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john68
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December 10, 2017 9:56 am  

Hi Folks, Their is one thing for sure having a Stoma is a major life changing experience. I comes after many years of illness and pain, It does not only effect us but our loved ones as well. when I read the life stories and experience of folk on here I can share and relate to what I being said. We all deal with events in life in many different ways it part of our personality. On the Forum we can share our feelings and thoughts and its set up as a platform to do that. A road map for the journey and an online friend. But the first step in the road is excepting what has happened, never forget the journey or the past cause their ain,t one thing we can do about it. Our journey in life will be with our stoma he/she gives us health and freedom. some take to this new life quickly and for some it may be years but it will come. Some times I see folk who are finding it hard and I am posting this just to give encouragement!! When we except this new way of life the rest will follow. Not the best at relaying what I have in my head but I hope what I have wrote makes sence


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Tony H
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December 10, 2017 11:05 am  

Hey John I came to acceptance fairly quickly , I think the fact that I had uc for over 30 years ment that anything would be an improvement ,

Support from family and two great IDB nurses have made it a lot easier as well 

my GI team were brilliant and after they had run out of options the main GI sat down on my bed looked me in the eye and told me the only option was surgery ,

He was honest no beating around the bush and gave me the facts straight , I like that ,

I am generally an optimist and that helps as well , 

I have bad days but I get over my self pity quickly , the only regret I have is that I waited so long for surgery .


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mykirbyroo
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December 10, 2017 12:49 pm  

Hi, John!!!!  Merry Christmas from Nebraska, U.S.A.!!!

Talking about accepting our ostomies, I was scared to death when I found out I had Stage 3C Rectal Cancer in early November 2013.  As I read up on it, I was not overly optimistic that I would even survive it.  My chemo and radiation went well and on April 1, 2014, Rosebud (my permanent colostomy) was born.  Before Rosebud, chemo and radiation, I had uncontrolable diarrhea and constipation.  Going to the grocery store meant at least two RUNNING (racing as fast as I could) to the loo and even then sometimes not getting there in time.  (I always carried a spare set of clothes from the skin out.)

So when Rosebud came into being, I was kind of scared of her.  She was like a brand new baby and I was told to be gentle with her - no hard rubbing and no lotions, creams or moisturizing body washes.  So I was very careful with her and gradually, she and I came to be best friends.  I'm not the least bit ashamed to say that Rosebud is my very best friend.  She has given me a life that I never thought I would ever have again!!!  The loo and I have a conventional relationship.  I'm not chained to it anymore!!!

Rosebud lets me do whatever I want to do, whenever I want to do it, and for whatever stupid reason I want.  I don't even need a bathroom to take care of her!!!!!!  How about that?  I use closed end pouches, so I can do a pouch change in the car, out in the woods on a walk, or literally anywhere I can be alone for a few minutes to take care of business.  I carry my "Rosebud Kit" everywhere - it's in my large purse and I carry EVERYTHING I might need to take care of her.  Everything from disposal bags, stoma powder, a couple new barriers, a few new pouches, to wet moist bathroom wipes.)

I would never in a million years ever go back to the life I had before Rosebud!!!!!  My life now is TERRIFIC and I wouldn't change a thing!  The cancer is gone.  My Carcino Embryonic Antigen (CEA) numbers are very, very good - my oncologist says as long as I stay below 3.0, we're good.  My last CEA was 1.8.  Rosebud turns 4 years old on April 1, 2018.

For anyone facing ostomy surgery, please don't be afraid.  Don't think your life will be over --- FAR FROM IT!!!  Your life WITH the ostomy will be different, but odds are it will be much, much better!!!!!  Think of it as being reborn, but without the problems that made the ostomy a necessary part of your life.  Give it a name, embrace it as your best friend and be kind to it - and it will take care of you.  Best wishes and good luck!!!!


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Marcie
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December 10, 2017 12:49 pm  

 had a very bad crying 1  /1/2 years... Shocked, weak, surprised, and never thought that I would get back on my feet again.. My major attempt was figuring out Nellie.  I started changing her IN my bed.. It took an hour.. (reason for the bed I was to weak to walk much) after a year of that, I graduated to the bathroom.. Lucky for me =, I have a larger bathroom and was able to get a chair in, and bought a cabinet system for my supplies.. ONLY !! What a change that was for me!!  Had it all-felt like a queen!!  Then came the trying the different pouching systems etc. you all know what that is all about. - Mostly Eric-- :-) 3 years now, and if Nellie is really good, I can change her dress within 4-5 minutes. 

