I know I have been talking about all of my frustrations lately. That is because frustration is what I am dealing with. Frustration is what is on my mind. I thought I was getting better but then I had several bad days in a row. Frustration consumes me.
But I learned a very important lesson from my daughter yesterday.
She has been toddling around for the last few weeks. She walks well if she is holding onto a hand, but we have been encouraging her to walk more - without us there for support.
Yesterday I watched her fall down countless times. On her butt, on her twisted legs, on her hands, on her belly, even flat down on her face.
She didn't cry once. She got back up and kept trying.
Despite the fact that those falls may have hurt, despite her frustration, she kept getting back up and trying again.
So I am trying to be more like one my year old. Despite how much it hurts sometimes, despite how frustrating it can get when I have several "bad days" in a row - I will not cry, I will not give up, I will not get embarrassed.
My daughter and I are learning to walk together.
Thursday, June 28, 2012
Monday, June 25, 2012
Should You Be Lifting That?
I don't like having to ask for help. I never have and probably never will.
I learned during the surgery that it is okay to accept help. I still don't like to ask for it though.
But what drives me crazy is when people judge me for what I am doing now - 11 weeks after the final surgery.
For instance, at work we were told that we needed to box up our office areas and take home any valuables because construction would be occurring during our vacation. So I loaded my office space into three boxes. Books, papers, files, and office supplies. I tried to distribute the weight evenly since I knew I would have to go down a flight of stairs and through several sets of doors.
Now we all had to do this. Everyone was busy.
My boss saw me carrying one of the boxes and said "Should you be lifting that?"
No offer to help mind you. She was busy with her own work. But that isn't what irritated me. I didn't need the help. It was difficult moving the boxes, but I could do it slowly but surely.
What irked me was her judgmental tone. Yes I had just had major surgery. Yes I had just been out of work for 3 months. But no I am not completely helpless.
Did she expect me to be weaker? Sicker? Complain more? Do less? Did she think I was faking the surgery?
I don't know.
But what I do know is that I am strong. A hell of a lot stronger than most people. And I don't need her or anyone else judging me for it.
I learned during the surgery that it is okay to accept help. I still don't like to ask for it though.
But what drives me crazy is when people judge me for what I am doing now - 11 weeks after the final surgery.
For instance, at work we were told that we needed to box up our office areas and take home any valuables because construction would be occurring during our vacation. So I loaded my office space into three boxes. Books, papers, files, and office supplies. I tried to distribute the weight evenly since I knew I would have to go down a flight of stairs and through several sets of doors.
Now we all had to do this. Everyone was busy.
My boss saw me carrying one of the boxes and said "Should you be lifting that?"
No offer to help mind you. She was busy with her own work. But that isn't what irritated me. I didn't need the help. It was difficult moving the boxes, but I could do it slowly but surely.
What irked me was her judgmental tone. Yes I had just had major surgery. Yes I had just been out of work for 3 months. But no I am not completely helpless.
Did she expect me to be weaker? Sicker? Complain more? Do less? Did she think I was faking the surgery?
I don't know.
But what I do know is that I am strong. A hell of a lot stronger than most people. And I don't need her or anyone else judging me for it.
Friday, June 22, 2012
Some Things to be Happy About
After yesterday's rant, I figured I needed to do some soul searching and find all of the things I have gotten better at since the surgeries.
1. I can shower without having to sit down.
2. I can shave both legs in the same shower session. I was alternating one leg per day for a while there.
3. I can bring the groceries into the house without getting winded.
4. I can walk.
5. I can run.
6. I can lift my daughter.
7. I can lift weights heavier than my daughter.
8. I slept 5 straight hours last night.
9. It still hurts to go to the bathroom, but at least it doesn't make me cry anymore.
10. I haven't pooped myself in 6 weeks.
So I guess I am getting better. I should probably start saying that when people ask how I am doing.
1. I can shower without having to sit down.
2. I can shave both legs in the same shower session. I was alternating one leg per day for a while there.
3. I can bring the groceries into the house without getting winded.
4. I can walk.
5. I can run.
6. I can lift my daughter.
7. I can lift weights heavier than my daughter.
8. I slept 5 straight hours last night.
9. It still hurts to go to the bathroom, but at least it doesn't make me cry anymore.
10. I haven't pooped myself in 6 weeks.
So I guess I am getting better. I should probably start saying that when people ask how I am doing.
