The Changing of the Bag

Today, I changed my bag at home for the first time. I've had the home health nurse change the bag once and the ostomy nurse at the hospital changed it on Monday of this week. This, however, was the first time that I did all the steps by myself. I did have a home health nurse here to help in case I needed it, but I was basically able to do it all on my own. Here's what a bag change entails (in my case at least):

My pouch changing supplies
(From left to right) Hollister Wafer, 3M Barrier Wipe, Hollister Pouch
Stoma Paste, Stoma Powder, Scissors

First, I collected all my materials and place them on my bathroom counter. Today, I tried something that I found on YouTube... While changing the bag, I placed a grocery bag in my pants to act not only as a trash bag for all the trash, but also it was there in case things started happening (I hadn't eaten yet, but there was still a very small amount of "output"). I found this worked very well and will continue to use the grocery bag as I go on.

Next, I removed the old bag. This requires slowly peeling the tape border of the wafer away from my skin. Then, the inner layer of adhesive is removed from the top down to the bottom. Once the adhesive is off, the bag can be thrown away (in my trusty grocery bag) and my stoma is free! I assessed my stoma (still nice and red) and the skin around the stoma (peristomal skin if you want the technical term). My skin was a little red, but I think it was mostly because the adhesive tugged at my skin as I removed it. There are still two spots where the rod holding the ileostomy in place were sutured. One is healing nicely since it is located further from the stoma and can breathe a little bit through the tape border of the wafer. The other spot is not healing quite as nicely since it is located closer to the stoma where the adhesive is stronger and not breathable (I may have to have the stoma nurses look at this if it doesn't look better next time... not sure what the solution might be). After cleaning off the stoma and wiping the  peristomal skin clean with a wet rag, I applied a little bit of stoma powder to these two spots. This powder is supposed to absorb moisture and help them heal. After applying the powder, I wiped off the extra and then dabbed each spot with no-sting barrier wipes. These wipes are alcohol free and provide a barrier to protect the skin from the adhesive. After allowing this to dry, it was time to apply the new wafer and pouch.

I had already measured my stoma and cut the opening in the wafer to fit around my stoma. My stoma is about 1 1/4" around (which is about the same as it has been each time I've changed the bag). After measuring and cutting, I then applied "stoma paste" to the back of the wafer at the edge of the hole I cut out. This "paste" is not really an adhesive, but more like caulking that provides extra protection from leaks... it basically helps make sure that none of my stool seeps out onto my skin.

Finally, the last few steps are easy. I place the wafer around my stoma, ensure a good seal with the stoma paste, then press down to make sure the adhesive seals well. Then, I clip the actual bag in place using the tupperware-like seal (it snaps twice so that I know it's locked in place). Finally, I remove the backing from the tape border and adhere the border to my skin. After cleaning up my supplies and trash, I then use my hand placed over the new wafer to provide body heat that helps activate the adhesive and ensures a really good seal.

This may seem like a lot, but it only took about 15 minutes. I have been assured that I will get better as I do this more often and it will take less time as I get more practice. Overall, I was a little nervous about changing the bag myself, but it really was too bad. I certainly gained a little bit of confidence doing this on my own for the first time. One thing that the nurse recommended is using 4X4 gauze to wipe and clean the stoma. I have been using some cheap white rags that my mom bought after surgery. The idea is that I can wash them with bleach and always have some rags handy. Plus, the stoma nurses in the hospital used rags, so it was what seemed comfortable to us right after surgery. However, I think I may take the nurses advice. It seems a little easier to use the gauze instead of having to worry about the hassle of washing the rags every so often.

Two Weeks Post-Op

Today is exactly two weeks post-op, and I am honestly feeling pretty good. I'm certainly not back to 100%, but I'm much closer than the first day I came home from the hospital. I was very discouraged when I first got home. I was having to empty my pouch VERY often (especially at night), had almost no appetite, was not sleeping well, and felt pretty miserable in general. However, after a full week at home and a little more rest, I'm happy to report that things are starting to look a lot better. My appetite is back in full swing, I am mostly sleeping through the night, and the pouch emptying has become less of a hassle. It is still no picnic, but I think about it much less every day and am less paranoid about it at night.

