Pacing Yourself With An IBD

Living is hard, especially these days.  Working 12+ hours a day has become the norm in the corporate world.  On top of earning a living, we all want to have normal lives past our work and be social with our friends and loved ones.  A big question is when are we doing too much?  This is different for everyone and can change depending on many factors.

Recently I’ve had many friends with an IBD tell me that they had too much on their plate and were starting to feel run down.  If this is even a thought in a person’s head with any chronic condition, then it’s time to take a break even if there isn’t time for one.  

I know what you might be thinking, I don’t have time for a break.  If the answer to the first question above was “Yes, I’m doing too much.  I feel run down.” then you just have to find the time.  It’s your responsibility to take care of yourself.  The next question you should ask yourself is, what if I get sick?  How much will you be able to get done then?  We all aren’t productive people during a flare.  How much can we get done when we have to curl up in bed for lengthy amounts of time.

The bottom line is you have to do what is in your best interest when it come to your life.  You especially have to do what is best for yourself when it comes to your health.  A while back when going through a tough time, I was told by a good friend “Do what is best for yourself and that is what will be best for the people around you as well”.  This can be applied to so many areas of your life.

If you take the time to do what is best for yourself, you’ll then be happier and healthier.  Capable of doing more, being more productive and a better person over all.  Take some time to think about your busy schedule, think about when you can take a break and if you don’t see a chance to take a break, it’s on you to make time for a break.  Put a block of time once a week in your calendar to relax and take some time for a mental break.  Your mind and body will thank you for it.

Never Stay Quiet!

Relationships and Dating with an IBD or Ostomy: A Stoma Isn’t a Big Deal!

It’s been a while since I wrote about a topic that has to do with relationships and dating.  Recently I’ve been told how many males in particular have trouble with this topic and don’t have someone to connect too.  The IBD and ostomy communities have many more female advocates than male advocates sharing their stories.  This is why I want to be as open as I can to help others, without sharing to much of my personal life while helping others.

This past weekend I had an event which I wanted to share to hopefully help IBD patients with an ostomy, not only males this can help females as well.  For many of us we battle with an IBD for years before making a decision about getting an ostomy.  During this battle with either Crohn’s disease or ulcerative colitis we go over every scenario in our head, about how an ostomy will make it tougher to date, even be the end of our dating lives.

Many of us go even further in creating more scenarios that are likely to never happen.  We think about the worst case events only and not how it will give us back our lives in many ways.  We don’t think about how a large percentage of days will be much improved with an ostomy.

We think of a stoma as something so abnormal that not one person will be okay with it.  I’m here to tell you that this isn’t true.  It’s completely natural to not want to show someone your stoma right away, but when the time is right chances are they won’t care about it nearly as much as you do.

I’m telling you this because I recently showed my stoma to the second girl I’ve dated seriously since my surgery.  I had an unexpected leak after a long day at her place and needed to change my ostomy.  It was frustrating and to be honest I felt embarrassed a bit.  After a little while I calmed down and we were talking while I was in the shower.  I made the decision to just ask her if she wanted to see it and make a move forward so I wouldn’t have to debate when I should show her anymore.

Her reaction “You make a much bigger deal out of it than you should.  That’s not a big deal at all.”.  Now I was a little scared a nervous showing it to her, but just like every other girl I’ve dated since my surgery, whether it be serious or not they don’t care.

An ostomy doesn’t define a person and it won’t define a relationship.  Just last night my girlfriend told me that she has never been treated so well and sweet by a guy in her life and how it meant so much to her.  She wasn’t thinking about how I go to the bathroom differently, she wasn’t thinking about how a leak might happen eventually, SHE WAS THINKING ABOUT ME AS A PERSON.

Now I’m not saying it’s easy to date with an ostomy.  I’m not saying that I still don’t have my mental battles with it at times.  But I am saying that you shouldn’t let it control your dating life or control your relationship.  In the 2.5 years since my surgery I’ve dated some amazing girls, who were really beautiful and not one cared about the fact I go to the bathroom a little differently.  Don’t think that anyone you want to ask out or date will think of you differently because of your ostomy either.

