Monday, 21 April 2008

• The Final

  I haven’t recovered 100% from my most recent surgery that took place on March 31st, but I decided to give an update anyway.
  
  On Monday, March 31st at 7:30 a.m. I was wheeled into the O.R. once again. I had to be at the hospital at 5:30. David and I were joined by my dad and at 5:45 my name was called I very nervously kissed my husband and tolded him that I would see him in a little bit. The nurse took me back and the same old routine began. I got in my hospital gown and hopped onto the gurney and waited. My I.V. was put in. Pastor Mike from The Chapel came and prayed with me and soon my dad and husband were brought back to wait with me. Soon the nurse came in to knock me out, so dad and David prayed with me again and then I was wheeled down that imfamous hallway. I was still awake when they put me on the O.R. table. strapped my arms down then put the mask on my face... then I was gone...
  
  I woke up what seem moments later with...get this.....NO N.G. TUBE!!!!! I was so at peace with the whole surgery. I knew things were only going to get better from here. My room was ready and they wheeled me up. I got settled and drifted in and out of sleep. Later that night I was already up and out of bed, going to the bathroom and everything.
  
  There isn’t much more to tell ya. I just felt better each day. I got a lot of visitors and just felt so loved. Thursday, when the Dr. came to check on me, he told me that if I ate good that day and everything passed ok, that I could go home the next day. I ate, I pooped...it was GREAT.....The next day, the Dr. came to see me asked me a few questions and said ok and that I could go home!
  
  This operation could not have gone any better. It only lasted about an hour and Dr. Sweitzer didn’t have any problem seeing what he needed to do. This was an obvious God thing.

  • 11:45 AM
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• Look Ma! No colon

  Where oh where shall I begin?  Let’s start with the year of 2002. You must excuse the exactness of the dates...things are a little fuzzy since a lot has happened. In 2002 I discovered I was bleeding a little when I went to the bathroom (yes from the bum). It scared me, so I decided to do the mature thing and ignore it....I ignored it for quite awhile. The next thing that started to happen a lot was diarrhea. And Diarrhea that I couldn’t hold... Once again I did the mature thing and ignored it the best I could. I took Imodium like it was candy and hoped that I could get point a to b without crapping my pants. Between November and December I had Bronchitis and the flu about 4 or 5 times. One evening while I was sick in bed I was watching a PBS special on IBD (Irritable Bowl Disease). I had the same symptoms the people on that special did! A few more days go bye and I was not getting better, so I decided to let my husband in on what was going on. He took me to the ER immediately. I explained to the ER doctors what I had seen on the PBS special and that I was sure that I had some sort of IBD. They basically thought I was crazy and sent me home with antibiotics and a referral to a family doctor. I go see this doctor and he thought I was jumping conclusions, but referred me to a gastrointestinal doctor where I had my first colonoscopy. LOWIN BEHOLD...I had Ulcerative Colitis...an IBD!!! (This means that I had bleeding ulcers that lined my colon) Gastro Dr. 1 immediately put me on Asacol....then...STERIODS. I really didn’t see much improvement. I basically had to run to the bathroom immediately after I ate anything and car rides were HELL, which made my one hour commutes to work rather interesting. Depends became my friend and eating out was not an option. A couple of week being on Asacol I went to bed with really severe pain in my abdomen. Back to the ER I went when they discovered that I had developed Pancreantitus from taking the Asacol. This is also the first time I needed a blood transfusion. The gastro doc basically told me that I had no more options other than a drug that I would never be able to bare children while taking. So I basically said you are out of your mind and pursued a new gastro doc.
  

  So instead of going to another doctor right away I decide to wait it out for a few months...I don’t know...maybe hoping this would go away. I was just frustrating, not just for me, but for everyone around me. I decided finally to find a doctor in a completely different health care system. I had heard that Beaumont health care system was good so that’s where I found Gastro doc 2. I told him the whole story and he put me on Colozol which was a cousin to Asacol. It helped a little, but made my stomach upset ( I was also no longer on steroids). He took me off Colozol and talked about a very serious drug call 6-MP. It was a drug given to cancer patients to pretty much kill your immune system. I understood that I could not have children while on the drug, but the plan was not be on the drug forever. I started 6MP and started feeling better. Better meaning the symptoms of UC were going away, however I became more and more anemic, which I was really ignoring because hey...I wasn’t crapping my pants anymore. I ended up in the hospital requiring me a massive blood transfusion.

