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!