Thursday, June 21, 2012
Frustration
There are many things that are frustrating with this process.
My frustration of the day is the slowness in my progress.
I am 11 weeks post-op and I know I shouldn't complain. Things could be a lot worse. Things could always be worse. But this blog allows me to vent so deal with it or don't read :)
I ran a 5K at 8 weeks post-op. It was my slowest 5K time ever in my life.
I began lifting weights again. I eased back into it starting small at 6 weeks post op, but grew more confident these last two weeks and tested out some max effort lifts. I am 20 pounds off my power clean. I am 30 pounds off my push jerk. I am 50 pounds off my deadlift. I am 70 pounds off my back squat. I am 80 pounds off my overhead squat.
I also did some time trials. I am 15 seconds slower on my 500m row. I am 30 seconds slower on my 400m run. I am 40 seconds slower on my 800m run. I am 1:30 slower on my mile.
My husband told me last week that I look angry when I work out.
That is probably because I am.
Wednesday, June 20, 2012
Crossfit
Truth be told, I have always been athletic.
I love sports. For a while after college I ran. 5Ks to marathons and everything in between. But the colitis made consistent training difficult.
About 5 years ago a friend of mine opened a gym, a Crossfit gym, and I immediately fell in love.
The workouts were short and intense, compared to the hours I would spend running every day. It gave me the feeling of being part of a team. It fed into my competitive nature.
And the best part....
I was never more than 200 meters from a bathroom.
I Crossfitted 5 to 6 times per week, even in the days leading up to the surgeries.
Although I would watch my performances go down the tubes - not being able to lift the type of weight I usually would, being much slower, feeling gassed just a few minutes into the workout - I knew it was important to continue to Crossfit despite personal frustrations.
It made me stronger and helped me recover quickly from the surgeries. It also provided me a much needed emotional outlet.
I was even in the gym, working out, 6 weeks after the first surgery, bag and all. My doctor encouraged it. Even though I don't think rope climbs may have been the best idea I ever had, it was important that I take back my life.
I also received an overwhelming amount of support from my Crossfit family. Cards, flowers, gifts, meals, visits. Their positive spirit helped me through the toughest experience of my life.
I have been easing back into my workout routine over the last four weeks and the support is indescribable.
Even though I am now the last person to finish the workout, even though I can not lift as much as I used to, even though I can not perform dead-hang pull ups, ring dips, handstand push-ups, and a plethora of other movements the way I used to, my friends still cheer me on and assure me that I am amazing and will get my groove back.
Truth be told, they are the amazing ones.
I love sports. For a while after college I ran. 5Ks to marathons and everything in between. But the colitis made consistent training difficult.
About 5 years ago a friend of mine opened a gym, a Crossfit gym, and I immediately fell in love.
The workouts were short and intense, compared to the hours I would spend running every day. It gave me the feeling of being part of a team. It fed into my competitive nature.
And the best part....
I was never more than 200 meters from a bathroom.
I Crossfitted 5 to 6 times per week, even in the days leading up to the surgeries.
Although I would watch my performances go down the tubes - not being able to lift the type of weight I usually would, being much slower, feeling gassed just a few minutes into the workout - I knew it was important to continue to Crossfit despite personal frustrations.
It made me stronger and helped me recover quickly from the surgeries. It also provided me a much needed emotional outlet.
I was even in the gym, working out, 6 weeks after the first surgery, bag and all. My doctor encouraged it. Even though I don't think rope climbs may have been the best idea I ever had, it was important that I take back my life.
I also received an overwhelming amount of support from my Crossfit family. Cards, flowers, gifts, meals, visits. Their positive spirit helped me through the toughest experience of my life.
I have been easing back into my workout routine over the last four weeks and the support is indescribable.
Even though I am now the last person to finish the workout, even though I can not lift as much as I used to, even though I can not perform dead-hang pull ups, ring dips, handstand push-ups, and a plethora of other movements the way I used to, my friends still cheer me on and assure me that I am amazing and will get my groove back.
