Post-Op

Today, I had my 10 day post op appointment with my surgeon. As expected, they removed the staples (thank God!) and placed some "steri-strips" across the wound to keep things together until it heals a little more. These strips should fall off in a few weeks, according to Dr. L.

Pre-Staple Removal

Pre-Staple Removal

It looks really irritated, but
that is mostly from where the staples
started to pull on the skin.

No More Staples

The entire office staff was surprised at how well I was doing. The nurse was shocked that I was only in the hospital for 3 days! I'm probably MUCH younger than most of the patients they see, so this is probably a contributing factor to my speedy recovery! (On a side note, for one of my appointments at the surgeons office, I came to sign in at the window and the receptionist asked if I was a pharmacy rep bringing samples. I'm definitely younger than most patients!)

I asked about immodium since I am still having 8-10 BMs a day and 2-3 at night. He told me it was ok to go ahead and try the immodium since it works much better than the pepto does to slow things down a little. I took one around lunch time and haven't noticed much difference, but hopefully it will kick in later today.

I also asked about my diet. Essentially, I can eat anything I want! However, he did caution to start slow and see what works and what doesn't. I've read other places that sometimes your body will not react well to a specific food the first time you eat it, but if you try again later, you can have a much different result. The idea is to introduce one new food at a time to see how things go. That way you have an idea of what foods don't work with your new plumbing.

Finally, I asked about the urges that I have been having. He confirmed that these are normal since the pouch gets distended very quickly. As time goes on, the pouch will stretch and will not become full so quickly and these feelings should diminish.

I will see Dr. Liberman again in about 4 weeks where he will take a look inside my pouch using an anoscope. He wants to check the remaining rectal tissue that I still have and make sure the pouch looks OK. Another exciting "exam" to look forward to!

1 Week Update

So, I am 1 week out from surgery and things are going VERY well! I feel very good physically, but I'm still adjusting to the feeling of having a functioning J-Pouch.

My bowel movements have slowed down a little and are closer to being a formed consistency. The "butt burn" got pretty bad, but I used ointments and medicated wipes to help with this. The other thing that has helped with this is a "travel bidet." Basically, this is a spray bottle that I can use to clean my bottom when I am finished using the restroom. This limits the amount of wiping I have to do after a bowel movement so that the irritation can heal. Plus, I'll admit, it feels kinda nice :)

My appetite is back to normal (again something that didn't happen for a while after surgery #1), but I am still eating fairly bland for the first few weeks to allow everything to heal. I hope to start introducing more foods (i.e. fresh vegetables) within the next month and should be back to normal soon after.

The strangest and most difficult thing about the pouch so far has been very sudden and intense urges to use the restroom. These somewhat painful cramps last about 10-15 seconds and go away about as suddenly as they came. These were much more frequent right after surgery (I think from the gas in my abdomen), but luckily they have begun to subside. They happen less frequently and are less intense, but it makes it hard to know when I really have to go to the bathroom. If I went every time I had one of these urges, I would be in the toilet quite often. I think resisting this urge will ultimately help stretch the size of the pouch and help it learn its new role in my digestive system.

I've been walking outside a few times, but it has been very cold so there has been little motivation to go outside (it was actually snowing one day when I walked at the park... this is crazy for March in Georgia!). Today, I ran 3 errands including getting some new running shoes for my Half-Marathon. This involved a little bit of running to check the fit and surprisingly, it felt pretty good!

I have my post-op appointment on Friday where I will hopefully get the staples removed (they are driving me NUTS) and will ask a lot of questions in regards to the pouch. Hopefully, the majority of this journey is almost over!!

Hospital Stay for Round 2

The surgery stay this time was thankfully much shorter than last time. I was in a private room the whole time, but the room was significantly smaller than before, which was fine for the short stay. After the nurses got me settled in and let my family in, I was able to look at the incision for the first time. Unfortunately, there was still a bandage over the incision, but at least there was no bag! I found myself checking frequently for the bag, but to no avail. I guess "old" habits die hard, right?

