Bowel Disease Support
I've been wanting to start some kind of support group for people with bowel disease for a long time now. I am very open about having UC and my battle to find good health care, physicians, diet, etc...and I want very much to help those who are struggling or just need to know others who have similar issues.
Bowel diseases are very, very common as it turns out. IBS (Irritable Bowel Syndrome) Ulcerative Colitis, Crohn's Disease or other IBDs (Inflammatory Bowel Disease) can be very frustrating and disrupting to your lifestyle. Most cause very uncomfortable bowel movements, diarrhea, constipation, cramping, nausea, weight loss/gain, vomiting, fatigue, depression and many other side effects. This can be very embarrassing to the person who has these issues. It's not something you want to discuss in front of people you do not know well at all!
The tests to diagnose these diseases are not fun either. No one enjoys being poked and prodded but when the tests turn to colonoscopies and stool samples it seems worse. It's one thing to catch a urine sample but a whole other ball game when you are asked to provide a stool sample. Finding a good GI doc isn't as easy as it sounds either. I went through several before I ended up with Dr. Lusby. He actually did his residency under my doctors at Scott & White before moving to Amarillo to open his own practice. A Godsend.
I have visited with several people who are dealing with bowel disease. And the one thing we all have in common is that it's not something we want to talk about with just anybody. It's just so dang personal. Who wants to talk about poop at a dinner party? I mean, really, it's a disease that can be very isolating. Not just because of the embarrassment issue but the mere fact that sometimes you cannot leave your house for fear of crapping your pants somewhere in public. You laugh but it happens! I know...
Anyway- back to the support thing. I am seriously thinking of starting a group to meet monthly or every 6 weeks or so. I want to open it to people who have bowel issues and people who live with people who have bowel issues. I want to share my own experiences and learn from others. I can't be the only person who would benefit from this. We could have guest speakers who educate us, we can share diet tips, we can bond and form friendships.
If you know someone who would benefit from something like this, please let me know! I am serious about starting a support group, maybe late summer or this fall when school starts back up...
contact me at monnieburdett@gmail.com
Lusby is Jami's doctor too. We really liked him. Make sure you give her a call when you get your group going.
ReplyDeleteHey Monnie, I would definitely come to a support group. Gary and I have always joked about how beautiful they have managed to make Breast Cancer. It's almost become like a badge of honor. You get to wear all the pink stuff and everyone walks and runs and talks about it. There are a million support groups for women who are living with it. But, what do you do when the cancer is in your intestine??? Gross! I always joke that i'm going to create a whole line of brown hats and t shirts that say "oops I crapped my pants". Anyway, as strange as it may seem, I'd love to talk to others who know how it feels to have a bowel disease. Thanks for the idea, and Let me know. Julie Solomon
ReplyDeleteMonnie, that's where my co-workers are awesome. We've had some of the best poop joke conversations at lunch since my ordeal began. It's hilarious! But, I do know what you mean. The average individual doesn't want to discuss these issues.
ReplyDeleteI think your idea is a great one! Would love to help, or at least participate.