I spoke with someone a number of weeks ago who just recently went in to have Jpouch surgery and during the course of our conversation, it made me realize a lot of things about how different IBD patients are. The way a patient with crohns disease or ulcerative colitis presents is not only very individual but their story is completely different too.
Before I left to participate in my second year of crewing Get Your Guts in Gear, I wrote about how much this event changed me last year. I talked about how I was welcomed with open arms into a community, or a family actually, filled with some of the most amazingly inspiring and warm people I have ever had the pleasure of knowing.
But I left out one of the most important parts of this coming weekend, on purpose. And that was that my dad was going to not only be attending the event with me, but riding the 150 miles over the course of two days. I may have mentioned it in passing but I am not even sure I did that. Truth is that I was really nervous for him to ride and felt like if I talked about how much it meant to me to have him there prior to the event that I may be jinxing things.
A picture is really worth a thousand words.
I have a lot of writing to catch up since it has been a busy few weeks for me (in a good way!). I did want to briefly let anyone who is not on facebook or twitter know that the weekend went fantastic for BOTH my Dad and I. Thank you all so much for the support, love and encouragement… we could’t have done it without your help!
Write more soon. : )
Last year at this time I had no idea what I had gotten myself into. I had been communicating with an incredible girl online who convinced me to crew in this event called Get Your Guts in Gear, which was a two day bike ride that raised money for people who suffered with inflammatory bowel disease. I had made a comment on a facebook page that she was the admin of about how much I missed swimming competitively and little did I know, my life would never be the same. It opened the door for this individual (who I know does not like the recognition I normally would give to someone who means so much to meJ ) to message me privately about how she understood what I was going through.
I had heard her talk about how Get Your Guts in Gear was something that I had to do because I would be a completely different person if I took part in it. But I was petrified. I didn’t know anyone except for her and I only knew her on facebook so the idea of going away for the weekend with a bunch of strangers, and potentially being in a position that would force me to be open about parts of my life and body that were so difficult for me really had me torn. On one hand I knew it was something that I needed to at least try but on the other, it was just so overwhelming.
When I came home after having an awful day last April, I received what was probably my friend’s last attempt to get me to be involved and the message just said “There are still spots open to crew New York. Just Saying.” I remember this vividly. I was standing in my room starring blanky for probably 10 minutes and then just opened my laptop and registered for the event.
There was no going back….
Within literally minutes of being there, I could just tell that it was exactly where I needed to be. And after the first night, I had truly felt like I had known all of the people that were there my entire life. The weekend of Get Your Guts in Gear truly changed my whole outlook about this disease and just the world in general. It was the first time I was actually away and just able to be myself. I was pretty much eating the way I would normally eat if I was home, without caring or worrying about what anyone thought. I was amazed at how similar I handled certain situations, at how much my feelings mirrored other peoples, and just generally felt like I had found a real family with people that were complete strangers to me just days before.
My life was never the same after that. I never ever felt alone again.
And even though this friend of mine does what she does for no other reason than she is one of the greatest people I have ever had the pleasure of knowing, I really do want to say thank you to her and for all of the people that were there with me last year. I will never forget how much you all helped me not only get through the weekends challenges but have been by my side supporting me since I met you one year ago around this time.
I am very much much looking forward to the weekend ahead and hugging the crap (pun sort of intended) out of all of you. And for those of you who can’t make it, please know how much you will be missed and how loved you are<3
THIS POST WAS WRITTEN BY BRIAN GREENBERG, THE FOUNDER OF THE INTENSE INTESTINES FOUNDATION!
May 18th was another great day for the IIF. We held our 2nd Annual Climb for Crohn’s & Colitis event at The Rock Club. This year was exciting for us as Sara Ringer of Infamed and Untamed flew to the New York City area to help the IIF raise IBD awareness for World IBD Day.
At the event we had more people with IBD attend this year. We were happy to see others show that it is possible to live a normal lifestyle at times with these diseases. It wasn’t easy as many of them were battling during the day, on medicines or even not eating at times in order to attend. The fact they didn’t let their IBD keep them from attending is an amazing accomplishment.
The Climb for Crohn’s & Colitis this year raised almost $2,500 to help those with IBD and ostomies. IIF programs such as the Intense Intestines Scholarship continue to grow due to support from events such as these. As the IIF continues to grow we’ll always look for ways to assist those with these diseases.
2nd Annual Climb for Crohn’s & Colitis World IBD Day Video
We’d like to especially thank The Rock Club for allowing us to use their great facility, Shawn Kapitan of DTE Photography for documenting the event, Sara Ringer of Inflamed and Untamed for helping us raise IBD awareness, all of those that donated items for the raffle and everyone else that helped us make the event a great success again this year.
