What Has Your Disease Taken and Given? Share Your Thoughts!

Hi everyone! I was just out loud! I have a couple of Questions for all of you ...Please be totally honest..there no such thing here as a cookie cutter or text book answers

1.What has your disease taken away from you?
....examples would be..they took a body parts from me and I left with this bag, I am mad because I had big plans when I was young and I was unable to fullfill my dreams,I didnt get to go to school like normal kids because I had tutor in the hospital,hard to make friends,hard to tell friends what I have because i'm embarrassed,taking my teenage years away from me,Made my parents and family worry,not keeping a boyfriend,not getting married ,not having children, not falling in love, having children and it leaves your body unable to care for that child,letting other people help raise her because I was so sick,having a family that thinks they know it all,tired of people nagging me about my weight or diet or how to take care of myself and disease,mad because I dont look sick...people dont believe i'm sick,mad because my care faild..twice,mad because I lost my marriage because of my selfishness,Having to miss family events,lost myfelf in addiction and depression,I cry because I see the disapointment in my childs eyes when I say "not now... mommy doesnt feel well tonight,or I fall asleep first so I dont have to be intament with my partner, I hate how it made me feel to have this ugly appliance on me,not sexy anymore,unloved, They took my confidence they day they gave me the ostomy,took my life away from me I had so many plans! These are someof the emotions that I remember going though for the last 26 years of dealling with this disease... They always seemed to always be negative..and with that negativaty I lost so much in my life untill one day years and years had gone by......I asked a differant question!

2.What has your disease given back to you ?
....examples would be..I lived because of the ostomy bag, I just needed to make dreams that fit my limitaion untill I have the energy to fullfill it all the way,learned to be patient,I had the chance to go back to school and passed with a 4.0 and top of the class( that was a no brainer because I went to school to be a et nurse lol!)I did get to fall in love and learned that my heart could be broken and I would be ok...twice, had a dangerous pregnancy but it turned out to be blessed with a beautiful daughter,who does not have crohns,got to homeschool her to make up from the seperation when I was sick,so lucky to have a family that supports me,fell in love , The need to love and to be loved,gained back a differant kind of confidence,I had to make differant plans for my life...better! I now have the ability to look at someone and always find the good in them, most of all I learned patience and acceptance and now wanting to live my life and not want to die!I now have a better and differant relationtionship that are more postitive! I joined www.meetanostomate.org
There still so much more to grow and to learn. We could all sit here all day and answer this one, but be honest and tell us "Just what your thinking"............Please no judgements ...untill you have been in the other peoples shoes you dont know what they went though. Even if we have similar stories there unique as each of our stomas are!

Hi Traci, my disease UC took my colon and my asshole, but it gave me or showed me how to have patience after having an ileo for the past 25 years. I found that I needed people to help me get through my healing process and get my life back, so I had to wait for them to be available to help me. Ron in Mich.

Thanks Ron for sharing with me!

To be honest - just realizing my disease has made me a stronger person - I have to be, to survive. I lost my colon to cancer and am still battling breast cancer. I have a gene in my body that creates cancer - but they want to test more because the findings are not 100 per cent.
It is harder to live in the states because if you don't have insurance, you're forced to be on Medicaid. If you make too much money, you get no Medicaid and there goes your insurance.
My husband is from England and we are talking about going and living there just so I can get better medical care and it's free. It doesn't seem fair that we have to move and leave our grown children so I can get free medical care. Here in the states, they have pre-existing conditions, so it is impossible to get decent insurance. And if you are lucky enough to get insurance, it costs too much and there usually is a $10 or $20 thousand deductible. I hate my bag. Having an ileostomy, it constantly runs.
So when we go out, I am frequently using the bathroom. I'm only a year into this bag.
And I know I will never get used to it, but I noticed to be comfortable going out, I don't eat so much, watch what I eat, and try to ignore the bag as much as possible. I do miss swimming and using the steam room at the gym. Maybe one day I will join the gym again and see what happens. The point I am trying to make is that feeling sorry for myself hurts me more than just getting on with everyday life and by hoping and praying that today will be a better day than yesterday. Good luck everyone. Butterfly 48

HI butterfly,

I'm 65, lost my anus and colon in December 08. Now I have a bossy little brother made out of Hollister plastic, named "Thumper". It took me almost 2 years to get physically and emotionally anywhere near normal. I was fitted in the hospital with too small of a wafer bag set. I remember those nights waking up covered with, well, you know. I eventually got refitted larger, that opened up a whole new world for me. A lot less leaking and spills.
I've learned to pretty well accept it, but I always have to watch for movements immediately after eating out. I've gained 30 pounds since the surgery, eating pasta, bread, cereals, etc. just to keep it thick and now because of the weight gain it's hard to keep a good seal at the wafer for more than 2 days. I'm diabetic (2), CHF, COPD, etc. I can't seem to control the water loss without eating those foods. Any suggestions? I'm sorry that your physical problems are causing such grief. The LORD bless and hold you and yours.

I'll keep in touch.

Even though I have only been like this for a year - I have found 3 ways to keep my weight down. As you know, when you eat a lot of bread, pasta, and desserts - sugar, etc., you gain weight. They do taste good and are very filling and do help with the bag. What I do is try to eat 3-5 meals a day (small), drink alkaline water (high pH water). What this water does will hydrate you in 10 minutes; normal water takes 1 hour to quench your thirst - it also will fill you up from hunger and help your digestion. Eat fiber - I get a prescription fiber - so you will probably have to try the many in health stores to see which one works for you. I do miss my salads. I have tried some vegetables and fruits - but I am real careful. Getting back to high pH water - you can get info on the internet or check your local health store. They do have pH drops that, with 2 drops, will turn filtered water into a better-tasting water with the high pH. As for your diabetes - I know diabetics that use bitter melon (herb). I get mine from Swanson Vitamins - diabetics have had good results - also you could try the aura patch for diabetes. Hope this information can help you. Good luck, Butterfly48.