Photos: Carter S.
Hey everybody, I’m Carter. I’m a 22 year old college student at East Carolina University. Mark and Megan have been kind enough to let me use their blogging page to post my experience with my recent J-Pouch surgery…surgeries.
I’ll start by giving you a little bit of the background. I was diagnosed eight years ago when I was 14. I had pancolitis, meaning the entire colon is diseased. Over the next 6 years I would be on a number of different prescription drugs, however, nothing that would put the UC into remission. I was on steroids from day one, and high doses of it. I became steroid dependent. Once the disease seemed to be somewhat under control, I would try to taper off the ‘roids’ but always had the same effect – a flair-up.
Two years ago I moved and started seeing a new doctor. The first thing she wanted to do was to get me off the steroids. I started taking intravenous drugs through the hospital which seemed to be the fix for me. I was able to come completely off the steroids but it wasn’t long before I started having symptoms again. I tried a few other drugs and ended up in the hospital one more time last year. Finally my doctor had me meet with a surgeon at the end of April. I need to say that this year wasn’t the first time the idea of surgery had come up. I think early on my doctors knew that surgery would probably be in my future, but we hadn’t exhausted all the medical possibilities. The next day after meeting with the surgeon I made the decision to go through with it and made an appointment.
I was on the schedule for May 22. The next three weeks went by relatively quickly. I tried to put the surgery in the back of my mind and focus on exams and work. That is very important for anyone who is facing surgery; try not to make things worse by worrying too much. Don’t get me wrong, I was nervous.
Part 1: The Colectomy & J-Pouch I went in the day before and had a colonoscopy. If you have UC you probably already know what these are like. The next day I had the operation which went really well. It lasted about 6.5 hours but luckily for me it seemed like no time at all. I woke up pretty sore but I wasn’t in excruciating pain. I did have a button I could push for a dose of morphine as often as every 10 minutes if I needed it. I also had the ileostomy which definitely took some getting used to. I didn’t, however, have colitis anymore. I was limited to clear liquids for the next two days, until my bowels woke up, then was put back on a regular diet but was told to “take it easy.” I did pretty well with that and was recovering nicely, so 5 days after the operation I was sent home.
The six weeks I had my ileostomy weren’t bad at all. Having the bag was a little weird at first, but I
adjusted pretty quickly. I was able to do pretty much everything I could before. I didn’t go back to work because lifting heavy objects is pretty much what I do all day (I work at Lowe’s) and I only had 6 weeks until I was going to have my takedown operation. Going out wasn’t an issues; I would just tuck the ostomy bag in my pants and my shirt would cover the top. I wasn’t very good about limiting what I ate although I never really had any problems with it. I was warned of food blockages but never had to experience one. The great thing about the bag was that there was no sense of urgency, whatsoever.
Part 2: The Takedown Operation Six weeks after my first operation (July 3) I was back in for the takedown. I went in the day before for a ‘pouchagram’ just to make sure there weren’t any leaks in the j-pouch. Everything checked out okay so I was cleared for surgery. This operation didn’t last as long, only about 2 or 3 hours. The nice part about this one was there was no preparation for it – I just couldn’t eat after mid-night the night before.
Again, when I woke up from this operation I was sore but nothing too bad. I was given pain medications. The next evening my bowls started waking up. I was passing a little gas and eventually some stool. Two days after the operation I was given regular foods. It was all I could do not to eat everything they brought me, but I really didn’t want to overdo it right off the bat. I did really well with solid food and was sent home 3 full days after the surgery.
I realize a lot of this sounds very similar to what Mark went through, but I felt like it would be good to post my story anyhow. I believe for someone who is facing a similar situation it is really nice being able to hear several testimonies from many different people. I was in contact with a couple of people early on, however I didn’t find Mark & Megan’s blog until after my first operation. I plan on using their advice and that of others, especially my doctor, and making a speedy recovery. Right now, I feel really good. I don’t have ulcerative colitis anymore, which is nice to be able to say.
Mark and Megan have given me access to this page on their blog so I will periodically post about my progress…but that’s all for now.
Today, July 9, has been only 6 days since my takedown. I was told I would be going to the restroom at least around 8 times a day at first. I would say I’ve been going at least 8 times/day but I expect that number will go down once the J-Pouch stretches and I’m a little more used to it, even more so once I start experimenting with Imodium and fiber supplements. I have been getting the infamous ‘butt-burn’ but I’ve been using Balmex Ointment and it has seemed to help. I described it to my brother as, “Imagine the spiciest hot wings you’ve ever eaten, and how your butt felt the next day. Now imagine just putting one of those hot wings directly up your ass.” I didn’t mention it before but being able to joke around with those who are close to you definitely helps cope with some of the worry and aggravation of UC. Anyhow, my stools have been firming up slightly so I imagine the frequency will go down over time. I will say, I’m not so sure I’ll be able to sacrifice some of the foods I love for a little less time on the pot…but I’ll get back to you on that one.
