In honor of world IBD day I thought I'd come back to my blog. It's been awhile since I visited and lots have happened. In either case, I have adapted to life as a different normal from what most experience.
Normal now consists of 6-12 bathroom trips a day. I wish it was only to pee, but alas it is number 2 that drives me to the bathroom. What a normal person would find incomprehensible I find good. This is better than the 20-30+ times a day I went in the past. I still experience urgency, but it is not a every moment kind of thing. Fortunately, now the accidents at night have stopped. Imagine how embarrassing it is to have an accident in the middle of the night when you are married. I'm still not far enough removed from this as I still were pads to bed every night. Yup, that's right, a pad. And don't forget the pantie liners every day for the leakage.
While I may look happy, go lucky, pain is still a normal thing for me. I have severe pain about twice a week. As most recently as last week, I had to cancel appointments due to extreme abdominal pain. This isn't your normal stomach ache. This is doubled over, no relief, pain. Fortunately, this does not come often. Usually it is just a stabbing pain that I work through. Most days consist of some sort of nausea followed by bathroom trips, followed by stomach pain followed by a few bathroom trips. But yet, this is better than it was before.
I recently bought a Jawbone. I bought it for two reasons. One to keep track of my calories in/calories out. Another to track my sleep patterns. While most who track their calories and exercise are trying to lose weight, I am just trying to maintain. I have to make sure that my calories in not only match my calories out, but exceed them. Otherwise I lose much needed weight. I also track my deep sleep per night. In the short time I've had my Jawbone, I average 2 hours of deep sleep a night. Can you imagine working a full day followed by and evening with family and a workout on 2 hours a sleep per night? Yet, this is normal for me.
Another problem I face is being thin, but not sick thin. I am at a normal BMI which many still find "thin". While many do not see me as sick, I a still technically am. While, many think of me as skinny, I am not a picky eater. I wish people wouldn't judge thin as "lucky". I wish I could eat whatever I want, whenever I want. If I do, I pay a price (which I often do). What I am eating and when I am eating is still consistently on my mind. I need to plan things. Spur of the moment isn't always on option.
Life consists of a multiple of prescription and of the counter medications even though I feel "better". I am on Cipro for pouchitis and abscesses, and Tramadol for arthritis. I take Pepto Bismal and GasX every night before bed to help control accidents. There are other medications, but these are the ones I take every day no matter what. This is what I do to stay healthy. Otherwise it's back to square one, the hospital.
While this may all seem to be bad, it is light years beyond where I was 4 years ago. I am able to work full time. I help instruct Tae Kwon Do. I volunteer at a no-kill cat shelter. I spend time with my husband. And I enjoy my hobbies of going to concerts and spending time outdoors. All things I couldn't image doing 4 years ago. Four years ago I was existing; that's it. Today I am living. The reality is life with IBD is not easy, but it is still life.
Sunday, May 18, 2014
Friday, November 30, 2012
A Recap On NHBPM
I took the challenge of National Health Blog Post Month's 30 Days, 30 Posts. I have to say it was an enjoyable experience for me and I hope to those who have read my blogs this past month. I blogged every day in November to complete all 30 days. Though it was a challenge to complete some of the blogs on time with my hectic schedule and the Thanksgiving holiday, I completed it. I also learned a little. Here is what the last month has brought me.
1. My biggest day ever. One day this month I had the most hits on my blog that I have ever had in the past 11 months. This means that my word is getting out and hopefully I am helping some who are living or know someone living with IBD or a j-pouch. In the very least I hope I have brought enjoyment to those who have read the posts.
2. My most read posts this month were in no particular order: Time To Clean Out The Fridge, The Real Anorexic, To My Well Being, Discussions With A Colo-Rectal Surgeon, and to my surprise Pouch Packages. The post about What Is In My Purse also got a lot of views. It turns about people are pretty nosy and like to see inside other people's world. I have to admit I was quite shocked that Pouch Packages had so many views. I am not sure why, but I would like to think that it is because so many people care and would like to send some pouch packages to their j-pouch loved ones.
3. It's interesting to see how people have found my blog. Most of my sources are from facebook or my favorite support site, j-pouch.org, but others have found it through searches. Most of the searches are about IBD or anorexia. I have found the two most intriguing to be "pooping my pants" and "green poop". I would like to think I am helping the people searching for these, but I have a feeling some are just looks for some giggles.
4. I have also learned a lot about myself. Opening up about yourself every day for a month is bound to reveal a little something you didn't see before. I always knew music meant a lot for me, but I felt it coming up a lot more than planned in my posts. I also realized how much put a positive spin on life. I feel this has helped my recovery and who I am today in so many ways that even I cannot realize. I also realized that I may have something enjoyable for others to read about. I started this blog mostly for myself, so that I could get out of my head a little more. Within this past month I have noticed that I have reached a steady, though small, following. Maybe what I say resonates with others or hopefully it is helping someone going through the same things I have.
5. I have found joy in blogging this past month. I decided to do this challenge because many times I feel it hard to open up or cannot come up with ideas to post about myself. This challenge has forced me to open up a little more because it is hard to blog without getting a little personal and when I set a goal for myself I am determined to complete it.
There are many more ideas that I did not get to during the 30 days as each day gave two ideas to choose from. I hope to continue this zest for blogging by posting about a few other ideas on the list and a few of my own I have come up with in these past 30 days. I hope everyone who has followed me through the 30 Days, 30 Posts has enjoyed my posts as much as me and continues to follow my posts in the future. Thank you!
1. My biggest day ever. One day this month I had the most hits on my blog that I have ever had in the past 11 months. This means that my word is getting out and hopefully I am helping some who are living or know someone living with IBD or a j-pouch. In the very least I hope I have brought enjoyment to those who have read the posts.
2. My most read posts this month were in no particular order: Time To Clean Out The Fridge, The Real Anorexic, To My Well Being, Discussions With A Colo-Rectal Surgeon, and to my surprise Pouch Packages. The post about What Is In My Purse also got a lot of views. It turns about people are pretty nosy and like to see inside other people's world. I have to admit I was quite shocked that Pouch Packages had so many views. I am not sure why, but I would like to think that it is because so many people care and would like to send some pouch packages to their j-pouch loved ones.
3. It's interesting to see how people have found my blog. Most of my sources are from facebook or my favorite support site, j-pouch.org, but others have found it through searches. Most of the searches are about IBD or anorexia. I have found the two most intriguing to be "pooping my pants" and "green poop". I would like to think I am helping the people searching for these, but I have a feeling some are just looks for some giggles.
4. I have also learned a lot about myself. Opening up about yourself every day for a month is bound to reveal a little something you didn't see before. I always knew music meant a lot for me, but I felt it coming up a lot more than planned in my posts. I also realized how much put a positive spin on life. I feel this has helped my recovery and who I am today in so many ways that even I cannot realize. I also realized that I may have something enjoyable for others to read about. I started this blog mostly for myself, so that I could get out of my head a little more. Within this past month I have noticed that I have reached a steady, though small, following. Maybe what I say resonates with others or hopefully it is helping someone going through the same things I have.
5. I have found joy in blogging this past month. I decided to do this challenge because many times I feel it hard to open up or cannot come up with ideas to post about myself. This challenge has forced me to open up a little more because it is hard to blog without getting a little personal and when I set a goal for myself I am determined to complete it.
There are many more ideas that I did not get to during the 30 days as each day gave two ideas to choose from. I hope to continue this zest for blogging by posting about a few other ideas on the list and a few of my own I have come up with in these past 30 days. I hope everyone who has followed me through the 30 Days, 30 Posts has enjoyed my posts as much as me and continues to follow my posts in the future. Thank you!
Thursday, November 29, 2012
Looking Towards 2013 And Beyond
The new year is still a little more than a month away, but I'm beginning to think of the possibilities that it can bring now. It is still exciting to me to have my health back. I am able to make plans and goals. I can truly look forward to what the future holds. Since I can't limit to myself to just one thing I want to accomplish, I will tell you about a few.
1. Continue towards my 2nd Degree black belt. It takes approximately 2-3 years to earn the second Dan as called in Tae Kwon Do. I have only been back to the sport for 4 months now and have already passed my first level test. I hope to be up to at least level 4 out of 6 by the end of 2013. This will put me on track to test for my second degree in early-mid 2014.
