Day 28 #NHBPM – Interview with a community member

Nov28

For today’s post, I chose to interview someone I recently met in the IBD community. She has a great website and I wanted to help spread her word around. I won’t spend much time talking about it. Instead, you can read the interview and explore her sight. So without further adieu, here is Sarah from www.myjourneywithcrohns.com)

1. What is the name of your blog and how did you come up with that name?
The name of my website is called My Journey with Crohns (
www.myjourneywithcrohns.com) and what inspired me to come up with the name
was my last visit to the hospital. I was laying in that hospital bed and
was talking to my mom about it, and I said to her “Wow this is going to be
with me forever, such a journey to go through.” And from that I came up
with the name :).

2. What/who inspired you to create your blog?
My last flare/attack, which led me to my first “real” hospital stay,
inspired me to create this website. I had wished for a place I could go to
that obtained, not only a western medicine approach to treatment but
eastern, as well as stories of others who were diagnosed with crohns,
recipes, news updates, funny stories (always good to try to laugh) and more
. I also wanted a place I felt I could connect to someone who knew what I
was going through. I also had such an urge to help others who are going
through what I was going through. My heart goes out to everyone who suffers
with it because I understand how unfair it can be and I just have so much
compassion for my Crohns Community, so if I can help in any way then I will
do it. So with that, I began this website, but with that I also discovered
so many others that share their stories and tools through their own blogs.
That is the amazing thing about Crohn’s Disease, the community behind it is
incredible. That is why I also share on my web site others who have
website/blogs of their own and have their take on their experience with
crohns and things they feel they would like to share.

3. When were you first diagnosed with Crohn’s Disease and how did it
affect your life at the time?
I was diagnosed at the age of 14 but had suffered from symptoms since I was
12, after returning from a trip to Lebanon where I had got a horrible
stomach virus. If there is a connection there, who knows, but I think that
virus woke up this autoimmune disease with no off button.
In terms of it affecting my life, it definitely made being a teenager in
high school a bit more difficult. I would miss a lot of school and be asked
why I would appear to fluctuate in weight all the time. I am pretty sure
some may have thought I had issues with eating. Little did they know, but I
also never shared that I had Crohn’s Disease. I think I never shared for
two reasons. One, I was a teenager and it was tough enough dealing with the
issues that come with that, let alone to share that I had a disease that
made me poop a lot and gave me a lot of pain. Second, I didn’t really
understand what I had to begin with or how serious it was, so how can I
explain something to some when I did not even really know what I was
talking about. Back when I was diagnosed, there was still little studies
done about Crohns and it was not something ever talked about in society.

4. When was your Ah Ha moment when you decided to start speaking up about
IBD.
My Ah Ha moment was this year actually. When I got sick (again, but this
time really bad) and realized that this disease can really impact the rest
of my life if I don’t take it seriously. One of the ways for me to do that
was to open up about having it, because as crazy as it sounds, half my
family STILL had no idea that I had Crohn’s Disease till this year, 14
years after being diagnosed (let alone half my friends). I never shared
because I never thought it deserved to be shared because it was not a big
deal. I had it under control, at least I thought I did. The last 6 months I
dropped 20 pounds, going from 125 to 105, which is very noticeable and hard
to give excuses for. I became pale, lost all my energy and just wanted to
move back to LA to be near my family because I could tell something bad was
coming. I was right, I got an obstruction and I was hospitalized and at
that moment I realized, I have Crohns. Not my version of Crohns, where it
was a normal to go to the bathroom after every meal and have these mini
attacks, but CROHNS, the one that, if I don’t take seriously can really F
up the rest of my life! I hope I am explaining that right, hard to express
that eye opening moment but maybe some of you can relate to it.

5. Who are your inspirations in the IBD community and what makes them
special?
My inspirations are all my twitter friends and Facebook friends I have met
who have Crohns. That community is a combination of moms, dads, sisters,
brother, students, bloggers, teenagers and so on, who help support one
another and show compassion to those who are struggling with their Crohns.
This community has touched my heart and the work I do and hope to
accomplish, I do for them!

6. If you could meet anyone in the IBD who would it be?
I would love to be able to have a huge party with all my twitter and
Facebook friends who have Crohns, and meet them all! Sounds silly, but I
feel it would be a great party. I can not just pick one to meet!

