Six Week Update

I can't believe it has already been six weeks since surgery. I have been back at work for a week and a half and am so glad to be back. I am still getting tired very easily, but that is to be expected for a little while. Luckily, I have a two week Christmas break starting next week :)

Life has been getting progressively more normal and I feel like I've come a long way since surgery. Taking a shower no longer feels like a workout, I am able to sleep normally on my side, and the bag has slowly ended up in the back of my mind most days. These are things that seemed really far away right after surgery. I am still a little sore, especially around the incision site. There are times when I'm especially active that I notice some soreness in my abdomen (not just at the incision site). Sometimes, it feels like a "stitch" in my side, or like a cramp when running. I'm not sure if this is because I've lost so much muscle tone in my abdomen, or if it is the tissue on the inside still healing and readjusting to the new plumbing. Today, I was trying to be agile while hopping over rain puddles in the parking lot at school. Later on, I realized that my body wasn't ready for my ninja-like puddle evading skills. I'm definitely sore after that!

I've had a couple of very small speed bumps this week that were a little frustrating, but things could always be MUCH worse! First, I found a bunch of gift cards to restaurants that my students got me at the end of last school year. I used one on Saturday to get a steak from Longhorns (so good!) and decided on Monday of this week to get something from Chilis. I ended up getting some little slider burgers that I have eaten before and enjoyed. I was starving when I got home, so I promptly dug in. I knew the burger had onions (on the list of foods to be cautious about) but I have eaten onions since surgery and had no issues. I wasn't too worried and continued to engorge myself. About 3/4 of the way through the burgers, I suddenly realized something about the burger that was not good: The bun had sesame seeds! Seeds of any kind are on the "do not eat" list, especially for the first couple of months after surgery. I freaked out a little and got mad at myself for not realizing it sooner. I have been so afraid of having a blockage and have been pretty careful for the most part, so I was mostly upset with myself. I quickly drank a lot of juice, to hopefully ensure that the seeds would flush themselves out. Later that night, I ended up getting what I think is my first bout of diarrhea. I had to empty my pouch very frequently and it was very watery (much thinner than normal). I was able to see individual sesame seeds and realized too that the ground beef must have been very gristly (sorry if this is too graphic, but I am no longer phased by talking about my bodily functions or fluids!) because I could see the remnants of that as well. Overall, I made a poor choice for dinner that night, and I paid for it in lack of sleep and peace of mind. Luckily, I did not get a blockage and learned to be more careful about watching what I eat!

My new ostomy supply organizer

The next "setback" I had happened yesterday while changing my pouch. It was the first time I changed the pouch in the morning before going to school (last week I did it right before dinner, so there was very little activity). I was up a little earlier to give myself plenty of time, so I was pretty tired and my brain was not firing on all cylinders. I was testing out some new wafers/bags that Hollister sent me last weekend. I am trying out a pre-cut wafer (as opposed to the cut to fit ones I've had since surgery since the stoma can change) since my stoma has stayed right at 1 1/4" for the last few pouch changes. While preparing the wafer, I applied the paste like I usually do, set the wafer aside, and started working on cleaning/prepping my skin. At some point, I managed to knock the wafer on the ground and it landed adhesive side down (of course!). Fortunately, after some swearing and picking hair off of the adhesive, I was able to salvage the wafer. I set it aside again and continued skin prep when I managed to RUIN this recently salvaged wafer. Last weekend, I bought a small countertop organizer to keep my ostomy supplies easily accesible (up until then, I was using a small, cluttered Coloplast bag provided in the hospital. It was also my "emergency bag" that I take to work in case I have a leak at work. Now, I have a supply that stays at home, and an emergency bag that stays in my car. This way, I don't have to worry about taking the bag to and from work every day). Unfortunately, I managed to open the bottom drawer right on top of the wafer which effectively smeared stoma paste all over the wafer. At this point, there was no chance of rescuing the wafer, so I threw it out and opened the other wafer that Hollister sent (thank goodness they sent 2 - probably for newbies like me!) and applied it with no further hitches.

Writing about these two very trivial things makes me realize that I am really in a pretty good place. I have read horror stories about the complications that people have after a surgery like this (abscesses, fistulas, tons of leaks, etc.), so I am thankful that my biggest concerns are a little diarrhea and a ruined wafer (that I didn't even pay for). God is good and He is definitely helping me through this!