My Pain Button

Since the incision is so much smaller and the surgery less invasive, I did not have an epidural this time. Instead, I had a traditional pain pump, complete with a little clicker to get a "hit" when I needed it. The medication that I had was called dilaudid, which is a derivative of morphine. I think I had this last time, but can't recall completely. I truthfully did not use the pain pump very often. Last time, the pain medication made me sick several times and I think it slowed down the process of my gut waking back up. So, since my pain was minimal, I only used it to take the edge off and for some nice naps every so often.

I truly felt pretty good starting from day 1. I was able to get up and walk around the hall the night of surgery, something I didn't do until the afternoon of day 2 last time. Walking is one thing they tell you to do as often as you can and I don't think I did it enough after the first surgery. This time, I was determined to walk all over the place! After the first night, they removed my urinary catheter, so I was able to put on shorts (which I did on my own... again something I couldn't do last time until my 2nd or 3rd day at home, aka a week after surgery) and walk the halls in flip flops. It was much more pleasant than wearing 2 robes and slippy socks that the hospital provides. On day 2 I think I walked 5 or 6 times, each time going around the hallway 3 to 4 times. The coolest thing about these walks was seeing some of the same nurses I had last time. I recognized faces when I first got on the hall, but didn't expect them to remember me. Somehow, many of them did and it was really cool to see them again. Angie, the nurse I had the first few nights last time, was there one day and we saw her in passing. She promised to come see us later, but I think we were sleeping by the time she had a chance (but she left a note on my board... definitely still my favorite!). I was amazed that they still remembered me, but my mom pointed out that it was probably because I was one of the youngest people on the wing both times I was there... plus I'm an easy patient!

On the night of surgery, I was limited to "eating" only ice chips, but I was moved to clear liquids on the morning of day 2. They brought me some juice and broth for breakfast and it tasted SOOO good! However, by mid-morning, I was very nauseous. I had not yet moved my bowels, so everything was getting clogged up and adding juice to the equation was not helping. I never vomited and the feeling subsided, so I decided to go for a walk. Walking not only helps you recover physically, but it also helps get your guts moving... and boy did they get moving! Later in the afternoon I had my first bowel movement, which looked a lot like toxic sludge. After things started moving, they kept moving and I was in the bathroom very frequently the rest of my stay in the hospital. I did have a small accident the first night while sleeping, but other than that, I was always able to make it to the restroom in time. All of my movements in the hospital were very liquid and I was prepared with my own soft toilet paper and moist wipes. These helped, but did not totally eliminate the dreaded "butt burn". Since I no longer have a colon, the output is not only more liquid, but more acidic. This, plus the fact that I haven't used my butt in the traditional sense for four months, leads to irritation affectionately called "butt burn" by j-pouchers. This should go away after a few days as my stool becomes more formed.

On the morning of day three, my surgeon put me on a full diet. He also said that if I could handle to regular food through dinner, I would be discharged that evening! This was GREAT news and the food was awesome! I chomped down on some eggs and a biscuit for breakfast (though still taking it easy on the portion size, just to be safe), then had a grilled cheese and potatoes for lunch. Finally, for dinner I had chicken and rice with some chocolate cake (I had to stop eating the cake because it was SO good, but too much sweet stuff right away was probably not the best thing for new plumbing). The good news was that everything stayed down and I was discharged Friday evening!! 

My first night at home, I did not sleep well and had one more small accident during the night. However, it was so nice to be home and in my own bed. My trips to the bathroom are still pretty frequent and still very liquid, but this should improve as time goes on. This morning (Saturday), I was finally able to take the dressing off of the incision (and shower!). The incision has 8 staples and was covered by an antibacterial dressing during my stay in the hospital. Since this is a "dirty wound" there is a better chance of infection, but things looked OK when I took the dressing off.

For now, I am planning on relaxing and resting at home as much as possible (It's really nasty and cold outside, so this shouldn't be a problem!).

Surgery, Round 2!

Well, I made it through round 2 and am recovering well at home now! My ileostomy reversal was on Wednesday, and I came home today (Friday), which was literally half the time of the first surgery! I'm already feeling pretty good and ready to get recovery mode in full swing. Here's a little recap of the surgery and hospital stay:

The Night Before Surgery:

The day before surgery, I was on a clear, liquid only diet (I cheated a little and ate some apple sauce first thing in the morning... I was STARVING when I woke up!). I drank mostly Powerade throughout the day and luckily made it through school (yes I worked the day before surgery) without too much trouble or a headache. I figured that since I was drinking only liquids, I would be emptying the pouch more often, however, I rarely had to empty all day (just peed a lot!). I guess your body starts processing liquids differently without food?