2. Reduce medications and doctor visits. This has been a continued goal for me since I had the surgeries two years ago. While my doctor visits and medications have gone down in that time, there is still improvement that can be done. I would like to be able to no longer see my therapist. Though I think he's great, I hope I will be able to navigate through the weeks without his help. I also would like to be able to discontinue the use of the antibiotic. I absolutely hate the fact that I am dependent on antibiotics to continue to have a good quality of life. I am under the belief that overuse of antibiotics is bad for our environment and absolutely hate the fact that I may be somehow contributing to this.
3. Take an Alaskan cruise. This has been a dream vacation of mine since I was wanting to plan my honey moon that never was. Unfortunately my health has kept me from seeing it come to fruition. Whether it was from being too sick to go or having too many medical bills to pay for the vacation. The trip will not happen in 2013 as my finances are not there to pay for the cruise, but with continued health and commissions it may be a possibility in 2014. Maybe?!
1. Continue towards my 2nd Degree black belt. It takes approximately 2-3 years to earn the second Dan as called in Tae Kwon Do. I have only been back to the sport for 4 months now and have already passed my first level test. I hope to be up to at least level 4 out of 6 by the end of 2013. This will put me on track to test for my second degree in early-mid 2014.
2. Reduce medications and doctor visits. This has been a continued goal for me since I had the surgeries two years ago. While my doctor visits and medications have gone down in that time, there is still improvement that can be done. I would like to be able to no longer see my therapist. Though I think he's great, I hope I will be able to navigate through the weeks without his help. I also would like to be able to discontinue the use of the antibiotic. I absolutely hate the fact that I am dependent on antibiotics to continue to have a good quality of life. I am under the belief that overuse of antibiotics is bad for our environment and absolutely hate the fact that I may be somehow contributing to this.
3. Take an Alaskan cruise. This has been a dream vacation of mine since I was wanting to plan my honey moon that never was. Unfortunately my health has kept me from seeing it come to fruition. Whether it was from being too sick to go or having too many medical bills to pay for the vacation. The trip will not happen in 2013 as my finances are not there to pay for the cruise, but with continued health and commissions it may be a possibility in 2014. Maybe?!
Wednesday, November 28, 2012
Dealing With Critics
Life has all sorts of challenges and one of those is facing Negative Nancys. They are everywhere we go, and it is next to impossible to avoid them. We find them at the work place, out shopping, on the internet, and even in our own family. They come in all shapes and sizes, and some are easier to deal with than others. When suffering from a chronic illness like IBD the critics can be very intimidating when attacking things we either find embarrassing or sensitive ourselves. Though people can still get to me sometimes I have found ways to let it bother me less and less.
A. The Teaser: These people are everywhere. It's the person that says comments about how skinny or chubby you are because of IBD, about how much you poop, or about how loud you are in the bathroom. We've all dealt with bullies throughout our lives, but when the teasing hits a sore spot it can make dealing with it even more difficult. I deal with it in one of two ways. If it is someone I will never see again I just laugh with them and move on. It does not pay to give them any power of you. If it is someone I face on a continuous basis I have found it best to make it clear the remarks are unacceptable. This can usually be done while being polite by just informing the person about IBD. Once the bully is fully informed of the disease they are less likely to tease you for it.
B. The Medical Expert: This is the person that always tells you how you can cure IBD. While we all know there is no cure there are many people who have heard rumors or are ill-informed and believe they know better than your doctors. Most of the time it is about something your eating or not eating or about trying the latest craze. I like to thank these people for their suggestion and let them know I will bring it up at my next doctor's appointment. I think most of these people are trying to be helpful so getting snarky back does no good. If it continues, I just politely let the person know that I have a team of doctors who have my best interest at heart and I follow their orders. If it still continues, I just avoid the person from then on.
C. The Downer: This is the person on all the support groups who has it the worst and is never going to get better. This can make your recovery even more difficult especially when you are at a low point yourself. The easiest and best way to combat the downer is to block him. If you are on a support group that this cannot be done, avoid reading his post. I feel positive, but realistic information on support sites are best. All others can be subject for ignoring.
Overall the best advice I have for dealing with critics is to not engage in an argument. Continuing conversations with teasers, medical experts, and downers furthers their hold on you. If you begin to feel uncomfortable change the subject or leave. If the problem continues, the relationship may have to come to an end. This is never an easy decision, but sometimes it is one that must be done.
A. The Teaser: These people are everywhere. It's the person that says comments about how skinny or chubby you are because of IBD, about how much you poop, or about how loud you are in the bathroom. We've all dealt with bullies throughout our lives, but when the teasing hits a sore spot it can make dealing with it even more difficult. I deal with it in one of two ways. If it is someone I will never see again I just laugh with them and move on. It does not pay to give them any power of you. If it is someone I face on a continuous basis I have found it best to make it clear the remarks are unacceptable. This can usually be done while being polite by just informing the person about IBD. Once the bully is fully informed of the disease they are less likely to tease you for it.
B. The Medical Expert: This is the person that always tells you how you can cure IBD. While we all know there is no cure there are many people who have heard rumors or are ill-informed and believe they know better than your doctors. Most of the time it is about something your eating or not eating or about trying the latest craze. I like to thank these people for their suggestion and let them know I will bring it up at my next doctor's appointment. I think most of these people are trying to be helpful so getting snarky back does no good. If it continues, I just politely let the person know that I have a team of doctors who have my best interest at heart and I follow their orders. If it still continues, I just avoid the person from then on.
C. The Downer: This is the person on all the support groups who has it the worst and is never going to get better. This can make your recovery even more difficult especially when you are at a low point yourself. The easiest and best way to combat the downer is to block him. If you are on a support group that this cannot be done, avoid reading his post. I feel positive, but realistic information on support sites are best. All others can be subject for ignoring.
Overall the best advice I have for dealing with critics is to not engage in an argument. Continuing conversations with teasers, medical experts, and downers furthers their hold on you. If you begin to feel uncomfortable change the subject or leave. If the problem continues, the relationship may have to come to an end. This is never an easy decision, but sometimes it is one that must be done.
Tuesday, November 27, 2012
My Safe Place
Everyone needs a safe place to go when they are feeling blue or life becomes overwhelming. I will quote one of my favorite lyrics to a song once again to take you to my safe place, "And if you really want to see what matters most to me just take a real short drive". My safe place isn't always just one specific place, but more of a general feel.
I love the outdoors, so the closer to nature I can be the better I feel. I like to run away from people to hide. This is why I like the trails in and around Chester County. There are trails that go through neighborhoods, trails that go through fields, trails that go through parks, and trails that go through woods. Whatever kind of scenery I want to enjoy there is a trail for within a short drive from my home.
I like to get out to feel the sun on my skin, smell the scents in the breeze, and listen to the sounds of nature. I like to get out and move whether that includes walking or running depends on how much of an escape I need. Sometimes I keep moving the entire time. Other times I stop by a pond or stream or climb into the rocks to get away. When I am secluded I feel like the only person on Earth.
I like all the walking trails in Chester County, but my favorite is at East Goshen Park. I like this one the best because it is where my husband and I would take our first walks together. It is also the spot I chose to have my wedding ceremony at. It brings back all the good times I have had. While there is always a lot of people walking or running on the East Goshen Park walking path I can still feel at peace.
So whenever I feel like I need an escape from the pressures of the world or my ailments I hop in the car and take a real short drive. I don't always tell people where I'm going or when I'll be back. There is nothing like the feeling of being at one with nature and time standing still.
I love the outdoors, so the closer to nature I can be the better I feel. I like to run away from people to hide. This is why I like the trails in and around Chester County. There are trails that go through neighborhoods, trails that go through fields, trails that go through parks, and trails that go through woods. Whatever kind of scenery I want to enjoy there is a trail for within a short drive from my home.
I like to get out to feel the sun on my skin, smell the scents in the breeze, and listen to the sounds of nature. I like to get out and move whether that includes walking or running depends on how much of an escape I need. Sometimes I keep moving the entire time. Other times I stop by a pond or stream or climb into the rocks to get away. When I am secluded I feel like the only person on Earth.
