J-pouch Life » complications http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 Jessalynn http://www.jpouch.net/2009/01/25/jessalynn/ http://www.jpouch.net/2009/01/25/jessalynn/#comments Mon, 26 Jan 2009 01:34:59 +0000 Jessalynn http://www.jpouch.net/2009/01/25/jessalynn/ 100_1115I was diagnosed with UC at the age of 19 after my freshman year of college. Things started progressing very rapidly and I did not respond to medications very well. I tried numerous medication including Remicade infusions and prolonged use of prednisone. After getting very sick one weekend I was admitted to the hospital on March 17th. My doctors had me meet with a surgeon a few times because they knew that surgery would eventually be in my future, little did I know how near my future was. After trying one last medicine, and developing pancreatitis, I met with my surgeon again and didn’t know what to think when she said, “We have you scheduled for surgery tomorrow”. I couldn’t believe that I hadn’t even officially been diagnosed with this for a year and I already needed surgery. The only thing I could think about was how I was going to finish the semester; I was bound to finish the semester. My parents and family told me that was not thmarch27e most important thing at the moment and that we would figure all that out eventually.

Surgery day, March 27th, seemed like torture as I laid in my hospital bed with the clock on the wall across from me. I watched the minute hand tick as I waited for my 3pm surgery. I was finally taken from my room and wheeled down to the basement where I would have my 6 hour surgery. My doctors told me that I would feel better almost immediately, and I really did. The day after surgery I felt a different kind of pain. It wasn’t my usual sharp pain that made me sit in the fetal position, but just normal pain from just having surgery. My colon was sent to pathology because it still had to be determined whether it was definitely Colitis or Crohn’s. My colon was diseased at the sigmoid colon and then it skipped a large part that was “healthy” and the colitis showed up again at the ascending colon. This is uncommon in Colitis which led to the possibility of Crohn’s. I was relieved when the results came back as Colitis. I think for a split second it was the only time I was happy to have Colitis.

I must confess when I found out I was going to have a temporary ostomy, I did not take it well. I thought I was going to look like a freak and everyone would be able to notice. I told my parents I wasn’t going to leave my house the entire time I had it, I wasn’t going to do anything and just sit at home. The first time I saw my stoma, I didn’t know how to feel. I couldn’t handle the fact that part of my small intestine was now sticking out of my skin, this is not how it’s supposed to be. I eventually got better with it and with the help of amazing ostomy nurses I learned how I would take care of it for the next couple of months. I remember seeing my doctors for the first time after my surgery and asking when I could eat, it was the first time in months that I actually had an appetite. My doctors told me I had to name my stoma, I told them I didn’t plan on getting that attached. Little did I know how attached I would really get to it. I eventually gave him a name, yes somehow I decided it was a male entity and his name was Jeffrey. I was finally released from the hospital and returned home where I had a home nurse for a few weeks. After a month or so I finally returned to school and was able to finish the semester only having to drop 2 classes and miraculously achieved a 3.75. My biggest fear of not being able to stay on track with school was over, it was now summer and I was in the clear, or so I thought.

My next surgery was scheduled for July 23rd. I figured this gave me 6 weeks of recovery to start school again in the fall. Everything looked good, my health was up, and I felt like a new person. I must say that though I thought I would never leave my house with an ostomy I did everything I would have done without having one. I went camping, went on a road trip to Ohio, swam, went to amusement parks and went on rollercoaster’s, went tubing on the lake, lived a normal life. My friends made living with Jeffrey so much easier. We joked about it and by having a common name like Jeffrey made it possible to talk about it no matter where we were. My friends never treated me differently and I appreciated that the most throughout my whole ordeal

I went in the morning of my surgery; everything went as planned though they were unable to connect everything in one surgery, so I still had Jeffrey which was a disappointment. I would continue to be let down when I found out I had gotten an infection inside near my pouch and another one in my incision. On the plus side, due to my infection I received a private room which made it easier for my mom to stay the night. I must mention the hospital I had my surgeries done at was an hour from my home so my mom stayed with me every day and night. I am thankful to have a mom who stuck by my side as much as she did, I don’t know how I would have gotten through it all without her. Due to the infection in my incision I had all my staples removed and the incision was wide open and it was packed. Doctors would come in daily to check and see how the infection was. When I say doctors I mean many doctors, there were like eight of them standing all around my bed and they would lean in to see my huge incision. I felt like I was a patient on Grey’s Anatomy.