Regarding the new wafer, I think I like it so far. Not having to cut the opening saves a good bit of time while changing the pouch. The other thing about this wafer is that it is a little smaller. Since my stoma is 1 1/4", the wafers that Hollister makes with this size opening have a smaller flange (the plastic tupperware-like ring that holds the bag to the wafer). I'm still not sure yet if this smaller flange is a good thing or bad thing. Because it is smaller, it doesn't get caught on my pants as often. On the other hand, the smaller ring means there is slightly less adhesive between the stoma and the flange. I can't tell yet if this means the seal is not as good, but hopefully I'll be able to tell by my next pouch change.

Finally, I realized the other day that I have not posted any pictures of my incision or scars. I need to find some post-op pictures that my folks took while I was drugged up in the hospital and post those as well. For now, here are some six week pictures of my scar and the ostomy pouch (The little scar on my left side is where the JP drain was placed during my hospital stay). Overall, the incision is healing very well and starting to itch (which is a good thing, I think... it means the nerves are starting to heal as well). I am using Mederma, as recommended by a dermatologist, to try to reduce the size and darkness of the scar (my skin scars really easily, so I hope this stuff helps!).

Part of the scar is always covered by
my pants line

The Whole Scar

Back To School...

Back to school, to prove to dad that I'm not a fool...

Not really, but every time I say "back to school", that song comes to mind (from the movie Billy Madison if you're not familiar... YouTube it!).

I went back to school for the first time last Monday after only spending 4.5 weeks at home after surgery. It felt good to be back and be back into a normal routine. I was very tired, especially toward the end of each day, but I felt like it will help me get closer to 100% sooner. I did end up leaving school early on Thursday afternoon in order to take a nap and recover before coming back for our concert on Thursday night. Being at the concert was so refreshing. Not only did I get to see all the band families for the first time since surgery, I also got to make awesome music on stage with a bunch of teenagers. This night definitely confirmed the fact that I love my job and was so happy to be back (even if I was worn out!).

Other than returning to work, not a whole lot has happened since my last update. The bag changes are going well and I have still had no leaks (knock on wood) since the big blowout in the hospital. I am supposed to be receiving some samples from Hollister so that I can try out some new products (pre sized skin barriers and some without the cloth border, just to try something different). I am also going to order my second set of supplies before the end of the year. Hopefully, I can get enough supplies to last for a while since my deductible resets at the beginning of the year.

4 Week Update

It has been exactly 4 weeks since having surgery to remove my colon and I am feeling pretty good!

Since the last time I updated, I have started to feel much more normal. I have slowly increased my activity level and have managed a walk most days for the last few weeks. I started very slow and only walked a little bit in my neighborhood. However, I have quickly transitioned to walking up to a mile and a half at Swift Cantrell Park (right around the corner from my house). It has been very warm lately, so getting out of the house for some light exercise has felt absolutely wonderful! I have been running a few errands every day as well. Nothing big usually, just a trip to the grocery store or to Walmart for some things. I did go over to Sandy Springs/Dunwoody last Saturday to watch the UGA game at Taco Mac with some friends. I was very nervous about being able to stay the whole time and nervous about the bag. On they way there, it was super noisy and inflated like a balloon, so that made my nerves peak. When I got there, it was pretty full, so I went to the restroom for my first bag emptying in public. I was still nervous, but quickly realized it was not a big deal. I even went back to empty before I left just so that I wouldn't have to worry about it on the way home. Overall, I'm glad I was able to see friends and get out of the house. Anything that makes me feel like a normal human being is a good thing at this point!

This week has been a busy week since I am going to attempt to head back to work on Monday (hopefully it is not too soon, but I will just have to take it easy!). I have been trying to get all my last few appointments out of the way so that I can make sure the last two weeks of school before Christmas break go uninterrupted.

On Tuesday, my dad came over to this side of town and we did yard work! He brought his leaf blower/vacuum and I helped him get all the leaves into a pile so that he could suck them up in the vacuum. It was a BEAUTIFUL day out and I was in shorts and a t-shirt at 11AM and was actually hot! It felt great to get out and do something slightly more physical. I was sore a little later and on Wednesday morning, but that is a small price to pay for working on getting my strength back.