I like all the walking trails in Chester County, but my favorite is at East Goshen Park. I like this one the best because it is where my husband and I would take our first walks together. It is also the spot I chose to have my wedding ceremony at. It brings back all the good times I have had. While there is always a lot of people walking or running on the East Goshen Park walking path I can still feel at peace.
So whenever I feel like I need an escape from the pressures of the world or my ailments I hop in the car and take a real short drive. I don't always tell people where I'm going or when I'll be back. There is nothing like the feeling of being at one with nature and time standing still.
Monday, November 26, 2012
What I Really Do
I have to admit that I like these "What I Really Do" memes, so I created one for j-pouchers.
What my family thinks I do: There is no hiding from your family. They are around you all the time and see you through the thick and thin. This is why my family knows what it really sounds like for me to go to the bathroom, and why they think I am setting off explosives in the toilet.
What my friends think I do: I like to sugar coat things for my friends. Who wants to listen to me complain all the time especially about poop and blood? This is why my friends know I go to the bathroom a lot, but what they don't know is what really happens there. For all I know they could think I do poop rainbows, kittens (I have enough of them), and butterflies.
What my co-workers think I do: The average person spends 3 years of their life going to the bathroom. A j-pouch will spend at least 10x that. Not only do we go to the bathroom more often, but we take longer when we are there. This is why my co-workers think I am escaping every time I go. Who wouldn't want extra breaks during the day? No matter how much I wish this were the truth, it is not.
What my cats think I do: At home I usually have at least one cat as an audience when I'm in the bathroom. For the life of my I really do not know what they are thinking, but I'm sure they do not think I am going to the bathroom. Wouldn't I need to be scratching around first? So what else would I be doing, but playing in the water. That is of course what they do.
What my doctors think I do: My doctors must think I love going to the bathroom. Why else wouldn't they be concerned that I go 8-10 times a day? They love poop talk and ask me to describe everything about my pooping experience. For them pooping is fun.
What I really do: I do everything in the bathroom. I have to multitask while I'm there or things will never get done. I have done everything from clean other parts of the bathroom, brush my teeth, eat, read, and even sleep. The one thing I have never done on the toilet though is talk on the phone, so you can rest assure there. As any j-poucher can tell you, or my family, talking on the phone while pooping is not something for phone conversations.
Sunday, November 25, 2012
Where Do I Go From Here?
Life is always changing. As things change goals change as well. It is these changing goals that help determine the path of your life. Every goal reached comes with a new opportunity to create new goals and continue to move forward. My health goals have continuously changed over time as well.
In my early 20's I didn't have any health goals. I was at my low point and didn't have many life goals let alone health goals. When so much bad happens in such a short period of time, I was scared to look towards the future. I kept looking to the past and what was. It was difficult to come to terms with the thoughts that my original goals may not happen on the timeline I had originally planned. It took a long time to begin to have enough hope to begin making health goals again.
As I reached my 30's I started to feel like I could make a difference in my health again. At this point though my only goal was to become healthy. My first step was to overcome my eating disorder. The next step was to gain control over my Ulcerative Colitis. It started with taking responsibility with my medication, and the decision to have surgery. I was on my way to reaching my goal. I knew it wouldn't happen over night, but that I could get there.
Now my goals as a patient continue to evolve. I want to maintain my new found health. This is a difficult process that requires my constant attention. I need to watch what I eat because neglecting my diet can lead to digestive unrest. I also need to vigilant of my medication, and try not to miss dosages. I have to keep an eye on my weight to be sure I am not losing weight. Weight loss can be the first sign of a flare or a signal that maybe life is becoming too stressful and I am returning to my old ways of coping without food. I also am thinking of the future and how I will be aging. I want to be fit and active to keep a healthy heart and lungs. As my parents reach seniority it has made me realize what small changes mean for the long run. My health goals will continue to change as I grow older and different things pop up. That's the best things about goals. They can always be modified for what stone you land on next.
In my early 20's I didn't have any health goals. I was at my low point and didn't have many life goals let alone health goals. When so much bad happens in such a short period of time, I was scared to look towards the future. I kept looking to the past and what was. It was difficult to come to terms with the thoughts that my original goals may not happen on the timeline I had originally planned. It took a long time to begin to have enough hope to begin making health goals again.
As I reached my 30's I started to feel like I could make a difference in my health again. At this point though my only goal was to become healthy. My first step was to overcome my eating disorder. The next step was to gain control over my Ulcerative Colitis. It started with taking responsibility with my medication, and the decision to have surgery. I was on my way to reaching my goal. I knew it wouldn't happen over night, but that I could get there.
Now my goals as a patient continue to evolve. I want to maintain my new found health. This is a difficult process that requires my constant attention. I need to watch what I eat because neglecting my diet can lead to digestive unrest. I also need to vigilant of my medication, and try not to miss dosages. I have to keep an eye on my weight to be sure I am not losing weight. Weight loss can be the first sign of a flare or a signal that maybe life is becoming too stressful and I am returning to my old ways of coping without food. I also am thinking of the future and how I will be aging. I want to be fit and active to keep a healthy heart and lungs. As my parents reach seniority it has made me realize what small changes mean for the long run. My health goals will continue to change as I grow older and different things pop up. That's the best things about goals. They can always be modified for what stone you land on next.
Saturday, November 24, 2012
If I Had An Unlimited Amount Of Energy
For me it isn't about having more time in the day. In fact there are many times that I don't sleep at night giving me that extra time that is often needed. What I need is more energy. I am always tired and fatigued. I can't sit down and watch TV without falling asleep. If I stop moving, it is next to impossible to start again. So if I had more energy this is what I would do.
1. Play more with my cats. I love all my cats to death, but I feel I neglect them sometimes. Besides cuddling together I don't spend much time with them. I would love to play with them with all the cool interactive toys I have bought for them. Instead I grow tired and they usually end up bickering between each other like human kids.
2. Catch up on my TIVO. As I said I cannot watch TV without falling asleep. This makes watching television shows that I DVRed next to impossible. My husband and I are 3 weeks behind on all our favorite shows, so please stop posting or talking about them.
3. Clean my house. Cleaning when you feel like you're moving through mud is HARD. I usually end up just doing the minimal required to make things look good. My house needs a deep clean. I am a neat freak and this drives me absolutely crazy. I would love to start in one room and tear everything apart, clean it, and put it back together again.
4. Remember things. I am so forgetful. I blame this on being tired; so tired that I can't think straight. If I had more energy I wouldn't forget all the little things. Things like my keys when leaving the house, groceries at the grocery store, or what I came upstairs for. I also wouldn't forget some big stuff too like the concert tickets on my way to a show making me buy a second set. My forgetfulness is costing me money.
5. Spend more time with my friends. Unfortunately, my friends get put on hold because I'm tired. With the all errands, working, cleaning, and other responsibilities of being an adult, my friends usually get left behind. I would like to get together with my friends more often. It would be nice to go out in the evenings or spend a day shopping, but these things require energy that I don't always have.
This is an improvement from where I was just a year ago. Then it was a struggle to get through the work day or spend any time with my husband. I never worked out making me feel even more fatigued. My energy levels are slowly increasing, but I am still not where I was before UC.
1. Play more with my cats. I love all my cats to death, but I feel I neglect them sometimes. Besides cuddling together I don't spend much time with them. I would love to play with them with all the cool interactive toys I have bought for them. Instead I grow tired and they usually end up bickering between each other like human kids.
2. Catch up on my TIVO. As I said I cannot watch TV without falling asleep. This makes watching television shows that I DVRed next to impossible. My husband and I are 3 weeks behind on all our favorite shows, so please stop posting or talking about them.
3. Clean my house. Cleaning when you feel like you're moving through mud is HARD. I usually end up just doing the minimal required to make things look good. My house needs a deep clean. I am a neat freak and this drives me absolutely crazy. I would love to start in one room and tear everything apart, clean it, and put it back together again.
4. Remember things. I am so forgetful. I blame this on being tired; so tired that I can't think straight. If I had more energy I wouldn't forget all the little things. Things like my keys when leaving the house, groceries at the grocery store, or what I came upstairs for. I also wouldn't forget some big stuff too like the concert tickets on my way to a show making me buy a second set. My forgetfulness is costing me money.
5. Spend more time with my friends. Unfortunately, my friends get put on hold because I'm tired. With the all errands, working, cleaning, and other responsibilities of being an adult, my friends usually get left behind. I would like to get together with my friends more often. It would be nice to go out in the evenings or spend a day shopping, but these things require energy that I don't always have.
