6 months post-op

Here I am 6 months after my full proctocolectomy and permanent Ileostomy surgery. So far life is back to normal except for some minor, And I mean MINOR, changes in my life. I've had some issues with leaks from the body wafer.Also had 2 bags ripped off of me, by accident, playing around with my son. I did have one scare. I thought I had a blockage, but it was an intestinal cramp that landed me in the hospital for 2 days.  I miss eating Snicker's, popcorn, and berries mostly, but I've been very careful and still eating some berries. As far as work, Back to 100%. Able to crawl, climb, push and pull on anything and everything I need to. Even started playing golf again. My scar is fading and starting to blend in with my surrounding skin. During the hottest, sweatiest weeks, I was able to get away with only changing my appliance(wafer and bag) twice a week. Slowly introducing hot food back into my diet. The only problem with hot and spicy food is the aftermath when I have to empty the bag. Rotten death wouldn't even come close to describing the smell. I'm still trying to find out a way to make the smell tolerable.  So far no luck. I've also tried different types and sizes of appliances. Hollister has a 2 piece system that I like a lot and have been using. The smaller bags are good for emergencies but for me, I couldn't sleep in the due to the gas produced during the night.  Well thanks for reading and I'll be back again to update in a couple more months.

Back to work - 9 weeks- 11 weeks

Hey everyone. Well, I'm back to work as a mechanic after 9 weeks post-op. Still have a little pain in my stomach, but I can deal with it. Moving and climbing all over equipment isn't as tough as I thought it would be. I thought the reaching would really hurt. I am being very careful what I do so that I don't get a hernia. All the heavy lifting that I used to do will no longer be done. I could've been back to work sooner, but my work required me to take a physical to return to work. Then they sat on the paperwork for a week. UGH!
Now it's been 11 weeks post-op and I've really got back into the swing of things. Yesterday I did a lot movement with my stomach muscles and they got REAL sore. Woke up this morning and most of the pain has subsided. Raising my voice like a yell or scream still hurts a little bit. I'm also figuring out what I'm able to eat and what doesn't agree with me. I have stayed away from the nuts and skinned meats. Didn't really change much in my diet because I tried to eat healthy before I had surgery. I jumped on a scale to see if I'm gaining any of the 35 lbs that I lost and was happy to see that I have gained 5 lbs back. I'm enjoying getting out more since I don't have to go running to a bathroom every 15-20 minutes. I still get the urge to start panicking when I get in traffic or a long line. That's when I reach down and grab my bag or rub around my appliance. It reminds me that even if I have to go I'm protected. That protected feeling calms me down. Sometimes while driving I get phantom pains or sensations that I have to go. I've come to know what those feelings are and how to deal with them. Life with an Ileostomy wasn't a huge transition for me. I have a lot of support and the people online have been a huge help. I guess I'll keep this post going as my life continues. Thanks for reading.

One month Post-op Surgery

Welcome back. Here I am one month after surgery, and still having rectum pain and a little abdominal pain. Just enough to make everything and anything uncomfortable. I've been to the doctor for a few check ups, and he said everything is healing great. He also said that the pain is the scar tissue healing and that it would just take time to heal. I'm hoping it heals faster then just "soon"! I'm going crazy constantly moving to find a comfortable position. I've started driving around the 3 week mark. Lifting things has been slow. I'm slowly increasing the weight of things carefully. Don't want to hurt myself. Still looking at going back to work in a month. If you know me, and I'm sure you probably don't, I'm not one to just sit around and sleep all day. I am an active person. I am having trouble sitting down and healing. Mentally, on one hand, I feel cheated in life because I had to make this decision to live with a bag hanging off me for the rest of my life. On the other hand I get to enjoy a lot of my life that I had lost due to the disease that took over my life. I know once the pain is gone and I'm back into the swing of things fully, I'll be happy. Until I get there it's going to be a bumpy road. Well, time to find something to do. Thanks for keeping up with my story.

First Week Post-op Surgery

Day 1: It was REALLY hard to move without hurting in every position. I lay flat on my back ...pain, can't lay fully on either side because my left side has drainage tubes and my right side now has a bag hanging three inches from my belly button. Had a stomach drain tube poking out of my nose, and wires all over my chest and an IV in my arm. Looked like I've been to Hell and back, just without the sunburn .
Day 2: Still in basically the same condition only now I was told to get up and get walking around. Yea, I thought the same thing. Screw You! But I tried it. Started by pulling up to a sitting position, where the room span faster then wheels in a NASCAR race. Then I took a deep breath and went for it, thinking only about my balance. BAM! I'm up now what? Slowly shuffling my feet so that anyone in a walker could pass me, I headed out around the nurses island. One lap and I was exhausted. Back to bed I went. After a quick nap, some pain meds and trying to get comfortable, now they want me to pee. I laughed. Didn't feel like I had to go. Later they did a Straight Catheter and pulls the juices from my loins. Yea, not something I wanted to do again. Then off too LA LA Land it was for me again.
Day 3: Day three started off with the normal abdomen pains only now I'm hearing this strange noise. Like a gurgling. So now my new stoma wants to talk to me, as didn't sound to happy! With every gurgle a sharp pain would stab me in the belly.  That's was good though right? Yes, but it hurt bad. Now the nausea sets in. So picture this: laying on your back, slightly elevated, room spinning making you want to throw up, and abdominal pain all at once. Now let throw in the tantalizing sent of fresh blueberry pancakes. Yup, you guessed it, rolled over and out it came. So I finish my "Speech" and try to make my way to thee bathroom to get cleaned up. After I get cleaned up, I make my way back to bed for a while. NOTE** Let your nurse know the second you free bad. Might have helped. 