Tuesday I went to see my primary care doctor because I have been having some pain while emptying my bladder. I called the surgeon on Monday to ask them about it, but they suggested that since it is so far past surgery that I should call my regular doctor or a urologist (they are assuming it has nothing to do with the surgery itself). It's hard for me to tell if this is a new pain that has just recently developed, or if it has been happening since surgery. Right after surgery, everything hurt and felt weird, so I think I just lumped all the pain together. However, now that I am feeling significantly better, this bladder pain is becoming much more noticeable. My regular doctor was a little perplexed since my urine test seemed to come back negative for anything suspicious, but he went ahead and put me on some antibiotics in case I do have a urinary tract infection (especially since I had a catheter for 5 days in the hospital). He is sending my urine to have further labs done just to double check. I hope that it is just a UTI and nothing more serious. This surgery does happen in close proximity to the bladder, so there is risk of some damage. My surgeon seemed confident that there were no complications during surgery, so if the antibiotics don't help, I'm not sure what the next step would be. Stay tuned for further details....

Today, I visited the Ostomy nurses at the hospital to take a look at my stoma and check on some irritated skin. I mentioned in a previous post that one of the spots where the rod holding my ileostomy in place was sutured is not healing well. During my last bag change, I noticed that this same spot still looked irritated and "weepy". Almost like a big cut that's been covered by a wet bandaid for too long. So, I decided that I would head to see them just to check on it and see if they had any tips to help it heal sooner. When we removed the bag this morning, I was pleasantly surprised to see that this spot was healing very nicely and looked MUCH improved since my Saturday bag change. The ostomy nurse had a medical student training with her, so it was interesting listening to her talk through the bag change. He even asked me some questions about my surgery, preferences for my ostomy bag, and how I like to use the paste on my skin barrier. He was very interested in learning about me and my circumstances. This is probably very important to being an ostomy nurse since all patients have different needs (anatomically and intellectually).

The nurses also complimented my stoma and gave my surgeon an A+ rating on the stoma creation (they said this is a big deal coming from people who see ostomies every day! Also, on a side note, my primary care doctor complimented my surgeon and his practice at my appointment yesterday. It is good to hear these things from others in the profession. The fact that he is respected makes me feel pretty good about choosing him for the surgery!) My stoma was very cooperative and the bag change went off (or on) without a hitch. The nurse shaved the hair where my skin barrier sits and then used what she called the "crusting technique" on the irritated spot. This simply involves layering stoma powder, water or skin barrier, then more stoma powder and more skin barrier. This layering provides room for the wound to heal and also makes sure that next time I remove the barrier, it doesn't pull at the wound and make it worse. Good tip to know just in case something else happens in the future. Overall, it was a good appointment and gave me added confidence about my bag changing skills!

I am very happy with the progress I am making and my outlook on this whole situation has changed significantly since my hospital stay. I was a little depressed right after surgery and was disappointed with how slowly I was healing. I know this is normal for such a huge surgery, but it is still not something that can be suppressed. However, now that I am feeling relatively normal, it is so much easier to let my positive attitude take over and to realize that things could be a lot worse! Yeah, I have a pouch attached to my abdomen that collects my waste (for a few months only), but I don't have ulcerative colitis anymore. Sure, I have some hospital bills, but I don't have to pay for expensive medication anymore. And finally, I may eventually end up using the bathroom more than normal, but at least I don't have colon cancer! This is the cherry on top of an experience that could have been way worse, but thankfully isn't!

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....

One Week Out

Happy Halloween!! 

Today is exactly one week until my surgery and the nerves are starting to mount a little bit. Today, during one of my classes, a student asked me when my surgery is scheduled and I had the realization that it was almost exactly a week, even down to the minute. Definitely freaked me out a bit!

Overall, I am becoming more and more hesitant about surgery. I keep running through the "what if's" in  my head. What if the pathology comes back better? What if it comes back worse? What if I don't really need the surgery? What if there are complications? What if, what if, what if...!!! I know it's not helpful to divulge into the "what if's", but it's hard not to when undergoing such a big surgery.

I have my pre-op appointment tomorrow, so hopefully I will know a little bit more about surgery and the hospital. I'm also supposed to get my stoma site marked!

Telling My Kids

Today was the day I've been dreading for months... I finally told all my students that I will be gone for 4 or 5 weeks. Luckily, I didn't loose it in front of the kids like it thought I might and all went very well. I did have a few kids get emotional, which honestly surprised me a little bit, but I guess it's nice to know they care as much about me as I care about them!

Also, I have started feeling better because of the steroids and antibiotics (in spite of the upset stomach thanks to the drugs). I finally got my voice back too (not totally, but mostly).

Now, I am enjoying my first Friday night without 220 High School students since August 31st, and it is pretty nice! Tomorrow is our last band competition, and then that ever elusive "free time" returns! Can't wait to see the kids perform tomorrow, but also can't wait to leave school at 4:15 on Monday and not have to worry about marching band!