This is an improvement from where I was just a year ago. Then it was a struggle to get through the work day or spend any time with my husband. I never worked out making me feel even more fatigued. My energy levels are slowly increasing, but I am still not where I was before UC.
Friday, November 23, 2012
Time To Clean Out The Fridge
When I tell someone that I no longer have a colon they often ask what it is I eat. The thing is is that it's not much different than when I was a healthy young teen before Ulcerative Colitis grabbed hold of me.
Shelf 1: You can see the top shelf is full of some colorful bowls. I am making a cake for my mother-in-law's surprise 60th birthday party. I can talk about it here because she doesn't get on the Internet. I'm not a good baker, but I love decorating the cake. It is a great stress reliever. In the red container is a large bowl of stuffing for my husband's Thanksgiving left overs. He can't leave home without it.
Shelf 2: This isn't as full as it usually is because of recent party nights, but this is our liquid shelf. It is mostly my husband's drinks because I like my drinks at room temperature. It's hard to see, but the whole back of the shelf is beer. Like I said it's a little empty. The front has my husband's creamer and Gatorade; two things I cannot stand. And there is the always present salsa.
Shelf 3: More drinks and staple items. This is the shelf with the tall drinks. You can see my husband's ice tea and an unfinished water of his. You can also see my almond milk in which I take the VSL#3DS located right next to it. There are two more boxes behind it. Next to that is some butter and some regular low fat milk behind the drinks. I only use the low fat milk for cooking or the icing located on the top shelf. I can no longer drink cow's milk without lots of gas and trips to the potty.
The Drawers: These are also pretty empty. One side has some left over apples from my husband's lunches. The other side is cheese sticks which are a great quick snack for me. My pouch loves cheese, and it is something I hated prior to surgeries. Goes to show sometimes tastes change with surgery.
The Door: I love condiments, so the door of the fridge is always full. There are lots of dressings and marinades for meats to make them more tender. There is hot sauce and horseradish because I like things spicy even after my takedown. There is also a huge container of Parmesan cheese for my husband who eats more cheese than spaghetti on his spaghetti dinner. The best thing is the bottle of Victory's Red Thunder beer. A limited release beer released on Wednesday that combines a porter and red wine. Yummy!
The Freezer: What's in the freezer is not that interesting mostly because it's usually pretty empty. I have some gluten free waffles, some left overs that will never be touched, and some frozen meats for another day. The interesting thing is what's on the front. I never used to put stuff on the front of the fridge, but recently I've started. There is our weekly menu and important phone numbers. Mostly so my husband knows what to expect, but partly for me because I'm always forgetting what I bought to make for the week. There is my gym schedule and recycling rules. I didn't know recycling could be so difficult. Then there are pictures of some people important to me. Some people might recognize a picture or two. There are also an unisperational picture from my inspirational kitty calendar. It was too funny not to keep.
So now you see what's in my fridge and an opening into a little more about me.
Thursday, November 22, 2012
Giving Thanks
It's Thanksgiving and there is nothing more appropriate than to write about what I am most thankful for.
1. My Health: I am always thankful for when my health is good. I never now when the next flare will come and I will feel horrible. So I never take a good health day for granted. It is usually something that people learn as they grow older in life, but thanks to this disease I have been fortunate to learn it early on.
2. My Family: Without my family's support I don't think I would have been able to get though the last 10 years. They have always been my rock to lean on. They have supported my through hospital visits, through times when I couldn't be there for them, and never grew tired of me.
3. On-Line Support Groups: J-pouch surgeries are not easy to get through. It is both physically and mentally draining, and there are not many people you can turn to that have gone through it themselves. I was lucky enough to have the surgery in a day and age where everything is on the Internet. I have found wonderful people who have supported me in low times both on facebook and j-pouch.org.
4. My Friends: I have great friends that never grow tired of me talking about poop. At least they don't say they do. I am able to be frank with what I am going through without feeling embarrassed. My friends have never treated me differently for my disease.
5. My Boss: I have a great boss. He was supportive of what I was going through, and gives me time off for doctor's appointments. I was given long leaves for hospitalizations with full pay. Even though he doesn't understand exactly what the disease is, he still asks questions. He doesn't let my illness define me and my ability to do my job.
Wednesday, November 21, 2012
Getting Through J-Pouch Surgery Without Losing Your Mind
There is no doubt that our mental health is tied to our physical health making it even more of a reason to focus not only on the physical body, but on our minds as well. This is especially true during the long recovery of the j-pouch surgeries. Many surgeons make us aware of the long path we will face, but we never truly appreciate how difficult it is until we are in the throws of it. Here are my tips on how to cope with j-pouch recovery or any other long term health problem.
It takes a full year or more to get back to a sense of normality after the surgeries. So why are we measuring our progress in days or weeks? Early on the pouch is a volatile creature. How it will react to something one day will be totally different than how it will react the next. It can be very frustrating to newbies who are trying to learn the ropes. The key is to keep trying new things and never totally cross something off the list. Also measure your progress in months instead of days and weeks. You will be sure to notice the improvements then and not be discouraged. The number one thing I tell people as they go into the takedown surgery is to pack your patience. You will need it.
Maintain a positive outlook by treating yourself. It's important to take care of yourself during the difficult recovery. Treats can come in many forms, and can be done no matter where you are on the recovery plane. It can be something as simple as having someone wash your hair when you still can't do it for yourself to planning a vacation for the future. Some of the things I did were paint my nails (something I don't do too often), bought a new outfit, and have some ice cream.
Get out of the house! This can be very intimidating soon after surgery whether it's your first time with the ileostomy or learning your new plumbing with the j-pouch. Start slow. I remember when I came home after my colectomy not being able to leave my house because everyone worked during the week and I couldn't drive. So just getting outside and walking up and down the block felt so nice. I was only outside for about 5-10 minutes and I never went far from the house, so this is a great first step for someone who is scared of leaks or accidents. As things progressed, I had a friend take me shopping. I started with short trips then stayed out longer and longer as I felt more encouraged.
Relieve some stress. What are your favorite stress relievers? Stock up on them pre-surgery and keep them close by throughout your recovery. Stress relief for me was as simple as watching trash TV, listening to music, playing with my kitties, and taking a nap. Have a list close by so when your feeling like your on the brink you can have a reference map. Sometimes it's hard to find ways to relax when your at the height of insanity.
Use your friends and family. This was a hard one for me because I don't like to rely on other people. But letting others cook you dinner, drive you around, get things for you when you have a hard time moving on your own. Talk to them. Share what you are going through. It feels good just to get what is on your mind off your chest.
And don't forget to allow yourself to feel bad sometimes. Many of us try so hard to cover our feelings and stuff down the pain. It's good to let it out. Have a cry or two or three. It helps to let it out and move on instead of choking it in until you can't anymore. It's okay to get down sometimes, but don't let it keep you down. Remember: You will get through this and see the light at the end of the tunnel.
It takes a full year or more to get back to a sense of normality after the surgeries. So why are we measuring our progress in days or weeks? Early on the pouch is a volatile creature. How it will react to something one day will be totally different than how it will react the next. It can be very frustrating to newbies who are trying to learn the ropes. The key is to keep trying new things and never totally cross something off the list. Also measure your progress in months instead of days and weeks. You will be sure to notice the improvements then and not be discouraged. The number one thing I tell people as they go into the takedown surgery is to pack your patience. You will need it.
Maintain a positive outlook by treating yourself. It's important to take care of yourself during the difficult recovery. Treats can come in many forms, and can be done no matter where you are on the recovery plane. It can be something as simple as having someone wash your hair when you still can't do it for yourself to planning a vacation for the future. Some of the things I did were paint my nails (something I don't do too often), bought a new outfit, and have some ice cream.
Get out of the house! This can be very intimidating soon after surgery whether it's your first time with the ileostomy or learning your new plumbing with the j-pouch. Start slow. I remember when I came home after my colectomy not being able to leave my house because everyone worked during the week and I couldn't drive. So just getting outside and walking up and down the block felt so nice. I was only outside for about 5-10 minutes and I never went far from the house, so this is a great first step for someone who is scared of leaks or accidents. As things progressed, I had a friend take me shopping. I started with short trips then stayed out longer and longer as I felt more encouraged.