When I got home from school, I had a fun little surprise in my garage... my water heater went out! Exactly the thing I needed the day before surgery! I spent most of my evening on the phone with plumbers and my parents trying to figure out what to do. Most of the companies wouldn't be able to come out until Wednesday (surgery day), so I was super stressed about what to do. Finally, I had a breakthrough! One of our Middle School Band Director's husband is a plumber for the school system and she basically volunteered him to come out and fix it for me (for about 1/3 the cost the other people wanted to charge me). To make a long story short, he came the next day (surgery day) and fixed the water heater. I am FOREVER in his debt!

In order to prep for surgery, I had to do 2 things. First I had to drink a 10oz bottle of magnesium citrate (a saline laxative). It truly did not taste too bad, however, I don't think I would drink it again if I didn't have to. Only having to drink 10 oz was also AWESOME, compared to the half gallon I've had to drink during colonoscopies and surgery number 1. After things got moving, I did have to empty the bag very frequently, and since I was drinking only colorful liquids, it was quite a show (sorry... TMI right?).

The last thing I had to do was wash with a special antibacterial soap called hibiclens. This is supposed to reduce the number of bacteria on your skin before surgery. Luckily, I still had enough hot water in the water heater to take a warm shower (not so lucky the next morning... I had to wash with the soap again and it was VERY cold!).

Surgery Day

On the day of surgery, I woke up with a rockin' headache (dehydration and no food!) and had to take an ice cold shower to wash with the hibiclens again. My mom came to pick me up and we were out the door at around 9:30 AM (surgery wasn't until noon so my report time was 10:00am). We arrived at the hospital on time and had a very short wait in the the surgery waiting room. They called me back, and as we were walking down the hall toward the pre-op area, I had my first twinge of nervousness. I was ready and excited to be done, but at the same time, it's still surgery and still a little nerve-wracking! I got to my pre-op area and disrobed, putting on the glorious hospital gown and slip-resistant socks. This time, they hooked me up to this machine that blew warm air into the gown to keep me warm. It was AWESOME!

The nurse came in to start my IV and she was hilarious! She tried to get the IV in my hand, but couldn't because the veins were so small from being dehydrated (when she started the fluid, it went under the skin and formed a big bubble... it kinda hurt and is still a little bruised). Next, she started the IV in my forearm and had no trouble getting it in one of the larger veins. After taping it to my arm, I was all set. Another nurse, Sally, came in to ask more questions and finish prepping me for surgery. Sally was the same nurse that I had last time, so it was nice to see a familiar face (this would be a really cool trend that would continue during my stay).

Wheeling me to the OR

My "Party Hat"
Let's do this!

Unfortunately, the OR got a little backed up, so I was a tad late going into surgery. The cool thing is that this time, I remember EVERYTHING about going into the OR. After kissing my mom and sister (and her friend) goodbye, they wheeled me back to OR #11 (I didn't realize there were so many Ors, but I shouldn't be surprised... that hospital is HUGE!). Once in the OR, they introduced everyone again (again, a weird ritual to me!) and had me slide over to the operating table. Since I didn't have the epidural this time, this was a lot easier. They strapped me down with a strap across my thighs, began putting on heart monitors, and started to wrap these plastic cuffs around my legs (for post-op when laying in bed, they squeeze your legs to keep blood flowing). Finally, the anesthesiologist came in and had me breathe in oxygen through a mask. Then, they informed me that I would be out shortly, so I said "Goodbye!" in a weird voice and was OUT!

Next, I woke up in recovery, where I was in a little pain, but nothing compared to last time. I was very groggy and began to respond to the nurses who were asking about my pain and how I was feeling. They gave me ice chips to chew on and let me recover. At one point, they must have been looking over my chart because they were trying to pronounce Primary Sclerosing Cholangitis (my liver disease). In my drugged up, hungover state, somehow I was able to pronounce it for them and even gave a little (painful) chuckle. I was even able to ask how long surgery was (about an hour and 30 minutes). I'm not sure how long I was in recovery, but I don't think it was long. They wheeled me out, where I met up with my entourage. I gave a thumbs up and they were surprised at how alert I already was (especially compared to last time). Finally, I made it to my room, which was actually on the same exact floor I was on last time! After getting me in and settled in bed, the nurses let my family in and recovery was officially underway!