7. What advice would you give someone who is recently diagnosed with
Crohn’s?
I would say that I know it may seem daunting and scary BUT you are not
alone and to reach out to others who have it, it helps a lot. Also know,
you will be ok. Especially during those scary/painful flares, to remind
yourself, that it will pass. I would also say that it is ok to feel all the
emotions that come with it and share it, it is important to have a good
support network that you can talk to about it. If you can not find that
support at home, you will definitely find it on twitter, Facebook and so
many other great websites that have great forums just for that.

8. Has Crohn’s Disease ever stopped you from doing something?
Only once, it stopped me this last time from continuing to work but it
became a blessing in disguise because then I would have never found the
time to create www.myjourneywithcrohns.com and this has become my heart and
love!

9. What is your biggest pet peeve about myths people believe about Crohn’s?

The most annoying thing I encounter is the common thread of people
thinking, “oh crohn’s is the pooping disease, that is why you are so
skinny.” It is the ignorance of others not knowing that it is way more then
“pooping” and that being “skinny” is not a plus from it (as it is usually
said in a way that implies, “oh that is why you are so lucky to be so
skinny.”) That is another bit of a pet peeve (going on a tangent for a
minute), because this past year, before I got sick, I was “fit”, I went to
yoga and palates every other day and was eating right. For the most part my
Crohns was under control, and the second someone found out I had Crohns, I
would always here “Oh that is why you are skinny” (in a way that sounded
like they got their answer as to why I looked the way I did and the world
made sense) and all I wanted to say was, “No, I actually work very hard to
take care of myself, this is not from Crohns. I do this to help prevent me
from getting a Crohn’s Flare.” There are two types of “skinny” with Crohn’s
in my opinion, and people do not get this. The “sick” skinny and the “fit,
I actually take care of myself” skinny. Sorry this just annoys me because I
have heard other friends with Crohns get that taken away from them, the
credit that they take care of themselves and thus may be “fit” from it.
Bottom line, people need to stop commenting on every pound you lose and
gain, especially because you never know the true story behind that person.

10. Do you think there will be a cure in your lifetime?

I hope so

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?

Nov25

Well, we are in the home stretch on the blogs and this is one that will really make me think. In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂 This one will be no different.
When I first started down the IBD road, I didn’t give it much thought. I went through my years of being sick and I never had a goal in mind. I just wanted to feel better and live my life. I didn’t even know too much about the disease. Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass. During the 1990’s, I started feeling a lot better to the point that I went off all medicines. Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease. I went through life ignorant of what I had.

With the coming of a new century, my life changed. In the 2000’s I started seeing a new GI who wanted me back on meds. This started my downward spiral with medicine. For some reason, I still never really felt the need to learn more about my disease or treatments. Time would go on and living 20 years would come with me still ignorant about my disease. I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb. Why not? I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals. My father in law who suffered with UC in his life and had a ostomy bag passed away. This hit me because I looked up to him in my battle with IBD. He was an inspiration in how he lived his life. Second, I went into my biggest flare ever. I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle. After 23 years, I felt it was time. It was time to finally find out just what I am living with. I went online and realized just how much information was out there. My life was about to change. I was no longer going to be a patient, but an advocate. I won’t go into the big details as I have talked about them a number of times already in other posts. You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others. I have gotten some really good feedback to show that what I stated out to do is working. My main goal now is not educating myself but educating others. I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends. Same for my Twitter account. I talk to more people with UC and CD then I have ever. Sometimes I learn some new information from them. Sometimes I help them. As 2012 draws to a close I look at where I have come from and how far I have traveled this year. I went from feeling depressed, lonely and useless to being strong, confident and helping others. I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails. I want to become more active with CCFA. I will probably work Camp Oasis this summer. Anything else…I don’t know. I guess we will have to wait and see.

Post 18 #NHBPM – Write about your advice for someone caring for a patient with your condition

Nov18

Dear Sir/Madam:

This letter is to inform you that you are now caring for a patient with Crohn’s Disease. There are a bunch of things you should know about the disease and how it will affect your life.

First, remember that the person you are taking care of has the disease, not you. Right now they are probably scared because they have a uncurable chronic illness. What they need most is love, affection and some sympathy. They are in constant pain and will probably never feel “normal” again. It is your job to help them get back to normal as best as THEY can.