Relieve some stress. What are your favorite stress relievers? Stock up on them pre-surgery and keep them close by throughout your recovery. Stress relief for me was as simple as watching trash TV, listening to music, playing with my kitties, and taking a nap. Have a list close by so when your feeling like your on the brink you can have a reference map. Sometimes it's hard to find ways to relax when your at the height of insanity.
Use your friends and family. This was a hard one for me because I don't like to rely on other people. But letting others cook you dinner, drive you around, get things for you when you have a hard time moving on your own. Talk to them. Share what you are going through. It feels good just to get what is on your mind off your chest.
And don't forget to allow yourself to feel bad sometimes. Many of us try so hard to cover our feelings and stuff down the pain. It's good to let it out. Have a cry or two or three. It helps to let it out and move on instead of choking it in until you can't anymore. It's okay to get down sometimes, but don't let it keep you down. Remember: You will get through this and see the light at the end of the tunnel.
Tuesday, November 20, 2012
If I Had To Do It All Over Again
I do not live with regrets. Regret is a four letter word. Yeah I know it's six, but it is a foul word that I never use in my vocabulary. Regret means you wish it never happened. Every mistake I have made has had a purpose in my life, and I do not wish it never occurred. Instead I have grown from them and they shaped me into who I am today.
However, there are things I would change if I could. One of those things is something I still do to this day. The one thing I would do if I could do it all again is listen to my body. I can be very stubborn when I want to be, and I am most stubborn with how I feel. I have a huge phobia of being portrayed as weak, so I carry on acting normal no matter how sick I may feel. This has got to change.
I learned to ignore cues from my body long ago. It intensified when I became anorexic because I did not want to listen to the hunger cries. Ulcerative Colitis also had it's hand because I wanted to ignore the pain and the fatigue. I would push through each signal my body gave me just so that I could do what I wanted to do despite the consequences. Each time I continued through the screams I found myself in the hospital.
I remember clearly the summer of my last flare and the beginning of the end of my colon. I could feel myself getting weaker and weaker. I could see myself turning white as a ghost. I could no longer eat without pain and finding myself living in the bathroom. Fevers would come each night leaving me shivering in the peak of the summer. Yet I continued to work 12 hour days doing my full time job during the day and showing houses in the evenings. I couldn't say no. I remember how tired I was on the 4th of July going to picnics and refusing all foods except for the safest, smallest amounts. Then I had a routine doctor's appointment that ended up changing my life. Soon as my GI doctor walked into the exam room he said to me, "Which hospital are you going to?" My husband had predicted it that morning when he said, "I'll see you later tonight in the hospital". Everyone could see it but me. I eventually had three hospital stays that year, and I never slowed down.
And I still haven't learned. I still run myself ragged ignoring everything my body is telling me. I still work long days, volunteer, go to the gym, and have time for my friends and family whenever I can fit them in. I don't stop from the time I wake up to the time I crash. I run myself so hard that I can't even sit down to watch TV without falling asleep. I know this is my body telling me to slow down, but I can't stop myself. I am trying to listen because I know what the end is if I don't. If I could do each day again, I would make myself sit down and relax. There is nothing more important than my health.
However, there are things I would change if I could. One of those things is something I still do to this day. The one thing I would do if I could do it all again is listen to my body. I can be very stubborn when I want to be, and I am most stubborn with how I feel. I have a huge phobia of being portrayed as weak, so I carry on acting normal no matter how sick I may feel. This has got to change.
I learned to ignore cues from my body long ago. It intensified when I became anorexic because I did not want to listen to the hunger cries. Ulcerative Colitis also had it's hand because I wanted to ignore the pain and the fatigue. I would push through each signal my body gave me just so that I could do what I wanted to do despite the consequences. Each time I continued through the screams I found myself in the hospital.
I remember clearly the summer of my last flare and the beginning of the end of my colon. I could feel myself getting weaker and weaker. I could see myself turning white as a ghost. I could no longer eat without pain and finding myself living in the bathroom. Fevers would come each night leaving me shivering in the peak of the summer. Yet I continued to work 12 hour days doing my full time job during the day and showing houses in the evenings. I couldn't say no. I remember how tired I was on the 4th of July going to picnics and refusing all foods except for the safest, smallest amounts. Then I had a routine doctor's appointment that ended up changing my life. Soon as my GI doctor walked into the exam room he said to me, "Which hospital are you going to?" My husband had predicted it that morning when he said, "I'll see you later tonight in the hospital". Everyone could see it but me. I eventually had three hospital stays that year, and I never slowed down.
And I still haven't learned. I still run myself ragged ignoring everything my body is telling me. I still work long days, volunteer, go to the gym, and have time for my friends and family whenever I can fit them in. I don't stop from the time I wake up to the time I crash. I run myself so hard that I can't even sit down to watch TV without falling asleep. I know this is my body telling me to slow down, but I can't stop myself. I am trying to listen because I know what the end is if I don't. If I could do each day again, I would make myself sit down and relax. There is nothing more important than my health.
Monday, November 19, 2012
Life, Death, And The Stuff In The Middle
It is something philosophers have pondered for ages; the origins of life, what happens after death, and why the stuff in the middle? We all have our own thoughts on the issues stemming from the paths our lives have taken.
Life is a curious thing. Why is there life? Why do humans think and reason? The fact of the matter is I don't really care because we do. I am happy I was granted life and happy of everyone else's life as well. Life to me is a treasure. It is fragile and sacred. It is something to never be taken for granted. You never know when it will leave you.
Death on the other hand fascinates me even more. The body is so resilient and yet so delicate at the same time. What kills one will not kill another. I am enthralled by this and love to delve into the aspects as to why someone ultimately passed on. Maybe I should have been a mortician. We can go into what happens after death, but this is a personal matter. I don't care what you believe or how our beliefs differ, what matters is that your belief brings comfort to your thoughts about death. Because no matter how much we try to avoid it, death will find us.
Now about the most important thing and that's what happens in between the moment of life and our ultimate death. One thing I have been working on is living in the moment. We can't change the past and can't predict the future. All we can have semi-control over is what we are doing, thinking, feeling in the moment. I have been trying to embrace the moment by staying true to my feelings, not worrying about what might happen next, or regretting what decisions I have made it the past. What little improvements I have made on this has allowed me to be more open minded . Most of all it has allowed me to love the stuff in the middle more.
Life is a curious thing. Why is there life? Why do humans think and reason? The fact of the matter is I don't really care because we do. I am happy I was granted life and happy of everyone else's life as well. Life to me is a treasure. It is fragile and sacred. It is something to never be taken for granted. You never know when it will leave you.
Death on the other hand fascinates me even more. The body is so resilient and yet so delicate at the same time. What kills one will not kill another. I am enthralled by this and love to delve into the aspects as to why someone ultimately passed on. Maybe I should have been a mortician. We can go into what happens after death, but this is a personal matter. I don't care what you believe or how our beliefs differ, what matters is that your belief brings comfort to your thoughts about death. Because no matter how much we try to avoid it, death will find us.
Now about the most important thing and that's what happens in between the moment of life and our ultimate death. One thing I have been working on is living in the moment. We can't change the past and can't predict the future. All we can have semi-control over is what we are doing, thinking, feeling in the moment. I have been trying to embrace the moment by staying true to my feelings, not worrying about what might happen next, or regretting what decisions I have made it the past. What little improvements I have made on this has allowed me to be more open minded . Most of all it has allowed me to love the stuff in the middle more.
Sunday, November 18, 2012
I Want To Change THIS About Healthcare
I could get on my high horse for this post and speak about making sure everyone has adequate coverage, but our country seems to be making strives in this. So I am going to speak to another thing that I would love to change. I would love to bring compassion back to healthcare.
OK, so I'm still on my high horse. For profit health care has made it impossible for doctors to spend enough time with their patients to make a connection. Instead the doctor is forced to stick to a schedule that hardly leaves enough time to properly diagnose the patient never the less make a connection. So what's so bad if a doctor and patient don't have a connection you ask? A lot when the patient has a chronic illness.