Never Stay Quiet!

2nd Annual Climb for Crohn’s & Colitis (Saturday, May 18th)

It’s that time for the climb again! The Intense Intestines Foundation is excited to invite you to our 2nd Annual Climb for Crohn’s & Colitis event. (You don’t have to climb to come down and have a good time)

In honor of World IBD Day 2013, we will be hosting our 2nd Annual Climb on Saturday, May 18th at The Rock Club in New Rochelle, NY. Similar to last year, the event will include open climbing, a silent auction, an after party with food and beverages, and raffle prizes.

The raffle includes prizes from the North Face, EMS, Wilton Outdoor Sports, Phillips, Alue Optics, Noelle, The Rock Club, the IIF, and More!

Tickets can be purchased in advance at a discounted rate of $45 here:

http://2ndclimbforcrohnsandcolitis.eventbrite.com/

Tickets include: climbing day pass, harness, shoes, instruction, ONE drink during the after party, ONE raffle ticket, and food during the after party.

The Rock Club is the premiere indoor rock climbing gym in the area, and we are excited to be invited back for our 2nd Annual Climb to raise awareness for Crohn’s disease and ulcerative colitis.

All proceeds from the event will be going to support the Intense Intestines Foundation and to raise awareness for inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis.

You’ll be helping the IIF with programs such as:

The Intense Intestines Scholarship (IBD and ostomy scholarship)

Never Stay Quiet Video Series (Awareness video series)

Never Stay Quiet Ambassador Program (Patient assistance program)

Intense Intestines Social (IBD and ostomy social network)

and MORE!

Visit our website www.intenseintestines.org to learn more about all of our programs.

Please come down and help us in our mission to help as many people with these diseases as possible and have a great time while doing it. Together we can show people with Crohn’s and colitis that they should Never Stay Quiet. 

We can’t wait to see you all again at the event this year and climb for a cause!

IIF Press Release: Intense Intestines Scholarship Program

April 8, 2013

Dear IIF Follower:

I am proudly writing to inform you of our latest project.  The IIF team has been working hard to establish a scholarship fund dedicated to easing the financial burdens that students and their families face as a result of their IBD.

We know that life with IBD is not easy.  Students are often forced to make the difficult decisions of withdrawing from classes in lieu of the cost of testing, treatments and recovery.  The monetary implications of IBD can be compounded further as it frequently takes a student additional time to complete their degree.

One of our missions is to award scholarships to college aged students suffering from moderate to severe IBD.  Thus we have launched the Intense Intestines Scholarship Program (“IISP”) and we are eager to fulfill our mission.

As of today, I am very pleased to announce that we are officially accepting applications for IISP.  Applications can be found on the IIF website, by clicking the link found at the bottom of this page.

At the same time, we need your help spreading the word about our scholarship program.  We are asking our friends, families, colleagues and supporters to reach out and share our drive and passion in making the IISP a success.

I thank you in advance for your support in the coming months as we begin IISP’s journey.  We are very excited to hear from applicants and to read their stories.  With your help we can keep the IISP going and growing for many years to come.

Sincerely,

Brian Greenberg

Intense Intestines Scholarship Page 

Riding the Five Boro Bike Tour for Crohn’s, Colitis & Ostomy Awareness

This May 5th  the Intense Intestines Foundation has a team of riders which will be riding through all five boroughs of New York City for Crohn’s disease, ulcerative colitis and ostomy awareness.

The 44 mile ride goes through the Bronx, Brooklyn, Staten Island, Queens, and of course Manhattan.  Covering many well-known areas such as Central Park and going over many New York City bridges.

We need your help to reach our fundraising goal for this ride of $1,000.  All donations go to our mission of helping those with IBD and ostomies.  They help the IIF with:

• The Intense Intestines Scholarship
• The Never Stay Quiet Programs
• Intense Intestines Social
• And more

Please consider a donation of any amount, since every bit helps us reach our goals in the IBD and ostomy communities.  You can make a contribution to any of our riders by clicking the link below.

http://www.razoo.com/team/Intense-Intestines-Cycling-The-Big-Apple

Everyone who makes a donation of $20 or more will also receive a Intense Intestines Never Stay Quiet wristband.

