Today is....

World Ostomy Day! The United Ostomy Association of America has declared October 4, 2014 as a day for patients to Live, Learn & Share about living with an ostomy.  There are many reasons for people to have ileostomies, colostomies or urostomies ranging from birth defects, illness, cancer, abdominal trauma from car accidents, war or gun shots and many other reasons. No one wants to have an ostomy but if it's a choice between life and death I think most of us would choose LIFE!

LIVING with an ostomy wasn't easy at first. It took a long time to finally accept it but putting up a mental block to not deal with it was not an option. In the beginning I didn't think about it, the appliance was just there.  About two years after I had my ostomy, I was talking with my Psychiatrist neice and mentioned that I didn't know if I had accepted my ostomy but looked at it as "it is what it is". her response was, maybe that is your acceptance. I had never looked it that way but I think she was right, I had accepted it on my terms and went on living my life.

LEARNING how to change my appliance (& keep it on) took several months of trial and error. I had a fear of going out and having a leak. Working with a nurse who specializes in Wound & Ostomy care, helped me find the correct products to use. I started taking an "emergency bag" with me in case of a leak. The first big event, I felt strong enough to attend after my surgery was my Aunt and Uncle's 50th wedding anniversary celebration. Getting dressed took a while to find  the right clothes that fit (I was still very thin at the time) and also "hid" my appliance. I was nervous about seeing all my relatives but wanted to see them at the same time. Unfortunately on the drive there I had a "leak" and had to turn around and go home. I cried the entire way home because I was upset and embarrassed about why I couldn't make the event. As unpleasant as that evening was, it was just another bump in the read to learning how to live.

By writing this blog, I have learned to SHARE what I have gone through to help others learn how to continue living again. I also try offer support to spouses and family members so they can help their loved one . Patients can find support in local groups & on-line. The UOAA has a great website for reference. Inspire has a great group of people who share and sympathize with each other.  Facebook has many open and closed pages that Ostomates can join to share their experiences, you just have to figure out what works best for you.

When I first came home with my ileostomy, I was ashamed and embarrassed. I knew no one with an ostomy nor how to live with one. I felt everyone could see it or smell it.I worried that I couldn't live life like I used too. Four years later, I have met some wonderful people who have helped me embrace my life and my ostomy. Without these people (whether I know in person or on-line) have allowed me to talk about my experience without worrying how knows about it. By Living, Learning and Sharing I have continued to Live, Love and Laugh!

A chronically ill parent always worries...

 Wow, it's been a long time since I've posted anything and I apologize for that. We have finally settled back into the school & fall activities routine, the days start early and seem to go late! We are starting to look at colleges for our oldest which is a real eye opener. It seems like just yesterday Alex was starting kindergarten! Even though he's looking forward to leaving home and starting college, I know I will never stop worrying about him!

Yesterday, I got the pleasure to watch my newest niece for the morning while her parent's were working (really it was cuddling her while she slept on me!). While holding her, my mind started wandering back to the days when we were just thinking of starting a family and all the "what if" questions we had.

• *What is something was wrong with them?
• *What if one of the pre-natal tests come back showing something wrong?
• *What if one of our children has Crohn's Disease?
• *What if we aren't good parents?

There are so many more questions that I could list but you get my point. My biggest fear has always been that one of my boys would be diagnosed with Crohn's Disease. When you suffer from a disease, the last thing you want is to have a loved one go through what you have experienced first hand. Studies have shown that 5 to 20% of those with Irritable Bowel Disease have an immediate family member with IBD. Children of parents with IBD have a greater risk of developing IBD and the risk is greater with Crohn's Disease than Ulcerative Colitis. Neither my parents nor siblings have IBD so I am not sure where mine came from. I do have immediate and extended family with Celiac Disease (gluten allergy), which is another auto-immune disorder so I believe there is a connection from that aspect.

Do I want my kids to have IBD? Of course NOT! Would I be surprised if they were eventually diagnosed with IBD? Absolutely not! I do worry more than the average parent and will watch over them a bit more when they complain of stomach issues (outside of any stomach bug that is going around) and will get them to a GI if I feel it's needed. But I can't live my life worrying everyday that something might happen someday, that would not help me or my IBD.

No matter what chronic illness you have as a parent, there is always the worry that you will pass it on to your children. Mike and I didn't let my Crohn's stop us from having children. Luckily, my pregnancies were easy and my Crohn's was in remission during all 3 pregnancies. I will always have a little fear of the unknown (who doesn't?) but for now I am going to cuddle Baby Z and teach her to Live, Love and Laugh through Life!

Me & Baby G!