Wednesday, October 26, 2011
But recently I found some pictures that my Dad took to memorialize some of the things that I went through after Crohn's entered my life. This is one with my niece Banner, me and the nose-feeding tube and pump that I had in the hospital and was sent home with. I named it Jo-Jo after a friend of mine that had passed away. Having it was a real pain. Not only was it painful at times, making my nose and throat sore, but being plugged into the wall not being able to move around freely really sucked. It was one of the low points when I was diagnosed and the doctors were trying to get me back to health. But it's hard to be angry at something that is named after someone you loved, so it helped me deal with having it.
Everyday my Mom would mix up the liquid food that went into the i.v. like bag/container that fed me. She would mix the powder with water in a big bowl. There couldn't be ANY little clumps or bumps in it as that could cause obstructions in the tube, and once it was in there you really didn't want to have it removed and replaced.
You can also tell from this photo that my face is rounder than usual. That is called "moon face" and was a side effect of the Prednisone that I was taking. When I was diagnosed Prednisone was called a "wonder drug". It really was in a lot of respects; being an anti-inflammatory it helped with inflammation healing the open sores and muscle in the bowel, it made me ravenously hungry and thirsty, it gave me alot of energy and a feeling of wellness. But the side-effects depending on the dosages were not pleasant. I had hallucinations on high dosages, severe nervousness or restlessness. If I was sitting down I wanted to stand up, if I was standing up I wanted to sit down, if I was reading I had trouble concentrating, it caused severe indigestion and I would get a head rush spinning feeling when I stood up too fast, dreaded acne and it sucked the calcium from your bones causing a high dose supplement to be taken. The "moon face" was the most noticeable and almost anyone I saw at that time asked me if I had just come from the dentist after having teeth pulled.
In another post I will share my experiences before and after my very first bowel surgery. Ciao for now!
Monday, May 30, 2011
After I got back to my chair my friend asked me if the needle hurt and nodded at a little boy. I looked at him and said "It was a piece of cake, I didn't feel a thing". That was a lie, she is a stabber, lol. As he was called into the "needle room" I found out that today was the third time that he and his parents had come for him to get his vaccinations. He had freaked out so badly the first two times that his Mom put on the brakes and stopped him from getting his shots. I had a real problem with that. The first time that they went, and with the Mother telling the nurse to stop because he was losing his mind in fear and not going through with, the Mom made it sound like it was going to be a bigger and worse deal than it really was No wonder he was ten times more afraid the second time around. Again he was so out of control that he didn't have it done. By today the poor kid was completely terrified because of his Mom's reaction, not because of the needle. I don't have children, but if I was ( I should say when I was) freaking out about having needles and i.v.'s, if my Mom or Dad would have stopped it from happening because of my fears, it would have built up in my mind to the size of a giant and I would have become ten times more afraid than I was in the beginning. They should have just bit the bullet, held him down and stuck him. In the end the nurse gave him a local anesthetic, a NEEDLE, to make sure the NEEDLE didn't hurt. What part of that makes sense? Eventually he came out with a lollipop, sniffling and if looks could kill I would be dead.
Tuesday, May 17, 2011
My Mom came into the livingroom to consoled me, and when I told her how angry I was she got up and left. She called me to go into the rec. room off the kitchen and handed me a meat tenderizer. To get the anger, saddness and frustration out she told me to hit the couch cusions with it. I wailed on the couch and beat it until I was exhausted. To this day I sometimes do the same thing, it really works.
My parents were going up to a cottage in Sauble Beach the next day, but I had a doctors appointment, so my sister and her now husband were going to bring me up on the weekend. I saw my doctor, got my B12 and iron shots and went home. The next day my mouth was a little sore, but I didn't really think much of it until the next morning when it was really bothering me and it hurt to swallow. When I looked in the mirror I couldn't believe my eyes! My tongue, gums and the sides of my mouth had a thick white build-up with some BLACK spots! I was freaking out. I called my Gastro and explained to the secretary what was going on, and that I was supposed to be going to the beach in a few hours. She told me to come in on my way out of town so I finished packing and was ready when my sister came to get me.
I knew that my Gastro's secretary had told him what was going on by the smile on his face. He actually laughed at me when he saw it. I told him it wasn't funny and that it hurt and looked worse. He said it was "thrush". Of course my first question was "What is that?" He said it was a yeast infection in my mouth, that was probably caused by a couple of things. Firstly, because Crohn's is an auto-immune system disease my immune system was weakened, secondly because of some of the medications I was on such as antibiotics, and thirdly I was under stress. He said it would go away with another medication and started writing out the script. He told me he was giving me these to suck on, like losenges and not to swallow or chew them. Like I always did, I asked him how they taste. That question made him giggle, then close his eyes. He opened them and with a straight face he said to me "where they are usually used there are no tastes buds" and just stared at me until it sunk in. I was going to have to suck on vaginal suppositories for vaginal yeast infections. I couldn't believe my ears! With a smirk I thanked him and went to get my script filled.