Thank you so much for you help and support with the Intense Intestines Five Boro Bike Tour ride.

VIDEO POST: The Brain In Your Gut

This is a must watch for anyone with a chronic condition that affects the stomach, intestines and digestion.  It goes into great detail on how the gut works, how the brain affects the gut, how the gut affects the brain and much more.

Please take a moment to watch this 15 minute video.  I can assure you that after you’ll have a better understanding of what might be going on in your body.  You’ll even possibly have an idea of what you might want to do in order to help your body win its fight against Crohn’s disease or ulcerative colitis.

Never Stay Quiet!

Starting the Paleo Diet with Crohn’s Disease

We all hear about so many diets out there that might help us be healthier.  There are literally tons to choose from and try.  I’ve always recommended choosing one and then adjusting it to what your needs will be.  Every one of us has a different body, that works completely differently.  Not one of us have an IBD which acts exactly the same as another persons.  Yes, we all know people who have suffered through the same things, but with medications, different health therapies, diet and more we all can’t expect to have similar results to one another.

Cajun blackened salmon with steamed/roasted Brussels sprouts.

Trying to be as healthy as possible is always worth the effort, as long as we figure out what is good for our body.  Since I got out of the hospital last Tuesday I decided to try the Paleo Diet out.  Basically the Paleo diet, or what is also called the Cave Man Diet is eating anything that is naturally available to us.  Think meat, vegetables and fruit basically.  If it has flour, is a processed food with preservatives or isn’t natural it’s not allowed in your diet.

The idea behind it is to live off what the body is supposed to have in it, without all the preservative and processed foods that occur in our diets today.  Without all the unnatural ingredients going into our body, it will hopefully function more naturally and not have the problems that the normal diet in our society today causes.  And when you think about it, it all makes sense.  Imagine our bodies without fake sugars, fake preservatives, fake chemicals and more.  Of course it would work better and more efficiently.  We basically poison our bodies on a daily basis.

2 day marinated grilled chicken tenderloins with steamed/roasted green beans.

Now I’ve always lived a healthy lifestyle.  Without taking this step I can confidently say that my diet in the past has probably been better than 98% of our society.  Still, I’ve decided to take it to another level and create a diet which works for me.  This is why I’m not only doing the Paleo Diet, but juicing and also cooking all of my food.

I’ve read in many places that our bodies aren’t made for eating raw vegetables and meats.  They are all supposed to break down by fire, which changes them to a softer state and allows us to digest them more.  Raw anything is going to be harder on the body and more difficult to digest than a cooked item.  This is why I’m also no longer eating anything raw.  If anything raw does go into my body, it will be in juice form.

Nurti Bullet Juicer.

A question I’ve received a lot recently is how I eat or tolerate vegetables and fruits.  This is where a person has to figure out what works well for them.  I can never try to eat a raw pepper or apple, but if I eat them in the right state I can get them into my system and enjoy them.  This is why I bought a juicer and cook all my food in the proper way for me.

Cooking!

First the cooking.  When I want a side of vegetables it’s a little bit of a process in order to get them to the point I’m comfortable eating them.  After preparing the vegetables the way I would like, I steam them till they are overly cooked and soft.  After that I usually roast them in the over with Olive Oil (To get the benefits of Olive Oil in my body).  These two steps put together cook the vegetables perfectly, a little crispy even and easier to digest than raw ones.  Trust me, this process makes them a lot easier to eat with confidence.

Organic all natural homemade sausage meatballs.

Juicing!

Juicing is an entirely new part of my diet.  At least once a day I make a smoothie with ingredients I have in the house.  Breaking them down into a juice before they go into my body.  This makes the fruit and vegetables much easier to digest and absorb.  Today for example I made a smoothie with banana, apple, avocado, mixed berries and yogurt.  It was delicious and since it was a natural juice I got all the benefits of eating them and more.

Avocado, mixed berries, banana, apple and yogurt smoothie.