Truth be told, they are the amazing ones.
Tuesday, June 19, 2012
With Gratitude
When I returned to work one of my colleagues asked me how the surgeries went.
I responded:
"It was a great experience."
I immediately realized that I sounded like a freak.
Who says that surgery, especially a series of surgeries as complicated as this type, is a great experience?
I must explain...
During this ordeal, I learned an incredible amount about my family, my friends, and most importantly about myself.
I learned that my family will be there through anything. They will visit you every day in the hospital. They will bring you milkshakes. They will clean your bathroom. The gruesome moments that no one else sees, they see those, and they will do whatever they can to help even if it means just letting you cry.
I learned that those who I thought were friends were not really the friends I thought they were. I was shocked when I went 13 weeks without any contact from some of my colleagues whom I previously considered friends. No text messages, no checking on how I was doing via Facebook. I wasn't expecting phone calls, cards, or flowers, but I was shocked by how quickly I was forgotten.
In this, I learned who my true friends are. The many who sent cards which helped keep my spirits high. The overwhelming amount of flowers I received in the hospital - some from friends I had not seen in months. The time taken out of busy schedules to come visit, many driving well out of their way to simply sit on my couch with me. The meals that showed up at our door that kept us fed throughout the entire first month of the ordeal. The emails, the texts, the phone calls, the Words with Friends games. I will never be able to express my gratitude for these friends.
I also learned that "Til death do us part" truly meant that to my husband. He was there every step of the way. He was a full time dad to our new child, a full time caregiver to me, all while working his full time job. He never lost his cool either, or at least never let me see it. He cooked the meals, cleaned the house, did the laundry, and comforted and catered to me. Soup with saltines at 9pm? Grilled cheese at 7am? Run to the store for more Imodium? Trip to the emergency room because I thought I had a blockage? He never acted like I was an inconvenience. He once told me that he loved me because I could help him move our furniture. He has now seen me, someone he fell in love with for her strength and independence, at my weakest and most vulnerable. And I think he loves me more now than he did when we got married.
And from this all I have learned a lot about myself. You never know what you are made of until you are tested. This was the biggest test I ever faced and I am proud to say I passed. I am still adjusting and I've heard it can take up to a year. There are good days and there are bad days, but I guess I was right...
It has been a great experience.
Monday, June 18, 2012
The People I Hate
I know hate is a strong word. But right now it is the only word I can find to describe how I feel about certain people I have encountered over the last few months. These are all comments that were said to me over the last 4 months...
Person # 1 - Mr. or Mrs. "I Know More Than You"
"You should eat gluten free, dairy free, organic, macrobiotic..."
"You should exercise more/less."
"You should drink more water/drink less water."
"You should do yoga, pray, avoid crowds, carry hand sanitizer."
Thanks for the advice idiot - I've been there done that for the last 16 years. Trust me your brilliant idea was my brilliant idea 10 years ago and IT DIDN'T WORK. It's not like I just woke up one day and said "Boy I would really like to have my large intestine removed today." Right now I just want to punch you in the face.
Person # 2 - Mr. or Mrs. "My Life Is Worse Than Yours"
"I had a cold and couldn't work out last week. God you don't know how hard it was."
"I feel awful. I didn't sleep well last night."
"Things have just been crazy with work. I haven't worked out in 4 weeks. I feel like I'm starting from scratch. You know how that is."
Wow! Your life is so hard. I feel so awful for you. Living with half a brain must be difficult. Are you seriously going to complain about your cold to me? I don't feel bad for you. You think not sleeping last night was hard? I've done the crying baby thing and you know what I would rather do that any night of the week. I haven't slept either but it's because I am up every hour to go to the bathroom. I wear a diaper because I can't control my bowls. My diaper rash is worse than my daughter's. God I hate people sometimes!
Person # 3 - Mr. or Mrs. "Let's Compare Surgeries"
"It can't be that bad. When I had my C-section...."
"You will be fine. When I had my hysterectomy...."
"When I had my foot surgery..."
"When I had my knee surgery..."
"When I had my gallbladder out..."
Guess what! I don't want to talk about your surgery. If I did, I would have asked. And your surgery was nothing like my surgery so let's not compare.