I was finally released from the hospital 17 days after my surgery to go home on antibiotics for my infections. Once I returned home, my home nurse was re-instated and things seemed to be going ok. That all went downhill really fast. I was vomiting and became really dehydrated. After 8 days of being home, I returned to the hospital to get liquids and was admitted once again to keep an eye on me. After being in the hospital for 8 days I went home with my second picc line for antibiotics, my first one was taken out after a few days because I developed a blood clot in my arm. Things seemed to be going well and after a CT scan showed the infection near my pouch was gone I had my picc line removed. I returned to classes but my health started deteriorating again. The second week of classes I found myself back in the hospital due to dehydration. After finding out that the infection had come back I had a third picc line put in. I also had a tube placed through the top part of my butt and placed near my pouch where the infection was to hopefully help drain it. Now I really looked like a freak. I had a tube attached to a bag coming out of my back that I had to pin to the inside of my sweatpants, a picc line hanging out of my left arm, Jeffrey was still there and I had lost about 50 pounds since the whole thing started which meant all my clothes were falling off of me. Still I was determined to go to school and with the help of family they drove me the 45 minutes from home to St. John Fisher College. Things definitely started to look up, I had my tube removed, then eventually my picc line and I felt fantastic. My third and final surgery was scheduled for December 10th, the day after I finished my finals.

My third surgery went so well, better than I could have guessed. I went in on Wednesday and returned home on Friday, my shortest stay yet! It’s been almost a month since my surgery, my incision isn’t completely healed but I feel great. I feel like I’ve been given a second chance, I feel like I’ve started a new life. When I was going through it I would sometimes find myself asking “why me” but feeling bad for myself wasn’t going to get me anywhere so I sucked it up, dealt with it, put my best foot forward and kept going on with my life, trying not to let it take over me. So many people have said, “You’re too young to go through something like that”. I feel it was the best time. I was at the age where I could understand what was going on, research stuff on my own, had the ambition to go on and achieve all that I wanted, and had the great support of amazing friends to help me through it all. I think surgery was the best thing that has ever happened to me, my best decision (not that I really had a choice). Now that it’s just about a month since takedown I find myself going to the bathroom about 6 times a day with the help of Imodium. This seems like nothing compared to the 20 or more times before my surgeries. What doesn’t break us makes us stronger, and I feel like I have grown a lot as a person since all of this has happened.

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]]> http://www.jpouch.net/2009/01/25/jessalynn/feed/ 10 Complications: Small Bowel Perforation http://www.jpouch.net/2008/12/21/complications-small-bowel-perforation/ http://www.jpouch.net/2008/12/21/complications-small-bowel-perforation/#comments Mon, 22 Dec 2008 03:20:47 +0000 Eric http://ucstory.wordpress.com/?p=747 My incision and stoma after step one

My incision and stoma after step one

During the second of three surgeries (I had a three-step surgery, instead of a two-step surgery) a complication occurred where my small bowel was perforated. Here’s what I can remember of the occurrence. Everything was fine, I even asked the surgeon to sew up my incision instead of having staples (this is usually a choice, ask for it if you want it!). The first surgery left a huge scar, and by sewing it up I could minimize the scar the second time around since they use the same incision point for surgery #2 of a three step process.

Everything was great for a day or so; I had a nice, clean incision, I felt fine. Somewhere during the second day, I remember now that it was a Thursday, I started feeling cramps — well cramps are hard to imagine considering I had my stomach slit open. Maybe “crampy” is a better way to put it. After a while, it felt as though I couldn’t relax my abdominal muscles, then I couldn’t relax almost any muscle in my body. I tried to sleep after a dose of morphine (which gives me terrible dreams by the way). My wife was sleeping on a cot in the hospital room (something she always does when I have complications). Around three am I awoke and could no longer sleep: my muscles were tense, my mind was racing, I could not relax any part of my body. I was concerned about this tensing because I didn’t want to reopen the incision that was not healed yet. My wife tried to comfort me, told me to relax, but relaxing was impossible. I can’t recall the next few hours but I went into emergency surgery early Friday morning.

My incision after step 2's emergency reopening

My incision after step 2's emergency reopening

Because they had to reopen an incision that was just closed not more than two days ago, the manner in which they closed the incision looks a little different than most people’s. See how it curves left and right (the picture is sideways: feet to the right, head to the left). I’ve posted a photo here with the hopes that it will help others. My takedown, or step three of the three-part surgery, was on 11/4/2008. I’ll post a photo of the current scar in a few days. It really isn’t that bad despite the way it looks here.

Sure, it took a little longer than most for me to recover from having two fully invasive surgeries on almost adjacent days. I was in the hospital for two weeks instead of one, and for a week or two out of the hospital I was very weak and still somewhat nauseous, but I held in there.

Hang in there everyone!

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