So those are some of the ways that I’ve made the Paleo Diet with juicing work for me more.  It’s not an overnight process of saying “Okay I’ll do this”, it takes time and patience to figure out what is right for you.  For example the other day I tried starting my day with a smoothie and learned quickly that my stomach can’t handle the acid that early in the day on an empty stomach.  It will take us all time to figure out what is going on.  In time though it will help our bodies by knowing we’re doing good for it AND it will help our minds to know we’re doing good for it.

In the post I’ve included pictures of some of the meals that I’ve made.  None of them take very long, are delicious and all natural.  I have slipped a couple of times the first week, but that is okay.  Most experts say it’s best to slowly adjust from a normal diet and make the switch to Paleo slowly.  Listen to your body and mind so you can understand what it is saying to you.  Don’t let either on them be silenced and make sure the NEVER STAY QUIET.

Never Stay Quiet!

Hospital Update: Day 8 But Hopefully Home Soon

Well today is day 8 actually in the hospital. This is by far and away the longest stay of my Crohn’s career for a non surgical visits. This has been a particularly hard one at times, mainly because of the roller coaster ride with pain and how it took a while to get answers. Looking back, trying to head home so quickly after the first few days was a mistake as well. But who wants to stay in the hospital?

Since we got answers a few days ago it has been slightly easier. Still its hard to be patient when you aren’t sure about what course of action to take. Just like so many other IBD related issues, the doctor doesn’t have a clear-cut answer. I get the normal talk about how we have to just wait and see how things go day by day, how medicine will help or not and then try to make a good decision. In my mind as the patient, its hour by hour even at times.

The good news that I have for you, is that things are improving. Yesterday I tried to eat a very small amount of real food. It didn’t sit badly and I wasn’t in pain. Today I’ve been able to handle real food as well. I wouldn’t say I’ve had a meal yet, but I have picked at what they send up to me as a snack. So far I was able to have a little bit of eggs and potatoes for breakfast, and part of a cheese quesadilla for lunch. Tonight I’m going to try a little bit of pasta.

I’ve been really patient with this because even though my appetite is better, I still know that my body isn’t ready for real protein or meat. When I even think about trying to digest anything like that right now I start to have pain. I can’t even imagine what it would be like if I actually ate it. Depending on how tonight goes I might try to slowly eat a little bit of meat tomorrow. If all goes well at that point, probably home on Tuesday. I always try to listen to my body though and the fact that I don’t want to really eat means something. Clearly I’m not ready to go home yet.

No matter what I’m not going to rush it right now. I have so much I need to do and I have to get back on track. Trying to get out to quickly, ending up back here and not being productive isn’t an option right now. With my fingers crossed as tightly as I can be, hopefully all will go to plan and I’ll be out of here soon. A big plus also is that I don’t feel rushed to get out of here for any reason. The girl who I’ve been seeing has been INCREDIBLE and she just wants to see me better, but only under the right conditions.

Never Stay Quiet!

First Flare and Hospital Stay of 2013

Recently my health has been pretty good. I had some bumps in the road at the end of November and December, but what we thought was going to be hard times never actually happened. I was able to enter 2013 and feel pretty good. This changed recently and now we’ve finally figured out what was going on with my Crohn’s.

For a few weeks now I haven’t been feeling great, but I haven’t been feeling poor enough to take true action on it. The constant battle was with nausea which is a symptom that I don’t have very often. It was slowing me down on a daily basis and I thought it was the fact I was weaning off of Prednisone which was causing it.  About two weeks ago I finally got fed up with the feeling and tried to finally wean off the last 5mg of Prednisone which I was on. It wasn’t hard but actually turned out to show us what was going on with my health.

As soon as I got off the Prednisone completely, my stomach wasn’t just nauseous it was filled with pain as well. Quickly I called my doctor and we tried to figure out what was going on, but without truly horrible symptoms to go into the hospital it was hard to pinpoint what it could be. Finally this past Friday I had SEVERE cramping and pain on my left side. The cramping happened on an old scar from my first resection. The cramping was so close to the scar, that it felt like it was literally ripping apart. The pain was a 9 out of 10. I fell to the floor and was horrible pain for about 30 minutes. I tried putting off running straight to the hospital. Later in the day it happened again and this time I didn’t hesitate to get to the hospital for treatment.

