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sjlovestosing
(@sjlovestosing)
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April 24, 2018 8:00 pm  

Hi everyone,

I am new to this site. My name is Stella and I have colorectal cancer.  I am scheduled to have surgery to have my rectum and part of my colon removed and have a permanent ostomy. The type of ostomy is an end sigmoid colostomy. I must admit, I am a little nervous about the operation. My surgeon was actually wanting me to enter this trial which involves chemo and chemo radiation, but as it looks like that there will be clean margins after I have the cancer removed, I have decided to go through with the colostomy as there is no guarantee that the chemo trial will cure me of the cancer. Also, I will still have to undergo surgery if the chemo/radiation fails. Is there anyone out there who has had a similar experience? I would love to hear from you.  

I just want to thank Eric for this website. It has been an encouragement and a God send for me.


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VeganOstomy
(@veganostomy)
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April 24, 2018 9:17 pm  

Welcome to the forums, Stella. I'm glad you've found the courage to post your introduction and I think you'll find a lot of encouragement here.

I'm hoping that someone who's been in a similar situation can share their experience with you.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Kerby
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April 25, 2018 3:21 am  

Hi Stella, well aboard. I'm not sure what answers your looking for. My name is Linda. I had a Colonoscopy last November, colon Cancer,  had both Chemo / Radiation, didn't shrink it much, we were hoping, anyway. I have a permanent Colostomy, no going back, rectum removed, seen up. I can only speak for myself. It was a learning process when I got home. No reading matrrial could prepare me for what I was going to learn. Trial and error, but gets better.  I'm lucky to be alive. Thru the help of Eric and others have calmed down . I wondered how I can do this?  When I read and listened to our Vegan Family I feel more confident. This is a great group for encouragement and help. I wish you the best. You will do fine. :) 


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sjlovestosing
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April 25, 2018 7:27 am  

Thank you so much for your reply to my post. This is all so new and a little scary, but I feel I am on the right path.  This website is a wealth of information and has made me more hopeful of the outcome - that life is not all over because of an ostomy. In fact, I feel like I will be getting a new lease on life.  God bless you and all who may be reading my posts.


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Kerby
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April 25, 2018 9:53 am  

Your welcome.  Yes, a new leaf on life.  I'm thankful everyday darn day. I feel better than I have in years. I was so sick for along time. Myself and the Dear Lord had some good talks. God Bless 


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Marcie
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April 25, 2018 5:10 pm  

Hi Stella, welcome..  I also wish you the very best.. And many prayers too.  Yes, there is much to learn but on this site, you can get the answers..  We are not all that text booked. So less confusions this way I have learned. My ileostomy was a surprise, so I cant say that I am feeling all that better.. Like some here that suffered much-- SO MUCH !! Almost 4 years for me and still in an AHHHH at times. But once I get going on here, I clam right down.. We are family..  Best to you always, Marcie. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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sjlovestosing
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April 25, 2018 6:10 pm  

Thank you, Marcie.  It's good to know that I am not alone in this.  My surgery is scheduled on May 15, so I will be checking out the articles and videos about ostomy surgery and recovery.  I am working with a health care advocate and am trying to get all my ducks in a row, so to speak. I am looking into home health for at least the first week I am home and have found out that there is an excellent ostomy nurse who I would like to come help me with my first week home. 

I am blessed in that I have family and friends who will be helping with meals and such. My husband has been so supportive in all this, but this journey has been hard on him as well. I have been asking for prayers for him. 

Meantime, take care and God bless to all my future ostomates.

Stella


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Dona
 Dona
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April 25, 2018 6:53 pm  

Hello and welcome Stella,

Good luck with your upcoming surgery. You can then get on with healing and recovery. There is much to learn but nothing you can't do. I tried to never let myself feel bad about the fix! I am so grateful that this life giving surgery exists.  Its not too hard to get used to feeling well again! .Be sure to ask questions and let us know how you are  doing. 

Although it is daunting and scary at first I am sure will know more  going into the surgery than most of us did, thanks to Eric's great web site.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Zvitusk
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April 25, 2018 7:03 pm  

Dear Stella,

First and foremost ,"Hi"!

Welcome to us, Your new friends .

The famous president FDR ( or was it Churchill ) said that the only thing to fear is fear itself. So know what you need to be afraid of. 

1. CHANGE. Your life will be different.         A. You won't be hurting anymore like before. It will be different and it will go away. 

        B.your attitude will change . You will realise that life is too short to bother with idiots. But you will be nice to them in their faces. Or not.

        C. You will learn new skills. The most important skill is the straight face skill. You will not show embarrassment when you "toot" in front of ....

         D. You will learn new ways to be intimate.  'Nuff said.

          E. Other stuff, like who your real friends are.

We ostomates, have been through the worst of it and adapted to our new reality.  Come and join us. We will help ease the way.

My battery is dying so I will end here, even though there is so much more to say.

Z


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Marcie
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April 25, 2018 7:58 pm  

Stella, You are so far advanced than most of here and well planned..  Good for you !! Your recovery will indeed will go smoothly.. And the weather is nice to just sit outside and read and go it slow.  Although, I had a rough year afterwards myself, I found every other day was much improvement.  So don't push it. 

