Sunday, June 21, 2009

J-Pouch Surgery

Well, I suppose I'll start out with a short, but sweet introduction. I'm Erin and I was diagnosed with ulcerative colitis in March 2007. I wouldn't say I tried every medication out there for colitis, but I tried quite a few. Asacol, Colazol, Lialda, and Sulfasalazine just to name a few. It basically got to the point where I couldn't be below 20 mg of Prednisone without having problems. I've watched my body inflate like a balloon and cause a lot of frustration for me. I mean, I'm 22 and my body looks like a freaking road map, every time I started to go back to my normal size, my UC would flare and I'd be back on the steroids. Not to mention, buying Depends has got to be the most humiliating thing besides the reason behind having to buy them in the first place. I'm 2 1/2 years behind in college after getting straight A's in high school. My attendance at work sucks. Needless to say, I decided it was time for surgery. I'm not one to wait around to see if the next treatment will work, I figured I'd get rid of the problem entirely.
After much convincing, my parents got me to have a consultation at The Mayo Clinic in Scottsdale, AZ. If I didn't think that the surgeon was such an amazing woman, I probably would have gone elsewhere. Her confidence just blew me away, I just thought she was awesome. So, I scheduled the surgery. I had to be in Phoenix 2 days early. So, I got there Monday June 8th. I had appointments scheduled all day Tuesday to make sure I was okay to have surgery and be under anesthesia. Then, I checked into surgery on Wednesday at 7 AM. They started prepping me around 7:45. For the ladies out there, they do pregnancy test you before the surgery... like right when they are prepping you. I was so fortunate (not) as to start my period about 15 minutes before they wheeled me into surgery. Awesome. They just gave me a pad and this pair of completely awesome stretchy underwear since you can't use tampons when they are operating. They got my IV ready warmed me up with an inflatable blanket called a Bair Hugger and gave meThe a shot of Heparin in the back of my arm (Oww). My parents came in to see me before they took me in, then they wheeled me into the operating room. All I remember from that is there was people all around, it was bright and smelled weird. The surgeon told me not to be nervous and that I'd be alright. Then I was out. I think it was around 9:15 AM when they started.
All I really remember about the recovery room was that it seemed very dim. It's all pretty much a blur. I just know that I was bored and was wondering when I'd be out of there. My mouth was SO dry. I got to my room around 4:15 PM.
When they took me to my room both of my parents were there. They asked me if I wanted to try to move myself to the hospital bed or if I wanted them to lift me with this machine they have. I opted to move myself. I actually wasn't feeling too bad, granted I had a lot of pain medication. They gave me these sponge things that looked like lollipops and said I could dip them in water to help with my dry mouth since I wasn't allowed to drink anything. I used them a lot. The pain medication that I had a button to was Dilaudid. The pain wasn't too bad, but the medication was making me itchy. They gave me benadryl for the itchiness. I kept dozing off and having conversations with people in my head. I kept asking my mom if I was having them out loud. Then I pretty much just slept. The night nurse came in to give me Heparin shots (lame). I opted to get them in the outer upper thigh because it seemed like the lesser of the evils. I did have some awesome leg wraps that I'm pretty sure help the blood flow, but it was like having a constant calf massage.
The next day they let me have water and clear liquids. Later in the evening the nurse asked me if I wanted to try to walk. I took a couple of laps around the hallway. I finally got to see the scarring. The surgeon did a laproscopic surgery. I have 5 small incisions, about 1 cm each. One of those is from the JP drain. The incision that they removed my colon (6 ft) and my appendix from is vertical along the side of my belly button and about 1 1/2" long. Then theres the stoma, of course. I sat in a chair for a while which felt alright. I actually was feeling better walking around and sitting in chairs than I was being in the hospital bed. I did a little more walking, then went to bed. That JP drain leaked all over me the entire time I was in the hospital. That sucked because I was constantly having to change the dressing on it and change the hospital underwear.
Day 3 they took away my pain button, I was very sad. They also pulled out the catheter. I think that's probably much worse for guys than it is for girls. It just felt weird. I had a little trouble emptying my bladder, but I eventually got that under control. I didn't really do much walking because I was getting up and down from my hospital bed trying to go pee so many times. That night they gave me solid food for dinner. I was happy because that was when I started getting hungry for something more than clear liquids. I had an ostomy nurse come show me how to change the appliance and how to empty it. After that I was comfortable emptying the ileostomy bag by myself, so I would empty it and write down how much there was for the nurses.
Day 4 was kind of the same thing. 1 Heparin shot in the late morning/early afternoon, 2 from the night shift nurse. Around 5 AM they came to draw my blood every morning. They checked my vitals every few hours, came and gave me pain medicine. I was unhooked from everything but the JP drain. The doctors told me I would probably be discharged the next day. That night I went down to the hospital cafeteria with my mom. That was fun. Everyone seemed pretty impressed with how quickly I was recovering.
Day 5 they came and did the same routine stuff. A doctor came by to take out the JP drain. That felt weird, kind of uncomfortable. They told me I was going to be discharged, so I was excited. I was out of there by about 11 AM. My parents and I went to our hotel and I changed clothes. I was feeling good enough to go to Wal-Mart with my dad to get some things for me to eat on the low residue diet. I felt good enough to be up and about, but ran out of steam pretty quickly. I had to stay in Phoenix for 3 days after they released me. I pretty much just relaxed, but went out a couple of times. I went shopping with my mom for some ileo bag friendly clothes and went to dinner at Dave & Buster's with my parents. For the most part my back and butt were hurting worse than the surgery pains. My stoma has been sore especially from the adhesive stuff that the appliances have on them. I can sort of localize where the pains from the surgery are. Every day since I've been out of the hospital I've had a hard time getting comfortable enough to sleep. I am a stomach and side sleeper, so it's been kind of annoying. I'm currently 11 days out of surgery and it's the first day my back hasn't been too sore. I'm still taking the Vicodin they prescribed me. I feel better when I'm up doing something. My surgeon laughed about how active I was 1 week out of surgery, but I definitely get worn out fast. I am so happy I went ahead and had surgery. The ileo bag has leaked a couple of times, butI haven't felt this good in 2 years. This is the first time in so long that I haven't been afraid to go anywhere for fear of not making it to a bathroom. I only wish I had made this decision sooner. Now I'm just waiting for the 2nd surgery, which should come around late September or early October.

2 comments:

  1. Hi Erin. Thanks for your surgery! I lived in Phoenix for a long time and worked for CCFA so I probably know your doctor in some sort of way. I have had colitis for 10+ years and have been in complete remission for just over 3 years. Now I am entering the surgery phase due to one step away from cancer cells presenting and the length of time I have had UC. UGH!
    I have so many questions but you did answer a few. Please feel free to email me at mlguy@comcast.net or to visit my blog www.road2singledigitjeans.blogspot.com by the way it has nothing to do now with the actual www. address.

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  2. PS.I meant to say thanks for you surgery story not thanks for your surgery!

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