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

A Bump in the Road

     Last week, I had a little hiccup on my road to recovery. I had some dull pain just under my ribcage on my left side. I ignored it for a week or so, brushing it off as a sore muscle. Having sore muscles has been a common feeling since surgery. As I increased my activity level, I would have sore spots in my abs, almost as if I had done crunches or sit-ups. They usually passed with time, so I was easily able to ignore this pain. However, this time, the pain did not get better.

     I was actually off of work this entire week (President's day long weekend plus furlough days) and was able to finally sit and relax after two VERY LONG weeks at school! However, my body had some different plans! I started getting a small head cold (either from allergies or just a cold) and the pain started to intensify. On Tuesday of this week, the pain was so intense that I considered going to the ER (if you know me, I'm not dramatic... it really hurt!). I called my GI to try to get an appointment, but didn't hear back from them by the end of the day. I was able to tough it out and made it through the night (albeit with little sleep). Wednesday morning, I called my PCP to try to get an appointment, but they had no openings. Finally, I decided to go to an urgent care center to make sure I wasn't dying! On the way, my GI's office called and told me they had an appointment Thursday morning. I told them that I was on my way to urgent care, so they asked me to follow up and send any bloodwork that they did over the my GI's office. I decided to keep the appointment with my GI and continue on to the urgent care as well. 

     The urgent care doctor came to the conclusion that my spleen is enlarged and that is what is causing the pain. He drew blood and did a CBC (complete blood count?) to rule out any sort of infection. The CBC came back normal, so he told me to take some pain medication and follow up with the GI in the morning. They also told me that if I started getting a fever, chills, or the pain got unbearable, that I should go to the ER. However, he didn't seem worried about that.

    Thursday morning I went to my GI (who squeezed me in between colonoscopies - this is the 2nd time he's done this in the last year... I really like him!) who also felt that my spleen was enlarged. He agreed that the bloodwork looked OK and decided to set me up with a CT scan for Friday morning to try to find out why the spleen is enlarged. He also mentioned that I could possibly have kidney stones, but I don't think the pain is that intense or in the right location. 

      The CT scan was an interesting experience. I had to go the day before to pick up some oral contrast to drink. They gave me to bottles of barium contrast. I was supposed to drink one at 10pm the night before and the other one the next morning on my way to the office. However, I asked the radiologist about drinking both since I have an ileostomy. She said that it was unnecessary, since my transit time is so much quicker than someone with a colon (suckers!). So, I only had to drink one bottle of the contrast on my way to the appointment :) It was not very pleasant, but not quite as bad as the prep I have had to drink before my colonoscopies. Yuck!

    At the office, they had me change into scrubs and started an IV. Then they took a quick X-ray in the CT machine. The actual scans took no time at all. I have had 2 MRIs and those each took around 45 minutes to an hour. The CT probably took only 30 seconds total to take all the pictures. The whole process took around 20 minutes top! Pretty amazing how quickly they can conduct these tests!

     The weirdest part of the whole thing was the IV contrast. They took one scan without the contrast, then inject the contrast and take another scan. When the contrast enters your body, it gives you a very overwhelming warm feeling. I read somewhere that it feels like you drank a hot cup of coffee in one gulp. This was pretty accurate. Also, the radiologist warned me that it might feel like I'm urinating once the contrast is injected (strange right!), but I didn't really feel this. 

    The coolest part about the scan is that the radiologist gave me a CD of my scan. She will write a report and send to my doctor with the results, but she gave me the scans in case my GI or surgeon want to see them. Also, I can look at them at home, which is so fascinating to me! 

Here is a video of the scan. I was lying on my back so the bottom is my back and the top is my chest. Also, my right side is on the left and my left side is on the right. It starts around the bottom of my lungs (the black things) and the base of my heart, then progresses down my abdomen toward my pelvis. You can also see my ileostomy around 00:16. Pretty cool, huh!

Here is another view that goes from the base of the table up through my body (from back to front) at a different angle. It's not quite as clear, but still really cool!

Bag Change Pictures (graphic images!)

