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Hello Everyone!

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Posted: Tue Dec 12, 2017 2:25 am

I'm kinda bummed that we have to pay to enjoy a full membership to this website. Like, haven't we been through enough??

Anyhoo, I'm new to this ostomy thing and am finally starting to feel at peace with it. I'd like to talk to others and connect with some new friends! 

I'm 42, mother of 2 grown children, pharmacist is my day job. I live in Minnesota but grew up in western Washington. I just graduated pharmacy school in May of 2016, and was diagnosed with colon cancer in May of 2017. How's that for timing!?! Luckily my employer provides great benefits and support. I have a temporary ileostomy that is a bit of a brat and has been difficult to handle.

Hope to chat with you soon! 

Posted: Tue Dec 12, 2017 2:43 am

I can relate!  I didn't have cancer but my lower bowl suddenly, without warning died within 24 hours so I now have "Maxine" on my side.  She is often very angry so we disagree about things alot but lately,  things have calmed down and we are getting along famously.  I hope yours gets better soon.  Will you be getting reconnected or have a J pouch??

Posted: Tue Dec 12, 2017 3:02 am

Hello  julianatheory151.

Welcome to the site and, if it helps, I have never paid for membership but think that it is worthwhile for the general correspondence that goes on. Also, I regularly get free membership because I post a lot, However, I have never used the advantages of the freebies because I PREFER TO POST IN THE OPEN FORUM  rather than the private messaging and chat. 

Best wishes

Bill

Posted: Tue Dec 12, 2017 10:16 am

julianatheory151,

 

  Welcome to the site!  It took me years to finally break down and pay for a full membership but I figured I'd probably blow $50 on something frivolous anyway so I said what the hell.

  Having an ileostomy can be a challenge and a learning experience.  Hopefully you're lucky enough to have a reversal done but a lot of us have permanent ostomies and have been around the block so if you have any questions, you've come to the right spot.

  As far as paying for a membership, you can try to be one of the top 10 people that post in the forums.  Every month, whomever is in the top 10 gets a free, 30 day full membership.  And if you really need to connect to people, just give them a shout here in the forums.  Just don't be discouraged if someone doesn't get back to you right away.  If you're a non-paying member, you can't initiate emails or private messages and most of the time, the reason why you don't hear from someone, but that's the only disadvantage I've seen so far.  You can however, respond to emails and private messages.

  Hope this helps.  Have a great day!

 

Bain

Posted: Tue Dec 12, 2017 12:47 pm

Julianatheory151,

Welcome!! I used to feel that way about full membership, but I decided this is a forum I truly like so why not pay for it. So I'm giving myself a Christmas gift of full membership,  who knows wh at might happen : )

Posted: Tue Dec 12, 2017 7:49 pm

Nice to meet you all. Smile My surgeon plans to reverse my ileostomy once I'm done with chemo. If all goes well, I should be stoma-free. But there are always risks and complications, so I could be a lifer.

Before any of this ever happened, I definitely had an aversion to ostomy bags. My ex mother-in-law had one due to complications from MS when I was 19 and I was scared and ignorant and I never viewed it as life-saving. It's always been something I've looked at as "I'll never have one of those. I'd rather die." 

Well now of course those were basically my only 2 options, and I chose life. But I get scared from time to time that this could be permanent and how would I decide then? Seeing all of you living your lives so vibrantly with an ostomy is definitely helping boost my confidence in myself. 

So bear with me if I make insulting comments or sound harsh. It's not my intention. I'm still working on myself and hoping to learn from all of you. 

Lisa

Posted: Tue Dec 12, 2017 7:58 pm

I was diagnosed with colon cancer in May 2017 also.  Had to have a hysterectomy and ileocolostomy.  Hang in there, it sure helps when there are others that are experiencing the same issues that understand.

Posted: Tue Dec 12, 2017 10:51 pm
ladyjane wrote:

I was diagnosed with colon cancer in May 2017 also.  Had to have a hysterectomy and ileocolostomy.  Hang in there, it sure helps when there are others that are experiencing the same issues that understand.


Sorry to hear about your diagnosis. Why did you need a hysterectomy, if you don't mind me asking? How old are you? 

Posted: Wed Dec 13, 2017 10:50 am

I am 64.  I had a fibroid tumor the size of a cantelope that had colon cancer cells in it.  It was pressing on the blood vessels to my legs causing massive swelling and pressing on all of my other organs, and also causing fecal compaction.  They told me I could lose my leg and kidneys if I did not have a hystectomy.  That is how they found the colon cancer.  This certainly changes your life drastiically!  I decided not to do the chemo for now.  I would be interested on your experience with it.  Good luck to you and God Bless you!

Posted: Mon Dec 18, 2017 1:05 pm

Hi Juliana,

I was diagnosed with rectal cancer in July of 2017.  after having radiation/chemo and then surgery my pathology report came back with no cancer detected!  Hooray!  so the long game looks great for me, but I have my new friend, Bobby....my ostomy, for the rest of my life.  My doctor said if they had saved my rectum/anus it would have been likely that I would have dealt with incontinence for the rest of my life and wearing diapers.  so given the options I am grateful for Bobby and overall we are getting used to each other.  The wound from what was removed is still healing and it is said to be a long process...some people as short as 3 months, others as long as a year or more!  that is discouraging...but i have my life and again long term things look good.  I just turned 49 and am looking forward to 2018 being a better year!  Hang in there...you are not alone...and a good reminder to me that I am not either!

