A Year Ago October 21.

One year ago yesterday my life changed. I had my annual colonoscopy done by my endologist that had always done them for the past 20 plus years.
But, for some reason I had a funny feeling that something was wrong, even before my doctor did the procedure. I told myself "Stop worrying. Everything is going to be ok. It always is ok". But it was not ok.
When my doctor came into my post op room his face said it all. My words to him was "It's time for me to have the bag isn't doc". His response was " I am sorry to tell you my dear, but yes its time". I always knew this day was going to come, but still my world came crashing down all around me. My doctor told me my options and not to make a dission right away.
Needless to say I was scared and cried just thinking about it.
That weekend I was rushed into the hospital from a flare up that occured after the procedure. I recall crying and saying "Please, Please don't do the surgery right now. I am not ready." My doctor told me he was not going to have them do it. He told me " I gave you my word of letting you think about it. And I know you haven't." Surgery was not done that weekend.
For one week I lived with not knowing if I should have the surgery or not.
Then that next Sunday morning I was flipping the TV channels and Joel Olstine was on. I nomally do not watch his ministry shows, but for some reason that day I did. I recall what he said " God does not give you hardships so you can fail. HE gives you hardships so you can Prevail." At that moment I felt a calm come over me, and I knew I needed to do the surgery.
I told my doctor I was going to have the surgery. He sent to a wonderful surgeon that assured me everything was going to be fine.
Ileostomy surgery was done January 26, 2012.
Am I glad to have the surgery? You can say yes sometime. I am still learning what appliance works for me and which ones don't. I am greatful for my family helping me with this and the wonderful Ostomy Nurses and my wonderful surgeon that are always there when I have a question or two. I am greatful for this chat group, and all of you and knowing I am not alone. And if I have a question and don't get an answer from my doctor or nurse, someone here may have the answer for me.

Take Care.
Josie

By herbsgal70
Reply 3481095
October 23, 2012 at 8:13 am
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Hi Josie - I did not have time to think about it, because my colon perforated and almost killed me - had emergency surgery with only a 50% chance of survival and 2 days in a medically-induced coma because I was in shock. That was in December, just before Christmas last year - celebrated the holidays in the hospital, the nurses brought me a glass of ginger ale at midnight on New Years Eve! - and was surprised to wake up with an ileostomy - which I had never even heard of - colostomy, yes, but not ileostomy. 10 months later I have, after much trial and error, leaned to deal with it and am so damn glad to be rid of the crippling pain that consumed me for up to 12 hours at a time, sometimes several times a week, that I am perfectly content to share my life with my "Buddy". I can't imagine the hours of soul-searching you had to go through, and hope you are well on the way to complete recovery.

Love and hugs from Marge

By alan41241
Reply 3481102
October 23, 2012 at 8:16 am
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Josie, thank you for telling your story. I know the prospect of ileostomy surgery is scarey. I sure was. I'm so glad to read that you have accepted the pouch as a part of you. You finally have your life back. That has to feel good. I know it does to me.
Blessings,
Alan

By Mare5785
Reply 3481154
October 23, 2012 at 8:34 am
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Morning Josie,
Thank you for sharing your story with us. I know that feeling of having to decide and not wanting to... I had to sign for it, "just in case" while they were in there.. and if they decided there was too much poison to do an anastomosis.. I had the crohn's flaring as well as an abcess that was the size of a softball, connected to my kidney... The option was to do the ileostomy... so when I came to and saw my Dad and my husband standing there.. with my Dad having tears in his eyes.. I knew right then... what the answer was..
It was horrible in the beginning... but less than 6 months later, they asked to schedule my reconnection.. I said "no.. my quality of life has improved so greatly.. that I am keeping the ostomy!".. So that was it.. It's not a cure for crohn's disease.. but not sitting in the bathroom with excruciating pain from the backside.. was not what I wanted, ever again.

For colitis.. the surgery is a cure... I pray for you that each day will get better and better.. stronger and stronger with minimal to no problems with your pouch system!!

Glad you are a part of Inspire..and if you need answers, support, love and understanding.. we will all be here for you!!!

Mare

By herbsgal70
Reply 3481284
October 23, 2012 at 9:18 am
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Mare - glad to hear that someone else is as satisified with their ileostomy as I am. Sure, it is a nuisance emptying it several times a day and changing it every 3 days - but, like you, the absence of hours of abdominal pain is worth every minute of it. Follow-up surgery for me would result in a colostomy, to go along with the ileostomy as well. I don't need two ostomies! I will live with what I have and pray that something else doesn't go wrong that would require more surgery.