The pharmasist that filled it said she believed that my doctor made a mistake and that she had to call him. I asked "what mistake is that?". She said that he had written it out for me to take these orally and laughed. I told her it wasn't a mistake and opened my mouth to show her. She stopped laughing, apologized and went to fill it. As I was leaving the pharmacy with my bag, I heard laughter. I was happy someone was getting a kick out of it. It would seem they weren't the only ones. My family thought it was pretty funny too. At the cottage everytime my Mom told me it was time for my losenge, someone would laugh. It was kind of funny.
Luckily if you get it nowadays, there is a liquid that you can use to get rid of thrush.
Friday, May 13, 2011
I am totally terrified of needles to this day, and I have had thousands of them. In the hospital I had to hold my Mom, Dad or sister's hand. If they weren't around I would put a stuffed animal over my face to hide and pretend I wasn't the one getting poked. On top of the pain shots I was having blood tests everyday, iron and B12 shots.
Due to the scarring and damage to my intestinal wall, vitamin B12 was not naturally absorbed. To regain normal levels I required shots. I still get one cc every three weeks. Vitamin B12 is very important for our brains and nervous systems, and most people with auto-immune deficiencies require a synthetic version by injection. Again due to malabsorbtion and rectal bleeding iron shots were given. Iron is stored in the bone marrow, liver and spleen and are fundamental to all organ systems. No matter how much B12 or iron-rich foods I eat,, my body does not absorb them.
Tuesday, May 3, 2011
My Dad took me to my Doctor's appointment, and as we waited in the waiting room there was a kid that kept staring at me. I was in a bad mood because I was sure he would tell me "two more weeks Tracey, just give it two more weeks" as I had been hearing for months. So as this kid was staring at me, something to which I had yet to get used to, I had one of those moments where the little Angel on my shoulder lost to the little Devil on the other.
At the time I knew it was a horrible thing to do, but I was just so sick of it all. Sick of eating broth, sick of being plugged into the wall, sick of not being able to go ANYWHERE without being stared at like I had three heads and sick of Crohn's Disease. So this poor kid ended up coming face to face with all of my frustrations. I did the unthinkable. As he sat there staring, I pulled my tube in and out of my nose completely grossing him out. He tapped his Mom on the shoulder and told her to look at me. Of course I had stopped by then, and he got in trouble for staring and pointing at me. The minute she looked away, I did it again. And again he tapped on her shoulder, and again he got in trouble. I was just a kid myself at the time and I did feel bad about it and even looked for them when I left the office to apologize, but they were gone.
You would think that Karma being what it is I would have heard the "Two more weeks Tracey" speech again for my bad behaviour, but after being thoroughly checked over my doc smiled at me. He didn't even have to say the words, I knew that damn thing was coming out! It was a much more pleasant experience than when it went in, I can't even explain the sensation of it being removed, all I knew and cared about was that I was going to be able to chew my next meal!
It's funny looking back at that moment, how something as simple as chewing made me so happy. I was given pieces of paper with lists of food I was able to eat, and an even longer list of things NOT to. I couldn't have any seeds or nuts whatsoever. The idea being that the pieces could get stuck in the intestinal wall causing an infection. There were meats, fruits and vegetables to avoid also. I was going to live by that list if it killed me. I was planning to never set foot back in a hospital again. Those lists went up on the fridge the minute I got home, and one was put on my boyfriends parents fridge too.
I was also being weaned off of the prednisone, so my face would eventually go back to normal, I would lose the moon face which would be a really good thing.
I seemed to be under the impression that my life would just go back to normal; that things would be the way they were before. I hadn't read the pamphlets yet.
Tuesday, January 25, 2011
After spending the summer and beginning of spring in the hospital I was ready to go home. I was off work on a long-term disability and wanted to get back to that also. Every time I said I wanted to leave I heard the same three words, "Maybe next week". I thought I had enough bowel rest to last me the rest of my life, and removing the feeding tube from my nose could not happen soon enough. I never wanted to look a bowl of jell-o or broth in the face again, but "maybe next week" would have to do.
Then a miracle occurred, it was finally next week!
But hold the phone! My doctor said I could go home if I wanted to, but my tube was going to be staying right where it was, in my nose. He actually smiled at me when he added that part. Oh well, it could be worse right? I was finally going to sleep in my own bed again!
