Hey Bob, loved your reply to the MW dude from Texas! But as an afterthought, in his defense, sometimes life throws you so many curve balls that you don't know what to do next... or how to cope. I'm grateful for my ostomy surgery, nearly 60 years ago, which "cured the UC issues. But life still was a rocky road. My ex still had Crohn's. My two kids had UC and Crohn's respectively (managed on medication, not surgery). We had some really good years, then divorced. I graduated from college, traveled lots, and then about 10 years ago, the ailments started piling on. Hep C (from transfusions), liver disease, osteoporosis, diabetes, kidney disease, 3 kidney operations, 2 sinus surgeries, ongoing arthritic issues (hands, feet, knees, back), lots of physical therapy. I see 10 doctors, one for every "system." That's my social life, but such is life. It's a rocky road. I try to remain grateful for each good day. These days, I'm coping with erratic, chronic IBS, which causes "the runs," dehydration, and ends with a trip to the hospital for IV fluids. We can't identify the foods that may cause it, and there is "no cure." So I'm back to a very basic diet of eggs, proteins, oatmeal, bread... virtually no fruit or vegetable, no onion, garlic, lemon or limes, or carbonated anything. If I want anything other than basics, "it's regarded as a test, one at a time." Day-to-day life is a challenge. A throwback to my UC days. It's difficult to make plans, so life is one day at a time. My days of "long distance" travel are gone. I don't want to have an attack in another country or where they don't speak English. I got cold feet and backed out of driving on my own to AC (an hour and a half away) to spend a few days with friends. What would happen if I got "stranded there and couldn't drive home?" It's difficult to live with the fear, but I don't want it to take over my life. I'm not that sick 12-year-old now. I'm older (74) but not much wiser. I don't have the luxury of imagining a long life ahead of me. But then no one knows what the next day or the future will hold. I try to hold on to "faith" and live each day to the fullest, but it's a challenge to stay positive. Prices keep going up, and I lost my part-time jobs (to COVID), so each day is a financial struggle. Do I sell my house and downsize now, next week, next month, next year? No easy answers. Some days, I just want/need to pull the covers over my head and not think. Thank goodness for music, TV, or a good book. Have I given up? No way. Is it easy? Not at all. I have more empathy for those who are struggling to adapt to changes in their life. Just little empathy for my own situation...
So my question to you and all my "ostomate" friends out there... How do you cope when your life becomes "smaller and smaller" because doing more is oh so difficult? Yesterday, I cancelled a pulmonary rehab session, and today I cancelled going to yet another doctor for a follow-up after last week's emergency hospitalization (4x in 2 years, 2 of which were life-threatening and acute), not to mention the countless times I've coped with dehydration at home. When I write to others (about ostomy maintenance and acceptance), I'm upbeat and positive. But living life while you face "possible death experiences" has become a major issue. I guess it's like "living with/coping with cancer" or any other life-threatening disease. It just feels like I've been here, done that (because I have)... and I don't have the same mental and emotional strength that I did as a child. Any helpful words or advice... most helpful. Thanks, Marsha...