Two Weeks Out...

I'm exactly two weeks out and have been feeling better since the last time I posted.

Dr. Nesmith checked my blood work when I went in and said that everything was stable. I think I may have had a little stomach virus of some sort... I had a fever when I went in for my appointment, so this may be the reason I felt so bad. Also, I got PLENTY of rest the week I saw Dr. Nesmith because of our fall break. Definitely much needed and very helpful!

My appointment with Dr. Liberman went well and he let me ask as many questions as I had. He is very patient and even drew a few diagrams to answer some questions. He also mentioned the possibility of me using epidural analgesia (pain medication) post-surgery. This would be instead of having a typical morphine pump (PCA). The PCA works well, but comes with a lot of side effects that can delay recovery (nausea, vomiting, grogginess, etc). The epidural will hopefully help me have no pain without the side effects of the PCA Pump. I did a little research and discovered that the epidural analgesia is very beneficial and speeds recovery time because there is less trauma to your body (because of fewer side effects). I am going to ask the anesthesiologist about it during my Pre-Op appointment and see if it is a viable option for my surgery.

I also got the date of my Pre-Op at the last appointment. I will go in next week on Nov. 1st to do all my Pre-Surgery testing and training. They will mark my stoma site and perform bloodwork (along with numerous other things I'm sure). Still not really sure what to expect this day, but hopefully it will help calm my nerves a little(?).

Also, I started feeling sick again at the end of last week. At first, I thought it was just my fall allergies kicking in, but I lost my voice very quickly (within only a few hours it seemed like) and still haven't quite recovered all the way. I went to an urgent care center thinking I might have bronchitis (because of a cough that won't go away). However, I was diagnosed with a pretty decent sinus infection and was given a dose of antibiotics and some steroids to help kick this infection before surgery.

I am getting more anxious the closer the surgery date gets. I have one more busy weekend this week, then next weekend, I will be in full prep mode for surgery. I need to get my act together and make sure I am ready for recovery at home after surgery.

One Month 'til Surgery

It's been almost 2 months since I updated last and a lot has happened since then:

- School is in FULL swing and it is starting to wear me down a bit. We are finally in the competitive part of Marching Band season and long hours are definitely catching up with me. We competed yesterday for the first time and had a great show. Now we have a couple of weeks until our next competition. 

- I spoke with the surgeons office regarding my FMLA leave paperwork. The nurse who was completing my paperwork asked me the dates I was planning to take off, so I told her that I was planning on taking leave from Nov. 6 (the day before surgery) through the last week of November. She  sounded surprised and asked me to plan on taking a full 6 weeks off after surgery, which puts me back to work on Dec. 19th (only 3 days prior to leaving for winter break). She said that since I'm young, I may not need the full 6 weeks, but it is good to have if needed. I REALLY hope that I don't need the full 6 weeks and can get back sooner. 

- Finally, I have a few appointments scheduled for this week. One tomorrow with Dr. Nesmith (my GI) and one Friday with my surgeon, Dr. Liberman. 

          - I am seeing Dr. Nesmith tomorrow because I have been feeling bad for a few weeks. I have been nauseated and bloated with some cramping. I think my liver enzymes might also be elevated and are causing some of this uncomfortable feeling. I haven't had blood work since the summer, so they are going to have me come in to check my blood work to make sure everything is OK. Part of me hopes that I'm only feeling this way because I'm so worn out... sleep is an easy remedy and I will be able to get plenty this week (we don't have school on Thursday or Friday). 

          - I am seeing Dr. Liberman on Friday to ask a lot of questions about my surgery. I haven't compiled a list yet, but I have a pretty good mental list started. I plan to ask specifics about the procedure and what to expect when I wake up, complications, recovery, etc. Hopefully it will put my fears to rest and ease my increasing anxiousness. I have found myself occasionally getting very anxious about the surgery the closer I get to the actual date. 

          - Finally, I have my PreOp appointment scheduled for October 31 (one week before surgery). According to the nurse, the appointment will last about 2 and a half hours. She's not sure exactly what tests the hospital might ask for (EKG, X-Rays, etc.), but she did say that a stoma nurse will mark my stoma site during this visit. 

Surgery Date Set

This week I finally got up enough courage to call and schedule my appointment for surgery. November 7th (the day after election day) is on the calendar. It is definitely scary having a date circled on the calendar; it is finally becoming more and more of a reality. 