The day before my exodus all of the plans were made. A new pump was going to be delivered to my house, all of my scripts were written out, my family brought all of my presents and other belongings home and I said my good-byes to the nurses and other patients that had become like family to me.
Walking out of there knowing I didn't have to go back was blissful, but it almost felt like I was doing something bad when we drove away. Seeing the streets and people coming and going was kind of strange, everything looked so clean and new, but as we drove into my driveway I thought I was going to burst with joy!
As I tried to walk up the stairs to my room I realized how long it had been since I had done any exercise. My legs were shaking, my heart was beating and I had to rest part way up. That gave me and our dog "Cookie" time to catch up and cuddle. My room seemed smaller, but it was just perfect. I laid down and thought I could feel the springs in my mattress, but I passed right out.
When I woke up it was back to reality time. My new pump had been delivered and I was plugged back into the wall. I had named my pump "Jo-Jo" in the hospital and christened this one the same. The cord was not even ten feet long, so that was as far as I could go from the outlet. This depressed me immenseley so my Dad got an extension cord. I could move about the whole main floor without having to un-plug and re-plug myself back in whenever I wanted to go into another room. The battery didn't work very well, it wouldn't hold the charge. My Mom mixed up my liquid TPN (Total Parenteral Nutrition) meals in a big bowl, then poured it into my bottle which went through the pump, up the tube and into my stomach. She was awesome for doing this for me every meal, every day. She also made my jello and broth. When it was breakfast, lunch and dinner time and I was hungry (I wasn't always) I would get some help with my pump down the stairs and eat my liquid meals down in the rec room when everyone else was "chewing" their meals upstairs. Everything smelled so good!
For being so good to me I shouldn't have paid my Mom back by grossing her out. I was curious about my tube. I'm a very curious person, that's just who I am. I was standing in the powder room on our main floor looking into the mirror with my mouth open wide. I called for my Mom to come join me for a minute. She came and stood behind me as I told her to "Look at this" and opened wide again. At the back of my throat was my tube, it was right there. She thought it was gross, but laughed. But it kind of surprised me. I knew that it would be there, but seeing it hanging there was weird.
One afternoon as I was in my room watching a movie (a friend that worked at a movie store brought me an unlimited supply) the smell of KFC came wafting into my nose from under my door. Everyone in my family had plans that night so my Dad picked up dinner. Down I went to the rec room to eat my broth, my mouth watering like crazy while they were enjoying "finger licking good" chicken. The horror. Out they all went, it was the first time I was home alone. The doorbell rang so I went to answer it, there were three of our neighbours standing on our porch. I opened the door and they asked for my Mom. I told them she was out and that I would take a message for them. They said not to worry about it and walked down the driveway. Then I heard it. "Look at her", "What's with the tube?", "Does she have Cancer?", they didn't come by to see my Mom, they just wanted to get a good look at me. I heard the rumour mills start spinning. Why can't people just ask questions about things they don't know or understand, why do they have to just make up stories and whisper among themselves? I have never understood that.
Shutting the door, I realized I was thirsty and opened the fridge. There in front of me was the leftover chicken. You know in movies when they show an Angel on one shoulder and a Devil on the other in times of temptation? That was happening to me and as hard as I tried to not give in, the Devil won. I was just about to find out why you aren't supposed to eat with a feeding tube in your nose. The KFC skin is my favorite part and I was thinking what's a little piece going to hurt? And then the idea of just chewing it and spitting it out came to my mind. Just tasting it would be alright. I ripped a little piece of skin off and popped it in my mouth. Oh wow, it was heaven! Then without thinking I swallowed. Big mistake. The skin got stuck on the tube and I started to choke. You can't imagine the things that were flashing through my mind. My parents would kill me if I died from something so stupid. I saw newspaper headlines in my mind that read "Moron Girl Chokes On Chicken Skin", panic had set in. I was coughing and coughing and finally it came loose. Sitting on the floor I thanked God for not taking me and sparing my family the embarrassment of such a stupid move on my part, and swore not to eat ANYTHING other than my broth until I had my doctor's permission.
It had been a long night and I was feeling pretty weary. Again, without thinking, I took all of my bedtime medications. These included, amomg others, a sleeping pill. It's very hard to sleep with a tube laying in your throat. Unplugging myself and walking towards the stairs I realized there was no way that I was going to be able to lift Jo-Jo and carry him all of the way upstairs. But I tried anyway. When I made it to the first landing (only two steps) a break sounded good, so I sat down and tried to pump myself up for the next big hurdle. Then I woke up in my bed the next morning, realized that I must have made it here by myself, and felt really proud for a few seconds. Who was I kidding, there was no way I got there myself. I found out my Mom carried Jo-Jo and my Dad carried me.