Second, listen to them. Don’t ever assume you know what they are going through or what they feel. If they say they have pain, believe them. Sometimes they may seem alright, but most times there is a pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched. Ah, I see the lightbulb go on above your head…you have an idea now on what they are feeling like.

Next, don’t try to force feed them. An appetite is a tricky thing for someone with Crohn’s. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food…believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with Crohn’s.

Your patient is not going to like the medicines that they are on. If they are taking Prednisone, they are going to get depressed. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful or handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a constant flare, they may lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick. They have a chronic disease that will be with them all their life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having Crohn’s doesn’t mean your life ends..so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed off.

Thank you for taking the time to read this letter. I hope it will help you in caring for your new patient. If you have any questions, feel free to ask me. There is also a huge community of people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked. You are now about to embark on a great journey.

sincerely;

Dr. Ira B. Darling

Day 16 #NHBPM – How You Take Time for Yourself

Nov16

Time for myself. What is that?

I am sure a lot of people ask that question these days. We live in a busy fast pace world. No one seems to stop and smell the roses. We work 8-10 hours a day, spend about 2-3 hours commuting and 6-8 hours sleeping. That is about 16-21 hours out of our lives, leaving anywhere from 3-8 hours to eat, shower, do chores, etc. So time for myself…again, what is that?

Sad thing is that for us IBDers, stress is a big factor. It is know that the more stress you have, the more likely you will have a flare or it makes it harder to come out of one. We need to listen to our bodies when it tells us STOP! Let Me REST!!

For me, I make sure to factor in some time to just chill and relax. I try to spend some hours at night just vegging out. This may be watching television or playing on the computer. But it is time for my body to relax and unwind. About every 4-5 weeks, I get messages. This helps in releasing the body of stress and it is a time for me to relax and not think about anything.

There are so many ways for a person to make some time for themselves. One way is to take a class. It can be anything from educational to fitness to recreational. The reason I say a class is that they are usually scheduled ahead of time. This forces you to put it on a calendar and make the time for it.

Another way to make time (and this is more for the ladies) is instead of taking a shower, draw yourself a bath and take a 1/2 hour or an hour to soak it up and relax. If you have kids, tell your spouse to watch over them for that time. Have some wine, play some relaxing music or read a book in there.

Lastly, on the days off from work, instead of doing chores, take your loved one out and have some fun. Go to a movie or museum. Go for a hike if you like. Whatever it is, just do it. Don’t hesitate. If you don’t make the attempt, you will never do it and you will just keep yourself stressed.

Now I know some of you are going to say that they just don’t have the time to do these things. I say, you do, you just don’t know it. If you have a kid, get a babysitter. If you work real long hours, then see about taking a personal day one day. If you just make excuses of why you can’t do it, then you need to look at yourself and ask why you’re not making the time.

Crohn’s and Colitis is a tricky disease. We can go for years with no problems and then suddenly, BAM, we are sick for months on end. If we don’t take the time now for ourselves, we might regret it. No matter the situation you are in, there is always a couple of hours in the day to take as a “Me” time.

So go do it now. Step away from the computer and go enjoy yourself with a loved one and do something fun. Go bowling. Go see a movie. Go to a museum. Doesn’t matter what you do….just go and do it.

Day 12 #NHBPM – Advice for Newly Diagnosed Patients

Nov12

Today I am using one of the bonus topics. When I saw this topic I knew I had to write about it. It is one of the reasons I started this blog.

To anyone reading this and are newly diagnosed with either Colitis or Crohn’s Disease, the first advice I can give is….Take A Deep Breath. Your life is about to change forever. You are entering a whole new world. You will have a lot going against you and years of fights to have. So take a deep breath. Relax. Stay calm because you have a very big and caring community behind you to help.

When I was first diagnosed in the 1980’s, I was given some pamphlets to read and sent home from the hospital. I didn’t know what the disease was all about or what was installed for me over the years. Now, there is the internet. In a matter of minutes you can find out all the information you want, see tons of videos, and meet hundreds of people living with the disease.

So, now after you have taken that breath, take another and another. Now sit down and create a journal. Write down your symptoms, your medicine, your diet. This will help you later on in life when you have problems. Try to keep track of every medicine you take and how it helps or doesn’t help you. Keep track of the side effects.