I have also spoken with our principal at school and have begun the FMLA paperwork, since I will be out of school for more than 5 days. My principal and co-worker are being very accommodating about missing so much school. I HATE missing school, but this is one case where I need to take care of myself and not worry about missing school. They will be just fine without me for a few weeks. 

Bag Lady

Today, I went down to Kennestone Hospital to meet with a stoma nurse to talk about the ileostomy and to ask any questions that I might have. I was sent to the wound treatment center, which is part of the hospital since they provide help to both inpatients and outpatients. I felt very awkward in the waiting room since I was by far the youngest person there...probably by 40 years or more. It seemed like there were a lot of people there for physical therapy of some sort... lots of canes, limps, and probably war stories (literally?).

When I finally got to speak with the nurse (aka, the "Bag Lady"), she was very encouraged that I had taken the time to come speak with them so early before surgery. She said that a lot of people who end up with an ostomy only have a few days to weeks to prepare, so I am well ahead of the game. 

Honestly, I've done a lot of research about the ileostomy and had a pretty good idea of what to expect as far as diet and what it is generally like to have one. Obviously, there is no way to know exactly what it will be like until it actually happens. However, there were a couple of things that I could not have known just by researching on the internet.

First, the bags themselves are much lighter and thinner than I realized. In pictures, they seem like they are made of fairly thick rubber or plastic, however they are much thinner; think very strong sandwich bag. The three bags she gave me were all different models. One was a two piece bag with a "tupperware"-like seal and the other two were one piece bags. All of the bags are drainable, which means that I can simply drain the waste into the toilet instead of having to change the bag every time it fills. Two of the "wafers" (where the bag attaches to the skin) were flat and one was concave. All of these options make using the bags easier for people with ostomies.

The second thing that surprised me was the sheer amount of supplies and options available for all the ostomy supplies. I was given 3 separate catalogs that each have hundreds of different options for the ostomy bags: shape, size, drainable, not-drainable, two piece, one piece, filters for gas, clear or opaque, concave or flat wafers, and many more options. After thinking about it, it makes sense that there are so many options. Many people have permanent ostomies and have to adapt their bags to their specific body type. Why not give them as many options as possible to limit complications from the bags.

Overall, the visit to see the Bag Lady was worth it. It definitely made me feel slightly more comfortable about having the ostomy bag for several months in between surgeries.

Meeting the Surgeon

Yesterday, I went to Marietta to meet my surgeon, Dr. L. He was very personable and easy to talk to. I appreciated that he let me and my mom both ask as many questions as we needed. We both felt at ease after meeting him. He did emphasize that this is a BIG DEAL surgery and not something to enter into lightly. Also, he kept mentioning that none of the options available are "perfect", but I guess they all beat the other option (cancer) hands down!

One thing that I was a little disappointed about is that he won't do the operation laparoscopically. I assumed that most surgeries are now done laparoscopically, but apparently that is not the case with this operation. He also mentioned that there are no Colorectal Surgeons in the area that will do this operation laparoscopically (there are some general surgeons, but this is such a highly specialized operation, I want someone who really knows what they are doing). So, instead of having several small incisions and one medium incision below my pant line, I will have one long scar from just above my belly button down to my pubic bone. Not ideal cosmetically, but it makes for a shorter operation. I have heard that recovery is a little harder with the open surgery, but I will just have to tough it out.

Also, I had hoped there was a small chance he would agree to a "right hemi-colectomy" which would only remove half of my colon. This is a much simpler operation and requires no ileostomy and only one operation. However, because I have HGD accompanied by UC and PSC, there is literally no surgeon that would agree to only take half because of the risk of metachronous cancer/dysplasia (meaning it develops later down the road). So, it is decided that the only option is a total proctocolectomy (taking everything!).

Finally, they set me up an appointment to go meet with a stoma nurse at the hospital. This will allow me a chance to see the bag that I will be living with for several months between surgeries. The nurses at the hospital will help me until I am discharged following the first surgery, but after I go home, I will be mostly on my own. This is just a chance to get used to the bag while not in the hospital.

All that is left now is to schedule a date for surgery #1. I am hoping to have the surgery done toward the end of the semester (either November or December). This gives me the chance to plan my recovery time around school holidays and hopefully avoid missing too many days. I am also thinking that I may be able to defer surgery #2 until next summer if possible. However, this will depend on a lot of things, so for now I am going to worry about the first operation.

