Monday, June 27, 2011

my GI appointment...

I had an appointment Wednesday with my gastroenterologist to discuss the recent physical changes I have been experiencing. He said that the reason I feel so wiped out and exhausted is because my colon is so slow and damaged (lack of a better word) that it is pulling down my other organs with it. Whenever I clean out, it just makes the whole situation worse and me more exhausted and weak; that’s where the blacking out is coming from. Unfortunately it will not get any better until my colon is out, I’m only getting weaker. Since I’ve had some trouble with the magnesium citrate working as effectively the past few times, he recommended that I increase the amount that I take to a bottle and a half at a time. He recommended that I start drinking several different type drinks in addition to what I already drink to help keep me going and hopefully replace what I lose and help me more hydrated when I clean out.

The next thing we discussed was my veins. Whenever I dehydrate or have to do blood work, it’s an ordeal. Having to be pricked seven times and then resorting to my foot or having an I.V. in my neck is not “comfortable” but hey, nobody said life was suppose to be comfortable did they? No, they did not. I was hoping he could offer me something, a port or a PICC line but he said that was not his area and I needed to talk to my surgeon. It was bad to be poked and prodded numerous times but they would figure something out.

As for my nutrition, it has been horrible. Rice, potatoes, bread, pasta and protein shakes don't cut it. He said that he wanted to have my surgeon put in a jejunostomy tube (J-tube) which is a feeding that would go into my smaller intestines. It would supply me with up to two thousand calories per day. The plan is to leave the feeding tube in for up to six months, if I need it in longer we will leave it in, if not, it will come out. When I heard how many calories I would be receiving, I automatically thought of gaining weight in all the wrong places (how pathetic, I know). My doctor looked at me and said no, this was not going to put weight on me, this was to help maintain the weight I am at now. He said this surgery is going to be extremely hard, like running a hundred meter race one hundred times in a day hard. He told me as of now, I could beat up my colon and eat (within GP moderation of course)!

Overall the appointment was very beneficial. I knew something was up, I just didn't know this is what it feels like when your organ starts pulling down your other organs... it's not a good feeling. I am trying my best to work but it is all I can do some days to make it until lunch. As for the feeding tube, I am not worried about it. I had to confront this possibility a little over a year ago so I knew that it would one day catch up with me. Honestly, I welcome the idea of feeling better even if it gets worse before it gets better, think about it; no magnesium citrate, the possibility of not losing as much hair and nails, more energy and more nutrients! My life is going to drastically change no doubt but that is okay. It is going to be a hard six months but I can deal with it, I'm excited!

Monday, June 20, 2011

feeling like jello...

Something is up and I’m not sure what. It all started last Tuesday when I began my first weekly cleanout. I had woke up Tuesday with a horrible headache so I went back to bed to sleep it off. I went in late to work and at lunch started drinking my magnesium citrate. I was up throughout the night cleaning out. Since my GI tract is so slow, I am not like the normal person, a bottle of magnesium citrate takes a while; anywhere between 24 to 36 hours. I woke up Thursday morning expecting to go to work but I was drained and very weak feeling. I figured I could go in at lunch but that never happened. I rotated from my bed to the couch all day. I drank protein drinks throughout the day hoping to gain some strength so I could go to work the next day.

Friday morning came and I still had that jello-ish feeling in my legs, like they were going to collapse under me but I went to work anyway. We have devotions every morning at work. I park below the building. In a perfect world, I would get to work in time and park at the building where I work and walk up to devotions but physically I just don’t have the strength to do that anymore in the mornings; getting ready for work drains me alone. Friday morning the walk from the parking lot to the building where we devotions was about more than I was capable of doing. One day, I’m going to collapse in the parking lot, whether it be walking to devotions or lunch it’s going to happen and it’s going to kill me (not literally) because a twenty-four year old should not have this issue.

As for work Friday, I tried to keep up and I made myself a goal; work until lunch. I made my goal and then I left. I spent the afternoon on the couch hoping to shake my weakness.

I slept well Friday night so I figured I could handle a trip to Wal-Mart Saturday morning. I didn’t have much to get but as I was picking up my last few items, I realized that I was weaker than I thought and maybe it was time to have someone start going with me to town. I still had to get through the store, check out and drive home. I like to be independent, who likes admitting that they’re twenty-four years old and Wal-Mart is a struggle… not me. I came home and started my Saturday clean out as usual. It went well, no complaints. I knew that I would run into trouble because I was already weak and cleaning out would only make it worse.