I now eat everything except corn.. (Robert) At first, I was scared to death to eat anything on that long list they gave me of the "no-no's" Along with this, I kept a check on Nellie's response..  feel that I could have started this last attitude earlier...

But I must admit, this blog and everyone here has been more than a family to me.. You understand, so I CAN understand.. (I joined in Oct-17) That is how fast I have accepted the NEW MARCIE !! I have a ways to go...in other areas, and as I said before:

I can do it because, I WANT to do it..      Not just because I have to--  Thank You all, Marcie.


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john68
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December 10, 2017 1:34 pm  

Cancer, Ulcerative Colitis, Crohns those are scary. The Stoma is the friend who rocked up and told them to DO ONE!!


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Marcie
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December 10, 2017 1:47 pm  

I did not even know that I was sick... Just went down.. u can read my about me-- bla bla.. But as I read everyone's horrible experances......the pain, the meds, the many years of suffering before your surgeries..... My goodness!!! 

So, u can hopefully understand the shock I was in when I woke up after 3 1/2 months with "that funny bandage" and wanted it off as it was bugging me- then was told what it is...... And what I went through.. I was bugged eyed for a long time-not just because I was dehydrated.. I was in a state of shock..  For 2 years..... But, I needed a friend to accompany me where ever I go..---------"My Singing Nellie..." In the long run, she saved my life even tho she acts up like a two year old at times, I learned how to work with her.. 

I do have a question for you all --------- Why did you all sufffer so many year before this operation? Why the Dr. not perform this surgery right away? Some of you went on for 20-30 years !!!!!!!!!! God bless you......... 

 

 


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Marcie
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December 10, 2017 1:55 pm  

That was beautiful Roo-- As I stated above, I got a rude awakening.. So, it took me much longer to accept mine.. As far as your cancer goes, you went through much-but so happy your here supporting others and me.. Mostly happy that your here!!! Keep up the good work!! 

Every day, I have a moment of private prayer for everyone here and for those to come, that you/me made it through with grace.. Lets keep our smiles!!!!!!!! Our smiles tells much!


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john68
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December 10, 2017 2:07 pm  

Well for me it was a case of being misdiagnosed, I was even told I had an Hiatus Hernia, the worst one was well he seems to be a worrier!! That was all down to one Doctor in my local Hospital. Their was a girl who was only 26 died of UC around the same time I was in. I owe my life to My GP DR Fox, I had been in hospital one month and she walked in one afternoon and said she had made an appointment in Belfast for the next day. she told me to sign myself out and go to it. My Dad nearly had to carry me out. I was seen at 2pm and was in theatre by 9pm. That's the short version.


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mykirbyroo
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December 10, 2017 2:21 pm  

Hi, Marcie!  You wondered why we all went so long before seeing a doctor to find out what was wrong with us?  In my case, it wasn't my doctor -- it was all ME!!!  I was way SMARTER than my doctor -- I didn't NEED a colonoscopy.  I was just fine.  Oh, I couldn't have been more wrong if I had tried.

My cancer must have had a few years to grow as big as it was.  (I'm going to gross you all out, but I don't know how to be delicate about it.)  My rectal cancer.  I thought it was hemorrhoids.  Cancer never crossed my mind.  I saw my doctor thinking I just had a bad case of hemorrhoids and maybe ought to see a gastroenterologist to take a look and maybe get it under control.  The diarrhea and constipation caused my "hemorrhoids".  Yeah, right.  WRONG!!!

So a referral was made and I saw one of the premier GI doctors in town.  He did a colonoscopy and as soon as he saw my butt, I'm sure he knew it was cancer.  It was growing OUT of my butt.  Felt like a fairly good-sized semi-solid cauliflower - that's the only way I know to describe it.  (I know.  Too much information.)  Well, it was all cancer.  One of his associates in the same office did a rectal ultrasound and it was discovered that it had grown through my rectal structure, my vaginal wall and several lymph nodes.  He classed it as T-3C Rectal Cancer, and made a referral to my oncologist to get chemo and radiation started.  They started December 23, 2013 - two days before Christmas.  (The surgery to get my port in my upper chest was in November, and that's how my chemo was done.)  I was to have 25 days of radiation to shrink the tumor, and a couple months of intensive chemo before a month off to let my body settle down before surgery.

