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

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!

10 Week Follow Up - Appointment with Surgeon

     Today I had my 10 week follow up with Dr. Liberman in Marietta. The purpose of this check-up was to make sure that things are going well (which they are!), do an exam of the anastomosis site (where the pouch is attached to the "rectal cuff"), and to discuss and schedule surgery, round 2.

     Dr. L asked how things were going and to be truthful, I feel pretty good. I've been back at work since Christmas Break for about a week and I feel great! There are actually days where I have left school and thought to myself, "Wow! I don't feel like I got hit by a truck today!" Certainly a good feeling! 

     After discussing how things are going, Dr. L performs an "exam". This involved me rolling to side and bringing my knees to my chest, and... well, you probably know what came next. Not pleasant at all! After shoving his finger in my ass, Dr. L says something to the effect of, "Yep... if you don't use it, you lose it!" Not exactly what you want to hear during an "exam" like this! He then proceeds to manually stretch my pouch from the inside. This might be one of the most painful things I've felt during this whole process! I couldn't help but let out a few audible groans to hopefully let him know that I was in pain! It probably lasted no more than 30 seconds, but it was awful and felt like so much longer. I guess the size of the pouch can shrink during the healing phase. I am assuming that this will get better once there is "output" through the pouch. After cleaning me up, he sat me back up and it was time to discuss surgery dates.

     I had hoped that I would be able to wait until school gets out (end of May) to do surgery 2, but Dr. L said I had to have it sooner. He wanted to do it in February, but I told him with my school schedule, this would not work. We finally compromised and settled on mid March as an ideal time. March 20th to be exact! I asked him why I couldn't wait longer, and he basically said that the longer you wait, the harder the recovery/adaptation process is. I guess this makes sense. I'll also be out for only 2-3 weeks this time, so I figure I won't miss too much school again.

    Also, today I set up an appointment to have a "pouchogram" done at the end of the month. I'm not sure exactly what the official name for the procedure is, but I've heard others call it a "pouchogram", so that 's what I'm going to call it! This is basically where they will give me a barium enema and take x-rays to make sure that the pouch is healing properly and there are no leaks. Once this is done, I'll get the official OK to proceed with the second surgery. 

     After leaving the appointment, the pain from the exam lingered for the rest of the day. I passed a little blood and mucus this evening, but they told me to expect that.

     I will update again after my "pouchogram". Until then, I finally get to focus on school for a little while and not worry about my health! 

8 Week Update - Happy New Year!

Since I haven't updated since the end of December, Merry Christmas and Happy New Year! As of Wednesday of this week, I was 8 weeks post-surgery and I am feeling GREAT! I had the realization last week while running some errands that I no longer have much abdominal pain. Until now, getting in and out of my car always gave me a reminder that I was still healing, but finally, this little reminder is gone! Being on a two week break after working for 2 weeks has been very good for my body and I am glad that I finally feel mostly back to normal. Here are few updates on how things are going:

Bag Changes:

Changing the bag is still going OK. After trying out 2 new skin barriers, I have discovered that I still like using the Cut-to-Fit skin barriers (Hollister #14603) with tape border. I tried a pre-cut barrier that I think ended up being a little too big. I still cut my barriers at 1 1/4", but it usually is just a little smaller than the pre-cut barrier. This gives me a better seal and more security in the skin barrier. I also tried a skin barrier without the border tape and I eventually decided that I wasn't a fan. While it was more flexible than I thought it would be, it still did not allow enough flexibility to survive moving around for 4 or 5 days. I eventually got nervous about it leaking and had to change it.

Also, my bag change times have not gotten much faster. I attribute this to two things. First, I am a perfectionist, so I have to make sure that everything is clean, dry, and properly prepped before I can put on the wafer. I think this has made a difference as I have still yet to have a true leak (knock on wood!). The other reason it takes me so long is because my abdomen is very hairy. A lot of the time I spend while changing the bag is devoted to shaving the hair around my stoma site. I even have to resort to using tweezers to get rid of hair right up next to the stoma. Again, it is a little bit of a process, but I think it gives me longer wear time on my skin barriers. I changed my bag this morning and it took me about 25 minutes. The bag that I took off had been on since Sunday morning for a grand total of 5 days with no leaks and no fear that the bag would leak!

I also recently tried using a barrier ring instead of stoma paste (just to try it... it seems easier to use than the paste, which can be a little messy). Unfortunately, I did not like the ring. I don't think it gave me a good enough seal and I had some very irritated skin right next to the stoma (I guess it's possible that I may have been allergic to the ring, but most likely not... I'm not allergic to anything!). The paste, while messy to apply, definitely gives me a much better seal and causes no skin irritation.

After trying some of these new products, I did have some issues with irritated skin right around my stoma. It was very red, bled much more easily than normal, and had a stinging/burning feeling while changing and wearing the pouch. After switching back to my stoma paste and normal wafers and using a technique that my stoma nurse taught me, I have been able to keep it under control and begin the healing process. The technique I used is called "crusting" and involves layering stoma powder and skin barrier prep. After cleaning, shaving, and dying the skin, I use stoma powder on the wet, weepy areas right around my stoma. After brushing the extra powder off, I apply a layer of skin barrier prep (I use the 3M Cavilon No-Sting Barrier Wipes... No-Sting is an absolute must!) right next to the stoma, then all around the area where the skin wafer will sit. After allowing the barrier to dry, I repeat the same process which effectively creates a double layer of protection. I have noticed that doing this for the last few changes has cut down on the burning/stinging sensation and the skin looks less irritated during bag changes.

Ostomy Supplies


After trying out a few new supplies, I ultimately decided that I like the supplies I originally ordered and set-up a reorder of supplies. Since I met my deductible and out-of-pocket maximum for the year, I knew I wanted to order as many supplies as my insurance would allow (since I would not owe anything out of pocket). Luckily, my insurance allows a 3 month supply to be ordered, so this is what I did! It was like Christmas for ostomy supplies!! Somehow, it is strange that I was so excited about this (but these supplies are worth around $1000 without insurance help, so if I can get them for "free", I'm happy!). So, now I have enough supplies to hopefully last through my next surgery (depending on the date, of course).

60 Bags and Wafers, 6 Tubes of Stoma Paste,
3 Boxes of Barrier Wipes, and 3 Bottles of Stoma Powder...
Yahtzee!!

Food

Since the last update, I haven't had any major food breakthroughs. I ate pretty normally at Christmas dinner(s) and enjoyed every bite. On New Years Day, I did try a couple new food items and seemed to have no problems. In the South, it is traditional to eat collard greens and black eyed peas for good luck and money! I couldn't resist not trying this out on New Years, so my mom cooked a meatloaf, some cornbread, and mashed potatoes to accompany the veggies. My new pipes handled the peas and collards beautifully (Both were canned, which I think helped. Plus, they were just as good as fresh in my opinion!). This gave me a little bit of confidence and I plan to start slowly adding some foods I haven't been able to eat back into my diet now that I'm 8 weeks post-op.


I go back to see Dr. Liberman in a couple weeks for a check-up and to possibly discuss the date for surgery #2, so until then, Happy New Year!