07 May < > Navigating the Bermuda triangle of rooms. Posted In : Blog 07 May Ryan 6 Comments EmailLike this:Like Loading... 6 Comments Rachel Mitchell Reply cowboysvscrohns.com Check out these boys site. Crohns affects several members of their family, and they are making a crosscountry ride to raise awareness and money…. Really great kids…. well college kids… met them at the outfitters they worked for in Montana… They are riding from Montana to Washington State….. God Speed to both of your efforts ! Ryan Reply I follow them on twitter. I would love to join them for a week. But they probably wouldn’t want a city slicker gumming up their rhythm. Thanks for commenting! Kim SMIDL Reply My name is Kim. I am 51 yrs old and when I was 14 I was diagnosed with ulcerative coloitis. I was in and out of hospitals having blood transfer fusions and IV therapy for 2 yrs. When I was 16 I had my whole colon and rectum removed and had an ileostomy. This is when my new life begun! I learned to water ski, went body surfing, bicycling and playing tennis. Nothing was going to keep me down! I was married and had 2 children. Life does go on! When I was 38 I had a new procedure done in St.louis it is called a BCIR, an internal pouch was made with my small intestines and I empty it with a catheter. I no longer have to wear an ostomy bag. It is very sad not many people know about this including Doctors. The surgery is only performed in a few states. It is an amazing surgery but just like ostomy surgery no one talks about it and there are 75,000 to 100,000 operations a year. We should be talking about it. It is a shock when you hear you have to have one because you feel like the only one. I am not embarrassed to tell any and when I do they are so surprised! I would love to help get the word out. Thank you for telling your story. Stay well! Ryan Reply Thank you for commenting, Kim. What a journey you have had. I agree 100%. Information needs to get out there about the surgeries available to patients. I was very lucky. I only have a one inch round scar where my stoma was. My surgeon at the Cleveland Clinic removed my entire colon through that little hole. Perhaps you would like to write a guest post on the blog further explaining your surgery? Would love to have you write one. Jessica Reply Hi Ryan, Stumbled upon your blog through The Crohns Journey Foundation and upon reading this post, immediately started sobbing. My husband is the Crohnie (?!) in our family, and though I try to be sympathetic, I hate that I can’t understand how much he really means it when he says he’s suffering. Or why we have a hard time scheduling activities, or making plans, or leaving the house. Your writing made me realize – a tiny bit more – how much he’s suffering physically + emotionally and how I really need to turn my patience up – way up. Thank you for being out here in the world wide web. I tried subscribing, but keep getting an error. Ryan Reply Hi, thank you for your nice comments. Sorry to hear that your husband is not feeling that well. Not sure why you can’t register for the blog. Are you on a MAC? Will ask our web guy if there is an issue we don’t know about. Post a Comment Click here to cancel reply. Your Name Your Email Address Your Message Notify me of follow-up comments by email. Notify me of new posts by email.