All of us on the IIF team are already looking forward to the 3rd Annual Climb for Crohn’s & Colitis next year. We have some great ideas which are going to make the event even better than the last two. Mark your calendars for May 17th next year now and we look forward to seeing you at The Rock Club for another great event.
Please visit http://www.intenseintestines.org to find out more about upcoming events, latest IBD news, and how you can be a part of a wonderfully growing community dedicated to supporting you through whatever challenges you may be facing as an IBD/ostomy patient.
One of the worst things I think someone can experience is feeling like they don’t have a voice or say in what is going on with their own body. And as someone who has had to spend far too many nights in the hospital, I can honestly say that the hospital is truly one of the worst places to be in that respect. Two of my best friends (/sisters) are in the hospital now so my mind has been flooded with emotions about that wretched place. Without going into detail about their situations, I wanted to talk about some of the misconceptions that people think about being a patient in the hospital.
For people who have been fortunate enough to never need to be hospitalized, or only need to be in the hospital for something minor, the hospital seems like a place of true comfort and safety. After all, from an outside perspective it really does seem like a place where you come, you rest, you’re taken care of by wonderfully considerate nurses and warm doctors, you have your sheets changed and your room cleaned, you have food brought to you in bed, you are doped up on pain medicine 24/7 … what is there to complain about, right?
What television shows and movies fail to depict is the true reality of what goes on inside a hospital.
I want to also preface this by saying that I was treated at Mt. Sinai Hospital in Manhattan, which is a one of the best hospitals… and I STILL dealt with this, every single time I stepped foot into what I now refer to as “the torture chamber.”
Protocol: Every single medical personnel is worried about having their license taken away or being sued. In an effort to avoid that, patients are put through an inordinate amount of tests and procedures to make sure that every possible thing is covered, regardless if it is at the detriment of the patient’s physical or emotional well being. For starters, every morning, whether you need it or not a patient’s blood is drawn bright and early. Same goes for vitals (blood pressure and temperate every four hours or so). It took me years before I realized how absurd this was and started asking doctors what they were actually checking for when they were putting me through hell trying to find a vein every day. Most of the time, the answer was that they didn’t know or that it was just standard, or that some random doctor ordered it so that he/she could see it with their own eyes. It was then that I started refusing certain things. It got to be so bad that between the hours of 4am-10am when they did rounds, every time the door opened I would start freaking out because someone would come in with needles or need to touch me and put me through countless unnecessary things just for the sake of covering their behinds.
Lack of communication: I was very lucky in that I had doctors and parents who were ALWAYS on top of things for me and even then, the amount of micromanaging I had to do was outrageous. I needed to consistently make sure I wasn’t given incorrect medications, was being told everything that was going to be done and for what reason, and also make sure that the countless medical personnel that walked into my room every day were on the same page. Orders were changed without my knowledge all of the time, and it was also usually after spending hours (sometimes days) fighting to get my point across with the appropriate physician.
Loss of Dignity: The moment I became a patient, my dignity was thrown out of the window. I was no longer a person; I was just patient X who was under the care of Dr. so and so, in RM whatever, being treated for this condition. I would have doctors storm into my room (who I had never met before) at all hours of the day/night and just lift up my hospital gown or shirt, push on my stomach or touch my incision when about five people had done the exact same thing seven times just in that same hour, tell me to have a fantastic day, and walk out never to be heard from again. AHH, NOT OKAY! AND NOT NECESSARY!
I never had a problem speaking up for myself but whenever I was in the hospital, I became a completely different person. The more I think about this, the more I realize that I didn’t start out this way in the least bit.
My very first hospitalization was just a few weeks following my ulcerative colitis diagnosis. I was a very spunky 13 year old and carried that with me as a patient for years. But as the years went by and I continued to see that no matter how much I tried to speak up for myself and it never ever mattered, my whole outlook changed. I no longer looked at doctors and hospitals as a place that would provide care and comfort. It is sad actually because I do know that doctors generally go into the medical field because they want to help people! But it is some combination of the system and the lack of common sense/bedside manner of many physicians that makes me cringe.
All I ever wanted, and all I know any patient wants when they enter any hospital is to be treated with respect and to work WITH someone to come up with a treatment plan that is best for them…. given that it is their body, their life, their mind that is enduring so much, and seeing that they have every right to do so, I can’t fathom why hospitals continue to operate in this fashion.
When I went to visit Damon, the 9 year old boy who had an ostomy, in the hospital last Sunday, the issue of a picc line or central line came up. When I asked how he was sleeping the response from his moms was so incredibly familiar. They told me that every time the door opened, he felt an enormous amount of anxiety because he was so afraid that someone was going to need to take blood (again) or attempt to start an IV.