It's funny, before I was diagnosed with Ulcerative Colitis I never carried a purse. Now 10 years later the size of my purse is determined by the amount of medical supplies I need. My purse was it's largest during my ostomy days when I had to have everything needed in case of an appliance change. Now my purse is smaller, but still holds the keys to my health.
I am nicknamed the traveling pharmacy, and you can hear me coming from yards away by the sound of the pills in their containers as I walk. Looking in my purse today I have 4 prescription bottles and a supplement. So no wonder I sound like a tic-tac case when walking. These medications include my antibiotic, pain medication, and two different types of muscle relaxers. I also have Gas-X and Pepto Bismal for those moments that I need them. At the bottom of my purse is my butt cream, Calmoseptine. I never leave home without it. It is the fire extinguisher for when my rear decides it's going to ignite. There is also Burt's Bees lip balm. A side effect to always being dehydrated is chapped lips. Another thing I never leave home without. The final IBD item in my purse is a pad. Most girls have one in their purse, but mine is for butt leaks and not girlie times.
Then of course is the usual stuff in a purse. I have my wallet with hopefully some cash, credit/debit cards, store discount cards, and the much needed insurance card and list of medications. I carry my check book (dated I know), and a pen. There is some gum and tissues. There are business cards. A must for any real estate agent. Sometimes there is my cell phone, sometimes it never actually makes it into my purse. Another thing I always have with me although not in my purse is water.
It sounds like a lot, but it isn't so much. My purse is small for today's standards. I've beginning to get used to carrying a purse after 10 years. Although there are times I still leave it behind.
Sunday, November 4, 2012
Saturday, November 3, 2012
Discussions With A Colo-Rectal Surgeon
It is never fun going to the doctor. It is difficult to try to talk to the doctor about your ailments while he is hurrying to his next appointment. Dispite this I have had some interesting moments at my colorectal surgeon's office.
Not too long ago I was referred back to my colorectal surgeon because an MRI detected abscesses in my abdomen. My GI doctor wanted me to check with a surgeon to see what the cause of the abscesses were. After doing a thorough exam including a very invasive rectal exam (in which my surgeon wanted to discuss Memorial Day plans of going to the beach), he proceeded to tell me, "It's not coming from my end."
On another occasion, before I had the surgeries, I had the joy of having a colonoscopy at Jefferson Hospital which is a teaching hospital. Think ER with Carter inserting a chest tube for the first time. As I was wheeled into the procedure room a young looking doctor comes in and goes on to tell me that he will be performing my colonospopy today, and this is his first time doing so. Don't worry he says, I will have others watching over in case there is a problem. I guess he did a splendid job with the scope because I didn't die that day, but it was determined that I needed surgery. Fast forward two months when I'm in the hospital room recovering from the colonectomy laying on my side with my rear facing the door. In walks said young (remarkably handsome) doctor. Without seeing my face he says, "Oh, I remember you!". Should I have taken this as a compliment?
But in all reality many conversations with my doctors are more serious. In fact, the reason I chose Dr. Isenberg to perform my surgeries was from the conversation I had with him during our surgery consult. I came to my appointment with both my Mom and my husband along with a folder containing two pages full of questions. Dr. Isenberg went through his usual speach about the surgery and asked if we had any questions. I could see the look on his face when I whipped out my sheets. He sat there and patiently answered each and every question. For the questions he did not have answers for he was honest and either told me where I could find the answer or that there was no way to answer that question. I felt like I was more prepared than the average person going into my surgery, and knew I was going to have someone who would listen to me during my follow-up care. These conversations are the most meaningful.
Not too long ago I was referred back to my colorectal surgeon because an MRI detected abscesses in my abdomen. My GI doctor wanted me to check with a surgeon to see what the cause of the abscesses were. After doing a thorough exam including a very invasive rectal exam (in which my surgeon wanted to discuss Memorial Day plans of going to the beach), he proceeded to tell me, "It's not coming from my end."
On another occasion, before I had the surgeries, I had the joy of having a colonoscopy at Jefferson Hospital which is a teaching hospital. Think ER with Carter inserting a chest tube for the first time. As I was wheeled into the procedure room a young looking doctor comes in and goes on to tell me that he will be performing my colonospopy today, and this is his first time doing so. Don't worry he says, I will have others watching over in case there is a problem. I guess he did a splendid job with the scope because I didn't die that day, but it was determined that I needed surgery. Fast forward two months when I'm in the hospital room recovering from the colonectomy laying on my side with my rear facing the door. In walks said young (remarkably handsome) doctor. Without seeing my face he says, "Oh, I remember you!". Should I have taken this as a compliment?
