Back to Work

Three weeks after the second surgery I asked my doctor if I could go back to work. I teach high school. It's not like I am a construction worker. I thought it would be fine.

He told me to wait. I couldn't because I was running out of sick time.


He told me to only go back part time. I couldn't because of the way my schedule of classes fell.


He told me I would regret pushing it. He was right.

A Blockage?

About two weeks after my resection, a friend of mine came to visit.

I was feeling brave and itching to go out. I suggested we go out to eat. My doctor had just told me that I could start eating fruits and veggies again and I was craving a salad from my favorite restaurant. Out we went!

I only ate a little, chewed carefully, drank a ton of water. I followed all the rules. 

But the pain in my stomach, right under my stoma scar, I knew it immediately.... 

I had a blockage.

We waited out the night. I used heating pads. Took a hot shower. Drank hot water. Nothing helped. 

At 7:30am we went to the emergency room. I hadn't gone to the bathroom in over 12 hours. I was scared.

By the afternoon we were on our way home. Everything had passed. It was nothing major. Apparently blockages happen and can pass on their own. 

Apparently I had a lot of swelling around the site where they had reconnected my small intestine. I was also retaining a lot of fluid. 

Lesson learned. 

But trust me - it is not something I want to go through again.

The Strangest Thing

I felt stronger after the second surgery. I'm not sure why, but I did. I wasn't passing out all over the place. I wasn't winded from walking.

It was the strangest thing.

Oh boy was there pain though. 

You go to the bathroom constantly. Probably 20 or more times a day. It was like my colitis was back. Only it was a pain in my butt this time. Literally. So bad I would cry. I will never forget the pain of this for as long as I live.

One of my friends told me I was walking like I had a stick up my butt. I wasn't surprised. It felt like I did.

I told my doctor at my two week appointment. He recommended Imodium and bananas. And lots of diaper cream.

What I have found helps the pain the best is a routine of Imodium and Metamucil. Two Imodium before bed. One glass of Metamucil in the morning. This combination has reduced the number of times I need to go a day and has helped thicken things up. Those of you who are going through it know what I am talking about.

I also take a baking soda bath every night to help soothe the pain. Between half a cup and a full cup of baking soda mixed with hot bath water. I sit in it for 20 or 30 minutes and read a book.

It has been ten weeks since my resection. I am hoping it will get better soon.

Time for the Second Surgery

When I walked into the surgeon's office at 6 weeks, I was the patient he wanted to see. I had begun simple household tasks such as cleaning bottles and doing laundry (even if I took the laundry up and down stairs in my arms making several trips rather than using the heavy laundry basket). I was cooking and cleaning.

I was going for walks regularly with my husband and our daughter. We would walk around the neighborhood until I was too tired to continue.

I was doing the grocery shopping. I was going out with friends. I even volunteered some time organizing some competitions at the gym we go to.

The surgeon smiled and said he couldn't believe I was the same patient he saw two weeks ago.

I went for my tests to see if I was ready for surgery. The first was a rectal exam to make sure the connections were  healed internally. The second was the J-Pouch study to test the integrity of the new J-Pouch. They weren't pleasant tests but they were over quickly and I passed with flying colors.

We set the date for the resection and to close the stoma. It would be done exactly eight weeks since the first surgery had been performed.

Stop Being A Wimp

At four weeks I visited with my surgeon. He said that my incisions were healing well (I had five since my procedure was done laparoscopically). He asked how I was doing physically. I said I was doing well. I had after all showered that day and walked all the way from the parking garage to his office without stopping to sit down.

He told me to stop being a wimp.

He pointed to the fact that I had been extremely active before the surgery, at the gym everyday. Why was I suddenly proud of myself for a 7 minute walk? He told me I should be walking at least 30 minutes a day at this point. Ooops.

When I asked if I could start driving he actually laughed at me. Apparently I should have started sooner.

He told me that he wouldn't let me go in for the second surgery in my current condition. He wanted to see me again in two weeks. And he wanted me to be a fully functioning member of society. No more laying around all day long. No more only showering twice a week. No more relying on everyone else to cook my meals, clean my house, and care for my child.

It was time for me to man up.

