The amazing people that helped us recover...

We are amazing to survive surgeries and complications. Many of us did not do it alone. Perhaps some did. In that case you are SUPER amazing.

What is the one-little-special-thing, among all the many other things that your amazing helper did that really touched your heart?

Mine is:
He, my husband, always helped me put on my new ostomy bag after a change, because I couldn't see to get it on just right. He also held my TPN bag out of the water when I took a bath. He cooked dinner for he and the children for six weeks while I had to fast, came to the hospital at 4 am one morning, on day five after first surgery to wash my hair because I couldn't stand it any longer. He wasn't perfect. I sure could have used a back rub but didn't get that.

It's been many years ago, but the warm and loving memory of My Amazing Person is still vivid in my heart and mind.

Who warmed your heart during your difficult time?

Mine would have to be my Parents. Even though my mother's work has been less than helpful when she needs to take work off when I need her she always works an extra 10 hour day when needed so she can go to all of my surgeries and procedures. She is always my greatest advocate and all to ready to pay the bills that my disability can't cover. My father drives me to ALL my Dr. appointments and procedures 5-6 hours away where most of the time we must at least stay 1 night. He is self employed as an accountant but even managed to go a when required in the middle of tax season when he is working 14 hour days 7 days a week to finish before middle april.

When others have abandoned me in this time of need, My parents sat with me every day when I was in the hospital for over a month. I would not have survived without them. I also must mention my sister. When she could not visit me she called me every day and if I was not able to talk to her called my parents to see why I was not answering and on her tight budget purchased some of the items that I found crucial in the hospital. Her sense of humor and lightheartedness on the phone still brings me out of my depressive pit. Even though she has admitted to being a nervous wreck when I am in the hospital. When I am hospitalized she never lets that on and always can bring a smile to my face.

My husband has been amazing. He did all the cooking, cleaning, housework, laundry, grocery shopping after working long days. He's always concerned and loving, even when I'm depressed and nasty. I am very lucky.

My parents without a doubt. I was 16 when it all started and by 18 had 11 surgeries. I never spent the night alone in the hospital and my Mom did EVERYTHING the nurses did for me.

My best friend also sat next to me when I stopped eating and was trying to die and told me she wouldn't let me go. She convinced me to take one bite at a time and keep going. I would have died without all of them.

My parents for sure. My Dad, who flew across Canada for the day, just to be there in the hospital when I woke up from surgery. And my Mom, who did everything for me, from washing my hair to putting on my socks.
I think one of the best things our Amazing People do for us is put up with our bad moods and rudeness - which we tend to direct at those closest to us, even though we don't mean it.

My wife for putting up with me for this year and a half saga. The moodiness, not being able to do much around the house, managing the kids.

My oldest daughter for kissing daddies boo boo's and snuggling me.

My youngest for bringing the joy of a new baby into the house during this time.

My 8 yrd old daughter,yes you read right.She changed my appliance each and evey time it needed changing and she did this for the 6 months I had it .The home care nurse was blown away at how perfectly she did everything.She not only did this but looked over me like a hawk making sure that I was fine and that I didn`t want for anything.She truly is my angle and hero!!!!!

My rock(s) have been 1, my husband. I was dx just 2 months before we were married, and just a year later, I had surgery. He has been there through everything, taking turns with my mom, sitting in my room, never letting me be alone, cooking me dinner, cleaning the house, and most of all, encouraging me through it. We always joke that we're ready for the "in health" part of our marriage, it's been almost 4 years now.
Second, my parents. My mom has been there by my side, through it all. From the day that I found out I would have to miss my bridal portraits because they were doing the first colonoscopy, to taking a last minute flight to Cleveland five weeks ago, so she was there when I woke up from surgery #4. I've yelled at her at 3 in the morning for letting me sleep through the pain and cried with her...she's been there through it all. My dad has always been my "walking" partner, through the first three surgeries, he was there. Even though he couldn't be at the last one, I still thought about him a lot. And lastly, my brother...while we fought like cats and dogs when we were younger, he's one of my best friends now. He's always been there in spirit, or in person, to provide me with a good laugh when I needed it. After my first surgery, he moved in with my husband and I, and helped take care of me, making sure I was able to get up and eat, and walk.
I've been so blessed to have a loving and caring family.
Thank you for starting this thread...it gave me the chance to look back on those who really meant a lot to me, and say something about them, for we all know that we don't always take enough time to say thanks to those who deserve it the most.

I had my self for the most part my wife for a short time and then she become not so helpful. But I been through alot and dealt with it my family has been heartless through most of it always have been great to hear though people had caring folks. I could swear I was adopted or something hehe.

