Hey Bob,Loved your reply to the MW dude from Texas! But as an afterthought/ in his defence,Sometimes life throws you so many curve balls, that you don't know w hat to donext......or how to cope... I'm grateful for my ostomy s urgery, nearly 60 years ago, which " cured t he UC issues.... But life still was arocky road.. My ex still had Crohns, My two kids, hadUC, and Crohns respectively. ( managed on medication- not surgery),We had some really good years,then divorced,I graduated from College, travelled lots....and then about 10years ago, the ailments startedpiling on.. Hep, C ( from transfusions)Liver disease, Osteoporosis, Diabetes,Kidney disease,/ 3 kidney operations, 2 sinus surgeries.. Ongoing Arthritic issues, ( hands, feet, kn ees, back) lots of physical therapy. I see 1 0 doctors, one for e very " 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 cant identify the foods that may cause it, and there is " no cure"... So I'm b ack to a very basic diet,of eggs, proteins, oatmeal, bread..... viartually 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 Throw back to my UC days... It's difficultto 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, andbacked out of driving on my own to AC ( and hour and a halfaway), to spend a few days with friends.. What would happen if I got " stranded t here, and couldn't drive home".. It's difficult tolive w ith the fear , but I don'twant it to take over my life... I'm not that sick 12 year oldnow.. I'm older ( 74) but not much wiser. I don 't have the luxury.....of imagining a lon g life ahead of me. But t hen no one knows what the next day or the future will hold.. I try to hold on to" faith", and liv e each day to the fu llest, but it's a challenge, to stay positive... Prices keep going up , and Ilost my parttime jobs ( to covid), and so each day is a financial struggle.. Do I sell my house, and downsize now, next week, next month, nextyear? No easy answers... Some days, I just want/ need to pull the covers over my head, and not think.. Thank goodness for music, tv, ora good book.. Have I given up? No way. Is it easy? not at all.. I have more empathy for those w ho are struggling to adapt to c hanges in their life. Just little empathy for my own situation...
So my question to you, and all my " ostomate" friends outthere..... How do you cope, whenyour life becomes " smaller and smaller" , because doing more is oh so difficult.. yesterday,I cancelled a pulmonaryrehab session, and today I cancelledgoing to yet another doctor for a follow up, after last week's emergency hospitalization ( 4x in2 years- 2 of which were life threatening and acute ) not to mention the countless times I've coped with dehydration at home. WHenI write to others ( about ostomy maintenance and acceptance) I'm upbeat and positive.. But living life, while you face" possible death experiences", has become ama jor issue.. I guess it's' like " living with/ coping with cancer"orany other life threatening disease... It just feels like I've been here, done that ( because I have)....and I don't hav e t he same mental and emotional strength that I did as a child... Any helpful words or advice.....most helpful. Thanks.. Marsha..