Patients are less apt to open up to a doctor when they don't feel a bond. When the patient suffers from a humiliating disease like Ulcerative Colitis it can make disclosing important information very difficult or impossible. How can you talk about blood in your poop or even pooping your pants when you have only spoken five words with someone? How do you bring up leaking poop from your vagina or pain in your testicles when you feel the need to poop as your doctor is walking out of the office to the next appointment? The answer is you usually do not. Symptoms go by without discussion. Doctors do not get the full story and the patient continues to suffer.
Another thing a doctor should do for his patient is advocate. There are many cases when the insurance companies deny patients coverage that is necessary to their health. It is the doctors job to step in and prove to the insurance company that the patient needs the drug, needs the extra stay, or needs extra visits. Without the connection the doctor is more apt to let the insurance company dictate care. A doctor will fight for the patient when he's invested in the patient's well being.
I have had both kinds of doctors. I have had the sympathetic, kindhearted doctor and I have had to cold, unfeeling doctor. They both were well skilled in their specialties, but there is one I will never go back to. There is one that misdiagnosed me because he would not spend the time to listen and care. There was also the other who I told my deepest and darkest secret to first. The one that fought for the best treatments available to me. This is the difference.
It's time healthcare took just as much time on compassion as it does on a diagnosis. More time needs to be spent on psychology and sociology in medical school. More time needs to be allowed during the office visit to give the doctor a chance to delve into the patient's life. This will change the future of healthcare.
OK, so I'm still on my high horse. For profit health care has made it impossible for doctors to spend enough time with their patients to make a connection. Instead the doctor is forced to stick to a schedule that hardly leaves enough time to properly diagnose the patient never the less make a connection. So what's so bad if a doctor and patient don't have a connection you ask? A lot when the patient has a chronic illness.
Patients are less apt to open up to a doctor when they don't feel a bond. When the patient suffers from a humiliating disease like Ulcerative Colitis it can make disclosing important information very difficult or impossible. How can you talk about blood in your poop or even pooping your pants when you have only spoken five words with someone? How do you bring up leaking poop from your vagina or pain in your testicles when you feel the need to poop as your doctor is walking out of the office to the next appointment? The answer is you usually do not. Symptoms go by without discussion. Doctors do not get the full story and the patient continues to suffer.
Another thing a doctor should do for his patient is advocate. There are many cases when the insurance companies deny patients coverage that is necessary to their health. It is the doctors job to step in and prove to the insurance company that the patient needs the drug, needs the extra stay, or needs extra visits. Without the connection the doctor is more apt to let the insurance company dictate care. A doctor will fight for the patient when he's invested in the patient's well being.
I have had both kinds of doctors. I have had the sympathetic, kindhearted doctor and I have had to cold, unfeeling doctor. They both were well skilled in their specialties, but there is one I will never go back to. There is one that misdiagnosed me because he would not spend the time to listen and care. There was also the other who I told my deepest and darkest secret to first. The one that fought for the best treatments available to me. This is the difference.
It's time healthcare took just as much time on compassion as it does on a diagnosis. More time needs to be spent on psychology and sociology in medical school. More time needs to be allowed during the office visit to give the doctor a chance to delve into the patient's life. This will change the future of healthcare.
Saturday, November 17, 2012
Weaknesses and Strenths
This post is a difficult one for me. One of my biggest struggles is recognizing my strengths. I am more apt to criticize myself for the one thing I did wrong than praise myself for the many things I may have done right. This is something I am currently working on in therapy to help with my self-esteem. I am beginning to learn that strengths come in many shapes and forms, and sometimes it's not about being the best but being good more times than not.
I'm going to start with my weaknesses though since that is the easiest for me.
Forgetful: I am always forgetting things. I have locked myself out of the house twice in one month. I make hundreds of trips up and down the stairs each day because I always leave something behind. I forget to make phone calls, forget to pick up groceries at the grocery store, even forget where I'm going when I'm driving. If I don't write it down, it will be forgotten. It becomes a problem with my health when I forget to take my medicine or forget what the doctor tells me as I'm walking out of the office.
Dismissive: I don't always trust when others give me praise and usually dismiss it quickly. I can always find one instance to negate the praise making the praise untrue in my eyes. Many times I don't believe myself. It can make life difficult not knowing what to believe and what to dismiss. With my health I am always dismissing pain, test results, and doctor's warnings. I never want to believe that I'm sick, and look the other way even when proof is given to me that I am.
Fear of Failure: I have a huge fear of failure. To me failure is a sign of weakness. It is humiliating and shaming. One failure to me becomes a catastrophe. It is because of this fear of failure that I procrastinate. I am scared or will refuse to start something if I think I will fail. It keeps me from trying new things and moving forward in my life. It has kept me from keeping doctors appointments or making them in the first place. I have grown tired of trying things that don't work and feeling like a medical failure.
Ok, I will leave my weaknesses there and start on the strengths.
Humility: This is one instance where low self-esteem may be a good thing. I am never cocky or run my mouth. I let my actions speak for themselves. This is especially true in my martial arts training, but also carries over into my career and even health. I know that I don't always have the right answers when it comes to my health. I try to do the right thing, but will always fess up when I do wrong.
Kindness: I am that friend you can always count on. If I say I will do something for you, I will. I am the person that picks up the item when someone drops it. I like to bring a smile to people's face. It makes me happier to do something for someone else than for myself. I think my kindness has helped me build better relationships with my doctors. Doctors tend to relax more and see you as a person when you share your kindness with them.
Open Minded: I can view things from all sides. It seems that in this day and age open mindedness is seen less and less. I would like to point at the recent election and politics. Life is not a math equation with just a right or wrong answer. I am able to put myself in other people's shoes and see how they are looking at things. This is a great characteristic when it comes to marriage and work and the need to compromise. It is also useful in choices regarding my health. Being open minded allowed me to be realistic with surgery and recovery. I was able to weigh the good and bad that comes with removing a colon, and make a decision that was best for me.
I'm going to start with my weaknesses though since that is the easiest for me.
Forgetful: I am always forgetting things. I have locked myself out of the house twice in one month. I make hundreds of trips up and down the stairs each day because I always leave something behind. I forget to make phone calls, forget to pick up groceries at the grocery store, even forget where I'm going when I'm driving. If I don't write it down, it will be forgotten. It becomes a problem with my health when I forget to take my medicine or forget what the doctor tells me as I'm walking out of the office.
Dismissive: I don't always trust when others give me praise and usually dismiss it quickly. I can always find one instance to negate the praise making the praise untrue in my eyes. Many times I don't believe myself. It can make life difficult not knowing what to believe and what to dismiss. With my health I am always dismissing pain, test results, and doctor's warnings. I never want to believe that I'm sick, and look the other way even when proof is given to me that I am.
Fear of Failure: I have a huge fear of failure. To me failure is a sign of weakness. It is humiliating and shaming. One failure to me becomes a catastrophe. It is because of this fear of failure that I procrastinate. I am scared or will refuse to start something if I think I will fail. It keeps me from trying new things and moving forward in my life. It has kept me from keeping doctors appointments or making them in the first place. I have grown tired of trying things that don't work and feeling like a medical failure.
Ok, I will leave my weaknesses there and start on the strengths.
Humility: This is one instance where low self-esteem may be a good thing. I am never cocky or run my mouth. I let my actions speak for themselves. This is especially true in my martial arts training, but also carries over into my career and even health. I know that I don't always have the right answers when it comes to my health. I try to do the right thing, but will always fess up when I do wrong.
Kindness: I am that friend you can always count on. If I say I will do something for you, I will. I am the person that picks up the item when someone drops it. I like to bring a smile to people's face. It makes me happier to do something for someone else than for myself. I think my kindness has helped me build better relationships with my doctors. Doctors tend to relax more and see you as a person when you share your kindness with them.
Open Minded: I can view things from all sides. It seems that in this day and age open mindedness is seen less and less. I would like to point at the recent election and politics. Life is not a math equation with just a right or wrong answer. I am able to put myself in other people's shoes and see how they are looking at things. This is a great characteristic when it comes to marriage and work and the need to compromise. It is also useful in choices regarding my health. Being open minded allowed me to be realistic with surgery and recovery. I was able to weigh the good and bad that comes with removing a colon, and make a decision that was best for me.
Friday, November 16, 2012
I'm Gonna Wash My Bones In The Atlantic Shore
One of my favorite places to go is the beach. The beach is so calming. I can spend hours on the sand doing nothing but listening to music on my iPod and people watch. In fact the beach is one of the top people watching spots in the world.