I had two appointments on Monday of this week. The first was with the ostomy nurses at the hospital. I really needed my pouch changed since the home health nurse didn't do the best job of changing the last one. I never got a great seal and was a little paranoid about having a leak. Luckily, it lasted until I could get to the appointment Monday morning. At this appointment, she removed the old bag and then removed the rod that inserted in order to hold the ileostomy in place above the skin. Because I have a loop ileostomy, the surgeon placed this rod to ensure the loop didn't fall back into my abdomen before the skin and muscle had a chance to heal around the stoma. The rod was bothersome for two reasons: First, because it was held in place with a few sutures, it was painful. Second, it made it very difficult to get the pouch to seal as well as it should. Luckily, with this rod removed, both of these hindrances have been removed as well! The nurse cleaned around my skin and shaved a little bit of hair to ensure a good seal. I asked her to try a different brand of pouch (Hollister instead of Coloplast) and I am very happy with the change. The Coloplast "wafers" are very large and fairly rigid, making it really hard for me to get a good seal. My stoma is close enough to my incision that the Coloplast wafer overlaps the incision, which almost guarantees there will not be a good seal. The Hollister wafer, on the other hand, is a little smaller and much more flexible. It has given me a really good seal so far, and seems to be much more flexible than the Coloplast wafer. Also, the new pouch is opaque instead of transparent. At first, it was weird since I was used to looking at how things were working. Now, I just have to rely on feeling the pouch and there is a nice little surprise every time I empty the pouch (sorry, that may be a little gross...).  I'm a little anxious about my first solo bag change which will probably happen on Friday or Saturday of this week. I feel much more comfortable with the thought of changing after watching the nurses do it several times, so we'll just see how things go!

The other appointment I had on Monday was with the surgeon. My hope was that he wanted to remove the staples, and I was right! The staples had become annoying and almost more painful than anything I felt at the hospital. Every time I moved, I could feel them tugging and, on occasion, they would actually bleed a little bit. At first, his nurse came in and removed every other staple and said that I would probably have to come back in a week to get the rest out. When the surgeon finally came in, he looked at my incision and was happy enough with the way I was healing, so he took out the rest of them! He then put some tape across the incision for added protection and said they would probably fall off in a few days. He was very pleased with the way surgery went and how I am recovering, so he doesn't need to see me until January (of course barring any complications in the meantime). At that point, he mentioned that he'll do an exam to make sure everything is healing well and we will discuss the second surgery.

The timing of the second surgery could prove to be very tricky. He originally said he wanted to do the surgeries three months apart. This would put surgery 2 in the middle of February. Unfortunately, February happens to be the time of the school year where we are rigorously preparing for the annual LGPE (Large Group Performance Evaluation - essentially concert band exams). This is a very important event for us and is also very stressful. I can't imagine going through surgery during this time since it would knock me out of school again. Plus, I don't want to leave my coworker alone for this stressful time.

I would prefer to wait until May (at the earliest) to have the second surgery. We have our final band concert of the year at the end of April since the month of May turns into a mess where we hardly see our students (at least not on a consistent basis) because of EOCTs, AP Exams, and crazy final exam schedules. This has always been my least favorite time of the year because the kids don't want to do anything, but they have to be there. I feel like a glorified babysitter for the last few weeks of school and it is pretty miserable. This would be the perfect time for surgery #2 since it is low stress and minimal work. My absence would be felt much less during this time than during February.

My fear, however, is that my Doctor is not going to let me wait until May to complete the ileostomy "takedown". I asked him before surgery how long was too long to wait for the takedown and he said he usually likes to do it within 4 or 5 months (at the latest). This would put surgery #2 at the beginning of April unless he is willing to wait any longer. I know my coworker and principal will tell me to do whatever I need to do, but it still makes for a tough decision when I am potentially going to be about 3-4 weeks... again. The second surgery is much less intense than the first, so the likelihood that I'll be out for 6 whole weeks is very slight. If all goes well, it may only take 2 or 3 weeks to rebound. It really is a guessing game and I may not have much of a choice depending on what Dr. Liberman wants to do!

I am slowly increasing my activity and exposure to the real world. Monday, after my two appointments, I was exhausted and slept very well! Tuesday, my coworker and some students and a band parent came by to drop off some gifts and cards from the band. I knew they were doing something (I got a group email from one of the moms who forgot to remove me from the list :) ), but was totally surprised and blown away at what they got me... an iPad Mini! Definitely a nice little get well gift/early Christmas present and much more than I was expecting! After their visit, I actually DROVE to the bank and the grocery store to pick up a few things, and then quickly came back home to take a percocet. I was completely wiped from running just a few errands! Another reminder that I just had MAJOR surgery only 2 weeks ago. Hopefully, time will continue to make me stronger and stronger.