Love and hugs - Marge

By Idahoeagle
Reply 3481403
October 23, 2012 at 9:56 am
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Morning Josie, Everyone,
Josie your story of comming to terms and surgery was most troublesome, but rewarding, as all of ours are. I remember Farrah Fawcett and the ordeal she played out in the media's eye. That shed a lot of light to the people who are dealing with colon and colorectal cancer. There is only so much time you can deal with this before it becomes irreversable. She clearly demonstrated that.
While the IBS and Crohn's disease, and all those others that is an ongoing thing that eventually it brings relief over time.
Cancer and a few others, peforated bowels and those that just unzip, as a friend of mine's did; have no time to think about this. It's Life Saving Emergency Surgery.
The story's and the reasons for our surgery's are just as important as the surgery's themselves. It gives us a perspective to what others go through to reach the decision and reasons for this life saving proceedure. It may not be what we want But the alternative is not what we desire either, so you take the step of life, and move on with it. Some of us with more difficulty than others.
It was not easy for me to wear this bag and take this step because I was living and still do live with a terminal illness.
However, Terminal is everyones eventual place, so I have come to terms with terminal is as terminal defines itself to each individual.
For me, I guess, I've put terminal in the hands of GOD, The Higher Power, and I think that is the only place you can put it.
My Family, and My Loved Ones, has helped me see the bigger picture of what My Life means to Them, as well as Myself, and GOD.
And, I think to each of us. as individuals going through this.
We can support each other and share a common bond. a LIFE SAVING bond, at that.
Plus the knowledge we share with one another is priceless. But our reasons for comming here are our own and they benfit all of us.

When a person is thinking that they are forgotten and Not Supported by society and, Family; Friends; do not give them a reason for continuing Life, then the reason for living is not strong; as was the case for me. I had to find my own reason for continuing Life.
I know I'm not alone in this reasoning and thought process. I just happen to have lucked out and SAW THE LIGHT, before it was to late. I know quite a few; WHO DIDN'T. They went not feeling supported, and I can only imagine what they must have went through.
So the Life WE SHARE, with our family and each other is more priceless than anyone can imagine, and I happen to think that is a good thing. I'm so happy to have weathered the storm and lived to see another day.
BTW, I happen to love Joel Osteen as well. He's helped me so many times, Him and the HOUR OF POWER.
Mare, Marge, Mark, Alan, and EVERYONE; My Hats OFF to all of you.
KEEP ON KEEPING ON.!!!
Prayers and blessings to you all.
Michael

By tjane
Reply 3481445
October 23, 2012 at 10:10 am
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Josie thank you for sharing your story and glad you are doing so well. Michael you said it well. Not much else to say since everyone had said it better than I could. Hope you all have a great day. xox terri

By alan41241
Reply 3481478
October 23, 2012 at 10:18 am
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Oh, I remember what it was like for me before surgery. It was awful. Went on for 15 months, seven hospital stays, countless doctor visits, one medication after another and nothing was working. I had my last colonostopy last January and afterward my G.I. told me my colitis was "out of control."
I remember that last week before surgery, sitting on the toilet, pushing and straining for all I was worth, in so much pain that I thought I couldn't stand it for another minute. I prayed for relief. I prayed that God would just take me. I knew no matter what I was left with after surgery it had to be better than what I was going through.
Thank God Monday, March 12, 2012 finally came and even though I was scared because I had never had major surgery before I knew it had to be better, the results.
I woke up with the ileostomy I expected and the pouch. For the first time I saw it on ME. My mother had one but I never saw it. It took me about a month to come to terms with the pouch. Depression, doubt that I had made the right decision, wondering if I would ever learn all the steps to changing my pouch.
All of that is behind me now. I am seven and a half months post-op and couldn't be happier. I did learn the steps, I got over the depression, I made it through. Now, changing and emptying the pouch is no more than brushing my teeth. It's just something I do.
I hope this story helps somebody who reads it. If I can help just one person then it was worth it.
Blessings,
Alan

By BigDaddy-Rosebud
Reply 3481660
October 23, 2012 at 11:04 am
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Thanks for sharing Josie.

We all seem to have so much in common at times. I realized a while back how the right attitude can help the healing process that much better. I'm a firm believer in "what is right in the world". And those words, "he gives you hardship so you can prevail" made a difference. Very good to hear.

My boss is going though surgery on his foot today but it is obvious to me that something is wrong and stressing him out. So I pulled him aside yesterday and as a friend and asked him, why so stressed? He mentioned there is much more on his mind - during his recent test results he now has discovered he has chronic lung disease. It doesn't look good.

I often realize how good I have it. I'm not wealthy with money but I sure am rich with love and gratitude for life and what I do have. So often here we read of misery and coping with the pain, anguish, and depression of it all, from small to large. I feel for those. But I look at others who have lost their eyes or arms and legs or brain injuries, etc, (I mean MAJOR folks) and some are there to greet you at Lowes in a wheel chair, doing what they can for some measly bit of income to survive. And then there is my lazy brother who chooses to stay home and complain about all his misery that he has created for himself and can seem to get out of bed to get a job to save his life. I just had to get on a tangent here and share my thoughts.