Person # 4 - Mr. or Mrs. "Insensitive"
"At least you don't have cancer."
Yes someone said that to me. They didn't have cancer either. Even if they did, their words would not have helped in any way, shape or form.
Person # 1 - Mr. or Mrs. "I Know More Than You"
"You should eat gluten free, dairy free, organic, macrobiotic..."
"You should exercise more/less."
"You should drink more water/drink less water."
"You should do yoga, pray, avoid crowds, carry hand sanitizer."
Thanks for the advice idiot - I've been there done that for the last 16 years. Trust me your brilliant idea was my brilliant idea 10 years ago and IT DIDN'T WORK. It's not like I just woke up one day and said "Boy I would really like to have my large intestine removed today." Right now I just want to punch you in the face.
Person # 2 - Mr. or Mrs. "My Life Is Worse Than Yours"
"I had a cold and couldn't work out last week. God you don't know how hard it was."
"I feel awful. I didn't sleep well last night."
"Things have just been crazy with work. I haven't worked out in 4 weeks. I feel like I'm starting from scratch. You know how that is."
Wow! Your life is so hard. I feel so awful for you. Living with half a brain must be difficult. Are you seriously going to complain about your cold to me? I don't feel bad for you. You think not sleeping last night was hard? I've done the crying baby thing and you know what I would rather do that any night of the week. I haven't slept either but it's because I am up every hour to go to the bathroom. I wear a diaper because I can't control my bowls. My diaper rash is worse than my daughter's. God I hate people sometimes!
Person # 3 - Mr. or Mrs. "Let's Compare Surgeries"
"It can't be that bad. When I had my C-section...."
"You will be fine. When I had my hysterectomy...."
"When I had my foot surgery..."
"When I had my knee surgery..."
"When I had my gallbladder out..."
Guess what! I don't want to talk about your surgery. If I did, I would have asked. And your surgery was nothing like my surgery so let's not compare.
Person # 4 - Mr. or Mrs. "Insensitive"
"At least you don't have cancer."
Yes someone said that to me. They didn't have cancer either. Even if they did, their words would not have helped in any way, shape or form.
Sunday, June 17, 2012
Teaching & Learning
Teaching is a great job. Thankless at times, but so rewarding.
The hardest part of the job...
not getting to go to the bathroom when you need to.
I went back to work four weeks post-op, full-time.
I still had my back-up outfit stashed in a draw in my classroom. I wore long thin maxi pads as diapers (sorry guys I have no tricks - buy Depends). I taught sitting down. I didn't eat until I got home for the day or I ate very little, mostly chicken and rice.
I was lucky because my students, although they might not have understood, took pity on me and behaved. Or at least most of them did.
It was a bad idea all the way around. I should have listened to my doctor's warnings.
It has been ten weeks since the second surgery and I have not made any substantial gains. I blame it on my own pigheadedness.
I am fortunate to be heading into summer vacation soon and I fully intend on using the time to finish healing. I am living my life, don't get me wrong. I am not a hermit. I am living because I have learned the tricks of the trade - many that I have shared with you in this blog.
But I have learned that I still have some healing to do.
The hardest part of the job...
not getting to go to the bathroom when you need to.
I went back to work four weeks post-op, full-time.
I still had my back-up outfit stashed in a draw in my classroom. I wore long thin maxi pads as diapers (sorry guys I have no tricks - buy Depends). I taught sitting down. I didn't eat until I got home for the day or I ate very little, mostly chicken and rice.
I was lucky because my students, although they might not have understood, took pity on me and behaved. Or at least most of them did.
It was a bad idea all the way around. I should have listened to my doctor's warnings.
It has been ten weeks since the second surgery and I have not made any substantial gains. I blame it on my own pigheadedness.
I am fortunate to be heading into summer vacation soon and I fully intend on using the time to finish healing. I am living my life, don't get me wrong. I am not a hermit. I am living because I have learned the tricks of the trade - many that I have shared with you in this blog.
But I have learned that I still have some healing to do.
Saturday, June 16, 2012
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.
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.
Friday, June 15, 2012
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.
Wednesday, June 13, 2012
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.
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.