Now that you have done some work, let’s go have some fun. Search the internet. There are so many people out there to help you out. There are a lot of video’s on YouTube to watch. Some are funny, some informational. Some are just video blogs. After you have watched some of the video’s, come on over to Facebook. There are tons of groups with people who have IBD. You will soon find that you are not alone. You will also find that most of these people will be very open to accept you in.

Now that you have had the time to see what the disease has to offer you, you have to take a mental step. You have to toughen up. This disease is a disgusting and descriptive disease. Many people with it are very open and there is a lot of disgusting things. If you are squeamish and don’t like dirty things…well, you will have to change how you are. You yourself will go through some tough disgusting times and it will be easier if you are ready for it mentally.

After all of this your head is probably spinning. There is so much information to take in. You are probably wondering if you will ever have a normal life again. I am happy to tell you that yes, you can. I myself hold down a job, I have gotten married, and I live life to its fullest. Some people do have severe complications and find it hard to live a normal life. But nothing says that this is going to happen to you. Stay strong and stay positive.

The next big thing you have to do is find yourself a really good gastroenterologist. If you are under 18, you will need a pediatric gastro and in a couple of years find a regular GI. It can take years until you find a good doctor. Don’t despair. They are out there. I myself have had at least 6 GI’s before I found a really great one.

So now, do you feel better? You may have a disease but know the disease does not have you. If you ever have a question or problem, there is always someone out there to help you out. And if you want, just ask me. I will do whatever I can to help you because my motto for this disease is “You are never alone”.

Day 11 #NHBPM – Write about your favorite thing that is not health-related but likely improves your life

Nov11

My favorite thing that isn’t health related but improves my life. That is such an easy thing to talk about. It all started just under 3 years ago. I never knew what I was missing in life, and then, there she was. The most beautiful girl in the world. I never really wanted her but once I held her, my heart melted and I can’t even imagine life without her. I don’t even know how I lived life without her. She is my bundle of joy. I even remember her first words to me. They scared me. I was sitting on the couch, she was on the floor. She looked up at me at spoke. It took me by surprise because she had been home for about a week and nothing. Then this. I was scared because I wasn’t used to it and didn’t know how to take it.
Ok, you are probably reading this now and are a little confused. Well, here is a picture of my little ball of joy so you can understand me a little better.

This is my Sable. Now she didn’t always look this pretty. In fact, when we got her, she was 4 months old and only 4 pounds. She was underweight and had not come into her own

So how did this scrawny scrappy little girl become a beauty? By some TLC. It all goes back to just after Thanksgiving 3 years ago. We were driving around trying to find some shelters because my wife wanted to adopt a dog. However, we are both allergic so we wanted a poodle which have hair, not fur and don’t shed. They are more hypoallergenic. Problem is, no shelters had any poodles. Since we couldn’t find a shelter, we started looking at shops near us, but found nothing that we liked. Then as we are driving, she calls one place and they say they have one poodle and is sable color. We looked at each other, and we knew. We also had a name for her. When we got to the shop, I saw her right away. I walked over to the cage and she jumped up to play. My wife came over and she jumped for my wife also. They then took her out and we held her. She was so scared and shivered in our arms.

We bought her for a nice amount, but we look at it like we rescued her. At 4 months she was old for a pet store. She probably would have been put into a puppy mill to breed real soon. So now, we have her to live a great life. We never regretted getting her from a store.

So for the next week, she was very scared. She never barked and was very nervous. We talked to her and tried to play with her. Then that one day. I was on the couch and she was on the floor. She looked up at me, crouched down, butt in the air and barked. I didn’t know this was a play stance. She was finally warming up and wanted to play. I however got a little scared.

When I was a kid walking home from the library with a friend, a dog ran out of no where. I think it was a Labrador but I don’t remember. I just remember it was big. I had to be in my early teens. So this dog runs out and jump up on me, knocking me down. My friend jumped onto the roof of a car. I then here from a window of the apartment building we were next, “Don’t worry, he doesn’t bite!”. I got up and ran. I was so scared and ever since had been scared of dogs.

Over time she would eat, and we would cuddle. She started to gain weight and look healthier. I felt so lucky to have her. I would come home from work and there she was, jumping up on my leg so happy for me to be home. We would play with a ball which turns out is her favorite toy to play with. For such a little dog, she has a very big heart. We would of course spoil her and bought tons of toys for her. There were so many stuffed animals lying around that we started calling her area a jungle, and she was the queen.