When I got to the hospital, they took care of the pain with Dilaudid and ordered a catscan. I drank the delicious contrast which we all love and prepared for the scan. We actually received the results very quickly, but they didn’t show what was going on like we thought it would. Since the pictures didn’t give an exact look at what was going on, we treated it like a normal hospital visit for a quick flare. One day on liquids and slowly getting me back to solid foods. Once I got back onto solids with minimal pain my doctor gave me the okay to go home. I actually took an extra day and stayed in the hospital till Monday to get a little more treatment, but like anyone I wanted to get home.

Once I got home Monday afternoon, I knew something wasn’t right. I tried to eat some easily digestible food, but it still hurt and the pain began to grow again. For the first time in my life I was actually forced to go right back to the hospital after leaving. The pain was to intense and there was no way I was going to be able to manage it at home. At 2am in the snow I had a friend drive me to the ER and was readmitted to the hospital. In the morning my doctor decided to order a GI Series and this is what showed us the answers we were looking for.

During the GI Series my surgeon, Dr. Littlejohn actually surprised me and found me in the radiology center. As the pictures were being taken he was telling me exactly what was going on with my intestines. Showing me a 2.5inch area that had cracking in the intestinal wall. This cracking that was in this area, was also getting slightly infected which just added to the pain that I was already in.

So for the next couple of days I’m on a special liquid diet, hopefully giving the cracks time to heal.  I’ve included a picture of the special protein shake which I’m allowed to drink called Vital.  It’s part of what is called an elemental diet given to patients with specific dietary needs.  After a few days, I’ll try to test out a normal liquid diet, then a mild solid diet and so on. My doctors told me they can’t let me go home until I’m able to handle normal food without pain. This makes it look like I’m going to be in the hospital for at least 4 days on top of the first 3 already spent. Which means that this total stay could be from 7-10 days, one of the longest visits of my life actually that isn’t for a surgery. These cracks need time to heal and now that we know what is going on we’ve been able to come up with a plan for now.

I’ll try to keep updates coming here and let everyone know how things are progressing.  Surgery was mentioned to me once, but isn’t really an option at this point.  We have a lot of resources at our disposal first.  We’re going to try to add 6mp again, my GI wants me to get another opinion, I’m going to try to be more strict on the Paleo Diet and more.  If things don’t change in the next 3 months, then we might consider taking this small 3 inch section out before it spreads or causes a blockage.

Right now I’m just hoping that everything works out, the cracks heal, the medications work and the decisions we make going ahead from here all workout. One good thing is that I’m already planning a weekend of feasts once my stomach is ALL better, so I’ll get some of my favorite meals all weekend long once my stomach is ready for BBQ, seafood and more.

Never Stay Quiet!

50mg of Benadryl + 2mg of Dilaudid = Sleep

Haven’t Had Time To Blog

Recently life has been busy, very busy. Since the start of 2013, it feels like my life has been one thing after another. In this case many of the events being good. Life has been on a roll you could say and this has left me very little time to actually post here on the Intense Intestines Blog. In the grand scheme of things this is a good thing I guess, but I enjoy posting here and sharing my life and IBD stories to my followers.

Since the start of 2013 I’ve had a lot going on. Not just with the IIF, but also personally life has been good. I have been healthy most of the year so far, able to get a few ski trips in, gotten to make some trips to local events and also started dating a great new girl. All of this has left me with very little extra time. I want to share some of the things I’ve been able to do with you as I get back into posting here because when life is fun, you want to share what you are doing.

One of the cooler things I was able to do is going to my first hockey game in years. I’m a huge New Jersey Devils fan, but haven’t been able to get to a game in a long time. I finally got to a game in February and it was great. There is a long story behind it, since I almost didn’t get to go, when I found out only one ticket was purchased instead of two through Living Social. Lisa the girl who I’m dating and who was in charge of ticket purchases made up for her mistake and we actually ended up with better seats. Only 8 rows from the ice and all the action. The Devils weren’t able to pull out the win, but it was still a great day since after we spent the day walking around the city, eating great food and seeing some jazz which is Lisa’s favorite.