Today, I am headed to the other side of town for Thanksgiving. I'm a little nervous about the drive (an hour across town on the busiest travel day of the year), but I will just take things very easy to make sure I arrive safely! I can't wait for Thanksgiving, especially now that my appetite is back in full force. All the "carby" and starchy foods that I'm allowed to eat are always my favorites during holiday meals! Until next time, Happy Thanksgiving!

Hospital Stay

If you've never stayed in the hospital, just thank God and pray that you never have to! In all reality, it wasn't THAT bad, but a hospital is definitely not a place that I'd like to visit again (until surgery #2). I was at Wellstar Kennestone Hospital, in Marietta, GA and it really is a great hospital. The nurses, staff, and doctors are all very good at what they do and made me feel comfortable every step of the way. Here's what I remember about my hospital stay (sorry its a little long!):

After spending some time in the recovery room, I was wheeled up to my semi-private room. Yes, you read that right. Semi-private. I had a roomie! Unfortunately, it was not as exciting as it sounds. Once we got in the room and settled in, my mom and sister realized very quickly that there would be no room for them to sleep, much less sit down to visit. I was on the far end of the room, away from the door, so this provided at least a little bit more privacy. I was not able to eat or drink anything immediately after surgery (NPO) but I did have a sponge in some ice water that I could use to wet my mouth and lips. I really don't remember a whole lot that happened that night, but I do remember the nurses convincing my mom and sister to go home and sleep at my house. They assured mom that I would be fine and got her cell phone number in case anything happened. They left relatively early (8:00 maybe?) and I was left to get some rest... an impossibility in hospital land!

This first night was a little rough. Not only did they have to check on me every couple of hours and give me medicine (anti-nausea medicine, pepcid, steriods, heparin shots, etc), but they also had to check my epidural line. This required a very labored and painful roll onto my side so that the nurse could ensure the epidural was still in place and not leaking. My nurse that first night (and I think the next night too) was an ANGEL! Her name was Angie and she was very quiet and comforting when waking me up in the middle of the night to do all this prodding and poking. She is definitely very good at her job and meant to be a nurse! Sometime in the middle of the night, my roomie got some blood pressure meds that apparently made him feel very weird (I know this because he was screaming out for the nurses - he was hard of hearing, so he couldn't hear them respond to him on the PA). They ended up coming in to evaluate him and then took him for a CT Scan and finally brought him back up about 30 minutes later. Then, it was my turn to have some fun. For some reason, I got very anxious that my JP drain was very full (this drain is a small tube going directly into my abdomen to remove excess fluid and blood from surgery - it has a small rubber "hand grenade" on the outside that is squeezed to create a vacuum which helps the fluid come out). The nurses emptied the drain, and then it began to drain very quickly with what looked like fresh blood. The nurses seemed concerned, which of course made me more anxious. They mentioned that there could be an "active bleed" which was, I think, what pushed me over the edge. My heart was RACING and I felt a small palpitation every so often. Some sort of alarm started going off that alerted them to my heart rate being incredibly high, so a different nurse came to check on me. She was very gentle and kind and was able to talk me down to a comfortable heart rate and assured me that there was nothing wrong. After this, I was able to get some "rest" and got through the first night OK.

Sitting in a chair after
a walk. Clearly a little
uncomfortable!

The next few days were fairly typical hospital days. Dad came to see me on Thursday and I was able to get up and walk for the first time. This was a very uncomfortable experience since I was still very sore from surgery. I felt like an old man (especially since I couldn't stand up totally straight) pushing my IV cart around the hallway. I think I only did one lap the first time, but it felt like I ran a marathon! I was worn out. I didn't realize I was going to be THAT weak right off the bat. Also, on  I finally got a private room! It was so nice to not have to worry about my roomie. Plus, there was a "bed" where my mom would be able to spend the nights.

Eating "liquids" the
day after surgery.

I had some awesome visitors while in the hospital. I didn't expectany of my friends to drive to this side of town, but my friend Irby came by to visit. Also, Miguel and Allison came by for a little and Dana and Catherine came as well (with goodies). I felt a little bad that I was out of it while they were visiting, but my mom kept them company when I was zoned out (I think I had Percocet at this point :) ). Also, my dad brought my step-mom and half-brother one afternoon and my sister and nephew came by as well. It was really nice of everyone who came by, even for just a little bit. It's nice to know I have so many caring friends and family members.

