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pink alpaca
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April 29, 2019 1:30 pm  

Hi I came across this site by chance, what a find and lots of useful information.  I had an emergency 7 hour bowel operation in February 2019, discovered there was a blockage in the small bowel that was cancerous and had spread to the stomach,  Happy to say tumour successfully removed and now completely cancer free.  Have had an ileostomy which may or may not be reversible.  Have to say at the moment not to keen on another op any time soon. Having 8 sessions of chemotherapy that will hopefully mean it doesn't come back.  Before this happened I was a fit and healthy person who never went to the doctors, so this has been a huge shock.  Fantastic treatment and care from NHS.  I have never joined a forum before but have a feeling this will be very beneficial.

 

C S Kisby


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john68
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April 29, 2019 1:44 pm  

Hi Pink, Welcome to the forum, it’s great to have so much information in the one place, An ostomy is a learning experience and you will find it all falls into place, wishing you well in your recovery and making good use of Eric s site

ileostomy 31st August 1994 for Crohns


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pink alpaca
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April 29, 2019 1:50 pm  

Hi John

Thanks for the welcome, this site is certainly a great resource.  I have an excellent stoma nurse, but this site has some many resources, I've already looked at some of the product Charter product reviews.  

It definitely is a steep learning curve but I've already discovered there are lots of ostomates out there, so need to feel lonely.

Pink Alpaca

C S Kisby


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john68
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April 29, 2019 1:58 pm  

Glad to hear about the stoma nurse, just remember don’t judge life with a stoma on the recovery stage. It’s a life style that’s full and workable. Totally agree about the. NHS

ileostomy 31st August 1994 for Crohns


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pink alpaca
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April 29, 2019 2:02 pm  

Hi John

 

I promise I won't make any judgments,  this ileostomy saved my life - dramatic sounding I know but true.

I always try to have a positive outlook - well most of the time :) 

C S Kisby


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Marcie
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April 29, 2019 3:34 pm  

Hello Pink--For some it is a harder road to adjust-and for some it is easy--YEs, there r  many ups and downs.. first, finding the pouching system- when u find this? your on the road of an easyier  life ahead.  Second, getting your strength back--then you will be un-stoppable !!!!!!!! 

We have much GOOD adivse here.  This is a great blog-Eric has many reports that will help you.

Also, if u read some peoples many illness's don't think you will have them!! Just deal with yours. Your life will fall into place nicely very soon.

Best M.

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


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LK
 LK
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April 29, 2019 5:37 pm  

Hello pink alpaca...Welcome to VO site. I too found this site by accident and after 10 years of an ostomy I am still learning so much more.  I am glad to hear that they caught your cancer and were able to remove it. I truly hope that your chemo will be a very successful journey on the way to full healing. I understand about not being too keen for another surgery. You have a lot to consider, cost of supplies that may not be covered, different clothing, and whether you have a disease of the bowel verses cancer the disease and what it can do and has done may make your decisions a little easier to make. I always make that list of the good, the bad and the ugly reasons when facing a change like you are. Take your time deciding and figure things out. We have recently had ostomates on a forum that have an temporary ostomy and are up for a reversal. Sometimes it helps to talk to someone who may be facing the same decision. Think about starting a new forum and ask the question about having a reversal or not. It can take time to get responses sometimes, but it does happen. I wish you the best health and the best results as you undergo Chemo. Take care of yourself and be well.

Linda 

Linda


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sjlovestosing
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April 30, 2019 7:33 pm  

Hello Pink, and welcome! I am glad you found this site.  You will find many helpful and knowledgeable people here to help when you need it. Eric's website and advise - along with the help of the other ostomates - has been invaluable.  Just a few thoughts: a good attitude is everything; be patient with yourself - it takes a while to get the hang of things; it's OK to cry; be good to yourself.

Stella

 


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Marcie
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April 30, 2019 8:42 pm  

I cried a lot--not like me to do this-- but it helps!!  Can't avoid this first step..IT is your way of coping.. as I..  Then the tears will pass.   As,We do this here...……. after the crying? You will bring your your boot straps up and concourse the subject of acceptance- The lower road you r at now will become a higher road. As u have read by now-- we all have taken the high road AFTER  the low road. I feel this is an important step forward-- cry-learn your early stages and proceed a small step forward.  Every step YOU  take (even if u think it is to slow?) we all work and get to our comfort zone.  

Remember-- things u read of others illness's here-of going on and on's  will NOT  happen to you. I did the same thing-- waiting for the other shoe to drop on my head. You may be in that mode now-- here??? as some like to write  of all their health issues.. and forget those t.v. ads of different  medications and the health THAT WILL NOT get us.. .!!!!!!!!!!!!!! They can really get to you when your sick and new of this area of ours. So by pass others health issues here-- they seem to love the attention. YOU need those that agree with you = and help you without bringing in their low lives of health.. that is their personal areas. not to be a thought to you that your in for something else  bigger that comes with our stoma. 

Some seem to feel if they write all of their horror's will help and you may understand where u r coming from.. but it does not mean anything to your feelings at this time. 

