Jessalynn

by on Sunday, January 25, 2009 18:34
This entry is filed under: surgery

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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10 Responses to “Jessalynn”

  1. avatar

    Brevin says:

    January 25th, 2009 at 10:57 pm

    Thank you so much for sharing Jessalynn! Hearing that surgery is the best thing to happen to you is a really big pick-me-up for those of us still building up the courage to go through with it. A reaaallly big pick-me-up : )

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  2. avatar

    WholeHeartAndSoul says:

    January 26th, 2009 at 8:04 pm

    I can relate to much of your story Jessalynn (I have a cousin named Jessalynn too!). I had only been diagnosed with UC a few weeks before my colon was removed. Your spirit and determination are an inspiration to me. Thank you for sharing. Keep up the good work in school too!! You go girl!
    Abby

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  3. avatar

    Mary says:

    January 27th, 2009 at 10:50 am

    Thanks for sharing your story, I can’t believe how much you went through but you seem to have handled it all really well. Wishing you great health.

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  4. avatar

    Camli says:

    January 27th, 2009 at 5:33 pm

    Totally second what Brevin said =] Although I already have a date for my first surgery set.

    You say you have to 6 times a day, but is it really urgent and painful? Just trying to get an idea of what to realistically expect…

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  5. avatar

    Jessalynn says:

    January 27th, 2009 at 9:13 pm

    Brevin, I’m glad my story can help. It was definitely hard especially after my second surgery wondering if I made the right decision, but things got better and after my third surgery I feel great. It really was the best decision I’ve made. Thinking about how sick I was a year ago, I can’t imagine still living like that. I hope you the best!

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  6. avatar

    Jessalynn says:

    January 27th, 2009 at 9:20 pm

    Camli, at first it was kind of urgent, though I never had any accidents (knock on wood). It’s nothing like how living with colitis was. It’s not painful at all. I take Imodium three times a day (if I remember) and it’s all manageable. It’s been almost two months since my takedown now and I average around 5 times a day typically. I feel like I live a normal life again. Words of advice, you have to have a bit of humor to deal with it all, it makes it all so much easier! :)

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  7. avatar

    Renaye Ottman says:

    February 8th, 2009 at 7:12 pm

    Thank you so much for sharing your story…. How familiar it all sounds. I was diagnosed with UC when I was 22. I had quit my job to go to school full time 2 weeks before I got too sick to leave home. I was admitted into the hospital for 10 days and my doctor told me that I needed to drop out that fall and try to go back in the spring. I remember just crying in the hospital bed because school was all that mattered to me at the time. It has been 2 years without a remission now and my surgery is in 25 days. The past month has been the worst with so much pain on a daily basis and way too many accidents. I really can’t wait for the surgery and to get my life back. Thanks again for sharing your story!

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  8. avatar

    nathan says:

    July 21st, 2009 at 2:23 am

    Just thought I would add my story to this incase it is useful to anyone. Firstly I apologize for any gramatical errors as I am still rather ill and am wrighting this on an iPhone. I was diagnosed with colitis (after being told by doctors for over a month it was just piles) at the age of 18 a few months before my 19th birthday. I was very fit, I played rugby at a high level and competed in powerlifting and athletics. I weighed around 14stone or 92kg I think. My doctor tried everything to avoid me having the surgery but eventually it became my only option. I was seriously weak after the first operation and was vomiting constantly. I lost 2stone in a very short space of time and couldn’t bring myself to even look at my stoma. But eventually I came to terms with it but I still lacked confidence, especially around the opposite sex. I did go out but only with close male friends, none of which knew about my condition. Then one night I met a girl a few years older than myself. A nurse in the very hosptial I had been in for my surgery would you believe. She actually worked out what surgery I had had the second she saw my room. Stupidly I had left a skin barrior cream and an adhesive remover on top of my tv. She laughed and asked when I planned on telling her. She didn’t even care a out the scars and the stoma. I am still with her today over six months later. Anyway I seem to have gotten a little side tracked. The second operation went well except my epidural stopped working and I was without pain relief for over 4 hour. I was released home after 7 days. I got my strength back a lot quicker after that operation than I did the first one. I had my take down 5 months later. Appart from a bad reaction to morphene I went great. I was released after 3 days. I was only going to the toilet around 8 times a day. I thought after three weeks I was in the clear. Then one morning I woke up in agony and fell to the floor doubled up in pain. I was rushed to the hospital and was told my j pouch had perferated and I needed to have emergency surgery. I had to have a temporary ostomy again for atleast 6onths to let the pouch heal fully. I was in the intensive care unit for the days. I was in hospital for over two weeks. The site of the incision didn’t close well and I was left with a large open wound. The attached a vac pump to it which sucks out fluid and speeds up healing. I was released home with the vac pump still attached. I weighed just over 11 stone at this point. I am currently in my bed with the pump humming in the back ground and suffering back pain stomach pain and shivering fits. I have been out of hospital less than a week and I am struggling to cope with the stoma. It’s as much of a shock as it was after the first operation. I have never felt lower. My family and my girlfriend are doing there beat to get me through this. With there help I’m sure I will. I have had my share of complications so hopefully it will be smooth sailing from here. Good luck to everyone who has the surgery. Even with all the pain it will be worth it in the end.

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  9. avatar

    Megan says:

    July 22nd, 2009 at 2:44 am

    Hey Nathan, Wow. Quite a journey you’ve been on, but luckily sounds like you found “love” with a nurse out of it all. Which is a pretty good reward! The stoma is a real shock for most people and something we talk about a lot on this site. You will probably appreciate this recent post from Brevin for Elise who just found out she likely won’t get a jpouch and will need a permanent ileostomy. Coping is tough but with humor and family/ friend support (which you have) you’ll get through this http://www.jpouch.net/2009/06/29/much-needed-fashion-sense/

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    avatar

    Nathan Reply:

    thanks for the encouraging words megan. I have been improving quickly, mainly thanks to the friends and family. thankyou for pointing out the post i will read it right away. I dont get onto the internet much but i checked this the second i got online!

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