The Nightmare Continues

It's the summer of 2004, still trying to get used to the feeding tube. Kept telling myself this is what is keeping me alive. My brain full, what is happening to me when all this came about. This mystery that still lies deep down inside of me only to come to light when it feels like it's not sure what caused it. I got into a routine at home knowing I was stuck there 23 hours a day hooked up to the IV pole. Couldn't turn it up made me sick to do that, so I had to cope with this until I could turn it up. Days, weeks, even months past. My 23 hours a day was now down to 16 to 18 hours a day as I increased the rate, which means how much is going into me at the time. What are the best and worst parts of being on a feeding tube best are gaining weight, starting to feel normal again, having more energy to do more things than to get out of bed just to sit on the couch. Boring life, but, this was my life at the time. I was married but he was gone all the time. Bad things, stay at home doing nothing, going nowhere, can't eat anything whole. My life with a feeding tube. I remember like it was yesterday. Christmas, Easter, and the rest of the holidays my family got together and had dinner. How many meals I had to smell, look at, and want so bad it hurt. So, I battle it sometimes, and eat three to four mouthfuls and no more than 5 minutes later be in the washroom. You don't know what is like to smell food and not be able to eat it. Can't describe the pain and the wanting. So I had to train my brain not to eat, well just liquids at the time. Life was hard from 2004 to 2007, lots happened.

I left my husband and moved into my sister's place. Now to get my life back. I started to gain weight and feel better. I thought maybe by gaining weight this demon inside me will disappear. So I had surgery in 2004, didn't help. So, I fought, so, I can feel as close to normal as possible. Kept telling my specialist that something was still happening and it was hard to describe but we needed to do something about it. Still not eating foods and when I do is still washes through me. I don't know how to handle this nightmare, even where to start. So, life went on still struggling to make this life I have now work. What else can I do? Worst thing in my life it still needed to be lived. How, why, when, is still to be determined. Another curve ball, I seem to be getting the s----y end of the stick. As, I passed through 2005 through 2006, I just kept to this one level not being able to gain weight or to gain any ground. Well finally my specialist sent me to another surgeon. Specialists don't like doing surgery that close; Crohn's/UC spreads like wildfire when exposed to air. After taking x-rays the surgeon decided that surgery needed to be done. There was two places in my small bowel that needed to be addressed.

So, after waiting, it seemed like years, but only months, keep getting bumped by cancer patient for their surgeries. It was the beginning of 2007, my wish hopefully will come true. Hopefully, I will have this pain gone, still kept blaming on my Crohn's and UC. Because that seem to be the answer at the time. Another surgery, another stay in the hospital, not knowing if this would finally help. Nervous, the day finally came, it was March, the beginning if I remember correctly. This time I was a 125 lb with the help of a feeding tube. Prepared myself with another surgery with my mother and family by my side. I prayed that this would finally work. Surgery day, I looked at myself and said last surgery, this is going to work and my sad life will turn into a life that I can really live. I woke up in the Foothills Hospital wondering if everything went alright. First thing I did was check for a bag, don't want a bag, hopefully never have to. I open my eyes to see my mother looking at me and said "Good morning, you look great, color in your cheeks." I said, except for the pain of the surgery, I feel like a million dollars.

I don't like to be in the hospital, very poor care, our Healthcare System is not working or working very poorly. How many nights I cried knowing everyone else in the room, 4 beds per room, 8 beds to share washroom, as I watch them clean the bathroom would be enough to scare you not to use anything, let alone the shower. Everyday I was in the hospital I cleaned everything in my corner of the hospital room, well at least my stay at the hospital was short, had to leave to get the proper rest I need it. As the year progressed, I started to get stronger. Feeding tube is doing its job. Next, step trying to eat food again, worst worry in the world. With autoimmune disease you are allergic to a few things. I remember back in 1988, just after I got diagnosed, I had problems doing dairy. When I done the blood test in the past it would come back negative. Finally they did a biopsy (that is scraping of the bone) got it done on the left side that grew into a growth that would haunt me for decades, till I finally got it removed. Now I face what diet of foods I should keep or take out, so, I started with fruits, vegetables and meats, fishes. So, far, so good. So, I decided to enter pasta, grains, salads, just about everything that is not processed, or as I say not walked over. I only ate homemade, that is how I was raised. Only processed foods were cereal, pasta. So, never wanted or needed that taste of food and nowadays, most kids only like processed foods. Such a shame!!!I started feeling like myself again or I thought. Well, the year was coming to an end, 2007, and told my specialists that November 13th, 2007 would be the day my feeding tube would come out and I would be free again from all the IV poles, the cleaning, the disinfecting everything, that came along with a feeding tube. Best relationship I had in so long at the time. LOL. My specialist told me to wait till January of 2008 and I told him, I know, I was ready and could handle it. If, I failed, I still could go back on it, but made my mind up to start eating foods and not having this liquid crutch. I remember each day of the days of my storms, kind of grained into my mind. I walked into the Foothills Hospital on November 13th of 2007, it was a Friday the 13th, best day of my life and Friday the 13th became my lucky day. Laid on the table as they took it out, I remember first, I had the tube running in my left nostril and running down just above my stomach a year-and-a-half, the rest of the time was in my stomach. What a liberating day for me as I walked out of the hospital feeling free and optimistic about my future. Next blog my experiences with 2008 till 2010 the days I realize, I had to quit smoking before life finally silence me to darkness. Signing off Crohn's/UC Warrior since 1988.