October « 2014 « A Guy With Crohn's

Intense Intestines Crohn’s & Colitis Workshop

The IIF team is excited to host our first Crohn’s & Colitis Workshop at Equinox of Greenwich on Saturday, November 8th. We will continue our mission to help as many patients with Crohn’s disease, ulcerative colitis and ostomies.

Where: Equinox Club of Greenwich, 16 Old Track Road, Greenwich, CT 06830

Date: Saturday, November 8th

Time: 1:00pm – 3:30pm

Cost: Free to first 50 participants (RSVP required. Reserve ticket by below)

During the first half of the workshop, our panel will cover a wide ranges of topics: pain management, healthy habits, living with IBD, surgeries options, the mental battle with IBD, and much more.

The second half of the workshop will feature a Q&A session. This will be a time for patients and their loved ones to engage with our knowledgeable speakers and learn more about Crohn’s disease, ulcerative colitis, and ostomies.

The panel is made up of an extraordinary group of people who know how difficult living with these diseases can be:

Dr. Freitas: Surgeon at Colon and Rectal Surgery Stamford and Stamford Hospital

Brian Greenberg: Founder and President of the Intense Intestines Foundation

Bob Baker: Ulcerative colitis patient and colon cancer survivor

Jessica Grossman: Founder of Uncover Ostomy

Join us for this free workshop for the Crohn’s disease, ulcerative colitis and ostomy communities. You can register below.

We look forward to seeing you there!

Have you ever asked yourself this question? You can be sitting there, just trying to think of a word that has slipped your mind and you think what is wrong with me. Or you can be seriously ill, can’t get diagnosed by a competent doctor and again, you ask the question.

These past couple of months have been very busy. I am sorry I haven’t kept up with this blog. When I last left off, I was in the process of changing GI doctors. Since then, I have seen the new GI, been in a bad flare, and have had knee pains from arthritis every day. My body feels like it is falling apart and I have started to ask, what is wrong with me? I used to be able to do so much.

So much is happening in my life and I don’t even know where to start. For my Crohn’s, around February or March (can’t remember when) I went off the gluten free diet. Since then I have slowly felt sick again, entering into a flare. When I saw the new GI, he wanted to try some other meds, including Prednisone. I kind of talked him out of it as I don’t react well to it. He allowed me to just take Immodium. Hopes were that this would slow the diarrhea, help hydrate me, and ultimately help me heal. After a week of that, I failed at it. It’s been about a month and I am doing better, but still flaring. I see him again in November and I worry what the results of the meeting will be. I am thinking of going off LDN and trying a new biologic. What is really comes down to is that I think ultimately I will have to keep a gluten free lifestyle for the rest of my life…and that doesn’t make me happy.

One good thing that has happened lately, is that I participated in a research study from 23 and Me (https://www.23andme.com/ibd/). From this research I found out so much about my DNA. First, I found a second cousin which has led me to find out so much about a part of my family I didn’t know existed. So Cool!! Also, from this, I was able to have my DNA analyzed (www.promethese.com). I found out from there that I am more prone to get Crohn’s Disease (really??) and that I have a higher chance of being a celiac. Gluten Free is really sounding like it is the way to go.

The third major part of my life is my knee. I have developed arthritis in my knee. Physical therapy didn’t help one bit. Every day I am in pain. I hate it and now I have to decide what is the best course of action. Do I get injections for years which only helps temporarily? Or do I insist on a knee replacement, which means surgery. It means hospital stays, rehab, and missing work for who knows how long.

When did I get old? When did my body start to betray me? What is wrong with me? I wish I had answers to my health. I know many of you with IBD wish you had answers for your issues. So now I want to know…how do you feel? What is wrong with you and what are you doing to fix the situation? Do you have any suggestions for me?