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.
Tuesday, June 12, 2012
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.
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.
Monday, June 11, 2012
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.
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.
Sunday, June 10, 2012
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.
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.
Saturday, June 9, 2012
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.
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.
Friday, June 8, 2012
Recovery # 1
My memory of waking up from surgery number one is blurry. They had me hooked up to IV painkillers. It flowed continuously, but I could hit a button and release more if I needed to. Between that and the left over anesthesia, I can honestly say I felt no physical pain. Sometimes things got a little uncomfortable, but it was not painful the way I had feared.
Sorry but things are about to get a little graphic...
I did not realize that I would have an anal drain - it was stitched into my butt hole. That was uncomfortable, but removed within the first three days.
I knew I would have a catheter. I had one before, but this one was not working properly. That was uncomfortable.
I had some trouble with my IV. It stopped working in my arm and they needed to find a few new locations. That was uncomfortable.
I can honestly say though that I was not in pain.
I could not bear to look at my stoma the first few days though. The bag was attached when I woke up but I just kept the blanket over it. I couldn't feel it at all. The nurses or my PCAs would empty it and I would look away. The first time I looked at it was almost five days after the surgery. My WOC nurse (a person who specializes in ostomy care) forced me to do so. She said I had to begin emptying it on my own. She made me help her change it. I cried the entire time it took us to change the bag.
Sorry but things are about to get a little graphic...
I did not realize that I would have an anal drain - it was stitched into my butt hole. That was uncomfortable, but removed within the first three days.
I knew I would have a catheter. I had one before, but this one was not working properly. That was uncomfortable.
I had some trouble with my IV. It stopped working in my arm and they needed to find a few new locations. That was uncomfortable.
I can honestly say though that I was not in pain.
I could not bear to look at my stoma the first few days though. The bag was attached when I woke up but I just kept the blanket over it. I couldn't feel it at all. The nurses or my PCAs would empty it and I would look away. The first time I looked at it was almost five days after the surgery. My WOC nurse (a person who specializes in ostomy care) forced me to do so. She said I had to begin emptying it on my own. She made me help her change it. I cried the entire time it took us to change the bag.
Thursday, June 7, 2012
"Johnny"
The ileostomy bag was the one thing about this surgery I feared the most. To be honest though it was not a big deal.
Before I went in for surgery, a friend of the family who has a permanent ileostomy talked with me. He showed me the bags and explained how they worked. My WOC nurse also did this when I went to get marked before the first surgery, but it was more comforting coming from a friend who lived with it every day.
He gave me tips such as always having a bag with spare clothes in his car and always having his ostomy supplies with him. He kept a spare ostomy bag and cleaning materials in his desk at work, in his car, and in his gym locker. That way if there was ever a leak, he could clean up, change the bag, and change his clothes if necessary. I simply began carrying a bigger purse with a wash clothe, a clean ostomy bag, a ziploc bag (to throw the dirty bag in), the powder, and the tube of adhesive paste. I never needed to use my emergency supply but better safe than sorry.
I often thought of this friend during my eight weeks with my stoma. Every time I started to feel bad for myself I just thought of him. He is the most optimistic individual I know. He is extremely active, biking and swimming regularly. He is always out socializing with friends and will be the first to admit that he eats whatever he wants. His surgery was emergent and he was not given the option of a resection due to his condition. He helped me remember that having an ileostomy was not that bad.
He reminded me that I may not always be able to control the situation, but I could control how I reacted to the situation. I could allow myself to be overcome with self-pity, with helplessness, with hopelessness. Or I could conquer the challenge with a positive attitude.
Johnny's optimism became my optimism.
Thank you Johnny.
Before I went in for surgery, a friend of the family who has a permanent ileostomy talked with me. He showed me the bags and explained how they worked. My WOC nurse also did this when I went to get marked before the first surgery, but it was more comforting coming from a friend who lived with it every day.
He gave me tips such as always having a bag with spare clothes in his car and always having his ostomy supplies with him. He kept a spare ostomy bag and cleaning materials in his desk at work, in his car, and in his gym locker. That way if there was ever a leak, he could clean up, change the bag, and change his clothes if necessary. I simply began carrying a bigger purse with a wash clothe, a clean ostomy bag, a ziploc bag (to throw the dirty bag in), the powder, and the tube of adhesive paste. I never needed to use my emergency supply but better safe than sorry.