And this is what happens when she is in charge. She kills her animals and let’s them know she is queen. Ok, this is a bad picture…she needed a grooming.

But over time, she gained her full weight. She runs all over the place. She loves humans and jumps on every one that crosses her path. And every day I come home, she is there to greet me. My heart melts when I hear her barking a greeting to me. No matter what my day was like, I have to forget it and spend some time in Sableworld. I can spend 5 minutes petting and scratching her. As soon as I stop, she wants more. She will nuzzle up to me and let me know she loves me. Some people say that dogs can’t love, that they aren’t capable of it. I disagree. Sable loves me and my wife. When we are gone, she is sad. When we are near, she is never happier.

This is her now. Fully grown. When she looks up at me with those eyes, I get all mushy. I can’t believe how much she has helped me over the past couple of years. I am no longer scared of dogs. She helped me see that all they wanted was love..not harm. She has become connected with me to the point that I can actually understand some of her barks when she wants something. I remember one time she was on our bed and let out a whimper. I looked over, picked her up and put her on the floor. She immediately ran to her wee-wee pad and had diarrhea. It was sad because she was getting sick, but I somehow knew she needed to go to the bathroom. It was like we were connected in thought.

Now, on those days when I don’t feel right or get sad, I pick her up and give her a hug. She is my rock and is always there to cheer me up and make me feel better. Who would have thought that a 6 lb ball of fur would be the best medicine?

Day 10 – #NHBPM Should people post about their (or loved ones) health on Facebook?

Nov10

Facebook. One of probably the most recognizable name in the 21st Century. Whether you are on it for the games, meeting people, or finding answers. It has been used to help start revolutions in countries around the world. For some it is a place to post pictures of their pets and loved ones. And then there are people who want nothing to do with it and never use it. There are even some of us that get fed up with the changes and vow never to use it again…but most of us return.

For many of us with chronic illnesses, we use Facebook to connect with other people in our situation. I myself belong to at least 10 different IBD related groups and pages. I probably have more IBD online friends on Facebook than I do of my close friends and family.

Of course, when I am in the groups and pages I talk to other people and post about issues I have with my CD. Sometimes I answer other people’s questions. But one big topic that a lot of people in the real world ask…is should you be writing about your health on Facebook. I am reminded of a time when a fellow IBDer, Alyssa from www.loveformutantguts.com, was in the hospital and her family didn’t want her to post pictures of herself because they supposedly weren’t flattering to her. I remember doing a blog supporting her decision.

So why do I support her decision and where do I stand on the topic question? Well, first let me say your body is your body and you have the right to do or say what you want to and about it. If you are willing to share your health to other people and open yourself up to strangers..then that is your decision. Everyone has the tools to leave the site if they don’t want to read about it. Do I support Alyssa on posting the picture…most definetely. If that is what she wants to do..then so be it. Also, I think everyone with IBD should learn and see the bad side of the disease besides the good. Nothing should be hidden. I myself have learned to really open up and share a lot about my health online, not just on Facebook. I am a little more cautious on Facebook because I do have friends and family that maybe doesn’t want to hear or see some things about my disease. I try to censor my public posts so as not to offend anyone. But if I am in a private room (which most IBD rooms are) then I feel I can open up as we all understand the issues.

But what about loved ones? Well, are we talking about just mentioning our loved ones or are you an advocate for one. If my wife is sick, I won’t go on rants about it. I don’t talk about any of her problems because it isn’t my place. If she has some horrible disease, it is up to her to say what she wants about it, not me. Just like I wouldn’t want her to constantly talk about me without me knowing about it. But…if your and advocate for someone…that is a whole other story. I see so many people who are parents of little kids with IBD and they talk up a storm. But should they? If the kids are real young, shouldn’t they have some privacy rights? I think this is a very big topic. I am happy that there are parents out there looking to learn and share in the lives of their children and really learn about their disease. I sometimes wish my parents had done that when I was young..hell, I wish I had learned more when I was young. I was kind of lucky as there was no internet when I was growing up so my parents couldn’t tell the whole world about me. But if there was would I have wanted them to go online and talk about me and my disease without me knowing it. Probably not. I would feel a little violated. At the same time though, I know they would have meant well and were trying to find answers to help me.