But in all reality many conversations with my doctors are more serious. In fact, the reason I chose Dr. Isenberg to perform my surgeries was from the conversation I had with him during our surgery consult. I came to my appointment with both my Mom and my husband along with a folder containing two pages full of questions. Dr. Isenberg went through his usual speach about the surgery and asked if we had any questions. I could see the look on his face when I whipped out my sheets. He sat there and patiently answered each and every question. For the questions he did not have answers for he was honest and either told me where I could find the answer or that there was no way to answer that question. I felt like I was more prepared than the average person going into my surgery, and knew I was going to have someone who would listen to me during my follow-up care. These conversations are the most meaningful.
Friday, November 2, 2012
I Had To Cross A Field Of Screaming Fire To See The Moonlight On The River
"I had to cross a field of screaming fire to see the moonlight on the river" is a line from a song by one of my favorite bands, Okkervil River. This may not be the most inspirational quote, but it speaks to my recovery not just from the surgeries, but also my eating disorder.
In my 20's I went through a lot. Not only was I just starting life out of college, but I was recently diagnosed with Ulcerative Colitis as well. The stress that I felt from my life whirling out of control led me to an eating disorder. The eating disorder was a great coping mechanism because it gave me that sense of control while keeping the UC symptoms under wraps by not eating.
It was a daily battle for me between the demon voices in my head and the volcano erupting in my stomach. I went inpatient for my eating disorder twice while also doing intensive out patient three times. When I wasn't hospitalized for my eating disorder, I was hospitalized for complications with Ulcerative Colitis. One for C-diff (a bacterial infection in the gut), one for a gall bladder attack followed by another to have the gall bladder removed, and three more for severe UC flares where I was malnurished and anemic. Between the eating disorder and UC I spent at least one week in a hospital every year for 8 years. When I wasn't seeing one doctor I was seeing another.
There were days that I felt I could not go on. I felt things would be so much better if I didn't have to deal with anything anymore, and my loved ones no longer had to deal with me either. Suicide was on the fore front of my brain, and I would fantasize about it often. Except I knew this was not the answer.
After years of therapy and a lot of determination on my part I finally gained control over my eating disorder. I have to admit the increasing toll Ulcerative Colitis was taking on my body was a big motivator. Shortly after I began eating again, I was approved for the j-pouch surgeries. I was on the road to getting my life back.
It's been two years since I had my colon removed and three since I started my recovery of anorexia. I still have my struggles, but the world has opened up. My life is not a constant worry. I can focus on friends, family, work and not just myself. The little things in life such as going out to dinner with my husband, exercising, and listening to music on the beach bring me such joy. I feel like a have a better grasp of the beauty life gives by going through the trauma of my 20's. Now in my 30's I am able to see the moonlight on the river, and have the rest of my life to enjoy it.
In my 20's I went through a lot. Not only was I just starting life out of college, but I was recently diagnosed with Ulcerative Colitis as well. The stress that I felt from my life whirling out of control led me to an eating disorder. The eating disorder was a great coping mechanism because it gave me that sense of control while keeping the UC symptoms under wraps by not eating.
It was a daily battle for me between the demon voices in my head and the volcano erupting in my stomach. I went inpatient for my eating disorder twice while also doing intensive out patient three times. When I wasn't hospitalized for my eating disorder, I was hospitalized for complications with Ulcerative Colitis. One for C-diff (a bacterial infection in the gut), one for a gall bladder attack followed by another to have the gall bladder removed, and three more for severe UC flares where I was malnurished and anemic. Between the eating disorder and UC I spent at least one week in a hospital every year for 8 years. When I wasn't seeing one doctor I was seeing another.
There were days that I felt I could not go on. I felt things would be so much better if I didn't have to deal with anything anymore, and my loved ones no longer had to deal with me either. Suicide was on the fore front of my brain, and I would fantasize about it often. Except I knew this was not the answer.