Pre-Op #2

I had my pre-op appointment today at Kennestone Hospital in Marietta (the same place as the first surgery). It was even more uneventful than my first pre-op where I almost had a panic attack in the office with the nurse (Pre-Op #1).

Today was a simple "paperwork-fest" where I filled out what seemed like the same forms twice! These were the typical medical history questions regarding previous surgeries, complications with anesthesia, etc. I also got the bottle of special soap (hibiclens) that I have to use the night before and morning of surgery. My prep for surgery this time is much more simple and hopefully less awful than last time! I am on a clear liquid diet the day before and have to drink a 10 oz bottle of Magnesium Citrate (an over the counter saline laxative). Hopefully, this will not taste like the concoction I had last time (movi prep - yuck!). I also have to take a few antibiotics at specific intervals, which is pretty common for the type of surgery I'm having. 

I am only about 5 days away from surgery now, and have begun to get a little nervous. It is nothing compared to the first surgery, but the nerves have finally surfaced. I think I am mostly afraid of not knowing how quickly I will adapt to using the pouch once I begin recovery. I know the pain will be much less than last time and hopefully I will be in the hospital less than the last time. However, I am unsure of what to expect once I being using the pouch. Will my output be too thin? Will I spend too much time in the bathroom? Will it be painful to use the pouch? Will I have accidents? All of these questions are the cause of my concerns and fears as I approach the big day! 

When I have these concerns though, I think about getting rid of the bag which seems to help me relax a little. Throughout this whole process, I have been really good at always expecting the worst. Most of the time, I have been surprised at how "easy" things have been. I have had few or no complications and have felt pretty good for a while now. I hope this bodes well for the future of my JPouch and my recovery will be complication free!

Depending on how busy I get, my next update may not be until after surgery (next Wednesday, March 20th). In the words of Michael Scott, "Catch you on the Flippity Flip!"

T-Minus 10 days!

I am only 10 days away from surgery and I am getting more and more excited the closer I get! I am ready to be done with surgeries, tests, medical bills, and the ileostomy. I feel like my life has been on pause for about 4 months, and I am ready to move on!

The ileostomy has not been nearly as bad as I thought it would be (especially after the first week when I was regretting the decision to have surgery). If I were to have to return to the ileostomy, I know it would be OK and I would be able to live with it. However, since it is temporary in between surgeries, I am looking forward to getting rid of it! Here are just a few reasons why:

1. The worst thing about my bag is the FART NOISES! My stoma happens to be very noisy, particularly following meals or if I get really hungry. I was gassy before surgery and wasn't sure whether this would remain after my colon was removed. Turns out it didn't matter! The noises are often pretty loud and very embarrassing. I rely on wearing my jacket to help muffle the sound at school... luckily I haven't had any embarrassing moments where my students have heard the noises! There have been times where I am so distracted by the noises that I can't focus on a conversation. This is the biggest thing that I am ready to be done with!

2. My bag blowing up like a balloon: This was way worse at the beginning and has slowly gotten better, but usually at least once or twice a day, my bag will blow up with air. This can be very noticeable, even under my clothing. Typically, I can go "burp" the bag by opening the seal at the top to release the air. However, this usually smells terrible! Occasionally, this happens at night as well. I have had a few nights where my bag was probably as full with air as it could possibly get. There are built in filters on the pouch that I use, but they usually only work on the first day I wear the bag. After that, either stool from the inside or water from the shower do a really nice job of clogging up the filter so that no air can release from the bag.

3. Showering with the pouch causes one problem that I also can't stand! No matter how much I try, I can never get the pouch completely dry after my shower each morning. This leads to a wet spot on my boxers for the rest of the day. Of course, this is not something that is visible, but it really bothers me. A few times, I've mistaken the wet spot for a leak and had a few freakout moments in the bathroom at school.