Since my surgery, I have discovered the reason God spared my life was to tell others to never put off their colonoscopy.  Rosebud sits above my waist on the leftish side of my midriff, and I pull up my shirt just enough so folks can see my pouch when I tell them that they don't want to have to go through what I've been through.  Seeing my pouch seems to have motivated most to make that appointment and get their colonoscopies -- possibly saving their lives.  The journey was difficult (at times, nearly more than I could handle), but I did survive.  Needless to say, I do not put off any testing or screenings my doctor feels I need.  Lesson learned. 

Every night, just before I go to sleep, I say my prayers asking God to be with everyone who has any illness.  He was there for me (holding my hand and/or carrying me) and He'll be there for everyone else, too, because we are His children, regardless of whether you are a Believer or not.


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john68
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December 10, 2017 2:24 pm  

Hi Mykirbyroo , That's brilliant have only one reply "Girlfriend you just nailed it"LOL


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Marcie
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December 10, 2017 2:25 pm  

The first time I went to the ER, they sent me to the nut ward.. UNCOUNSIOUS!! Said the pain was all in my head.. I did not make proper eye to eye contact, and kept going off into uncounsious and could not raddle off my meds..  Spend a week in qurountine with fever there and I bitched my way out of there.. I mean seriously?????????? Yes, that got reported big time!!!  and over and over again--still at it.. I want a letter stating that they made a major boo-boo with my health.. Feel like they were out to kill me for good.. TO busy to care for me so off I went and woke up 12 hours in that crazy place.. But I am back and still ankle biting that hospital. 

They know they did a big mistake!!! Never talked with a shrink...  Never received a M.D. as I requested.. Never took their controlling pills either.. Still makes me angry-- 


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mykirbyroo
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December 10, 2017 2:27 pm  

WOW, John!!!!  Dr. Fox saved your life!!!!  I am so glad she studied hard in medical school and knew you were in great danger so quickly.  You sure didn't have much time to adjust to the fact that you were going to have an ostomy, did you?  But you obviously are doing extremely well and for that, I think we're all very, very grateful!!  Can't imagine these forums without your wit and clever humor!!  Merry Christmas!


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mykirbyroo
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December 10, 2017 2:32 pm  

I am so sorry you had such a horrible experience, Marcie!  Must have been terrible - and that's putting it mildly!!!!  Sure hope someone has done or is doing something about the awful time you had in the hospital.  Am really glad you're doing better!!!


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john68
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December 10, 2017 2:34 pm  

She sure did, and is quite a Character!! Its folk like yerself that help so much without knowing it Merry Christmas.


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Marcie
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December 10, 2017 2:41 pm  

Roo, never be afraid of being "gross" on here.. It is the way to explain to us what it REALLY about.. That is why and how we can understand and support each other-We know where your coming from.. There is show and tell pictures on this, we don't get grossed out... Because it IS our lives.. Living it.. lived it, may have to further live it.. 

But the saving grace of it all?????  We surived it!!!!!!!!!!!!!! 

Happy your still with us and you got it taken care of.. I see many at infusion every week-with your type of cancer, and doing great!! I tell them about this blog to help them through,, It is not my place to go into detail of being a Dr./know it all - to them, because of the questions that may follow..  I have not experienced cancer, so I cant go there.. I can only offer you all..

********************* Thanks.. ***** I love to help people***** but there is a limit.. 


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Marcie
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December 10, 2017 2:57 pm  

Roo, and John, Yup, I was fit to be tied!!! (still pissed) They never called my husband to let him know where they sent me..  When he called the ER hospital and asked abut me, they said they put me on an ambulance and sent me to the phyiic ward...... No where near the hospital where they dropped me off.. Just sent me off to the funny farm........ he he ha ha.. da.da, Boy did I see thinks in that place!!!! takes all kinds to make a world,, some people r in need of these places but not me!! I should write a book. Everyone says so--I do manage to get myself into strange areas of life experances without any help or with help-- I am a piece of work a times..  ask Tom......... He ducks and hopes for the best many times..and that is on a normal day to day.. :-)  He is always pulling me out of something..  but that nuthouse was a tough one to get out of --they like to keep people in for up to 3 weeks.. When I told them my lawyer was ready to proceed with the paper work, if I was not out f there in 4-6 hours, GONE!!