Another great time was when we went up to Vermont for a weekend and I helped Lisa learn how to ski a little better. This was a weekend I was looking forward to, but was also nervous about. For weeks Lisa was telling me how bad she was and that she only skied greens. After one run I was able to tell she was much better than that. She actually was a good blue skier and I quickly got her to get out of her comfort zone. Before she knew it she was skiing down blues all day and really happy she was pushing herself more. Now all she wants to do is ski harder. Sunday we spent driving around VT and seeing some of the country which was really nice. It’s hard to complain about breathing in mountain air and laughing all day too.

Lastly, we decided a couple of weeks ago to see Monster Truck Rally. This was a joke in some ways, but it turned out to be a lot of fun. We dressed up like they would in true southern style, put in some ear plugs to make sure we didn’t go deaf and enjoyed seeing the monster trucks jump all over the place. It was actually a lot of fun dressing up and having a little day of Texas in CT.

Overall things have been good, but I have been battling my health recently again. I wanted to save this for an upcoming post. Right now I’m even writing this from the hospital which will be my office for a little while it looks like. I’ll get into what is going on with my Crohn’s in a post soon, since that is a story of its own.

Never Stay Quiet!

Skiing and Snowboarding With An IBD or Ostomy (Video Included)

Many activities can look scary when having an ostomy.  Some of them are and precautions have to be made.  You should only partake in many activities if they are in a safe environment.   Skiing is a sport that some ostomates stay away from.  There are so many factors and variables that go into a sport like skiing or snowboarding that it can be intimidating

These winter sports that so many love can be done with an ostomy and enjoyed.  The most important thing to remember is that they must be done when your body is strong.  If you’re uncomfortable with your body, then an activity with as much motion as skiing or snowboarding is hard.  When you body is strong, you can begin to think about going for a trip.

When planning your trip there are some factors that you must think about.  Here are a few.

1) Conditions: You don’t want to ski or ride when the conditions are tough.  If the mountain is full of ice and the chances are higher than normal for a fall or accident, then it’s not worth the risk.

2) Weather: If you aren’t going to be comfortable on the mountain then you won’t perform well.  This will raise the chances of something happening and possibly falling.  If the weather is going to be 10 degrees with 40 mph winds, STAY AT HOME.

3) Friends: Unless you’re an expert and are at a mountain you know, you should be skiing with friends who know you.  Being with people who know your situation will make you more confident and allow you to ski/ride better.

4) Stay Hydrated: When performing heavy activity in cold weather your body has to work hard.  You might not sweat but your body is still losing moisture.  Wear a hydration system and stay away from beverages that will dehydrate you.

5) Use Common Sense: No one knows your body better than you, so make a smart decision on if skiing or riding at this time is correct.  If you have any doubts, then it’s not the right time. Wait until you know the timing is right.

Performing certain activities with an ostomy can be scary, but most if not all activities can be done with the right planning and preparation   Founder of the IIF Brian Greenberg went skiing last year.  Here are some thoughts Brian had on his first trip since surgery.

“I waited until the time was right.  My first winter with an ostomy was great, but I was nervous.  I spent the winter snowshoeing which still allowed me to enjoy being outside.  Last year the season on the East Coast was not the best.  The conditions were icy and even though I was strong, I didn’t want to risk falling on my stoma.  Later in the season the mountain began to get snow, a lot of snow.  As soon as the conditions were going to be soft, I began to make calls and plan a trip.  I was lucky as a friend has a house I could stay at.  This made me even more comfortable since I knew I had all the comforts of home at the end of the day.  The two days were great, I skied most of the time in powder and never had a worry in the world.  I fell twice and it was like nothing happened.  The trip gave me more confidence that my body was getting stronger and I could do what I loved again”

This shows you that when the timing is right with your body, you still might have to wait till other factors are right too.  Brian was smart and his patience paid off, which allowed him to ski without worrying about anything happening.  Take your time and when it’s right to go skiing o riding for the first time, you’ll know it.

Never Stay Quiet! 

