have to recover from today in order to make it through tomorrow. So off to bed I go to try to rest and heal and make it through another day, because days will turn into weeks and weeks into months and eventually I'll make it through these tough times, in my not so normal life.
This is me earlier this summer with an ng tube down my nose and a PICC line pumping TPN into my arm. At this point I hadn't eaten for 3 weeks and it was awful. I couldn't eat because I was obstructed and had to have a tube just to suck all the gastric juice and bile being secreted.
But here is my dilemma, my current medication isn't working so next stop is either tacrolimus (a transplant patient drug) or TPN. Total parenteral nutrition would mean no eating for an indefinite period of time. Rough. Crazy. Hard. Impossible? Would this be impossible, to knowingly deprive myself of the enjoyment of eating and instead receive all my nutrition via my PICC line? Well nothing is impossible, but if you were going to pick something that was as close to impossible as you can get, not eating would be it.
The reason I would do TPN is because I know it would help. With the TPN I would have more energy and not feel nearly as Ill, I may even be able to things I enjoy and have a social life. So is not eating worth the benefits it would provide? I don't know, but if that is what we decide to try next for my Crohns, I am going to conquer the impossible and forgo food. As awful as this sounds, I may find that it makes my life a million times better and better is something I would like right now in my not so normal life.
You want to know the truth? I am tired of fighting a constant battle each and everyday. I am tired of constantly worrying about what my body is going to do next, and having to miss out on the things I want to do. I am accustom to having to miss things due to being sick, but that doesn't mean it gets any easier. In fact at times it becomes harder, because the longer you fight, the more worn out you get, and truthfully I am worn out. It is times like these that I wonder if I am fighting a losing hopeless battle and just making it harder on myself by trying to do school. The truth is, I don't know if this is every going to get better. I can pray and take medicine and eat well, but I may never get better. That's the trouble with a chronic disease, it never ever is healed. It may go into remission, but it is always lurking around the corner, and that is scary. So next time you judge someone who is dealing with an illness, try to see things from their point of view and realize that a chronic disease is stressful and tiring. So take this blog and realize that the people around you and in your life have a lot going on and we should always be there for each other and help each other through, so those fighting aren't so tired, because sometimes I feel tired and like giving up in my not so normal life.
The eternal question for Crohns patients is: What do I eat? You are constantly told don't eat this, do eat this, but don't eat this, and most of the time theories are contradictory and complicated. Plus I have a hard time giving up something I enjoy (eating) just because it may help my Crohns. So time and time again I am faced with the question "What do I eat?"
Every time I go to put food in my mouth I have a multitude of factors to consider. First, I have to think of if what I am going to eat is going to make me feel like throwing up. If I don't have anything to do, but lay around, I can probably handle feeling like I am going to puke, but if I am going to have to socialize with other people or go to class then no way am I going to eat that food.
If the food passes the first test, I have to consider a very important factor: the bathroom.
Lets all be honest here for a second. When you are sitting in class and someone has to get up to go to the bathroom more then once during a class period we all judge them and think, "I know what your doing...." So when I am considering what to eat I have to guess how many times/how urgently it is going to make me go to the bathroom. If it's going to case urgent bathroom trips then I'll save it for later, and absolutely no way will I eat it before class.
Honestly the only "foods" right now that don't violate those two factors are supplements, so unless I've decided I don't care about my factors, I just do supplements through the morning and afternoon...which sucks! But I guess when your dealing with Crohns, you gotta do what you gotta do. Basically I think about everything I put in my mouth pretty carefully to avoid unnecessary inconveniences in my not so normal life.
I've got 8 scars and am missing two feet of intestines and my life isn't normal, but whose life is normal? I want to use my experiences to help you, even if it means sharing embarrassing experiences. I am also looking to break the stigmas associated with IBD in order to make living with IBD just a little bit easier. Hope you enjoy!
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