  While I was in the hospital my gastro doc came into my room and pretty much yelled at me for being so stupid for not dong something about my anemia sooner. I was embarrassed and knew that he was right. His next and final step was to think about surgery. That was NOT an option for me. The surgery that he was suggesting was called the J-Pouch. Traditionally this was a 2 surgery process. The first surgery they removed the entire colon and created a pouch that the end of the remaining small intestine and connected that to the anus in order for that connection to heal they create an illeostomy which means a colostomy bag will have to be worn anywhere from 6 months to a year. The second surgery removes the illeostomy and reconnects the small bowel, allowing waste to fill the internal pouch and passing through the rectum.

  Since at this time, surgery was not an option for me, I just became tired of doctor visits and new drugs that didn’t work. So with that frustration I stopped going to the doctor and just lived with the symptoms of UC. I did that for several months and then decided to look for gastro doc 3. I turned to the University health care system. and found my first woman doctor. I made my appointment and she listened to my whole story. She gave me promises that we would find an answer and that I would get better. Initially she put me back on steriods only and hoped there would be results. Steroids didn’t do much so we tried a sort of experimental drug called cellcept. It was a drug given to organ transplant patients. For weeks I took my Cellcept daily and saw no results. I was more fet up then ever......I stopped seeing gastro doc 3 and made a decision to live with what I had forever. Here is where things get a little fuzzy for me. From 2004 to 2006 I went untreated. With the suggestion of my family and a lot of prayer and soul searching I decide to THINK about surgery. I decided to go back to the Beaumont health care system, but a different doctor. Gastro doc 4 (Dr. Donald Barkel) sat patiently listening to the reader’s digest version of what I had been through. He really didn’t have anything new to tell. He was impressed by the knowledge that I had. He scheduled a colonoscopy and after the results a surgery date was set. June 22, 2006 was the date of part 1 of the 2 part procedure. I had two months before the surgery took place. I was scared. Very scared.

