Coping with Stoma and Post-Surgery Challenges

Only joined the forum yesterday.  Just read Imperfect's message and  share her feelings. Have had a similar experience. In my case, I was informed only a few hours before my surgery about the possibility of an abdomino-perineal resection.   Never heard the term before and got the shock of my life to see my stoma for the first time.  Felt cheated. I didn't get any moral support nor was I explained how to care for my stoma.  After three years I get along with my life with "trial and error". Having to cope with constant diarrhoea and a prolapse bladder makes matters worse. Can anyone with a similar experience please tell me how you cope.  Thanks

hi, since you have no replies heres a short and very unprofessional little rhyme



lets not forget that life is dear

just because we got no rear!!

we can still love and play

thank you god for another day

i`ll stand up straight, like a man

i`ll show the world, oh yes i can

i will not wimper, never cry

if i fail, again i`ll try

life will test your very mettle

for second best i will not settle

i`ll be the best that i can be

others are watching, what will they see

dont let them see that you`ll give in

remember always, who dares....wins

its very easy to picture ones self as a victim in these circumstances.....dont do it.
i dont know your situation as you have no profile. however i do know that the cemetery is full of folks that would glady swap places with you. what about the people who are born without sight.....do you think they would trade places with you??? over come your problems and people will respect you for it.... pity your self and others will only pity you too... which will you choose??? god bless you in this struggle we call life.....

Dear ni,
   Welcome to the forum!  This place has been a great help & support to me.

How do I cope??  One day at a time dear.  Somedays, one minute at a time.  I've had to learn to play the hand I've been dealt. I try to look at the positive and not the negative.  I am SPECIAL! Is it fair???  Of course not! But life is not fair.

I'm not saying I never have a bad day.  I do.  But...I refuse to stay there for long!

My saga started 3 yrs. ago with cervical cancer & my bowels were damaged from the radiation. I am on my second time around with my ostomies. I have 2 bags.  An iliostomy & a mucas fistula.  I have incontinence so I have to wear protective underwear constantly.  I have almost no small bowel left so I have to hook up intraveinously to nourishment for 12 hrs. a day.  Some days my bags leak unexpectedly.  Most days I am on the toilet constantly. My iliostomy is very active & liquidy so whatever I put into my body comes out very quickly. Is it a pain in the neck, and something I really get tired of having to live with?? ABSOLUTELY!!

BUT...

I can see!  I can hear!  I can walk!  I can talk!  I can feel!  I can breathe!  I can eat!  I can drink! I can laugh!  I can love! I can give! I can cook!  I can do housework!  I can drive!  I can decorate!  I can shop!  I can enjoy my family & grandchildren!.... think about it.
🔒 Login to see image

Welcome to the forum Ni......Not much to say after Mr Mild and Janice....great advice guys..We osty-mates have all been there at some stage of our Ostomy history...Taking one day at a time when things are going bad- is all one can do...and try and see there are so many others out there doing it worse than you can imagine...So, now I'm grateful to be here and my stoma 'Stanley' doesnt rule my life anymore..I had no support till I started that group here.(mmm!)..but then I found here,the Osty site...was like finding a bunch of long lost mates.So hang in there..its not all doom and gloom....And I do things...crosswords...sudoko.jigsaw puzzles..anything to keep my mind busy and off whats deep in my head....lmao..Take care and again ...welcome aboard..Tara
🔒 Login to see image

Thank you so much, guys, for your kind advice and support.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Ni, whenever I begin to feel down about my 'situation' I read this poem.  I love it! I actually saw this poem in a hospital radiation room.  Don't worry, you're not alone....we all have bad days!!!!  Just jump back in the saddle as soon as you can!!!
Sharon

Hi Ni welcome, I understand your depression I had Cancer twice and had every thing removed I have an Ileolostomy But we can help each other to cope we can cry together, scream together & hopefully laugh angain together, I joined this site not to meet a so called love match I had that but he passed away, but to share learn, & hopefully help others hope you feel better
🔒 Login to see image

Eddie

Well Ni I'd like to share this with you. Last winter my Potassium went through the roof and I landed in the hospital, lots of drugs pumped into me but the big problem was they couldn't keep the wafer on me, 6,7 times a day, what a mess. After a couple of days I was discharged but the problem stayed. I had put a call into a doctor to cancel an appointment and left my number. Here is where it gets funny (NOW) I was very weak and in the bathroom trying to change my iliostomy, but I was so weak I had to sit on this small stool in front of the cabinet where my supplies were but I couldn't open the doors because my knees were in the way. So I"m huffing and puffing, doing everything backwards, like removing the old one without being prepared, and sure as hell the doctor called me and I breathing so hard I could hardly talk, the phone in one hand and pads in the other trying to keep the mess to a minimum. She suggested I should have a nurse come in to help, yeah like 6, 7 times a day. I have often wondered what it would have been like to have a camera shooting this scene. This kept up for a week or so and finally back to normal. Remember things can always get worse, Keep the faith, in yourself. Luck Ed

Ed, you're right, these ileostomies can be a nuisance! Ah man, even the thought of changing the darn thing 6 or 7 times in a day is not pleasant!!! Isn't is amazing how resilient we are? So glad you have things under control (at least I hope you do
🔒 Login to see image
) and I'm happy that the doc suggested that you get some nursing help to get you through the tough time.

p.s.  I admire your ability to look back and see the humor in the situation.  Thanks again for sharing your story.

To everyone reading this thread...(Ni, especially you!)...Have a great day!    

Sharon

Hello Ni, I remember lying on my hospital bed seeing my scars and my colostomy bag. The good news came that they no longer thought i was going to die from the cancer. I looked up and saw the clock on the wall in front of me, I herd a voice deep inside me that said. What will you do with the rest of your life and the time you been given? If you find purpose and hope that God is not done with you on this earth it helps you focus on the victory rather then defeat. Get up, wipe the dust off your feet and keep going. Search and find ways to deal with your every day struggles. This fourm is a great place to start, also use the internet, talk to your doctor, find a friend who understands you and loves you regaurdless. If you believe in Jesus, think about his suffering. Ours does not compare to his. He understands and loves you and will help you as He has helped me and many others. We suffer because of the fall of man in Genises. There is a song you should listen to by Third Day, a Christian Group called, "Cry out to Jesus". Keep the faith and God bless you.
Taylor Player

Thank you, guys, you are just beautiful people.  I hope I will learn from your courage and positive thinking. Kind regards.