After years of therapy and a lot of determination on my part I finally gained control over my eating disorder. I have to admit the increasing toll Ulcerative Colitis was taking on my body was a big motivator. Shortly after I began eating again, I was approved for the j-pouch surgeries. I was on the road to getting my life back.
It's been two years since I had my colon removed and three since I started my recovery of anorexia. I still have my struggles, but the world has opened up. My life is not a constant worry. I can focus on friends, family, work and not just myself. The little things in life such as going out to dinner with my husband, exercising, and listening to music on the beach bring me such joy. I feel like a have a better grasp of the beauty life gives by going through the trauma of my 20's. Now in my 30's I am able to see the moonlight on the river, and have the rest of my life to enjoy it.
Thursday, November 1, 2012
Why I Write About My Health
I started this blog for two reasons. The first being a way for me to vent. There are many times that feelings and frustrations build up, and writing helps relieve that tension. There are other times that I want to shout out to the world when something good happens. This blog has been a great outlet for me to do this. My husband no longer has to hear me repeat the same things over and over again, and I get the relief I need. It's a win-win situation.
The other reason is because most of what I saw on the internet relating to chronic pouchitis was such a downer. I was diagnosed with chronic pouchitis almost 1 year to the day after my first surgery. After searching chronic pouchitis on the internet all I saw was the negative. I could not find much that would give me hope that I could live the life I wanted after surgery. As I learned to live with chronic pouchitis, I wanted to share with others that it is possible. I wanted to share my experience with a positive, uplifting blog to help others in the same position I once was in.
I cannot say how many people I have helped, but I can say this blog has helped me tremedously.
The other reason is because most of what I saw on the internet relating to chronic pouchitis was such a downer. I was diagnosed with chronic pouchitis almost 1 year to the day after my first surgery. After searching chronic pouchitis on the internet all I saw was the negative. I could not find much that would give me hope that I could live the life I wanted after surgery. As I learned to live with chronic pouchitis, I wanted to share with others that it is possible. I wanted to share my experience with a positive, uplifting blog to help others in the same position I once was in.
I cannot say how many people I have helped, but I can say this blog has helped me tremedously.
Monday, September 10, 2012
Two Years
On this day two years ago I had my first surgery to remove my colon, create the j-pouch, and form a temporary ileostomy. It was the first day of getting my life back.
I can remember the morning like it was yesterday. Waking at 3:00 am and packing up the car with myself, my Mom, my mother-in-law, and my loving husband. A great support system for what would be a nerve wracking morning. After parking the car I rushed to the hospital to check in. I wanted everything to get underway. I had a short wait before getting called into triage where for the one millionth time my history was taken. On this morning there was a large gas main break in California and it was showing on each television. I hoped it wasn't a bad omen.
Next I went into the first pre-op room. I was asked to dis-robe and wipe my body down with disinfectant clothes. I then put on a bear-robe which hooked up to the wall and blew warm air into my robe. Next it was time to say my goodbyes, and I was off to pre-op room #2. This is when the nerves finally began to kick in. I didn't have to be strong for anyone anymore, and the fear set in.
Without my glasses the rest is all a blur visually. In the next room I was given my IV, and another history was taken. Dr. Isenberg, my surgeon, came to great me. Then off I went the first one out the door that morning.
I remember going into the OR. I was moved to the operating table and the nurses began to strap my arms down out from my body. A mask was put over my face, and there was a lot of commotion. A count of how many people would be in the OR (not including me) was taken. I was surprised by the number, 12.
The next thing I knew I was waking up in the recovery room. I was in pain and groggy, but the nurse was right there and attended to my every need. The recovery in the hospital was slow, and took longer than usual when I developed a blockage. After 10 days I was out and ready to start my new life.
I could not image then how much different my life would be by saying goodbye to a rotten colon. I am a new person, and have more confidence than I have in years. It hasn't been an easy recovery. I have had many set backs. For every two steps forward, I would take one step back. I was very discouraged at times. I spent afternoons crying on the floor. But as time went on, fewer steps back have been taken.
Now my day revolves around what I want and not my stomach. I have gained much needed weight. Food is fun now, and not seen as the enemy. I am back to Tae Kwon Do, no longer fighting for my life but sparring for fun.
I don't regret anything in the past two years. It has taught me what matters most in my life. My health, my family, and my friends. Surgery not only physically gave me my life back, but mentally it gave me a whole new outlook on the world. It is a world of opportunities.