I decided that I wanted to record an account of me changing my bag at least once before I get rid of it! I figured it could be a good memory for me (yeah right!) and a possible help to anyone who is going through the same surgery. While I was preparing for surgery, watching these videos really helped me know what to expect, what questions to ask, and helped desensitize me to the "ick-factor" involved with an ileostomy. By the time surgery came around, I had watched just about every ostomy video available on the internet and felt relatively prepared to tackle my own ileostomy.
The video that I took ended up not being great quality. The sound is very hard to hear since my bathroom fan was running and I was talking very quietly (first thing in the morning with a cold!). So, instead of posting the video, I extracted some stills that will hopefully show the process a little better. At some point, I may try to record again with better video/audio quality. Seeing video is much better than pictures! I also edited out any "output" from the shots, but you can see my stoma through most of the video. If you are squeamish and don't wish to see it, then don't scroll down :)

Before starting the bag change, I typically gather all my supplies on my counter in my bathroom (see previous bag change post). Occasionally, I don't have everything I need which results in a trip across the hall with my stoma hanging out!

First, I place a plastic grocery bag in my pants to both catch any output from my stoma (occasionally happens) and to use as a trash bag while changing the pouch.

Next I check my bag and skin barrier to make sure they fit together correctly. I use Hollister bags with the "Lock 'n Roll" closure. I have found that there is a small bit of extra material on the end of the pouch closure tail. I usually take a pair of scissors and carefully remove the extra flap. This helps make emptying the bag much easier and much cleaner!

Next, I close the bag and make sure that the bag and the skin barrier attach together correctly. I've never had one that didn't fit, but I always make sure!

Then, I take some small curved scissors and cut out the opening where my stoma will go in the skin barrier. I cut just outside the 1 inch line and this fits my stoma very nicely. After I cut the hole for the stoma, I typically take my index finger and rub it on the inside of the hole I just cut. The warmth from my hand does a nice job in smoothing out the cut surface and gets rid of any rough edges.

Once I cut out the opening, I begin the process of taking the pouch off. I start by pulling up the tape border on the very edge of the skin barrier. Once this is done, I peel the entire barrier off from top to bottom.

Next up, I use 4X4 Gauze that I've wet with warm water to clean off any output on my stoma and the surrounding skin. I also do my best to get any left over adhesive off using the gauze

TA DA! Here's Johnny!

After cleaning the stoma and skin, I usually check the fit of my skin barrier around the stoma. This used to be more important when my stoma was still changing size. However, it has stayed the same size for a few weeks, so now I'm fairly certain it will fit on the first try.

Next, I spend a good bit of time shaving the area around my stoma. I usually start with a regular razor, then use electric clippers to get closer to the stoma (sometimes I even use tweasers to get any stray hairs). My belly is VERY hairy, so if I didn't shave, there would be no chance for the skin barrier to adhere to my skin.

Once my skin is shaved and clean, I prepare the skin barrier (some people call it a wafer as well). I remove the plastic backing and pipe out a ring of paste around the opening in the skin barrier. This is not really paste, but is like caulking that helps fill in any gaps in your skin near the stoma. This way, there is no leakage of output onto my skin. 

After there is a nice "bead of caulk," I usually wet my finger with water and mold the paste around to flatten it out and fix and spots that were messed up. It is normally VERY sticky, but the water helps make sure it doesn't stick to my fingers. If one side ends up being thicker than the other, that is usually the side that ends up on the bottom side of my stoma, since that is the most likely place to have a leak.

Next, I set the skin barrier aside so the paste can set for a few minutes. While it is drying, I prepare the skin around my stoma. I use stoma powder layered with a skin prep wipe. The stoma powder removes any moisture from "weepy" or raw skin and the skin prep creates a film over my skin to reduce irritation from the adhesive or any output that may leak. I usually do two layers of each (powder, wipe, powder, wipe) always making sure to get rid of extra powder and making sure the skin prep has dried before moving on. 