I am sure that you will be a great ostomate...……. in the near future.. people travel - they ride horses.. the r back to a better normal than before they received their stoma.. 

God bless us all and I pray that u will see your success sooner than u think.. so cry it our my dear.. that is step one. hugs.  m.

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


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IleosTony
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May 1, 2019 6:46 pm  

Can't help but agree here. You've lost a body part, and there is nothing in the world wrong with grieving that loss. For your own sake, however, don't let that grief stagnate and keep from turning to healing. Allow yourself to feel the pain of the loss, but keep your sights on the future. Your life has changed; it hasn't ended. Welcome to the forum.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LLNorth
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May 1, 2019 8:05 pm  

Hi Pink, Yesterday was the one-year anniversary of my surgery (like you, also for cancer) and I guess a first birthday for my stoma. I am doing well and wish all good things to you. There is an ongoing learning process with this, and this VeganOstomy site has been such a tremendous help - so interesting and so often fun to read! Wonderful people visit here! LL

I love the smell of coffee in the morning. It smells like .... victory.


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VeganOstomy
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May 1, 2019 9:23 pm  

Pink, welcome! Thank you for sharing your story  and I hope you find the support and information you are looking for here. 

It can definitely come as a shock to go from fit and healthy to being in emergency surgery and cancer treatments. But you are here, and that's what's important.

I'm looking forward to reading more of your posts 😊

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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pink alpaca
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May 2, 2019 9:56 am  

Hi 

Thanks for your kind words and advice - I have the mantra small steps at a time, at the moment I'm concentrating on maintaining positive thoughts and just deal with each day as it comes.  I'm feeling lots better since my operation and everything will slot into place as time goes by.

I really appreciate your advice, this is the first time I have been involved in a forum and I can definitely see the benefits

C S Kisby


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pink alpaca
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May 2, 2019 10:02 am  

Hi Linda

 

Thanks for all your lovely advice, I will definitely start a forum topic about a reversal - all info is helpful and will help me come to a decision.  

C S Kisby


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IleosTony
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May 2, 2019 10:06 am  

Don't be afraid to go ahead and express negative feelings in a healthy way either. To do otherwise is self-deceiving. One of the greatest things about a forum is that people who frequent them expect each other to have problems they need help with and frustrations they need to vent. It can be so helpful to have an outlet. I don't know why, but it really does help to know others have similar struggles. Human nature must have an inherent need to know that. That same human nature finds it difficult but very, very necessary to strike that fine balance between communicating unpleasant feelings and not feeding those feelings. That's why it's also so important to keep a positive mindset throughout all the yucky stuff. Feed the good feelings; express and starve the bad.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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pink alpaca
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May 2, 2019 10:08 am  

Hi Stella,

 

Great to hear from you.  Your right this site is amazing, I'm exploring gradually.  I think Eric is very brave to share actual videos of how he deals with his stoma,  it is very helpful and much appreciated.  So pleased it's an actual website - rather than YouTube - people are really rude there with no thought to people's feelings.

Caroline

C S Kisby


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sjlovestosing
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May 2, 2019 10:20 am  

Dear Caroline,

I am glad you are doing your research! I also had a surprise diagnosis of cancer. Mine was colorectal stage 2. I was told that I would have to have my anus and rectum removed and live with a permanent colostomy. After the shock wore off, I went into research mode and found this site - and what a literal Godsend it was and still is. Eric and the others helped to prepare me for my operation and gave me hope and encouragement that I would find my new normal and live life to the fullest, and I have! They all have been a wonderful blessing in my life. My surgeon and his staff were great as well. I couldn't have done better!

God bless!

Stella


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VeganOstomy
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May 2, 2019 10:21 am  
Posted by: pink alpaca

So pleased it's an actual website - rather than YouTube - people are really rude there with no thought to people's feelings.

I deliberately have both a video and written article for all of my content. Making a video is easy, but it's not a platform that most people can use or access as easily as a written article. Of course, this adds a lot more work and effort to create two forms of content, but I know it's been worth the effort. Thank you for finding value in it :)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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pink alpaca
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May 2, 2019 10:21 am  

Marcie, just seen your other post - you know how to left a girls spirits.  

A good cry is always worthwhile - just to relieve the tension - better out than in.

I will take your advice about other people's illnesses and procedures - everyone is different and we all have a story. 

Once I am fully recovered and have more energy I want to get back to doing all the things I used to do - yoga, lots of long dog walk - first we have to get another dog, sadly lost our springer Lucy last October.  Looking forward to finding a new friend to go walkies with.

Take care

Caroline

C S Kisby


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pink alpaca
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May 2, 2019 10:31 am  

Hi Tony,

Wise words, that I really appreciate.  I view my life as pre-ileostomy and post ileostomy,  There will be lots of things I can return to doing - one is work.  I'm freelance so not earning at the moment, that doesn't matter though, healing and getting well is the most important thing now. Yoga and longer walks will all slot into place. I am lucky I have a wonderful husband he is very domesticated and I'm fortunate that our youngest son is currently freelancing from home before going to do a Master in September. 

All the best

Caroline

C S Kisby


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