I can remember the morning like it was yesterday. Waking at 3:00 am and packing up the car with myself, my Mom, my mother-in-law, and my loving husband. A great support system for what would be a nerve wracking morning. After parking the car I rushed to the hospital to check in. I wanted everything to get underway. I had a short wait before getting called into triage where for the one millionth time my history was taken. On this morning there was a large gas main break in California and it was showing on each television. I hoped it wasn't a bad omen.
Next I went into the first pre-op room. I was asked to dis-robe and wipe my body down with disinfectant clothes. I then put on a bear-robe which hooked up to the wall and blew warm air into my robe. Next it was time to say my goodbyes, and I was off to pre-op room #2. This is when the nerves finally began to kick in. I didn't have to be strong for anyone anymore, and the fear set in.
Without my glasses the rest is all a blur visually. In the next room I was given my IV, and another history was taken. Dr. Isenberg, my surgeon, came to great me. Then off I went the first one out the door that morning.
I remember going into the OR. I was moved to the operating table and the nurses began to strap my arms down out from my body. A mask was put over my face, and there was a lot of commotion. A count of how many people would be in the OR (not including me) was taken. I was surprised by the number, 12.
The next thing I knew I was waking up in the recovery room. I was in pain and groggy, but the nurse was right there and attended to my every need. The recovery in the hospital was slow, and took longer than usual when I developed a blockage. After 10 days I was out and ready to start my new life.
I could not image then how much different my life would be by saying goodbye to a rotten colon. I am a new person, and have more confidence than I have in years. It hasn't been an easy recovery. I have had many set backs. For every two steps forward, I would take one step back. I was very discouraged at times. I spent afternoons crying on the floor. But as time went on, fewer steps back have been taken.
Now my day revolves around what I want and not my stomach. I have gained much needed weight. Food is fun now, and not seen as the enemy. I am back to Tae Kwon Do, no longer fighting for my life but sparring for fun.
I don't regret anything in the past two years. It has taught me what matters most in my life. My health, my family, and my friends. Surgery not only physically gave me my life back, but mentally it gave me a whole new outlook on the world. It is a world of opportunities.
Monday, August 6, 2012
My Most Embarrassing Moment
Everyone has one. It's their most embarrassing moment. I'm going to share mine. I've never told anyone, but I think it's time. I've read many embarrassing moments of others who suffer from IBD. While they are all different the one thing they have in common is the moment signifies the exact time the person realized that they have lost control of their body. Mine is no different.
My most embarrassing moment happened when I was working my part-time job. The funny thing is I had to take a part-time job to cover the medical bills I had because I was sick. So at one of the sickest times in my life I was working 60-70 hours a week instead of resting. The moment began when I was on my way to work early Sunday morning. I suddenly felt the urge to go to the bathroom. For most people this wouldn't be a problem, but for someone with IBD it is a very BIG problem. So instead of being able to hold it, I pooped my pants right there on the highway driving my car.
Knowing every bathroom in Chester County I knew the park had public bathrooms that would be open early on a Sunday morning. I parked my car across the street and speed walked to the bathroom. Without heat the bathroom was cold, but no one was there. I entered a stall and cleaned myself up the best I could. Then I threw out my underwear in the trash, and walked out of the stall half naked to the sink. I washed my pants off in the sink and dried them under the hand dryer. How lucky was I that no one entered the bathroom as I stood with my nether regions exposed.
Being as stubborn as I was I continued on to work. Hoping the grocery store next to my job (the only store open so early) sold underwear, I quickly skipped in to take up peek. Unfortunately, no underwear was sold. I couldn't bear to buy a pack of diapers, so I went to work commando. I worked my full shift without underwear hoping not to have another accident. Though I knew nobody knew, I felt so exposed and humiliated.
This wasn't my first accident, and it wasn't my last, but it certainly was my most embarrassing. I had lost total control over my body, and was standing in a public bathroom half naked for all the world to see. I worked an entire shift without underwear in somewhat washed pants. It took awhile to recover from the shame I felt that day.
My most embarrassing moment happened when I was working my part-time job. The funny thing is I had to take a part-time job to cover the medical bills I had because I was sick. So at one of the sickest times in my life I was working 60-70 hours a week instead of resting. The moment began when I was on my way to work early Sunday morning. I suddenly felt the urge to go to the bathroom. For most people this wouldn't be a problem, but for someone with IBD it is a very BIG problem. So instead of being able to hold it, I pooped my pants right there on the highway driving my car.