With that move, I got sicker and it was 3 weeks later I was back in.. And they (ambulance) took to the same hospital!! Never woke up for over 3 months.. Boy was I sick! 


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mykirbyroo
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December 10, 2017 3:01 pm  

Oh, Marcie, don't fret about me being gross and providing too much information.  The one thing I am not is shy.  I just like to forewarn folks that I'm going to be very descriptive and to cover one eye if they don't want to know!!!  LOL  LOL  LOL  I don't have gracious words to adequately tell my story, so I have to get rather colorful sometimes!

When I would go in for my weekly heavy-duty chemo and to get my wearable chemo-pack refilled for another week, I would take all the catalogs and magazines I had received that week and pass them around to those who wanted to read or see the nonsense for sale.  Some folks would nap.  Some would work on their laptop computers.  Some would visit with their families, and some of us would just talk, swap recipes and tell funny stories!  I will admit that I had a WONDERFUL time in the Infusion Room at the Cancer Center.  Got to know the nurses (all of them are Registered Nurses) and some of my fellow patients.

I always kept an upbeat demeanor when I went to the Cancer Center because I knew there were some who were having a real hard time -- and I tried to lighten their load just a little with a bit of good cheer and a big smile - sometimes a hug, too.  A couple of folks that were in infusion with me have since passed, and that makes me very sad.  But we all fought the good fight as hard as we could.  Cancer is a mean, savage, vicious beast.  No two ways around it.


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Zvitusk
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December 10, 2017 3:21 pm  

We gotta keep moving on, forward,  upward.

Most of us found it difficult to get a stoma because we were afraid to be freaky or different.  This was not discussed in school as a life goal or occupation. 

Like 99% of the world,  we were afraid to CHANGE our pain for something else that we didn't know about. FAMILIAR is more comfortable than the unknown. 

Well, we are here and now.  WE ARE SMILING OSTOMATES.  This is our present. And our future. 

We are smiling because we are not alone.  (Before,  we were very alone in our pain. )  We are not freaks , though we're different. And we're not afraid to move forward,  because our inhibitions have been released. 

Look, we can even talk about it. 

We gotta keep on keeping on.


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Marcie
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December 10, 2017 3:41 pm  

I have passed on an idea at my support group.. And, they loved it.. Shall we try?

As Ostomy aware month is October.. "the rocks"--u know the rocks that people paint and place around parks, buildings, shopping centers, etc. most of them are Cancer,  a nice "hello" "your loved"- well, I though that we Ostomates do the same thing.. Finds small/med. nice formed rocks, paint them and write on them- ostomy support October month. with information of a www.______________ what ever support- info center-not this one unless Eric says yes.. we can go on our own-- Or just use old paint and paint rocks and just give the info- www._? and no October mention-- then people will go to their computers and click on and READ .. That this happens, and can to them also-- People hide them in bushes, gardens. (but can be seen) it is fun.. So- when your out walking, and find some rocks to fit this info- use some old paint, and go for it.. We are doing it.. Even putting some at T.V. stations.. with follow up letter/e-mail.  Pass it on!!! God only knows about us-Time to give him a hand!!! 

Time to get the word out!!! We exist and just as beautiful as ever and more so!!! You hear everything about cancer-but not ostomcy cancer-- you hear about all kinds of dieases.. but not us!!  Crohn's  UC,  JUst put ostomy with www.___ (?) and let them read on!!  

********************* How's that?**************************** :-)

 

 


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Marcie
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December 10, 2017 3:58 pm  

 will tell you, when I woke up from my 2 months coma, etc. before surgery-I was so scared I was back at the funny farm-- When I saw Tom, I asked where am I? Not there again!! Get me out!! So confused......... so, u can understand the first god year my shock was "what the heck happened to me these past 6 months why?"  Why didn't they take care of me properly in the first place? YEs, I was angry, shocked, in pain, had to learn how to walk again-etx. hated my "Singing whoa Nellie" Standsing fine one moment and then lost 6 months and I have to learn everything and more all over again and accept.. But I did it!! 


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