Jeff will you quit breaking my heart please.You don`t know how bad I feel for you it seems your always getting the **** end of the stick all your life.There has to be someone who truly cares about you where you live,there has to be.My God your amazing to be still standing after all you`ve been through and carrying on with what life throws at you.God bless you my freind and I pray that things will one day start to go your way!

My family has been good and bad, and most of my friends disappointed me.

My last hospital stay was horrible. It was over the new years holiday and no one had time to come see me. Even my dad wasn't around much.

One of my friends stepped up. Instead of going to a party he came to my hospital room round 7 with a bottle of sparkling cidar and stayed til around 2 am. All we did was talk, watch tv, and play scrabble, but it was the most amazing thing anyone has ever done for me.
-sara

My family and friends were great. My mom was my rock. She is a nurse that works on a surgery recovery floor at a very busy hospital. Before surgery she made it a point to take patients recovering from any colorectal surgery. She even cared for patients recovering from j pouch surgey. She helped me change my otstomy wafer and was a wonderful comfort when I had my first overnight leak. She even volenteered to let me move in with her during the whole surgery recovery. I could never repay her for the hours of 'off duty nursing' she gave. Moms and nurses are wonderful!

My partner. . . .

We had only been together 4 years when I became ill. She spent every possible moment with me when I was in the hospital for my first surgery, the complete and utterly life changing colectomy (and also through the hospitalizations for my three following surgeries.) She slept on the floor on one of those horrible crinkly, lumpy and miserable beds they say they will wheel in. . . even though we never saw a cot frame for it! She awoke for every blood draw, every medication, and every I.V. check and change-out. She was the one who measured my output, as nasty as the maroon stools were, as it was not being done by the nurses. She checked every med and every order, often quzzing the nurses about who ordered it!

Bless her heart, on the day she brought me home from that first surgery and 16 day hospital stay, I freaked and burst into tears, for the house did not look at all familiar (the drugs that were still in my system , esp. prednisone, were talking) . . . and it scared the daylights out of her. Then she went out and bought me bottled water in 8 oz. bottles so I could I keep track of how much I was drinking, but that did not go well, as I hated the taste of water and the thought of how many of those damn little bottles I would have to empty each day! And she was there for every ostomy appliance change . . . in fact, doing them for me as my stoma would never quiet long enough for me to do it . . . I never changed a single barrier myself!

When I returned to work part-time (she had already lost her job taking care of me, as we are not covered by FMLA, and her employer, after offering her a personal leave, reneged by laying her off halfway through the approved leave), she rode with me so I could use the carpool lane. Commuting by bus and train, as I had for years, was out because there were stairs and other obstacles for someone recovering with a new ostomy, plus I had frequent leaks which we had to drive home to change, as there was nowhere near my office where I might recline, have running water, and sometimes hours to get a good seal! Then, while I was working, she would venture out to look for work. (My job was in Seattle, and we lived 30 miles away.)

My surgeon occasionally would let her look through the scope into my pouch, after my takedown, when he scoped me in the office. He, and my other doctors, have not once questioned whether it is ok to discuss my health with her.

She has encouraged me in my art, as well as held my hand when things have been rough. Meeting my needs, both physical and emotional, has always been her top priority. She has endured years of boring bland food, and relished with me when a new dish that I could eat was discovered by chance or by design.

Through hair loss, the ravages of steroid use on the skin, and the ups and downs of health and energy levels, she has constantly reminded me of my beauty and how loved I am.

I would love it if some day our relationship, our little family unit, were recognized by our Federal government as valid and worthy. We will celebrate ten years this fall . . .

This message has been edited. Last edited by: Debra,

Debra, that was beautiful. I only hope one day i find someone who loves me that unconditionally.
-sara

Debra, that was beautiful. I hope one day I find someone who loves me that unconditionally also. I thought I had that, until this year when this all happened to me and my fiance decides to leave me through the middle of it. What an ass. I live across the country from my family and he was my only family here. So my family, without a doubt, have been absoultely amazing They would have been regardless. My mom doesn't like to fly long distances, and she has flown from Philadelphia to los angeles five times to be with me, all in the past three months. She has been there for me every step, every tear (from surgeries to fiance dumping me). When i was in the hospital for a month, I was so lonely I told my brother i needed him and he was here the next day. He spent six days with me in the hospital, listening to me cry, making me walk and go outside. He's actually been listening to me cry for months. And my stepfater, who is more like a father, has been out to take care of me also. He also has been listening to me cry for months.
My family have been amazing, without them, I would have been more of a wreak than I've been. I'm sure their tired of listening to me cry, but they will always listen to me. I'm considering moving back there so I can be around those who love me. It helps when u have that.