Knowing every bathroom in Chester County I knew the park had public bathrooms that would be open early on a Sunday morning. I parked my car across the street and speed walked to the bathroom. Without heat the bathroom was cold, but no one was there. I entered a stall and cleaned myself up the best I could. Then I threw out my underwear in the trash, and walked out of the stall half naked to the sink. I washed my pants off in the sink and dried them under the hand dryer. How lucky was I that no one entered the bathroom as I stood with my nether regions exposed.
Being as stubborn as I was I continued on to work. Hoping the grocery store next to my job (the only store open so early) sold underwear, I quickly skipped in to take up peek. Unfortunately, no underwear was sold. I couldn't bear to buy a pack of diapers, so I went to work commando. I worked my full shift without underwear hoping not to have another accident. Though I knew nobody knew, I felt so exposed and humiliated.
This wasn't my first accident, and it wasn't my last, but it certainly was my most embarrassing. I had lost total control over my body, and was standing in a public bathroom half naked for all the world to see. I worked an entire shift without underwear in somewhat washed pants. It took awhile to recover from the shame I felt that day.
Tuesday, July 17, 2012
Back to Black
Today is the day. I will be returning to the art of Tae Kwon Do after an over 8 year hiatus. I am full of nervous energy and excitement. I am so excited to return to the sport I loved all those years ago. Now I'm entering back into the sport at a whole new angle.
I will be starting at a new gym. Unfortunately, not long after I left my old gym to battle my own illnesses my master passed away from his illness, luekemia. Master Wilson was one of the greatest men I have ever met. I cannot say a single bad word about the man, and I don't know if a new master will be able to take his place. Will he still have the caring always there for you attitude, but with the authoritarian leadership? Most importantly, will he make me feel welcome while accepting my faults?
Secondly, I'm entering again as a black belt. I earned my black belt just before I left for my first hospitalization for anorexia. Two weeks prior to be exact. I returned for a brief time after the hospitalization, but never was able to keep my health up to stay long term. So basically, I left the sport right after receiving my black belt. I have little training as a black belt and mostly forget everything up to that point. I am incredibly out of shape, and don't know if I could even do one push-up these days let alone train with the other black belts. I will look the part of the white belt lost in a sea of black.
The other obstacle is the locker room. There will be no hiding my scars. I hope these girls are accepting of my battle. I hope I am not judged as weak, but instead seen for my strength that is still left in my heart. I hope I do not get to many stares, instead I welcome the questions.
I anxiously await the thrill I have when practicing the art of Tae Kwon Do. The power I feel. The control I feel I have over my body. The clarity it gives to my mind. Most of all I can't wait for the normalcy this will give me to my life. It's another step back to how things were before IBD began chipping things away.
I will be starting at a new gym. Unfortunately, not long after I left my old gym to battle my own illnesses my master passed away from his illness, luekemia. Master Wilson was one of the greatest men I have ever met. I cannot say a single bad word about the man, and I don't know if a new master will be able to take his place. Will he still have the caring always there for you attitude, but with the authoritarian leadership? Most importantly, will he make me feel welcome while accepting my faults?
Secondly, I'm entering again as a black belt. I earned my black belt just before I left for my first hospitalization for anorexia. Two weeks prior to be exact. I returned for a brief time after the hospitalization, but never was able to keep my health up to stay long term. So basically, I left the sport right after receiving my black belt. I have little training as a black belt and mostly forget everything up to that point. I am incredibly out of shape, and don't know if I could even do one push-up these days let alone train with the other black belts. I will look the part of the white belt lost in a sea of black.
The other obstacle is the locker room. There will be no hiding my scars. I hope these girls are accepting of my battle. I hope I am not judged as weak, but instead seen for my strength that is still left in my heart. I hope I do not get to many stares, instead I welcome the questions.
I anxiously await the thrill I have when practicing the art of Tae Kwon Do. The power I feel. The control I feel I have over my body. The clarity it gives to my mind. Most of all I can't wait for the normalcy this will give me to my life. It's another step back to how things were before IBD began chipping things away.
Subscribe to:
Posts (Atom)