Looking back at all of this..I realize I haven’t really answered the question. I think that is because I am torn on the answer. For myself..if I am comfortable with talking about my health and want to open up..then yes I should and people should just be happy with my decision. As for posting about others..I think there is a big gray area and I don’t know. Part of me says yes and part of me says no. I guess it is how they post and where they post about their loved ones. If they are in a private room where everyone is in the same boat and can really offer help and advice..I guess that is ok. Should they do public posts for everyone to see…maybe not.

Day 9 #NHBPM – Tell a descriptive story about a memory

Nov9

Well, I knew this would happen some time during the month. Life has gotten in the way and I find myself with not a lot of time to write a blog. So, for today’s story, I am going to reprint a guest post I did for The Gutsy Generation. I don’t think I ever posted it on my site so this might be the first time you are reading it. I really enjoyed writing this one so I am so happy to reshare it with everyone.

I look in the mirror and don’t recognize the man I see there. The grey hairs are starting to take over on top. I always seem to have a 5:00 shadow. And, are those wrinkles?? When did this all start? I am pushing 40 on the outside, but inside I am still 15. I can picture it like it was yesterday.

There I am, lying in my bed still in my pajamas. I am sweating from my fever. I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last. Oh no, time to run to the bathroom. Man, not diarrhea again. What is wrong with me? It’s been a week and I still feel like crap. So, now it is off to a new doctor that my pediatrician recommended. It is someone that is a gastroenterologist. What are they??

Ok, so this exam isn’t bad. Don’t know what he found so let’s go into his office to hear what he has to say. What is that you say…possible Ulcerative Colitis. What is that?? How can I have an ulcer..I am only 15? You want me to go to the hospital for a couple of days and get test done. This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.

So, this hospital isn’t so bad. Been here for a couple of days. Everyone seems nice. Oh boy, time for another test. I have to do an upper GI. What is that?? Ok, drink some liquid and get x-rayed…I can do that. What flavor do I want? Can I have vanilla or chocolate…wait…all you have is strawberry?? I hate strawberry. Oh man, this is horrible tasting. There is no way I can get this down. Wait!!!! Don’t put that tube up my nose to force the liquid down…I will drink it. I promise. Just let me wipe the tears away first. I want this to be over.

What a day…oh, hi nurse. Enema? What? A colonoscopy. This can’t be good. But you’re a cute nurse, so I’ll let you give me one.

I will get Demerol and Valium. Ok. They will relax me and take away the pain while the scope is in…ok. Wait…I feel that. Ow, this hurt. Oh my god this really hurts. I can’t watch the monitor because there are too many tears in my eyes. When do the meds kick in? Should I be in this much pain?

Been here a week. When do I get a diagnosis already? Here comes the dr. Ok. IBD. Ulcerative Colitis. What is all this? Thanks for the pamphlet…but what is this disease I have??

That was my short version of how I found out I had Crohn’s Disease. Yes, I was originally told UC but after finding a good doctor, I was told I had CD. This was all back in the 80’s, before computers and the internet. I had no clue what I had. I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had. I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease. I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.

Fast forward to January of 2012. I was in the middle of really nasty flare and going to the bathroom 30 times a day. I was on Humira 40 mg every week. I was so depressed that I had convinced myself I was going to need surgery. I thought I was going to need a “bag” and it hit me….I don’t even know what they look like. The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.

And that is how I turned my life around and became an online activist for IBD. When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am. I have a life to live and I shouldn’t let some symptoms run my life. I felt like I was entering a new phase with my disease. I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone. So that is my mission now.

When I write or talk, it is experience and advice that I spew. I want to be able to help all the youth out there that have this disease. I know what it is like to be a kid and have all the problems that come with IBD. Inside, I am still that little kid. Because I lost my childhood at 15, I chose to hold onto it mentally. I have the knowledge of an adult, but the drive of a kid. I like to joke around. I like to explore. I like to have a fun and be carefree. There is time later to act like an adult.

I started www.aguywithcrohns.com with one thought in mind…to help anyone that needed it. I try to give out advice on what I have learned throughout my life so others can learn from it. I want people to know that they aren’t alone and if no one else listens…I do. I am here to listen and help. Doctors don’t seem to truly care much. Friends seem to get annoyed to fast. Parents just want to do what they feel like they should be doing to help, whether it works or not. But online friends seem to listen no matter the situation and are always there. That is who I am. I am only a keystroke away. I might not always have an answer but together we can find it.