Next Appointment

I got a call today from my GI and set up my appointment to go meet a possible surgeon next week (Monday, July 9th). The surgeon was highly recommended by my doctor so I am interested to meet him and see what he has to say. This is my first experience with any sort of surgery, so I'm not totally sure what to expect. I will be taking a list of questions I have created so that I feel really comfortable with the procedure and know exactly what to expect (btw, my friend/grammar nazi Nikki would be so proud! That last sentence ended in a preposition, but I felt compelled to go back and change it!). 

The doctor's assistant also told me that my lab work came back (to check on the good ole' liver) and that things have stabilized a little bit. I'm pretty sure that all the blood tests that I've had in the past few years have slowly been creeping up, so this is definitely good news. I had almost forgotten about my liver in the past few months...

I also found out tonight that it is really tough for me to tell friends about having this surgery. After dinner, I told a good friend from college that I was having this surgery and was holding it together until I started talking about the cancer risk. Apparently my brain decided that this is what I am the most scared about. I broke down a little bit, which I guess is allowed every once and a while, right? I know the odds are very scary (42% risk of already having a "synchronous" cancer), but I must hold on to the fact that they are still technically in my favor. Plus, I've got The Big Guy on my side and I trust that He knows what He is doing!

For now, I'm going to take another vacation with friends (for the 4th of July... my second favorite holiday!!) down to Florida. We are going scalloping on our second annual trip to Steinhatchee, Florida (Google it... I swear it's a real place!). I went last year with lots of good friends and I look forward to the trip again this year. 

I will update next week after the consult with the surgeon. Hopefully there will be some good news about the timing (not before school starts!?) and the actual operation (not a TOTAL colectomy?!). But, I'm not keeping my hopes up for anything at this point :0/

Confirmation...

Today, I saw my GI to discuss the results of my last colonoscopy. As I suspected, he has referred me to a colorectal surgeon in Atlanta to have a consultation about surgery. There are still a lot of details to be worked out (timing, type of surgery, etc.), but I know for sure that the surgery WILL happen in the very near future.  Definitely nervous about the surgery and all the medical aspects that go along with it. I'm also apprehensive about how it will effect my work schedule. I hope to miss as little school as possible, but it may be necessary in order to heal properly. I will update again when I have my consultation with the surgeon.

Red Letter Day - June 20, 2012

Today, I got a letter from my GI with the results of my most recent colonoscopy and things are not looking good. According to the results, I have moved from being indefinite for dysplasia to having High Grade Dysplasia in the lining of my colon. This is an indication that lots of changes have begun and is considered a "pre-cancerous" condition. According to some research I've done, HGD, if left alone, WILL turn into cancer. This means that most likely the surgery will be needed in order to prevent colon cancer. Also, the chance that I may already have an invasive colon cancer is 42% according to some studies that I looked at. I guess the odds are technically in my favor (58% of having no cancer), but it is still very scary. I have an appointment with my doctor next week and will update then, but this weekend I am heading to Chicago to visit two great friends for a nice vacation!

Overdue Update

Since the last time I wrote, a lot has happened. Fortunately most of it was related to school and had not much to do with my health! I went to see Dr. Wolf in Atlanta at the end of January. I was VERY nervous for the appointment (my blood pressure was through the roof!) and had to wait a while to see the doctor. He finally arrived and was not too concerned about the abnormal results on my colonoscopy from November. He called Dr. Nesmith, my primary GI, and recommended that I have another colonoscopy in six months from my last one, which happens to be at the end of May. He also suggested that since I have some possible reflux problems that I should also have an upper endoscopy (EGD) to make sure things are OK on the upper half of my GI tract.

I was so relieved to hear that the surgery was not happening, at least not yet. For a whole month, my world was weighted down by what would have been a life changing operation over two surgeries and several months. During that month, my only solace was in trusting that God would know what is right for me and has a plan for what will happen, good or bad. One of my favorite selections from the bible is Matthew 6:27, 34 : ²⁷Who of you by worrying can add a single hour to his life? ³⁴Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. These words reassured me that the lord is sovereign and will provide for me every day!

In 3 1/2 weeks, I will have another colonoscopy and EGD. I can already feel a little bit of anxiousness creeping back into my life, not just because of the possibility that another bad biopsy could still mean surgery, but also for the colonoscopy and upper scope themselves. The prep the night before is pretty rough, though not as bad as I remember my first one was. I will update as the time for the colonoscopy approaches... maybe I could update during the prep? Not sure anyone really wants to see that though :)