Yes, your husband needs support also.  Mine, Tom- just didn't know what to do and I honestly don't know how he dealt with my horrible issues during my 6 months stay etc. He lost me twice during that. He is a white coat fearing man.. I might add.  But he took good care of me the best he could.  As I stated before this is a place of understandings.  Tom couldn't understand my depression and beings so sick etc. So, I buckled up and found my support team. Then after 3 years, I found this.. What a blessing!! So, your on the right track my dear!! Your husband will follow your success with pride as mine did. --- I did not have cancer tho-- Just a mess............ A mess of many sorts. You name it.. I got it...... I see nothing but great success for you!! Marcie. :-)

 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Kerby
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April 25, 2018 9:01 pm  

Wise words..  I printed it out.  A sense of humor helped me alot. My Friends, Grandkids, laugh when I toot, so do I.  A second chance I was given.. 


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sjlovestosing
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April 26, 2018 7:58 am  

Thanks to all of you who are such an encouragement. I know that my life will definitely be different. There is so much I still need to learn and I know that a lot of the learning will be in my experiences. 

Though it is not always easy, I am trying to trust in God's path for me. He knows what I am going through and knows the outcome. I believe that there is always a good reason for our suffering, though it is not always clear to see or to understand at times. I also firmly believe that God does not cause our suffering but can use it for good, if we let Him.

Again, thank you for your consoling messages - they are like true treasures for me. God bless you all.

Stella :-)


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sjlovestosing
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April 26, 2018 8:04 am  

Just a P.S. to the above.  I just learned how to change my Avatar!  I somehow envision myself as a little bird at times - in this case a kinglet.


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Sasquatch
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April 26, 2018 11:24 am  

Welcome Stella, you'll find a lot of folks here to help guide you through this.  You have the right mindset, and looks like you've already done some planning.  Those two things will help you be able to focus on recovery, and the new things you'll have to learn about ostomy maintenance.  If you have questions, ask away, most likely someone on the site will have an answer or at least be able to point you in the right direction. 

Best wishes and God Bless,

Sasquatch

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


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sjlovestosing
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April 26, 2018 2:31 pm  

Thank you so much.  


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Malsgal86
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April 26, 2018 7:35 pm  

Hi Stella  and welcome.

I was diagnosed with colorectal cancer in Oct of 2016. My tumor was very low in my sigmoid colon only 5 cm from my rectum. It was about 4 inches long and 2 inches wide. After a whirlwind of tests it was determined that I should go thru 6 weeks of chemo and radiation together.

On march 23 2017 I underwent colon resection surgery and was given an ileostomy. Then on April 24 2017 started 18 more weeks of chemo.

I still have my ileostomy because of some complications from the radiation.

Wish you well and pray for your recovery to be complete.

Everyone here is very supportive and helpful in answering questions.

Good luck to you.

 

 

God when you choose to leave mountains unmovable oh give me the strength to sing it is well with my soul


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sjlovestosing
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April 26, 2018 7:50 pm  

I would like to say, first to Sasquatch, that I am sorry for leaving such a short reply. I was in a hurry to go out, but felt the need to at least acknowledge your kind words. I really appreciate everyone's support. To Malsgal86, I am sorry that you had to go through all that. I have a friend who ended up with a permanent ileostomy that she wasn't expecting. After 4 years, she has finally come to accept it.  I told her about this website and encouraged her to check it out - I have nothing but good to say about it! 

 


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danbh
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April 29, 2018 11:58 am  

Hi Stella,

I was in the same position you are now in in July 2017. My rectal cancer was just in the beginning stage so I did not need any chemo, or radiation (thank God for that). It was a new chapter in life that was opened after the surgery. They removed my rectum, and I am the proud owner of a permanent Colostomy. You should ask the hospital to sign you up for a Home visiting nurse, which deals with Colostomy, she would start you up showing you how to change the barrier (the part that attaches to you belly) and bag. These nurses know their stuff, and with in a few days you would come to figure out how to do it, in just a few minutes every few days. Colostomy is  much easier to deal then ileostomy, providing you eat right, chew your food good, and drink a lot of water. Not to discourage you, do not plan on driving for a while after surgery, your bottom will be sore, and car seats are not the best place to sit on, but not for too long.

Make sure you try with the nurse a few choices of bags, and barriers and see what fits your needs, it may be mind boggling at first with all the choices out there, but you would find the one that would be the right one for you. The nurse would also let you know where to order your supplies from, and hopefully you got health insurance.

If you have any questions, the is the place to come to, so many wonderful people that have the experience and the know how, and Eric is the best of the best.

Wishing you a quick recovery, and all the best.

Dan

 


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bkrottner@telus.net
(@bkrottnertelus-net)
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April 29, 2018 7:43 pm  

Hello Stella. this is Bob and I had my colo operation a year ago, just remember that there is a lot of help on the internet and with the companies that sell osto supplies, lean on them and they will be of great help to you. I had the operation and cemo along with radiation, with no problem God bless you and may he be with you in your travels  BOB


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sjlovestosing
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April 30, 2018 6:34 am  

Thank you Dan. for all your good advice. I have been checking out the videos concerning surgery and after surgery. They will be worth revisiting.

It has been so reassuring that there are others out there who have been where I am now and that I am not alone in this. I guess my stage cancer is a little more advanced - a stage 2. However, the surgeon seems to think that he can get all the cancer. 

Have a great day and God bless.

Stella


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