DAY  4: This is the day where I was starting to remember things going on around me. Still not eating anything, Ice chips is the only thing I could have. Today was just a maintain day and try not to throw up.

DAY 5: Today my Doctor decides that I'm allowed to start my clear liquid diet. Beef broth to start out a day. You would've thought I had a Prime rib in front of me. I was so happy to eat something that had some flavor other then the ice chips.2 meals later I was moved up to solid foods. To my surprised, I was feeling better since I was getting more nutrients in me.

DAY 6: After uncovering my meal, I realize that I  am only going to eat super small portions. 1 slice of french toast and a fork full of eggs small portion.Just after breakfast, my doctor shows up and asked how I was doing. I told him I was keeping food down and felt tender but good. His response, to my surprise, was "OK well lets get your discharge paperwork started then". YEA!! I GET TO GO HOME!!!

DAY 7: One week after surgery, I still have to keep moving and eat small portion, but am starting to feel good. Not sure if it's because I'm home or because I got more then 4 hours of broken sleep. Think I might have gotten around 7 hours of sleep.

Surgery Pre-op

As you well know if you read my last post, I'm going for surgery to "cure" my Ulcerative Colitis. It's about 2 1/2 weeks out from my surgery and I went for all my pre-op appointments. I had to get blood work, EKG, and a chest X-ray. I was able to get all three done on the same day. It took about 3 hours total. I've also talked to the anesthesiologist nurse about my medications and past health history. All I have left to do is finish filling out the paperwork for my short term disability while I'm out. Once that is done, then the waiting game begins.

Life with Ulcerative Colitis

          I am a 36 year old male in fairly good physical shape. I was diagnosed with Ulserative Colitis (UC) around 12 years ago. It started off with constant trips to the bathroom and then the reaction time stated getting shorter and shorter. Finally I felt that something was wrong, so I made a appt with a GI doctor. After some test and my first colonosopy, I was told that I had a flare up of UC. I didn't know what to think of this new found health problem. I started doing research and asking a lot of questions. Come to find out a lot of the questions couldn't be answered.   My GI Doctor started pushing pill after pill on me. After about a year I started getting better.  Skipping ahead 4 years, I had a massive flare up causing me to find another GI doctor because the other one wasn't doing and good. I found a new one that actually got me in remission for almost 3 years.
          When I had my last flare up, I went back to my doctor only to find out he was leaving his practice. As you might already have figured out, I wasn't happy! Nobody in the practice would release any information on where he went or why he was leaving. So in his place the practice gave me a P.A. She tries everything all over to no avail. I went in for another conoscopy which resulted in me having 30cm of inflamed large intestine and rectum. At this point it was around 8 months of pain and suffering. I was sick and tired of being controlled by this disease. Every time I mentioned surgery to my GI PA, she shot it down like a nerd at the Playboy Mansion. It was time for me to take actions into my own hands.
          In January 2013 I decided that I would go and talk to a surgeon to get any options and to get an opinion. After talking to the surgeon, He put all the information on the table and didn't sugar coat it at all. He even recommended that I see another GI. I had seen 3 GI's and all said the same thing, and I wasn't happy with the answers I was given. The surgeon asked me to think about it and return in 2 weeks with a decision IF I had one. I had done my homework prior to going in and knew what I wanted, but agreed and left.
     Two weeks later I went back in to tell the surgeon what I had decided. My decision was a full Proctoelioscopy with a Elioscopy.  I understand that this is a life changing  choice and that my way of life will change.  The main reason I picked this option is because:1)My quality of life would greatly improve, 2) the option of the J-pouch would require 2 surgeries and I didn't want to put my body through that much torture, 3) with the J-pouch I would have a ostomy bag for a couple months ANYWAY, so why not just keep it.  He knew I was serious and agreed to do the surgery. As I was walking out, he told me that he knew I had already made up my mind, but still wanted me to think about all the information that he had given me. For that reason, I gained a lot of respect for him.
         Here I am writing 3 weeks before the surgery and I'm not really nervous or scared. Actually kind of excited to get back to a "normal" life. I have a few things to do for pre-op but they won't take more then a day to do. I will try and update this the day before I go in and within the week post-op.