4. The pouch can be time consuming! On weekdays, when I change the pouch, I typically wake up about 30 minutes early (5:30am) to ensure that I have time to shower and change the pouch. In the grand scheme of things, that 30 minutes is fairly minor, but if you know me, you know that I treasure my sleep time! :) 30 minutes in the morning can have a huge effect on the rest of my day! Maybe I'm just being a baby, but I don't care... This is my "whining" list! :)

5. Other things I don't like about the bag: The bag is made of plastic, so naturally it makes some noise when I move around. In quiet situations, this can be a little embarrassing as it sometimes sounds like I'm wearing a diaper! Also, the bag typically has a very slim profile, but when I wear a single t-shirt, it is much easier to see. Now that temperatures are getting warmer, I plan on wearing t-shirts more often (on the weekends and such). This will be one thing I'm glad to get rid of as the weather gets nicer! Finally, since surgery, I have had to wear my pants much lower on my waist than before surgery (even after having lost about 10lbs!) in order to avoid squishing the stoma. I am looking forward to tightening my belt back to normal and wearing my pants/shorts how I used to!

I want to reiterate that this list does not mean that I hate my stoma! It has truly been very good to me and I have had very few issues. I still have never had a leak and other than a few blockage scares, things have been very good and I can usually eat just about anything I want. As I've said before, if I ever have to go back to the ileostomy, I know things will be fine. That being said, I am still ready to get rid of it next week!

What Have I Gotten Myself Into?!

I'm only about 2.5 weeks out from surgery No. 2 and I am getting more excited about it every day! Can't wait to get rid of the pouch and get back to a normal life!

This was a pretty good week back to school. We had a concert on Tuesday night and I had to teach by myself Thursday and Friday, so it was a pretty long week. But I actually enjoyed most of the week. The concerts went much better than expected, especially after a full week break! Also, teaching by myself wasn't too bad either. I enjoyed it most of the time :) Also, my pain comes and goes based on how active I am but responds pretty well to Advil.

My doctor's office called on Wednesday and said that my spleen was enlarged (duh... I'm pretty sure I already knew that!), but they weren't able to tell how large it was or what was causing it. So, they asked me to bring the disc to them so that my doctor can get a look at it and try to figure out what's going on. The pain is manageable and not as intense as last week, so that makes it a little easier to keep waiting for a response or a solution.

The other exciting thing that happened this week is that I decided to join CCFA's Team Challenge. The Crohn's and Colitis Foundation of America seeks to find a cure for UC and Crohn's so that others will not have to suffer through these debilitating illnesses. Team Challenge is an endurance training program where participants pledge to raise a certain amount of money to run a Half-Marathon. There are events in Napa, California, Virginia Wine Country, Kona, Hawaii, and Chicago! I am going to be participating in the All State Chicago 13.1 Half Marathon on June 8th, 2013.

Wednesday of this week, I went to an info meeting at the CCFA headquarters in Atlanta and ended up signing up on the spot. I told them I was hesitant since I had surgery in November and have surgery again on the 20th. They were all so supportive and encouraged me not to worry about it. They keep reinforcing the fact that they will make sure I finish..."The distance is the same whether you walk or run." This low pressure attitude is awesome and I am truly excited to be a part of Team Georgia!

This morning, we actually had the first training run in Atlanta. It was FREEZING and actually SNOWING during the whole run (really just flurries, but it's all we've gotten this winter!). I wasn't sure how my body would respond to running, but things felt much better than expected. The cold was the most bothersome part! We finished a 2 mile run/walk and boy did it feel good! I met a lot of awesome people that somehow have a connection to Crohn's or Colitis. My mentor Nick has Crohn's and had a surgery similar to mine (not quite as extensive, but still similar). Also, one of the women that I ran with, Megan, works for Abbot and sells Humira, an IV based UC drug. It's really cool to hear the connection people have to the disease and why they are choosing to run. Everyone is also very open about their illness which makes talking about it so much easier.

In order to make it to Chicago, I not only have to train to run, but I also have pledged to raise $3,700 for the CCFA. Please visit my fundraising to learn a little bit more about CCFA and Team Challenge and to donate. I'm asking donors to give at least $13 ($1 for each mile I will run!) or more if possible! Every little bit helps us get closer to a cure and closer to Chicago! http://www.active.com/donate/chicagoGA13/GA13CHIWBrooks