As I look back into the mirror, I can still see that 15 year old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.

Day 8 #NHBPM – Write about how you choose to write about others in your blog.

Nov8

Here is a topic that I have never talked about. In fact it isn’t one I had ever thought much about. Thinking back over most of my post, I rarely talk about my friends and family. Mainly I talk about myself. When I look at my life and my disease, I look at how most of my life I spent in solitude with it. No one in my family really understood what I was going through. I remember a time when I was a teenager when my parents were practically dragging me out of bed to get dressed and go to school. They couldn’t understand what I was feeling mentally or physically. I don’t hold this against them because in all honestly, there was no way for them to understand. I myself didn’t understand the disease. As far as friends go, I hid my disease from them. I opened up a little but never really let anyone into that part of my life. My wife…my rock…she is the only one that has seen me at my worst. She has been there for the good and the bad. And yet, I don’t mention her much. Hmmm, that has to change.

So, how do I choose to write about them. Well, the truth is that I don’t think about it. When a story comes into my head I write it out. I don’t think about who I am writing about. When I finally see a person appear on the screen, that is when I will stop and think. I don’t want to make anyone look bad on here. So when I do mention someone close to me, I will look at what I have written just to make sure it is all good. Overall though, I try to keep my post about me just so I don’t offend friends and family.

Now, as far as online friends. That is a whole other story. I have mentioned other people before. Honestly, I always feel weird doing it. I try not to put last names and sometimes I will not put a name at all. But some people are so big within the community that if I just put a first name you will know who I am talking about. For these people, I don’t worry. I won’t write anything bad about them, that’s for sure. I know some people don’t like to be mentioned and if anyone tells me not to say their name, then I won’t. I look back on the guest post from Sarah. She told me at the last-minute not to use her last name…so I didn’t.

As far as the content that I write, I just write what pops into my head. Sometimes nothing pops in which is why I can go a week or two without a post. But I never focus on other people for my blog. Overall, it is me and me alone that I want to focus on. Well, except for my Follow Fridays..but that is to promote other sites where the people have already put their name out there.

Day 7 #NHBPM – Redesign a Doctors Office

Nov7

Today I get to do a post about something new. My previous post’s for NHBPM have been rehash information that I have talked about in the past. Now, I get to talk about something new.

Redesign a doctor’s office. First let me say I am not the best decorator or designer. If you ever look at the games I play on Facebook…my farms and cities etc are all a mess and unorganized 🙂 But I will make the attempt.

The first thing I would change is the temperature. I don’t know about anyone else, but most doctors offices I go to are way to hot. It seems like none of them believe in air conditioning. What makes this worse is that I seem to do worse in the heat. For whatever reasons, the hotter it is, the worse my Crohn’s is. Also, because sometimes you have to wait forever, the heat makes waiting really unbearable.

The second thing I would change is the bathrooms. I am not sure how it is outside of NYC, but most docs I go to have one bathroom. Um, a lot of people who go to the doctor are sick and need to use the bathroom. Not to mention us patients with IBD that well, need a bathroom all to ourselves. Multiple rooms with multiple stalls would be great. Having just one bathroom with one toilet just doesn’t cut it in my book.

Now we enter the exam room. And for some reason, the room here is always freezing instead of being hot. So we get undressed and sit on a metal table in a freezing room. Again, let’s fix the A/C and get the proper temperature. And speaking of being undressed, a lot of places give you the hospital gown to put on. Here is my next change…multiple size gowns. It seems like doctors carry one size….XXXXSmall. And the gowns are so old that half of the ties are broken or missing.

So now we are in the exam room, half-naked and we wait, and wait, and wait. I would love to have a countdown clock with a time of when I am going to see the dr. I know his time is money…but what about mine. I would love to not waste my day sitting half-naked waiting for someone to come in and spend 2 minutes with me.

So lets see…so far I have a well tuned A/C unit, more bathrooms, better gowns, and some sort of waiting countdown clock.

Not sure what else I would change at the moment. To be honest, my GI doc’s office is actually pretty good overall so there isn’t much I would change. I am thinking about other offices I have been in while I write this.

So as the first week of posts comes to a close, so does my list of redesigning my docs office. It wasn’t much but it was an attempt. I would love to hear what other people think of their offices and what they would change. My challenge to you is do you think you can actually get the doc to make some of the changes you want?