If you have ever gone to any of the beaches on the Atlantic coast specifically in Delaware and New Jersey you will find there are all types of people at the beach. The beach is one place that people seem to leave their inhibitions behind. It is here you will find that people come in all shapes and sizes and they are confident in who they are. It is at the beach that I always become a little more comfortable in my skin. This year I was even able to sport a bikini a few times to show off my scars.
The best part about the beach is the break from reality. I don't know quite what is it about the beach, but time stops when you are there. Nothing matters any more. The only thing on the to do list is to go sit in the sand and watch the waves. Time is abstract. Breakfast is eaten at 10:00, lunch at 4:00, and dinner whenever. The beach is the only time I am not obsessing about the clock.
Then there is something about the smell, sound, feel, and taste of the beach. It reaches every sense to become part of you. The smell of the salt water fills your lungs. The food on the boardwalk constantly making your mouth water keeping you eating long after you are full. The relaxing pounding of the waves followed by the cries of seagulls. It is like a lullaby. The warmth of the sun felt all over the body with the cooling ocean breeze. The breeze brings with it the taste of salt in your mouth. The beach is a whole new world waiting to be gulped in.
As I enter the ocean I can feel my worries wash away. The calming waves carrying me up and down as I float in the sea. The Atlantic Ocean washes my thoughts and fears away. The ocean has always had a calming effect on my belly as well. Even when I was sick at the beach the ocean would carry the pain away with the tides. The picture above is the epitome of my beach experiences. As the water rushes around me, it takes all the sorrows away in its pull back to the sea.
Thursday, November 15, 2012
Is It Better To Have An Invisible Illness?
One of the biggest complaints I hear from fellow j-pouchers and IBD patients is that they are often hear, "But you don't look sick." I agree. This is an awful thing to hear when you are in constant pain and struggling to make it through the days. What should we look like? Do we need to be lying on our death beds before the pain is appreciated?
During my final flare with a colon I had a first year doctor during my hospital stay at Jefferson Hospital. I entered the hospital on July 9th and new doctors begin their rotations on July 1st. This young man was fresh out of med school. He treated me respectfully during each exam, but at the end of my stay he came to me with a confession of sorts. He told me the nurses were right. Patients with IBD are best at covering their disease. Even in the medical world we have a reputation of having the complete invisible illness.
I have to admit I find this to work to my advantage. I never wanted to be treated differently by my disease. I have always hated the looks on peoples faces when I disclose my illness. The look of pity. I relish the fact that I can escape judgement by not telling others what I have to deal with. I don't want special treatment that many feel is their obligation when you tell them that you are sick. I want the same standards that everyone else has. So while there may be times that my illness is misunderstood, I would rather have to continuously explain it than deal with the looks every day.
During my final flare with a colon I had a first year doctor during my hospital stay at Jefferson Hospital. I entered the hospital on July 9th and new doctors begin their rotations on July 1st. This young man was fresh out of med school. He treated me respectfully during each exam, but at the end of my stay he came to me with a confession of sorts. He told me the nurses were right. Patients with IBD are best at covering their disease. Even in the medical world we have a reputation of having the complete invisible illness.
I have to admit I find this to work to my advantage. I never wanted to be treated differently by my disease. I have always hated the looks on peoples faces when I disclose my illness. The look of pity. I relish the fact that I can escape judgement by not telling others what I have to deal with. I don't want special treatment that many feel is their obligation when you tell them that you are sick. I want the same standards that everyone else has. So while there may be times that my illness is misunderstood, I would rather have to continuously explain it than deal with the looks every day.
Wednesday, November 14, 2012
The Real Anorexic
Today I'm going to try to raise some awareness to another disease that is dear to me and that is eating disorders, specifically Anorexia Nervosa. This is often a misrepresented and misconstrued disease. Between both Ulcerative Colitis and Anorexia I have to admit I am more ashamed to admit my battle with Anorexia because of the stigma it brings. Many people still believe anorexics fit the mold of the rich, young, vain, white girl. I am going to spend my time today debunking these myths.
First, I am far from rich and almost all of the other people I have met in my recovery journey are far from rich. I grew up in a middle class, blue collar, working family. I grew up learning to always save money for a raining day and to never take your job for granted because it may not be there tomorrow. Not that people who may have more money are bad, but the stereotype is that because these girls come from rich families they need to bring on drama. Anorexia is not about bringing on more drama. In fact it is used as a coping mechanism to escape the drama already going on.
I am also far from vain. I hardly ever wear makeup, take 3 minutes top to do my hair in the morning, and buy clothes based more on comfort than style. This goes the same for most other anorexics. The people suffering from Anorexia usually suffer from low self-esteem and feel they are not good enough to even dream of being vain. So Anorexia isn't about becoming skinny to look good, but usually about becoming skinny in order to hide or run away from something.
Although I was still young and in my 20's when I developed Anorexia, I was no longer the stereotypical teenager. In fact it is becoming more and more prevalent in older generations and sadly younger than 10 as well. When I was receiving treatment I was in a Thirty and Beyond group for those 30 years old and older. This group became so popular it unfortunately had a waiting list to get in.
Now you may have heard about boys and men having eating disorders and think it's an exception to the rule. While it still is, the male population developing eating disorders is skyrocketing. In my first round of inpatient treatment at a facility that accepted both men and women I met two males out of 15 who where there for treatment of eating disorders. It is because of this stereotype that less males seek treatment and the easier it is for them to hide their eating disorder.
I may be white, but all races develop Anorexia. I have met blacks, asians, muslims, and hispanics who all were in treatment the same time as me. Their stories were basically no different than mine except many of these groups receive more criticism for their eating disorders. It is a sad reality of Anorexia.
One of the biggest misconceptions of Anorexia is that the anorexic can just get over it by starting to eat again. This is why eating disorders are still not seen in the every day population as an actual disease. Many think Anorexia is a choice. This is as far from the truth as the cancer patient choosing to have cancer. I never set out to become anorexic. Instead I went on my first ever diet because of steroid weight gain which then triggered the disease. I tried unsuccessfully for 7 years to work my way out of the throws of Anorexia. Every time I would begin to eat and gain weight my anxiety increased ten fold. The only way I felt I could function in society without losing my mind was to resort to not eating again.
And just like Ulcerative Colitis, I will always carry Anorexia around with me. I will always look at food differently. I will never see my body the same way again. Anorexia changes a person just like every other disease. And just like every other disease the process of recovery makes a person stronger as well. There is nothing easy in recovering from an eating disorder.
I would like to dedicate this post to all of the wonderful people I met in my recovery. Some are still struggling and others are in recovery just like myself. Every person I met in my path of recovery has meant something to me. I will never forget anyone of them as they have all given a little of themselves to me.
First, I am far from rich and almost all of the other people I have met in my recovery journey are far from rich. I grew up in a middle class, blue collar, working family. I grew up learning to always save money for a raining day and to never take your job for granted because it may not be there tomorrow. Not that people who may have more money are bad, but the stereotype is that because these girls come from rich families they need to bring on drama. Anorexia is not about bringing on more drama. In fact it is used as a coping mechanism to escape the drama already going on.
I am also far from vain. I hardly ever wear makeup, take 3 minutes top to do my hair in the morning, and buy clothes based more on comfort than style. This goes the same for most other anorexics. The people suffering from Anorexia usually suffer from low self-esteem and feel they are not good enough to even dream of being vain. So Anorexia isn't about becoming skinny to look good, but usually about becoming skinny in order to hide or run away from something.
Although I was still young and in my 20's when I developed Anorexia, I was no longer the stereotypical teenager. In fact it is becoming more and more prevalent in older generations and sadly younger than 10 as well. When I was receiving treatment I was in a Thirty and Beyond group for those 30 years old and older. This group became so popular it unfortunately had a waiting list to get in.
Now you may have heard about boys and men having eating disorders and think it's an exception to the rule. While it still is, the male population developing eating disorders is skyrocketing. In my first round of inpatient treatment at a facility that accepted both men and women I met two males out of 15 who where there for treatment of eating disorders. It is because of this stereotype that less males seek treatment and the easier it is for them to hide their eating disorder.