But I still wasn't allowed to pick up my daughter. She weighed 20 pounds and the max weight he wanted me lifting was 10 pounds. Go figure. He told me to have my husband put her in the stroller and to take her for a walk.

So I did.

Surprises

I was surprised by what I found difficult post-op.

I was much weaker than I expected. I would get winded just standing up. Carrying on a conversation was a challenge because I would get so short of breath.

I got a stomach bug two days after I got home from the hospital. It hurt to throw up with the healing stitches but the bigger danger was in dehydration. My WOC nurse has since told me that from here on out I should go to the emergency room for IV fluids whenever I get a stomach bug. Realistically I don't see myself doing that. But I will tell you this - I have never felt more hungover in my life than I did after that 24 period. It definitely took me over a week to recoup what I lost in fluids that day and finally shake the "hangover".

My blood pressure also kept dropping (70 over 40) so I had to be careful not to pass out. When I felt myself getting light-headed, I would just sit down immediately. No need for unnecessary falls. My visiting nurse told me that this could also be my body recovering from the anesthesia. Remember you will be under for four or more hours. It takes weeks to leave your system.

On that note showering can be dangerous post-op. We were lucky enough to borrow one of those shower chairs from my grandmother once we realized I would pass out when I lifted my arms up. Try showering without lifting your arms. Ya - it didn't work. Think ahead and please be careful.

Or at the very least - sit down in the shower.

Stomy

When my WOC nurse told me to name my stoma - I thought she was on crack.

Name it? What was it a pet?

I couldn't even stand to look at it. But then I remembered that the nurses weren't always going to be there. It was me and my stoma and I had to take care of it. I made it my mission to be able to care for it by myself.

I named him "Stomy".

And I have no idea why I chose to personify it as a male...

So Stomy and I became best of friends - or at least living companions.

And you know what? It wasn't as scary or as hard as I thought it would be. I actually began watching Stomy. I was truly fascinated, and still am, with how my small intestine was functioning outside of my body. And sometimes you could identify the foods you had just consumed.

WARNING: Blue Italian ice will come out blue on the other end.

My husband actually had to tell me to "put that thing away" a few times. Apparently he didn't find Stomy to be as interesting as I did...

The emptying was a little gross at times, but I found that if I rinsed the bag with room temp water every time I emptied, the smell wasn't that bad. I just kept a red Solo cup near the toilet. You will figure out quickly what works for you.

My WOC nurse did a wonderful job teaching me how to change the bag. I changed it every three days, give or take. I even surprised the visiting nurses who came to the house for the next eight weeks with how adept I was at changing it. It wasn't that hard though: Get new bag ready, pull off old bag (think of removing a bandaid), clean area, apply the powder and spray that comes with the bags, put new bag on. It only takes a minute or two.

It wasn't always smooth, but here are some tips:

1. Use baby wash clothes to clean around the stoma. They are small and easy to maneuver. Remember no soap on the stoma.

2. If you feel burning around the stoma - change your bag. Chances are there is a leak in the adhesive and your gastric juices are eating away at your skin underneath the adhesive. This can be painful, especially when the skin around the stoma started to bleed. Wash carefully with warm water, Cake on some of that special powder they give you and put the adhesive right onto the broken skin. Sounds crazy, but it will protect the broken skin from the gastric juices. Make sure you consult with your WOC nurse. I ended up in a convex bag because my stoma was trying to wiggle his way underneath the adhesive part of the bag. Also make sure you measured your stoma properly. If the bag is too big then any exposed skin will break down. Mine was healed by the time I went to change the bag three days later.

3. Try not to eat or drink for a few hours before you change the bag. Sometimes this helps because your stoma will be less active (think early morning). Sometimes it won't help and you will spew stuff everywhere and make a huge mess. It's okay. S*** happens. Keep breathing and try to not let your hands shake. You can clean up the mess in the bathroom once you get your new clean bag attached firmly.

4. I found that laying down and applying pressure to the adhesive disk immediately after attaching the bag helped. Sometimes I did this for five or ten minutes. It also helped me relax after changing the bag.

5. Always have a garbage bag handy and ready to be thrown outside. Don't want to leave a smelly ostomy bag laying around in the bathroom for days.