I often thought of this friend during my eight weeks with my stoma. Every time I started to feel bad for myself I just thought of him. He is the most optimistic individual I know. He is extremely active, biking and swimming regularly. He is always out socializing with friends and will be the first to admit that he eats whatever he wants. His surgery was emergent and he was not given the option of a resection due to his condition. He helped me remember that having an ileostomy was not that bad.
He reminded me that I may not always be able to control the situation, but I could control how I reacted to the situation. I could allow myself to be overcome with self-pity, with helplessness, with hopelessness. Or I could conquer the challenge with a positive attitude.
Johnny's optimism became my optimism.
Thank you Johnny.
Wednesday, June 6, 2012
The First Surgery
The emotions you go through are vast, overwhelming at times, and completely normal.
In the weeks leading up to the surgery, it was all I could think about. It consumed my life. I just wanted to shout about what was about to happen to me. I would go from extremely encouraged and positive one moment, to scared out of my mind the next.
I was excited to see how great I would feel once I was healed, but I was scared of the steps I would need to take to get there. I saw it as the greatest opportunity of my lifetime, but I was scared of the long road.
I was VERY scared about the bag. I was scared about my clothes fitting over it. I was scared about holding my daughter. The stoma is usually an inch or two south of the belly button and about three to four inches to the right side. I hold my daughter on my right hip. It sounds silly now, but I was really scared about not being able to hold her the way I normally had. I was scared that I wouldn't be strong enough to empty it, or change it. I was scared that I wouldn't be strong enough to handle everything.
The weekend before the first surgery I had a perfect weekend. I spent time with friends and my family. I truly cherished every moment.
The day of the surgery, I was not scared. I was looking at it as just another colonoscopy. I was joking with my husband and my mother right up until the moment I was wheeled away from them and into the operating room.
I had done everything possible to prepare. I had worried enough. Worrying was going to do me no good at this point. I was going to need to wake up, put trust in my doctors and nurses, and do whatever they told me to do in order to get better as quickly as possible. My goal was to be ready for the resection as quickly as possible.
I was focused.
In the weeks leading up to the surgery, it was all I could think about. It consumed my life. I just wanted to shout about what was about to happen to me. I would go from extremely encouraged and positive one moment, to scared out of my mind the next.
I was excited to see how great I would feel once I was healed, but I was scared of the steps I would need to take to get there. I saw it as the greatest opportunity of my lifetime, but I was scared of the long road.
I was VERY scared about the bag. I was scared about my clothes fitting over it. I was scared about holding my daughter. The stoma is usually an inch or two south of the belly button and about three to four inches to the right side. I hold my daughter on my right hip. It sounds silly now, but I was really scared about not being able to hold her the way I normally had. I was scared that I wouldn't be strong enough to empty it, or change it. I was scared that I wouldn't be strong enough to handle everything.
The weekend before the first surgery I had a perfect weekend. I spent time with friends and my family. I truly cherished every moment.
The day of the surgery, I was not scared. I was looking at it as just another colonoscopy. I was joking with my husband and my mother right up until the moment I was wheeled away from them and into the operating room.
I had done everything possible to prepare. I had worried enough. Worrying was going to do me no good at this point. I was going to need to wake up, put trust in my doctors and nurses, and do whatever they told me to do in order to get better as quickly as possible. My goal was to be ready for the resection as quickly as possible.
I was focused.
Tuesday, June 5, 2012
The Surgeries
I feel as if I have learned an incredible amount about our digestive system going through this process and of course I want to share it all.
Although there are many different ways for people to have their large intestine removed (or partially removed), I am only going to talk about my experience.
I was going to have the process done in two surgeries. During the first surgery, the doctors would remove the large intestine. The surgeons would also cut my small intestine into two pieces. The top part would be pulled through an opening in my abdomen (about 1.5 inches wide), this piece of small intestine and the opening is called the stoma. The lower part of my small intestine was sutured into a J-Pouch, which would later act as my large intestine.