Sunday was the very same; weak and drained (Have we distinguished a pattern yet?). I planned on working Monday, I need to work. I had been asleep for a while Sunday night and I woke up and knew it was going to be bad. My stomach and colon were going into spasms and the magnesium citrate obviously wasn’t out of me yet. I stayed up for a while dealing with that, I can’t sleep when I’m hurting like that.

With few hours of sleep last night, I had the same game plan, go in late this morning. I felt extremely weak and jello-ish but whenever I went to get ready for work, my head would repeatedly started spinning and my vision started going black. I decided that it wasn’t a good idea to drive to work needless to say I was probably too weak to work if I was beginning to black out.

Something however isn’t right. I go see my GI doctor Wednesday. I don’t know if my body is exhausted from the numerous clean outs or if something else is going on. I can’t keep going on like this, it’s wearing me out. Hopefully Wednesday’s appointment will be insightful. I want to be able to go on about life as normal as possible; who wants to spend all day on the couch?

Wednesday, June 15, 2011

friday: biopsy day

I do not have Hirschsprung’s Disease!! I am so excited. I can finally move on towards having my having my colon removed. This whole process began around the first of March and here it is the middle of June and I’m still here with a colon! I’m soooo close.

I went Friday for my biopsy at the hospital. I had to go to the OR for this biopsy which was perfectly fine with me; I didn’t want to be awake for this procedure anyway. The anorectal manometry was enough for me to endure while beginning awake.

My surgeon had me prep/clean out before the procedure and I was NPO (nothing by mouth) after midnight so I was leaning on the dehydrated side. My veins are horrible to find when I am hydrated so I knew before I got there that they were in for it when it came time for my I.V.s. The lady who was doing my I.V. couldn’t find anything good in my arms and hands except for this one vein in my arm. She tried and the of course the vein blew. She asked where they last got the vein at and I’m thinking you’re not touching my feet, I’m sorry! Well she did. This is no joke, I laid there and prayed that there would be no veins in my feet because my feet are so ticklish and frankly I.V.s in my feet hurt really, really bad. She couldn’t find any veins in my feet!

About that time my surgeon and anaesthesiologist came in and decided that they could do the procedure with me awake. No way was that going to happen!! I told the anaesthesiologist that I needed to be put under; who wants to be awake during that? I didn’t. During this the nurse had been looking at a vein on my neck so they decided that they would use laughing gas to put me under and the gas would dilate my veins as well. They would use the vein on my neck for my I.V.s then they would switch over to general anesthesia. It sounded great to me, I was going to be put under, I was happy.

I did get to see the OR. I’ve always wanted to see that hospital’s OR. In my previous surgeries, I’ve got to see the ORs and even move myself onto the operating table believe it or not. I loved that part of the surgery, getting to see all the medical side of it. I’ve got to see my appendix and I have a slide of my gallbladder. I remember the OR and everything that was going on until I got the laughing gas, on the third inhalation I was out. I woke up in recovery and spent some time there receiving Zofran, Phenergan and some type of pain medication. The patch that gave me for nausea didn’t help like it has in the past when coming out of surgery.

We live around an hour from that hospital. Whenever my dad had his colon surgery, he said that was the longest ride home. Friday I understood that statement. The ride home after surgery may be one of things I dread the most.

The past few weeks my GP has had its ups and downs. I’ve been getting full relatively quick I’ve noticed. At lunch when drinking my Special K Protein Shakes, after finishing one, I feel almost too full and miserable at times. I’ve been dealing with headaches from not eating enough… imagine that. At work in the afternoons, I try to snack on something whether I’m hungry or not just to get the calories in. The magnesium citrate last night whipped me. I kept waking up during the night and I felt like it was coming up (GAG!), I was cold and hot all at the same time - it was just wrong! This morning when I woke up I felt like jello -that’s not a good way to start to your day. You should feel like you’ve slept. Cleaning out is exhausting.

I go see my gastroenterologist next Wednesday and we’re talking about some type of port or something where I don’t have to be poked all throughout my surgery. I’ve got all of my things on my “To Do Before Surgery List” accomplish so I’m content. I’ve got a Netflix subscription so lately with the heat, I’ve been inside in the recliner watching movies and reading magazines. I LOVE the heat, the hotter the better. However I’ve noticed the hotter it gets, the more uncomfortable my GI tract gets.