Two weeks after takedown 7-16-08
Alright, so it’s been 2 weeks since my second surgery and theres not much new to tell. The only thing is my ostomy wound; it’s still oozing some pus. I was warned to look out for dark or bloody pus or anything thing that stinks, but this has been the average yellow-white pus. My wound, otherwise looks pretty good; it doesn’t feel hot, and it’s not sore. I am going to call the doctor tomorrow just to make sure.
I’m still using “The Facility” about 8-10 times a day, but I’m starting to get a used to the new plumbing. I try to ‘hold it’ more and more so I can stretch the j-pouch. I’ve built up some confidence and gone out and done things with friends but nothing stenuous. Keep in mind, I said confidence…not cockiness; I’m not going to push my luck too much.
I’d like to throw this piece of info out there for anyone who might be a victim of the familiar ‘dungeon’ in the back of the gas stations across the country…hell, across the world. You know what I’m talking about, the 5’x5′ cell, the dimly lit restroom with a multi-colored toilet seat and a sink you know will only make your hands dirtier if you attempt to wash ’em. When I travel, I’ve found that hotel lobby bathrooms are typically pretty clean. They are used so much less then gas station restrooms. If I can make it, I will always look for a hotel. As an added bonus there is usually a brochure holder by the front door and occasionally free newspapers at the front desk…if you prefer reading material. Just remember, walk in and look like you belong there. If your afraid they’ll say something to you about not being a guest then pretend your talking on the phone and say, “I’m waiting in the lobby, come on down,” or something to that effect.
I realize that in some situations theres no time to be picky, but desperate times call for desperate measures, and believe me…I know. But thats another story to be told some other time. Plus, I’m straying away from this pages original intent.
*Quick note…I called the doctor a couple days ago to ask about my ostomy wound. The nurse on duty said it was completely normal to still be seeing a little pus from the wound. She explained that an ostomy wound isn’t like a normal surgical wound…after all, this is where my stoma was for 6 weeks. I can tell that it is slowly healing up.
Ok, so it’s been just over 5 weeks since my takedown operation. I am doing great. I have no regrets and not one time have I thought this was the wrong decision. I returned to work last Friday – August 1st, but with a 20lbs weight restriction. I have been lifting more than that; I lift with my legs and don’t really strain my stomach muscles so I feel like it’s ok. If you’re reading this mom, sorry…I’m stubborn. I know I mentioned my issue with giving up certain foods in an earlier post, but I’m starting to figure out what foods WILL NOT work for me. One day last week, for lunch, I had some Buffalo Shakers from Arby’s; I paid for it later that evening. A few nights ago I ate a large pizza and was up several times during the night – I think it might have been the pizza sauce. I’ve been able to drink alcohol. All I’ve really had is light beer and it’s not really bothered me. I don’t think I’ll totally give up my favorite foods; but I will definitely have to cut back. Maybe eat them when I don’t have any plans later on.
I have been taking fiber and Imodium and it seems to be helping. I’ve been going to the bathroom about 6-8 times a day; sometimes more depending on what I eat.
I’ve been going out with my friends, and like I said, I returned to work. My confidence is back and I don’t spend every moment I’m away from my apartment worrying about having to run to the bathroom. I do usually have to go at least once at work, but believe me, I ‘Gift-Wrap’ that toilet seat. When I do feel the urge, it’s not sudden; I am able to hold it – sometimes an hour or more.
My overall health is great. I’m not in shape because I’ve not started to exercise, but I’ll start back in a few weeks. I have put on a lot of weight since my surgery – I was down to about 125lbs which was really low for me.
*About my ostomy wound. There was a small spot that wasn’t healing up. When I went in for a follow-up my doctor told me it was a little flesh sticking out; it was no big deal. He put something on it, which I guess, burnt it off – it didn’t hurt. About a week later it was completely healed up. I’ll post some pictures later on. Thanks for reading and thanks for your comments and questions.
The most important thing to remember is to always keep a positive attitude. I realize it can be hard at times, but if you can have a good outlook on things it will make your experience with UC/J-Pouch surgery that much easier.
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