Since the stoma moves involuntarily and pushes out your feces without any thought or work on your part, there is a bag that attaches to you like a big bandaid that will catch the feces. This is the bag you will need to empty and change. I had my "temporary ileostomy" (stoma and its bag) for eight weeks while the lower part of the small intestine healed.
I was able to get in for my resection in eight weeks. This is when the surgeons go back in an attach the top part of the small intestine with the lower part and they close the stoma opening.
It was a piece of cake.
Monday, June 4, 2012
Preparing for Surgery
So we set a date - just about four weeks from the day I met with the surgeon.
I used those four weeks to prepare myself and my family for the surgery. I visited every blog I could. Read every piece of information I could get my hands on. I watched every video the doctor gave me. I emailed links to my family. And we talked, every time we saw each other. I wanted to make sure that my loved ones would be ready.
It made for interesting Sunday dinner conversation.
I froze dinners. I made & froze enough baby food to last Bug for at least one month. I stocked up on all the essentials: Toilet paper, cleaning supplies, toothpaste, shampoo, Tylenol, chewable vitamins, liquid vitamin C & fish oil, books to read, soduko puzzles to complete, Imodium. These all became essential when I came home following the first surgery. I even made sure that Bug had enough diapers to last her into her teen years!
And boy did I clean! The house was scrubbed & vacuumed every day. Even as I performed the bowl prep the day before the surgery I was vacuuming! If the baby hadn't been sleeping when we left for the hospital, I probably would have vacuumed one more time.
There were a few things I forgot to stock up on though. Lipton soup with saltine crackers became my favorite meal post-op. I guess many people crave salt afterwards - give into the craving. I wish I had stocked up on those in advance. My husband got really tired of running to the stores for soup and saltines. And thank you notes. I had no idea how much support I would receive going through this.
I learned that I have the greatest friends in the world.
And I should have bought more thank you notes.
I used those four weeks to prepare myself and my family for the surgery. I visited every blog I could. Read every piece of information I could get my hands on. I watched every video the doctor gave me. I emailed links to my family. And we talked, every time we saw each other. I wanted to make sure that my loved ones would be ready.
It made for interesting Sunday dinner conversation.
I froze dinners. I made & froze enough baby food to last Bug for at least one month. I stocked up on all the essentials: Toilet paper, cleaning supplies, toothpaste, shampoo, Tylenol, chewable vitamins, liquid vitamin C & fish oil, books to read, soduko puzzles to complete, Imodium. These all became essential when I came home following the first surgery. I even made sure that Bug had enough diapers to last her into her teen years!
And boy did I clean! The house was scrubbed & vacuumed every day. Even as I performed the bowl prep the day before the surgery I was vacuuming! If the baby hadn't been sleeping when we left for the hospital, I probably would have vacuumed one more time.
There were a few things I forgot to stock up on though. Lipton soup with saltine crackers became my favorite meal post-op. I guess many people crave salt afterwards - give into the craving. I wish I had stocked up on those in advance. My husband got really tired of running to the stores for soup and saltines. And thank you notes. I had no idea how much support I would receive going through this.
I learned that I have the greatest friends in the world.
And I should have bought more thank you notes.
Sunday, June 3, 2012
The Choice
The surgegeon got us in right away. He had looked at my file and the reports from my most recent colonoscopy.
It was a long talk.
He explained the procedure. He explained why people have it done. He explained the risks.
And then he looked me in the eye and said I had a choice to make: they could remove the large intestine now or later. Either way, me and my colon were not making it to the end of the road together.
My family has a history of cancer. My grandfather died of leukemia. My great uncle survived colon cancer. My mother was diagnosed with colon cancer at the age of 40. We all know the statistics. People with Ulcerative Colitis are more likely to develop colon cancer.
Maybe I was scared.
Sure I was screened all the time for colon cancer. But they could miss it. I was inflamed more of the time than not. It's easy to miss. For God's sake - they almost missed it in my mother's screening.
Maybe I was desparate.
How long could I continue living this way? The discomfort, the embarrassment, the chaos...
Maybe I was losing my mind and looking for a way out.