I may be white, but all races develop Anorexia. I have met blacks, asians, muslims, and hispanics who all were in treatment the same time as me. Their stories were basically no different than mine except many of these groups receive more criticism for their eating disorders. It is a sad reality of Anorexia.
One of the biggest misconceptions of Anorexia is that the anorexic can just get over it by starting to eat again. This is why eating disorders are still not seen in the every day population as an actual disease. Many think Anorexia is a choice. This is as far from the truth as the cancer patient choosing to have cancer. I never set out to become anorexic. Instead I went on my first ever diet because of steroid weight gain which then triggered the disease. I tried unsuccessfully for 7 years to work my way out of the throws of Anorexia. Every time I would begin to eat and gain weight my anxiety increased ten fold. The only way I felt I could function in society without losing my mind was to resort to not eating again.
And just like Ulcerative Colitis, I will always carry Anorexia around with me. I will always look at food differently. I will never see my body the same way again. Anorexia changes a person just like every other disease. And just like every other disease the process of recovery makes a person stronger as well. There is nothing easy in recovering from an eating disorder.
I would like to dedicate this post to all of the wonderful people I met in my recovery. Some are still struggling and others are in recovery just like myself. Every person I met in my path of recovery has meant something to me. I will never forget anyone of them as they have all given a little of themselves to me.
Tuesday, November 13, 2012
This Post Is Dedicated To Poop
I don't know why, but adults refuse to talk poop. In fact many avoid it. My husband is one of the worst. He can't stand anything poop related. It makes life hard for me as a j-poucher. I love poop so much that I even volunteer to scoop kitty poop every week. I love to talk poop. So I'm going to talk about it now.
My life is poop. I poop all the time, and I examine my poop. Ewww, you say. Well you should be too. Poop tells you a lot about yourself. My poop tells me how fast things are going through my system. Are they going through too fast or too slow? The biggest concern I have is blood in my poop. Even after my surgeries I still find myself examining my poop for blood. And yes, sometimes there is still a little blood.
Poop is an awesome thing because it can come in almost any color of the rainbow. I have yet to be able to make blue poop yet. If you can find the secret combination to blue poop, please let me know. I would like to check off my goal of pooping every color of the rainbow. Here are the most interesting things I have found. Beets and red velvet cake make the brightest red poop I have ever seen. Anything purple equals green poop. How that works I have no idea, but drink a lot of grape juice and I will have green poop. Same goes for blue, and this is the reason I cannot make blue poop. If I don't eat enough, my poop will be neon yellow like a radioactive site. Milk chocolate equals brown poop while dark chocolate equals black poop. Same goes for beer; IPAs and lagers are brown and while stouts and porters come out almost black.
As a j-poucher I don't digest food as quickly and many times things come out whole. This is why I have to be careful what I eat so that I do not get blockages, but it can be fun to see what comes out in my poop. The dehydrated apples in apple cinnamon oatmeal come out like they go in perfectly unharmed by the digestion process. Tomatoes can be confused with blood many times by their skins ability to become streaks in poop. That can be said for red peppers as well. The most interesting and maybe most concerning is pills coming out whole. This is why I try to keep all vitamins to chewables and all medications to liquid or quick dissolving. Just like j-pouchers even the coloned folk can be amused when it comes to vegetables. Peas and corn are most notable for their resistance to digestion, but carrots are pretty tough themselves. And the devils of nuts are fun because they come out in nice hard pellets that you can feel.
Another interesting aspect of poop is the burn. Hot, spicy food goes out even hotter than it goes in. This has led me to be wary of jalapenos and chili sauce not because I can't take the heat when I eat, but an hour later I will be paying big time with a fiery poop. That said ice cream seems to cool the poop. It almost has a soothing effect. Eat some wings followed by ice cream and I'm in the clear. Plus I find this to be a meal any girl could love.
Poop doesn't always come alone especially for me. It is followed with its best friend the fart. Who can fart the loudest? A j-poucher. There is something for removing your colon and most of the rectum and that is your noise control is gone. My husband is most horrified by my blasts. I have to admit they can be a little shaming when in a public bathroom. But it is what it is and I can't help it. Besides who doesn't fart? If someone has a problem with it, then they are the ones with the true problem.
Poop is my favorite topic, and I could go on and on about it. Next time you feel the need to talk poop. Go ahead. Everyone is doing it!
Picture from What to Expect
Monday, November 12, 2012
It Is NOT A Cure!
My biggest pet peeve of the j-pouch serves isn't the recovery, the need to go to the bathroom multiple times a day, or the restricted sleep. It is when people use the word cure in conjunction with j-pouch surgeries. J-pouch surgery is NOT a cure! I hate it when patients say it, but I hate it even more when I hear that doctors are telling their patients it is a cure.
Ulcerative Colitis is an autoimmune disease. Autoimmune diseases rarely keep to one specific organ. This applies to Ulcerative Colitis as well. UC can lead to arthritis, osteoporosis, eye problems, kidney problems, and liver problems to name a few. These complications continue even when the colon is removed. It is because of these extra-intestinal problems, that the Uclerative Colitis will continue to follow you even after j-pouch surgery. No matter how many years after j-pouch surgery you will still need to disclose your once Ulcerative Colitis diagnosis.
The other reason it is not a cure is that you can still get UC! How is this so, you ask, if you've had your colon removed? The answer is a small amount of the rectum is usually kept to maintain continence. This bit of rectum can still flare up with Ulcerative Colitis even years after j-pouch surgery. When this occurs it is referred to as Cuffitis. I can tell you from experience Cuffitis is just as painful, if not more so, than a colitis flare. The inflammation is centralized to a much smaller area making the pain more intense, plus the stool passing by is more acidic without a colon. Good news for those that are diagnosed is that it is usually easily resolved with suppositories.
The final reason j-pouch surgery is not a cure is because even with a complication free recovery your life will never be the same as when you had a colon. The small intestine was never meant to be a colon and no matter how hard it tries it never will. You will still need to go to the bathroom more often than the coloned person. You will have more gas than the coloned person and only the luckiest can fart like a coloned person. Otherwise you will be limited to certain positions for farting or only farting over a toilet. A j-poucher will also have to always be careful to not become dehydrated especially with illnesses. Pushing fluids takes on a whole new meaning.
So while many will say j-pouch surgery is a cure for Ulcerative Colitis because you no longer have a colon to become inflamed do not be fooled. There is more to Ulcerative Colitis than the colon. Just like there is more to j-pouch surgery than removing the colon. So let me repeat j-pouch surgery is NOT a cure!
Ulcerative Colitis is an autoimmune disease. Autoimmune diseases rarely keep to one specific organ. This applies to Ulcerative Colitis as well. UC can lead to arthritis, osteoporosis, eye problems, kidney problems, and liver problems to name a few. These complications continue even when the colon is removed. It is because of these extra-intestinal problems, that the Uclerative Colitis will continue to follow you even after j-pouch surgery. No matter how many years after j-pouch surgery you will still need to disclose your once Ulcerative Colitis diagnosis.
The other reason it is not a cure is that you can still get UC! How is this so, you ask, if you've had your colon removed? The answer is a small amount of the rectum is usually kept to maintain continence. This bit of rectum can still flare up with Ulcerative Colitis even years after j-pouch surgery. When this occurs it is referred to as Cuffitis. I can tell you from experience Cuffitis is just as painful, if not more so, than a colitis flare. The inflammation is centralized to a much smaller area making the pain more intense, plus the stool passing by is more acidic without a colon. Good news for those that are diagnosed is that it is usually easily resolved with suppositories.
The final reason j-pouch surgery is not a cure is because even with a complication free recovery your life will never be the same as when you had a colon. The small intestine was never meant to be a colon and no matter how hard it tries it never will. You will still need to go to the bathroom more often than the coloned person. You will have more gas than the coloned person and only the luckiest can fart like a coloned person. Otherwise you will be limited to certain positions for farting or only farting over a toilet. A j-poucher will also have to always be careful to not become dehydrated especially with illnesses. Pushing fluids takes on a whole new meaning.
So while many will say j-pouch surgery is a cure for Ulcerative Colitis because you no longer have a colon to become inflamed do not be fooled. There is more to Ulcerative Colitis than the colon. Just like there is more to j-pouch surgery than removing the colon. So let me repeat j-pouch surgery is NOT a cure!
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