Public Bathrooms With No Doors

View of the stall.

Sometimes there are just things that aren’t right in society.  Some of them we can’t do anything about, others though we can have a voice and make changes.  The other day I was at a local sports bar in Norwalk, CT and when I went to the bathroom there was no door on the stall.  As an Inflammatory bowel disease patient for the last 20 years and one who lives with an ostomy now, I was amazed to see this.  How could an established sports bar like this one not have something as simple as a door on their stall.

I took a moment to think about while I was there.  Being someone who is extremely comfortable with my ostomy I had used it.  My thought process was that whoever might walk into the bathroom right now will just get a lesson in ostomy awareness.  It might just be another chance for me to bring awareness to the cause.

View from the stall.

As I was sitting there doing my thing, I began to think about all the other people in a similar situation as me or how about just regular people who might want a little privacy when they use the bathroom.  As a Crohn’s patient I thought about all my IBD friends who wouldn’t be comfortable with this.  What about those few that have an ostomy who don’t wish for others to see it, how are they supposed to handle this situation when they need to use the bathroom?

This is something that any person might not know about until it’s to late.  They would get to the restaurant, eat a good meal, all of a sudden have the urge to go, get to the bathroom and have no choice.  Someone with Crohn’s disease or ulcerative colitis wouldn’t have a choice.  When the urge hits, you have to go and many times you have to go at that moment.  Sometimes without even enough time to get a friend to watch the door for you if you aren’t comfortable.

Needless to say I’m writing a letter to the owner of the restaurant.  This situation is something that shouldn’t be a situation at all.  How can a bar not have a door on their stall?  I understand that if it were a straight bar or club trying to be trendy, or maybe that will deter people from making a mess, doing drugs, or using the bathroom in any other way that it wasn’t meant for.  But what about the rest of us, the 99% of patrons that just might need to go to the bathroom and would like a little privacy.

I will let you know the outcome of writing management and the owner.  This is a perfect example of how we should:

 Never Stay Quiet!

Jennifer Jaff’s Memorial Service

A few weeks ago I attended the memorial service for my good friend Jennifer Jaff.  It was a day which I will always remember and one which I found very inspiring.  As I’ve written before, Jennifer and I have a lot in common.  With everything we have in common I actually heard so many things about who she was and how she worked which showed me even more about the amazing woman who I still and will always look at as a mentor of mine but more importantly a friend.  Below is the video of her memorial service.  It is long, but it’s inspiring and shares the story of an incredible person who touched so many lives.

Since the memorial I have actually been very ill and in daily pain.  Still I’ve been trying to get work done and put myself in a good position in 2013 to continue to help others with the Intense Intestines Foundation.  I believe Jenn’s spirit still lives within me as I continue to battle my Crohn’s, yet somehow find the energy to want to assist others in their journey with these diseases and others.  Watching her memorial service again has given me another boost of energy and I think it always will.  The day was not one of mourning, it was a day remembering an incredible person who helped countless people in her time here on earth.

These are pictures of the short material they gave out at Jennifer’s memorial:

Front Page

Middle Pages

Back Page

Jenn will always be missed, but what we can do is work as hard as she would in order to carry on her memory and help others with Inflammatory bowel disease as well as other diseases too.  I can go on forever about Jenn and in time I’m sure I will share even more about how she changed my life and helped me in so many ways.

Never Stay Quiet!

Merry Christmas/I Have to Stop Asking for Body Parts

Today is a special day for many people all around the world.  A time to come together and celebrate with family and friends the holiday of Christmas.  It’s a great day to share laughs, stories and be around those that you love.  The holidays are an amazing time of year which is hard for anyone to not enjoy.

Once again this year I made the mistake of asking Santa for a new colon and rectum.  For some reason I haven’t received these gifts the last three years.  So next year I’m going to ask for gifts that aren’t body parts.  I’m guessing it’s just a little hard for him to fulfill my requests, so I understand why it hasn’t happened.

I hope all of you are having a happy and healthy holiday, while being surrounded by those that you love.  Just remember it’s not about what is under the tree, it’s about the people who are around it with you.

Merry Christmas!