Next, it is time to put on the skin barrier. If my stoma is not very active, I usually do the next few steps all in a row. I place the skin barrier over my stoma, remove the paper backing from the edges of the barrier, and then put the bag on. 

Always press around the inside of the plastic flange ring
to make sure you have a good seal.

Removing the paper backing.

While putting my bag on I usually fold it in half while pressing the flanges together. This is to make sure that no output, stoma powder, paste, or skin barrier gets on the bag. If any of this drips onto the grocery bag, there is potential for this to get on the pouch while clicking it into place. I avoid this by folding it in half and then clicking it into place. 

Lastly, I place my hands over the stoma and new skin barrier to activate the adhesive and make sure there is a good seal. The heat from my hands helps the adhesive stick better and results in a much better seal. I usually only do this for about 30 seconds or so. 

After this, I collect any remaining trash, tie up the grocery bag, and take it out to the trash can (outdoor trashcan!). All together, this all takes about 20-25 minutes for me. I am a perfectionist and I have had good luck with all my pouch changes. I've never had a true leak or "blowout" since surgery (I've had minor leaks just around the stoma, but not bad enough to change the pouch). All of my bag changes have been scheduled and I attribute this to my perfectionist approach to bag changes!

Please let me know if you have any questions about my bag change. I would be more than happy to help!

Say Cheese :)

     Yesterday I went down to Wellstar to have my "pouchogram" at an imaging center near the hospital. This is basically a way to check the integrity of my J-Pouch and ensure that it is safe to proceed with the second surgery in March.

     Upon, getting to the clinic, I filled out the normal paperwork and made sure to mention that I DON'T HAVE A COLON! This is important in a procedure like this, because they have to tailor the procedure to make sure they don't hurt you or damage the pouch. First, they took a few normal x-rays without the barium. I explained my surgery and the fact that I don't have a colon to the x-ray techs and they seemed genuinely interested and wanted to make sure they did things right. 

 Fluoroscopy Machine

    Next, they took me back to a different room. This had a slightly bigger machine with a table. I think this is either called a fluoroscopy machine or dynamic x-ray. It is basically a moving x-ray as opposed to just one single picture. It uses x-rays to get several images very quickly at different angles and positions. One of the techs was filling up a LARGE bag with warm tap water. He pointed to several bottles of the contrast sitting on the counter. The contrast was actually clear! I was thankful for this since I was expecting the nasty, thick, white barium that I have had before (I had to drink it though... not pleasant either way it enters your body, I'm sure!). Also, the techs comforted me saying that they were using much less than they typically would on someone with a colon (suckers!). Also, they used the smallest catheter tip that they had. The techs were VERY nice and responsive. I kept reminding them that I didn't  have a colon, and instead of ignoring this (like I'm sure some medical professionals might do), they listened and made sure they were doing things correctly based on my specific circumstances. Kudos to that crew! It made the whole process a little easier! 

    After getting into a couple of robes and sliding up onto the (hard) table, they inserted the catheter and began to infuse the contrast into my pouch. It was a little painful when they first inserted the catheter and once the contrast began to flow. It felt like my pouch had small spasms when the liquid entered and this was a little uncomfortable. Once enough contrast was in, they made me roll onto my sides and roll around in some very uncomfortable positions (all of this while one of the techs was holding the catheter in my butt... poor guy!). Finally, they removed the catheter and asked me to hold in the contrast. This is the part I was the most worried about! I wasn't sure if I was going to be able to, since I originally did not know how much liquid they would use. Luckily, I had no issues holding it and after a few more pictures, they let me use the restroom to get rid of the contrast. Then, they took a few more x-rays to see how well I got rid of the contrast. 

     Finally, I got dressed and was on my way! Overall, the procedure was not terrible. Certainly not a picnic, but much less terrible than I had pictured it in my head! I tend to create these horrible scenarios in my head. Perhaps, it's because I always look stuff up on the internet. It seems that most of the time, people only post their experiences on the internet when they have BAD experiences. Hopefully, my posts will be refreshing to those who may be going through the same thing and are looking for reassurance. So far, I've had no complications (**knock on wood**) and love sharing my stories!