My stoma the day after
surgery. Very swollen
with black/yellow bile. 

The most "exciting" thing that happened during my stay happened in the wee hours of Saturday morning (late Friday night). The nurse decided to let me sleep instead of waking me up to empty my pouch. Unfortunately, this was a terrible idea since it ended up getting WAY too full and started to leak. When I asked the nurse to empty the pouch around 4AM, it was so full that as soon as she pulled on it, the whole bag separated from the "wafer" (the part of the pouch that attaches to the skin) and there was poop everywhere! I use the word poop loosely, since at this point I was only eating liquids. As you can imagine, there was quite a mess. I had to get up and was bathed by one of the orderlies (definitely a humbling experience) and had to get new sheets and bedding. On top of this, we also had to put a new pouch on after having only learned the day before how to do it. It was quite an ordeal since neither mom or myself were thinking straight at this hour of the morning. We managed to get the pouch on correctly and it stayed on until the Ostomy nurse came back on Monday. She approved of our pouch patch job!

The only other exciting things that happened were the removal of tubes - both the JP Drain and the Catheter. The JP drain hurt like hell coming out. My surgeon basically just pulled and pulled. I didn't look, but my mom said it was much longer and deeper that she realized. The catheter being removed also hurt pretty bad and made it feel like I had to pee for a while, even though my bladder was empty. Also, it was exciting when they advanced my diet. I first started with all liquids - lots of Jello, juice, icees, and such. Then I went to soft foods, like bagels, eggs, applesauce, etc. Finally, I was moved to full solids but they had to be fully cooked. Overall, the hospital food was not great. It seemed like everything had this one particular taste (can't pinpoint what it tastes like exactly) that was very hard for me to stomach. My appetite in the hospital was not great either, so I usually didn't eat much of anything.

Going home!!

I was discharged on Monday, November 12th around lunch time, and endured a bumpy ride home just long enough to be painful and uncomfortable. However, finally plopping down on my own couch felt SO good! Now, the real recovery could begin!

Surgery Day Experience

So, at this point, surgery day has come and gone (thankfully!) and I have still not updated. I was planning to update while in the hospital and document my progress, but the surgery kicked my butt a little more than I was expecting. So, here is what I remember about my surgery and my hospital stay:

Surgery Morning:

My mom and sister drove me to the hospital after my mom read a very sweet prayer that one of her work friends wrote for me. We all had a little breakdown (my only one in front of other people!) but were able to be pretty calm the rest of the day. We stopped to get breakfast for my mom and sister, which was a little torturous for me, but I guess necessary for them.

We arrived at the hospital, checked in, and waited only a little bit to be taken to my pre-op room. Here, I changed into my hospital gown and sweet socks (with "grippies" on both sides, just in ) and settled in for some good old-fashioned "hurry-up and wait". We chatted with nurses, got my IV, and I had to go use the restroom in my gown... a very interesting experience for sure. I was very concerned about people being able to see my butt in the gown, which I later realized was only an exercise in futility.

They finally wheeled me back to a holding room to administer my epidural. Instead of having a typical PCA pain pump, I had a spinal "block" to deliver numbing and pain medication directly to my spine. The theory is that since you require less morphine, you recover much faster and have fewer side effects. The nurse was very nice and gave me a few "margaritas" and had me sit on the side of the bed leaning on her while the anesthesiologist did his work. I only felt a small stick from the skin numbing medication and then the actual epidural needle only felt like pressure and a small pinch. They taped the line from the puncture in my spine all the way up to my left shoulder. This is where they would eventually connect the medication. At this point, I was ready for surgery!

A few more nurses came in to ask me questions and do more prep. I'm not sure how long I was in this holding room, but it didn't feel like long before I was rolled back into the operating room. There were a TON of people that the nurses promptly introduced me to (seems like a strange courtesy considering they were all about to slice me open) and it was a very crowded and tight space (from what I could tell). They offered me warm blankets which I turned down because I was actually a little hot. Then, they helped me slide over onto the operating table where I then changed my mind and asked for blankets. The last thing I remember was them draping the warm blankets over my arms and I was OUT. Im pretty sure I wasn't totally unconscious at that immediate point, but the anesthesiologist must have put something in my IV to make me forget completely.

After what seemed like only seconds or minutes, I was awake in the PACU (Post Anesthesia Care Unit) or recovery room. My throat hurt from the tube, and I was in some pretty intense pain. They brought my mom and my sister back very briefly, though I don't remember what they said or how long they were there. I think there was talk that my epidural had not been turned on yet, so my pain was pretty high. Finally, someone connected the epidural and the pain subsided enough for them to take me to my room. My semi... private... room...