Much Love,

Dana xoxo

Posted: Mon Dec 18, 2017 5:41 pm
moxieproject wrote:

Hi Juliana,

I was diagnosed with rectal cancer in July of 2017.  after having radiation/chemo and then surgery my pathology report came back with no cancer detected!  Hooray!  so the long game looks great for me, but I have my new friend, Bobby....my ostomy, for the rest of my life.  My doctor said if they had saved my rectum/anus it would have been likely that I would have dealt with incontinence for the rest of my life and wearing diapers.  so given the options I am grateful for Bobby and overall we are getting used to each other.  The wound from what was removed is still healing and it is said to be a long process...some people as short as 3 months, others as long as a year or more!  that is discouraging...but i have my life and again long term things look good.  I just turned 49 and am looking forward to 2018 being a better year!  Hang in there...you are not alone...and a good reminder to me that I am not either!

Much Love,

Dana xoxo

Hi Dana! It's surprising to me how many people under 50 are being diagnosed with colon cancer. It seems to be becoming more common, so hopefully the medical profession will catch up and start screening people sooner.

I'm sorry you will have Bobby for life, but given the 2 options it sounds like you made the right decision. Do you have to do FOLFOX or any other chemo? My doctors aren't doing any scans until after I'm done with chemo, so late February. While the surgery was successful and removed all of the cancer, they are being cautious and treating me aggressively to kill any circulating tumor cells.

It's scary, but then again I don't feel like someone who has stage 3 cancer! I'm just going through the motions of treatments and trying to live my life. 

Do you have a colostomy or an ileostomy? 

Posted: Tue Dec 19, 2017 4:05 pm

I was on Xeloda, an oral chemo and will go on it again around the beginning of Feb for four months...as preventative for what might still be floating around...sounds familiar to your situation, but with a different drug.

i have a colostomy and it sounds like in general there are less restrictions for eating for colostomates vs ileostomates. However, I’m sure there are pros and cons of each. 

I get my next scan the first week of Jan...this will be my post surgery bench mark scan which should look cancer free!

 

 

 

 

 

 

Posted: Wed Dec 20, 2017 1:43 am

Hi Dana,

I'm sorry that you've been so ill, but I've found that having an ileostomy ( for 50 + years)   has been a life giving,   experience.  Welcome to the site.

   My name is Marsha,  and when I got sick, with Ulcerative Colitis at age 12, I was a anomally to the doctors.   UC was thought of as an " old persons" disease.   But after 4 years of all kinds of medical treatments that failed, there was no option left for me,  except surgery.  I was 15, and I was so grateful to go back to school and resume a normal life....that I gave no thought to  having an ostomy for a lifetime.   That's youth for you.   I was glad to be able to be out and about, start dating , go to parties,  be out in the sun, be able to date....without being in pain, or being tied to a bathroom ( 40 x a day/ night).  There were some difficult time, and dating ( revealing) wasn't always easy, or pleasant, but I knew that my ileostomy was my badge of survival.....and I remain grateful...

I'd been very active in ostomy groups, as a teen ( after my parents dragged me kicking and screaming to my first meeting.)   There were no ostomy therapy/ wound care nurses back then, and ostomates visited and helped each other.   I became a " visitor", and helped young children adapt to their surgery.  It was usually more of a parental issue.....with parents reluctant to let their kids manage life on their own...   When I married, moved to NJ, and had my two children, I pretty much gave  up ostomy meetings, except  for an ocassional  ,meeting or convention.   I pretty much lost track of all the wonderful friends  I'd met.   But I didn't care because I was caught up in raising my kids, car pooling, and going back t o college ( to be a teacher myself).  

When I came across this site a number of years ago....I found I'd really missed the communication with people who were going through things that I had experienced.   And so I joined the site... I'm one of those people who post a lot, so I kept getting free months, and so I stopped paying....and kind of lost touch for a few years.

  A lot had happened during that time.... so when I caught up, I paid for lifetime membership, thinking that I'm going to have the ostomy for a lifetime....so I should/ or wanted to support the site...   I really bellieve in " paying things forward" so when I met a lovely woman  on here, from Papua New Guinea.... I knew I wanted to help.  Janet  was requesting unused supplies for work she was doing in her country ( where poor people have no access to surgical supplies) 

My son lives in Australia, so when I went to visit a few years ago, I packed a suitcase full of ostomy supplies, and brought them to Australia.   A member of the ostomy association on the Gold Coast, got them to  a person who was flying to Papua NG, and took them to Janet, who used them for needy children/ & other ostomates.   

The few dollars I spent on being a lifetime  member was less than I'd spend on a gourmet dinner, or family celebration.   It made me feel good, that I could reach out and help......and I remain grateful for those who set up and maintain this site....   I wish you the best of luck.   Feel free to write, ask questions, and post replies.    WE all try to help each other...   Marsha

 

Posted: Sat Dec 23, 2017 2:59 am

Thanjs for sharing your story Marsha. It must have been a much different world for you when you first gig your ostomy. Thank you for paying it forward! I hope to be able to do the same for others in the future related to my ostomy or to my experiences going through cancer diagnosis and treatment. Wishing you all Happy Holudays and thanks for the support you provide in this site!! Dana

Posted: Sun Dec 24, 2017 11:24 pm

Hi Juliana,

Welcome, this is a wonderful site to learn about ostomies and many of the reasons folks have them. Mine is a colostomy and it's from colon rectal cancer as well. I never really thought to much about having an ostomy I just wanted to get throught all the chemo and radiation. It sure takes a toll on ones body but if your blessed enough to have a good supportive family and a will to live your more than half way there. My husband and I also have a strong belief in God and know He is the reason I am still here.

 Best wishes on your journey, we'll be here for you if you need us or just want to chat. The chat room is a good place to talk to folks as well.

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