  I seemed to get more scared the closer that date got. The morning of the surgery I was a mess. I couldn’t stop shaking. Once I got to the hospital, my step-mom and dad were waiting for us. I got into my gown and then was asked to pee in the cup. I was so nervous that I couldn’t do it so they had to draw blood to do the pregnancy test. After the test came back negative they were ready to wheel back into surgery....the problem was that my mom and step-dad hadn’t gotten yet and I REFUSED to go into surgery without seeing my mother. They wheeled me in there and started to get me ready and said that they would wait for my mom, and they did. My mom got to hold my hand as they gave me my I.V. and as I got more relaxed. She had to go when they were ready to give the epidural...Yes I had an epidural for this. The epidural delivered pain meds directly to my spine. It really wasn’t all that bad from what I remember. I was knocked out shortly after that. The surgery went well. I had a nasty surgical wound, but the doctor said I did really well. The days to follow are a blur. Lots of pain meds and a lot of people telling me that the sooner I get up and moving around, the soon I could go home. The whole ostomy bag thing didn’t freak me out as much as I thought it would. I caught on how to change my appliance rather quickly. On the day before I was released I noticed an awful lot of drainage from a section of the surgery site. Dr. Barkel said that it was ok that drainage was good. I accepted that and my parents drove back home to Ohio from Michigan to recover. We get home and I’m feeling pretty good considering, however it only got worse from there. That drainage from the surgery site began to get more and more disgusting. It was changing colors and started to smell. My home nurse said that it was time to go to the ER. I was taken to Mercy in Canton and here is where the "fun" began. Trying to explain my story to everyone was exhausting. I was admitted of course and the following things were wrong: 1. MAJOR dehydration, 2. kidney’s only working 10% 3. a NASTY wound infection 4. I had STREP (not the sore throat, just the virus). So.....I immediately got I.V. fluids and antibiotics....Now we come to the wound infection. Now my case was assigned to the next surgeon available...this is what this sorry excuse for a doctor did to me. He came into my room, roughly removed the bandage, looked at the wound, SHOVED his thumb in the wound, and said that it needed to be cleaned out. He left the room, came back with scissors, gauze and tape. I asked if this was going to hurt and he asked the nurse if I had any pain meds lined up. She left the room and before she got back he proceeded to CUT OPEN THE WOUND....squeeze out the puss thus creating a cavernous, gaping, 7 inch wide by 6 inches deep hole in my abdomen. Right after the cutting  began the nurse came in with the morphine, which wouldn’t of helped at this point anyway. He stuffed gauze in the hole and taped it down. The pain was worse than I could have ever imagined.  I screamed so loud that I lost my voice, and I almost broke David’s hand. I cried for hours after it had happened. And all the sorry excuse for a doctor said was (to the nurse) that this had to changed again in 8 hours....yeah....he never laid another hand on me again...David and dad made sure of that...That’s when I was introduced to Dr. Kirby Sweitzer. Trying to make this story a little shorter...I was in the hospital for 3 weeks and When I went home I had a wound vac that helped keep my wound dry because it couldn’t be closed up, and I went home on I.V. antibiotics because the infection was that bad. I had a nurse come to the house 3 days a week to help change my wound vac dressing that went on for about another MONTH. Finally when I was detached from the I.V. and I didn’t need the wound vac anymore, I could then concentrate on getting well enough to go back to work. I was out for a total of 10 weeks, when it should have been 6.

  Ok, so I go back to work (in Michigan) and life returns to "normal". Day to day life with a bag was not so bad. I often didn’t even think about it. 2007 is right around the corner and I decide to start thinking about surgery 2 (take down). I go see the same gastro doc that removed my colon and we schedule at date, February 1, 2007. Again I was nervous especially after what happened to me the previous summer. Dr. Barkel assured me that it would be a fairly simple procedure. This time they were just taking away the illeostomy and reattaching it to my small intestine so that I could essentially poop out my butt. The surgery went well I was only in the hospital for 4 days and I when I came home I really didn’t feel far from normal. A couple of days later I went in for check up and the doctor removed my staples, told me that I looked great and that, unless I had any problems, he didn’t need to see for a few months. I went home and the plan was to drive down to Ohio to stay with my parents for a little while. WELL.....the next morning I wake up in this disgusting wetness that was coming from surgery site. I FREAKED out. I called David and he told me that I needed to go to the ER. So I drove myself up to the hospital and when I got there my pants were soaked in the front. I was admitted and after a cat-scan they determined that the connection that they had made was right under the surgery site that was once stapled and that until it heals completely, there would be some drainage so they fit me with a "temporary" ostomy bag and sent me on my merry way. So I drove myself back home and then packed my bag and drove 3.5 hours to Ohio to my parents house. A couple days into my stay I start to get really sick. I was throwing up, my stomach hurt, and I didn’t want to eat anything. Off to the ER I go. They determine two things: 1. That I had a blockage where I was introduced for the very first time to the NG tube....yeah NOT FUN! and 2. that I had a fistula. A fistula a hole internal (organ to organ) or external. That is what was causing the leaking to the outside of my belly. Dr. Sweitzer (the doc that treated me after the first surgery) was out of town and I had his partner this time. Dr. Boots wasn’t sure what to do since he wasn’t exactly a gastro doc. SO.......he sent me to The Cleveland Clinic via ambulance. There, they didn’t do much. They took another cat-scan and basically came to the same darn conclusion about the leakage that Dr. Barkel had. They were sure that the blockage was gone, so they sent me home...I go home feeling like my trip to the Clinic was pointless. I didn’t have an appetite and I just felt like there was something wrong. A couple days go by and I start throwing up again. Only this time I was throwing up bile.....it was the single most disgusting moment of my life. My mom took back to the ER and I was so humiliated as I sit there in a wheelchair throwing up this crap (literally). I was admitted and once again...the dreaded NG tube. I didn’t explain this before, but the NG tube is a huge tube that they shove up your nose it goes down your throat INTO you STOMACH. It hurts like hell....you would think that it wouldn’t hurt as bad when they took it out......WRONG...it hurts way worse. Anyway....so they take a lot of tests and this where it get really fuzzy.....I don’t remember if these things happened in this exact order, but oh well.... They got the blockage taken care, but were still concerned about the leaking hole in my abdomen. Dr. Sweitzer was back this time and we talked about surgery. My first surgery with a new doctor. He decided that he needed to go in and fix the leak, that it would not heal on it’s own. He sent me home for a couple of weeks to let things settle down a little before he cut into my abdomen again. March 12th would be the date of the surgery. I wasn’t really nervous because at this point I was like "what the hell"...I’ve been through all this....what’s one more surgery? The surgery went well. Dr. Sweitzer evened up all my scars and my abdomen looked alright considering. I was really hoping that this was it, I was all fixed. Well... Dr. Sweitzer didn’t want to release me until he was sure the problem was taken care of. I started eating and was actually hungry for things. All was going well, and then I start to feel not so good again. Had another cat-scan and they found that I was leaking internally. When Dr. Sweiter was fixing my fistula, he decided to kind clean things up on the inside of me. When he did that he removed some scar tissue that was "plugging" up a hole that was in the J-Pouch. So...The only way to fix was...you guessed it...surgery. Surgery 4 was a pretty scary. Even Dr. Sweitzer wasn’t sure what he was getting into exactly. The plan was that if he couldn’t take care of the leak, that I would have to have another illeostomy. In the mean time, while I was in the hospital I caught a VRE: VRE is Vancomycin-Resistant Enterococcus.

  Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don’t cause any problems in healthy people.

  I caught this simply because I was in the hospital for an extended period of time. Because I had this, anyone who came into my room had to wear special gown, face mask, and gloves. This included my family. I felt like a diseased monkey. Anyway...back to the surgery. For the first time, I was scared that I wouldn’t wake up. The surgery itself went well. I woke up with an illeostomy again. The doctor decided to keep me in ICU. The night of surgery day is a night I wish I could forget, and still, to this day gives me nightmares.  I had been on so many pain killers for so long. I began to see things that weren’t there. It started with bugs on my bed and then I thought there was a cat in my room. It got to the point that I thought that a demon was in my room and that the bed was eating me alive. It was so real to me and I still remember it. To have nurses just stand around staring at you, telling you to relax and go asleep while demonic powers are causing the bed to eat you is a very terrifying thing. My wrists where strapped to the bed and eventually fell asleep. When I woke up the next morning I screamed for the nurse and she let me up. I almost cry every time I think about it.

  So....I was in the ICU for one more day and then they sent back to a room. I slowly got better each day. Two weeks later I’m so ready to go home. The doctor finally decided to release me. He removed my drainage tubes from my abdomen (ouch!) and I was ready to go.

  Recovery was tough I had no energy for a long time. I would about pass out walking from the family room to the bathroom. My legs didn’t want work like they should. I found it hard to step up into vehicles. From March until about July I was struggling to walk far distances. I had to use the wheelchair a Wal-mart. I went back to the doctor about every two weeks so that he could monitor my progress closely. The only thing that happened bad was that I got a little hydrated and my iron was low, so on one visit he sent me to get some IV fluids and Iron. I felt 110% better after that visit.

  By the end of July I was back to "normal" for the most part. It was determined that I wasn’t going to go back to Michigan, so I look for a job in Ohio.

  So now I am currently looking at a surgery set for March 31st. A second attempt to taking my illeostomy. Can you at all see why I am scared to death?

   

  Sorry this was so long, but hey...I left out quite a few details.

  Thanks for listening.

  • 11:44 AM
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