Morning of Surgery

I finally was able to get to bed last night around 1 AM and woke up this morning with a lovely headache (I think I'm dehydrated from the prep). I have showered and washed with a special soap called Hibiclens that is supposed to help prevent infection at the incision site. About to pack a bag and head for the hospital. This is it! It's gameday!

Night Before Surgery

I have finished taking the bowel prep, but still have not had much of a result... I am very bloated and uncomfortable, but mostly just ready for this stuff to start working!

Looks like it could be a LONG night!

Day Before Surgery

Today is the day before surgery and it has been a relaxing, yet strange day.

I woke up today and instantly felt nervous about what tomorrow brings. I took a shower, and fixed a cup of coffee which helped me relax a little bit. I am on a liquid diet and have been STARVING all day. While pouring my cup of coffee, I realized that it was probably my last for a little while (coffee is on the no-no list right after surgery and potentially long term as well :( All day, I found myself thinking of all the "lasts" I will have today: Last cup of coffee; last shower with no bag or scars; last bowel prep (PTL!); The list goes on but gets a bit more graphic, so I'll spare you some of the details!

Movi Prep - 2 parts battery acid, 1 part cow urine...
Really terrible!

I tried to keep myself busy this morning and afternoon by running some errands and going to vote. I also got a haircut since I may not be able to do this for a while (not the best haircut I've ever gotten either, but I'll probably look like hell for a little while so it doesn't really matter).

Overall, I'm pretty relaxed and am not extremely nervous yet. I think I may be more nervous about drinking the Movi Prep than I am about surgery at this point. I'll update later and let you know how the prep is going (without too much detail I promise!)

Pre-Op Appointment - "X" Marks the Spot

I had my pre-op appointment last Thursday and overall it was fairly uneventful. I did get VERY nervous and almost had a breakdown moment when the stoma nurse was showing me the ileostomy bag and said, "This is the bag you'll have when you wake up from surgery". That made everything seem way too real for me. I almost started crying right there in the office, but luckily was able to control myself and move on.

For the appointment, I had been told it would take about 2 hours. I arrived at the hospital where they have a special parking deck just for the surgery center (for pre-testing too). I only waited a few minutes after filling out some paperwork before they called me back. I was weighed (156 lbs with clothes on) and had my blood pressure and temperature checked. Then, I waited for the stoma nurse to come.

When the nurse arrived, she talked through the ileostomy with me, showed me diagrams, and showed me one of the bags. I was very distracted while she was talking, but luckily I had already learned a lot about having the ileostomy from the internet and some materials I had gotten from my first visit with "the bag lady". Then, it was time to mark my stoma site. She had me sit in a chair, cough to locate a certain muscle in my abdomen. She made me twist certain ways, lift my legs up, and bend over to select to the prime location for my stoma. It is important that the site is very flat and does not have any natural folds in the skin so that there is a good seal for the ostomy bag. She marked the spot with a sharpie and then placed a "tegaderm" over it (think saran wrap that sticks to your skin) so that the X will not wipe off before surgery. I felt a little awkward since my stomach is a little hairy. I wish she had shaved the hair before placing the tape... I can't wait to see how that feels coming off on surgery day!

I was done with the whole process in about an hour. There was no blood work, no EKG, and no X-rays of any kind. I was a little surprised that they didn't do any of this, but I'm assuming they will do any other tests they need on Wednesday morning when I get to the hospital. The only other thing I was expecting was having a chance to speak with an anesthesiologist. My surgeon had recommended that I have an epidural for my pain control after surgery and I wanted to ask about it and consider this as an option. I didn't meet anyone at pre-op, but got a call the next day from one of the admissions coordinators asking me to come an hour earlier on surgery day because I am having a "block" before surgery. Still not totally sure what this is, but I think it is the epidural, so I guess my questions will have to wait for Wednesday morning.

This weekend, I spent lots of time with my family before surgery happens. I got a chance to hold and play with my two year old twin nieces for the last time for several weeks (won't be able to pick them up for about 6 weeks). Also, my dad helped me move a couch from my sisters' house to mine on the other side of town. For a few months, I've only had a love seat and chair and decided that I really should have a full sized couch while I recover from surgery :)

Tomorrow is my last day at school for a while, and Tuesday is prep day and election day. Then, it's gameday....