Josie, your post is very heart warming. I salute you for having a great attitude.

By Rosebud2012
Reply 3482060
October 23, 2012 at 1:07 pm
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Thank you everyone. I thought of sharing a part of my life with you all. One thing I have to mention is that is YES I am glad to have had the surgery. Next year I am planning to dance with my son at his wedding, and that means more to me than any of the leaks and whatnots we go threw with ileostomies.

We all will Prevail.

Take care.
Josie

By Mare5785
Reply 3482452
October 23, 2012 at 3:32 pm
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Michael.. Great post!! I hope to one day be able to meet you.. somewhere in this world...
Big Daddy... also.. great post... Yes.. the people who Piss and Moan.. (pardon my French).. stay home.. collect OUR money that we've paid into society with taxes.. and "can't work"... then those of us who get out there to keep our dignity and pride.. even though we are sometimes litterally rotting inside with disease... Doesn't make too much sense does it??
Alan.. so happy your pain is gone.. and life is good... even with it's trials..
Josie.. How blessed can you be.. to dance at your son's wedding!!!? Those are the moments that make this life all worth the struggles.... I know as a mom myself.. what that will mean to you!

Great day everyone!!
Mare

By Idahoeagle
Reply 3486549
October 24, 2012 at 9:33 pm
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Thanks Mare,
I agree with you. It would be nice to meet you as well.
Maybe we all can meet up at the conference in Jacksonville, Florida.
That's the next UOAA conference, in August I believe. Mark your calendar.
You are such a caring person. The board is a better place with you here.
Sincerely
Michael

By herbsgal70
Reply 3487356
October 25, 2012 at 8:06 am
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Hi Michael - I live in Delray Beach, Florida - about 6 hours drive from Jacksonville, and have friends (actually old next-door neighbors when I lived in St. Augustine) who would be glad to have us stay there. I am hoping maybe I will be able to attend - so much can happen between now and August.

I have adjusted well to living with my ileostomy and abdominal hernia - I played 11 holes of golf last evening - we do that every evening and then have a nice dinner - and was hitting the ball well with no problems. I wear a 9" wide abdominal wrap that provides great support for my back and bulging abdomen and it doesn't hurt anything at all. I have an advantage over the long hitters in that I don't hit it as far - after all, I am 80! - but I am always up the middle and get to the green before them because they are off somewhere hunting for their ball! LOL

Won't get to play Friday - hurricane Sandy is scheduling to skirt along our coast, starting with high winds and rain this afternoon and getting worse during the day Friday. The news is already showing schools letting out 3 hours early today and closed all day tomorrow. We are really not in any danger, but the weather will be lousy. We are on the Atlantic coast - about 3 miles from the ocean - between Fort Lauderdale and West Palm Beach - right where the tropical storm warnings are.

Love and hugs, Marge

By Idahoeagle
Reply 3487542
October 25, 2012 at 9:12 am
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Hi Marge,
The conference is in Jacksonville, Florida at the Hyatt Riverfront, August 7 thru 10. The web sit at UOAA, is already advertising it.
Glad to hear that you have gotten your hernia and ileostomy under control. My youngest brother plays golf a lot but I didn't get much into it. I might enjoy it now, but I haven't gotten out there just yet. Maybe a little lazy that way, although I just started jogging and I have always enjoyed running. I ran a lot in the Marine Corp, cause I was a member of the 100 mile club. We would try to get as many 100 mile incriments ran in a month, or at least try to reach 100 miles in a month. A lot of running. But I was younger back then too. I'd shutter to think trying it now.
You be careful and weather the storm, Sandy, as best you can. I was in North Carolina one year, at the Marine Base in Cherry Point,
when one came through. That was years ago but I remember it. My mother has relatives, My aunts and cousins, who live in and around Atlanta, Georgia. Yea I'm the product of an Idaho Spud and a Georgia Peach. I got three younger brothers as well. LOL.!!
Wishing you Well,
Michael

By Idahoeagle
Reply 3487586
October 25, 2012 at 9:24 am
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Josie,
You go girl. That's the spirit. That should be FUN and so memoriable. Glad to hear your getting a grip on this ostomy thing.
It took me a while and I'm still not 100%. Never will be either.. One Day At A Time..
Wishing you Well.
Michael

By kouneli
Reply 3498395
October 29, 2012 at 9:08 am
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Hi Everyone:

Welcome Josie:-) This is a great forum. I don't have a lot of time on the computer, but I've learned a lot from these folks and they're truly wonderful. Marge, stay inside and put plenty of rocks in your pockets if you have to go out. Don't want Sandy carrying you off! Everyone - your posts always make me remember that I'm not the only person roaming around with an ostomy! We're all upright and breathing and that's the main thing. Keep on laughing and praying (if you want to). Hugs, kouneli

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