My husband and I weighed our options. Bug, our daughter who was five months old at the time, was not mobile yet and she was able to remember things for about two minutes. This wouldn't impact her. She wouldn't miss her MaMa. Instead she would have a healthy MaMa when she was older. One that could sit through her sporting events, go shopping with her, enjoy life with her.
I had just enough sick time saved from my job. We could make it work financially even if that meant some sacrifices.
I was young and strong enough to fight.
The Choice was glaringly obvious.
It was a long talk.
He explained the procedure. He explained why people have it done. He explained the risks.
And then he looked me in the eye and said I had a choice to make: they could remove the large intestine now or later. Either way, me and my colon were not making it to the end of the road together.
My family has a history of cancer. My grandfather died of leukemia. My great uncle survived colon cancer. My mother was diagnosed with colon cancer at the age of 40. We all know the statistics. People with Ulcerative Colitis are more likely to develop colon cancer.
Maybe I was scared.
Sure I was screened all the time for colon cancer. But they could miss it. I was inflamed more of the time than not. It's easy to miss. For God's sake - they almost missed it in my mother's screening.
Maybe I was desparate.
How long could I continue living this way? The discomfort, the embarrassment, the chaos...
Maybe I was losing my mind and looking for a way out.
My husband and I weighed our options. Bug, our daughter who was five months old at the time, was not mobile yet and she was able to remember things for about two minutes. This wouldn't impact her. She wouldn't miss her MaMa. Instead she would have a healthy MaMa when she was older. One that could sit through her sporting events, go shopping with her, enjoy life with her.
I had just enough sick time saved from my job. We could make it work financially even if that meant some sacrifices.
I was young and strong enough to fight.
The Choice was glaringly obvious.
Saturday, June 2, 2012
How Much More?
I had been lucky through the pregnancy. I had a small flare around week 32. I was able to quickly control it with Canasa suppositories. I did not start my medications.
Not three weeks after giving birth, my colitis flared.
With a vengance.
I was going to the bathroom over 20 times a day. I was dropping weight rapidly. I was no longer able to control my bowel movements. Things were spiraling out of control and I was overwhelmed by feelings of helplessness and hopelessness.
Dr. G. never said "I told you so" - but we began the steroid cycle again. After three months at 60mg of prednizone, I was still bleeding. He did a colonscopy.
I will never forget the moment in recovery. Dr. G. sat down on my bed. He said that it was good news. That he felt I didn't need surgery. That things didn't look as bad as he thought they would. He wanted to continue with our current course of treatment.
I cried. I was overtaken by depression. I didn't understand how he could say that things weren't that bad. He must not have understood what I was telling him.
The trips to the bathroom, not sleeping because of the trips to the bathroom, the accidents when the trip to the bathroom was simply too long...Had he not been listening?
What type of life was this?
I was becoming weaker by the day. Melting away.
How much longer would I be able to care for my daughter?
How far did the disease have to go? How far was far enough? How much more could I take?
My mother and my sister suggested I take control of my colitis and my health. I called Dr. G.'s office and asked for the name of a colorectal surgeon.
Not three weeks after giving birth, my colitis flared.
With a vengance.
I was going to the bathroom over 20 times a day. I was dropping weight rapidly. I was no longer able to control my bowel movements. Things were spiraling out of control and I was overwhelmed by feelings of helplessness and hopelessness.
Dr. G. never said "I told you so" - but we began the steroid cycle again. After three months at 60mg of prednizone, I was still bleeding. He did a colonscopy.
I will never forget the moment in recovery. Dr. G. sat down on my bed. He said that it was good news. That he felt I didn't need surgery. That things didn't look as bad as he thought they would. He wanted to continue with our current course of treatment.
I cried. I was overtaken by depression. I didn't understand how he could say that things weren't that bad. He must not have understood what I was telling him.
The trips to the bathroom, not sleeping because of the trips to the bathroom, the accidents when the trip to the bathroom was simply too long...Had he not been listening?
What type of life was this?
I was becoming weaker by the day. Melting away.
How much longer would I be able to care for my daughter?
How far did the disease have to go? How far was far enough? How much more could I take?
My mother and my sister suggested I take control of my colitis and my health. I called Dr. G.'s office and asked for the name of a colorectal surgeon.
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