intense Intestines « A Guy With Crohn's

Wow, it has been awhile since I posted anything. I am sorry for that everyone. Life has been real busy, especially at work. A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org). I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out. I will say it has to do with supporting others with IBD and I can not wait to get started. I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/). Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season? Did you have fun and do anything special? I know a lot of people I talk to online spent it in the hospital. Myself, I spent it on a cruise down south. My wife and I took a Christmas cruise to Florida and the Bahamas. It was reflecting on the cruise that got me to write this blog. I was wondering how many of you with IBD find it hard to travel and go somewhere?

This was my first cruise where I am gluten free. We had done some research and had read that there would be plenty of options for food for me. I really didn’t worry about it. I should have. My first clue was when we first got on the ship and went to lunch. The only thing listed as gluten free was the mashed potatoes. Good thing I know what normally has gluten in it so I was able to play it safe. This theme of lack of gluten free items would carry on throughout the cruise. Most of the desserts were not gluten free. I started to get annoyed because the reality is that it isn’t hard to do. They did have GF bread and it was ok. My dinners were altered to be GF and I was happy for that. But for desserts, they could have made a flourless chocolate cake. I am sure many people would eat it.

Overall, I had fun on the cruise. We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas. I was lucky and had no major issues with my Crohn’s. I was able to go out and have some fun. I even was able to indulge in a little alcohol…ok…it was more then a little. I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling. Do you pack extra clothes? Do you take certain meds to calm the guts? I remember take Lamodal on one cruise about 3 years ago. I helped me enjoy myself and gave me a life off of the toilet. Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year. I think this is going to be a great year. I myself am working on so many IBD related things. Besides IIF and TCJF I will be working with GYGIG again in June. I might do the CCFA Takes Steps this year. So much to look forward to this year. I hope to post more often and will let everyone know about everything that is going on. I do want to say that if you live in the NYC tri state area, we have some good things for you this year. But that is another post for another time.

Since the explosion of the world wide web, many people have turned to going online to look for help for problems. For many people with IBD, going to a doctor doesn’t always help. They treat the physical problems, sometimes, and very rarely treat the mental problems. Because of the lack of a bedside manner, patients with IBD look for treatment online in the form of forums, social medias and medical based sites.

One new site designed to help those with many illnesses, including IBD is http://www.meddik.com. This is a new site which just came on the scene. It was developed by 2 medical students, one of which has a relative with IBD. The site is a user based site but also carries links to medical articles. The design behind the site is that you can research not just the inner workings of your disease but get first hand help from people who also suffer from the same.

Another site, with a heavier user base is http://www.crohnology.com. This site is made so that you can connect with people who not only have your disease but live near you. You can also ask questions to everyone on the site. You can look up people taking the same meds as you or have the same side effects or even symptoms.

If you are looking for an upbeat site with a dose of comedy, turn to http://www.ihaveuc.com. Adam has UC and treats his disease with comedy. He believes that laughter heals. He also has on his site a place to post and answer questions from other IBDers. Adam also post informative information about the disease and the treatments used.

If you’re looking for a feminine side to IBD, there is no shortage of that either. Sara at http://www.inflamed-and-untamed.com is probably the most recognizable face for IBD. She talks about a lot of personal dealings with Crohn’s and having a J-Pouch. She has become an inspiration to so many people and when she is ill, she in overwhelmed with well wishers.

Another person who is big on helping others is Kelly. She has a page on Facebook called I-Have-A-Bad-Tummy-With-An-Optimistic-Mind-Chronic-Illness-Support. Kelly is the face of being brave and strong with IBD as she has been very sick this year but still manages to come online to help others. She is yet another big inspiration to many.

If you have an ostomy and love videos then check out Maggie at www,youtube.com/LetsTalkIBD. She shows everyone that just because you don’t have part or all of your intestines doesn’t mean you can’t live life. She shows that you can do whatever you want to do, whether it is swimming in a bikini or going to college. Your life doesn’t stop just because you wear a bag on your side. In fact she shows just how life is just starting after surgery.

Are you athletic? Do you have IBD? Well, your life isn’t over. Brian at http://www.intenseintestines and Heidi from http://www.ostomyoutdoors.com both show that just because you have a disease doesn’t mean you can’t enjoy exercise. Whether it is hiking, running or biking..you can do it all.

With so much help out there online doctors need to step up their game. They can’t give the advice that any of these sites can offer. Most doctors don’t have enough time to spend with their patients to find out what is going on in their minds. It is no wonder why everyone turns to the internet now.