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Zvitusk
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March 14, 2018 11:21 pm  

Ever since my Ostomy,  my view of the  world changed. 

Let me explain.

Before, I sat on the toilet facing out. Now, I am turned around facing the water tank. The major difference is now I see what I excrete. I am a "front butt". 

You will ask, "so what"? The way I see it, l have to see my own crap. I would be lying if I said that it did not affect me.

It is difficult to think clearly when you have to empty your bag 10 to 20 times every 24 hours. It is hard, very hard, to work on a project with focus, when you also have to worry about leakage , because you forgot to empty. 

While I am not involved in meetings,  imagine if you had to attend one that ran into overtime,  taxing your bag.

I am opening up this topic because i have to face my new reality . I am 3 years into my Ostomy and have matured in my attitude.  But I am not "there" yet. I feel that a thoughtful discussion will benefit us all.

Z


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Bubbles
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March 15, 2018 2:22 am  

I think there are two camps . Those that wanted a Ostomy because they were sick for so long they wanted to find an end . The others got a Surprise  Ostomy . Those were fine them BAM ! Cancer or a sudden illness caused them to have an emergency Ostomy . 

I fall into the first camp . I wanted it for the last two years before it happened. I read and educated myself preparing for it . 

The second group was not prepared nor did they want it . That is very devestating emotionaly and mentally. 

In the end here we are . All in the same bunch . With time  and support from fellow Ostomates we learn how to cope and most importantly know that we are not alone . Sharing stories takes away the scary and frustrating parts of this journey. With time I wish us all smooth sailing . 

Be well, Bubbles 

Edited: 4 months  ago

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john68
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March 15, 2018 3:12 am  

Hi Zvitusk, from the day we are born our life is going to be full of challenges. some folk can get through life pretty simple and other people endure a lot of suffering. some life issues we have no control on and some we can change by how we approach them, Having an ostomy is a big change in life. I agree with the points you make but if we dwell on the negative it takes away from the positive. Many new ostomate travel a hard road struggling with leaks and skin problems if my reply is just one of "oh my life has been so great since I received my ostomy" its going to make others feel worst about their problems! When I have a leak it knocks me back and makes me feel rattled! but I have to take a deep breath and say well it sorted now. I made many changes to my life to fit my stoma, but my stoma has to fit round me too. If any thing it made me more determined to prove I could have a normal life. I do have to attend meetings and if I have to attend to my pouch I excuse myself and do it. every one I work with know about my ostomy and its best to have it that way. I have passed wind at may be not the right time but I deal with it with humour. this week we lost one of the worlds most brilliant minds Stephen Hawking. if ever a human being over came adversity he was one. Our illness was cured by our stoma and the life journey is helped by our mind.

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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March 15, 2018 11:57 am  

We all eventually adapt, but the time it takes can be days for some and decades for others.

I got accustomed to having an ostomy pretty quickly (although, there are days when the bag "gets in the way" of otherwise normal activities). That said, I've worn glasses since I was a kid and still haven't gotten used to it. 😎 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Zvitusk
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March 15, 2018 7:54 pm  

I'm not feeling "oh woe is me". I'm poorly articulating my Point Of View changes. 

I am used to being ill. It's just another obstacle in my path that I need to overcome . Sick liver = liver transplant,  kidney failure = transplant,  cancer of the rectum =proton therapy+chemo+surgery . When i am faced with a problem,  big or small, I find a practical solution and solve it.

What I am talking about is my change of  POV. I think differently about myself and about life in general. I smell roses! I love kasha varnishkes (a food), I take trouble to listen to someone else. I used to hate nudniks, now i can tolerate them.

So many new features,  i am just not used to me, i am not predictable. 

I wake up at 5.30 to study with my Rabbi at 6.15. I take classes all day because I love to study. This isn't the old me! Who am I? What am I? 

I'm  still young and capable of doing things.  I can say that because I do that.

Where am I  supposed to be going ? What's my aim,  what are my goals?

Thanks for listening to my rant.

Z


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Bubbles
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March 16, 2018 10:09 pm  

Mr.Z 

All the challenges have made you appreciate life  / living . That's a wonderful thing . There are lots of " Healthy" people that will never appreciate things the way you do . For that you are fortunate and blessed . 

I read this once somewhere. 

"" Some people hate Roses because they have thorns . But I love thorns because they have roses " 

isn't that beautiful? What a lovey way to see life . 

Be well, Bubbles 


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Marcie
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March 17, 2018 1:33 am  

Perfect bubbles!!!!!!!!!!!!! 

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


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Kerby
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March 17, 2018 2:42 am  

Amen, Amen. We are all in this together.  I feel better knowing I'm not alone. My Stoma was sudden.. Cancer... I've gone thru every emotion. You name it. My stoma ( Stella)  and i have reached an meeting of the minds. I know she's there, but I have my life. I told her today she's working around my life!  Obviously she didn't like what I said : My pouch blew up with gas!!!!  😁😁😁😁


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Marcie
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March 17, 2018 10:58 am  

Quote:

The one who falls and gets up is,

so much stronger than the one who never falls.

 

 

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


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Barbara
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March 17, 2018 4:33 pm  

I have been offline for a few days. Haven't been feeling well and am unsure what is up. I got back on today looking for encouragement and happened on this thread first thing. I am in the camp where I woke up to "surprise!! It's a stomach, what are you going to name her?" (I too chose Stella, and the med dispenser on my kitchen counter is "Brando". (Marilyn Brando since she too is female, but related to Stella).  I have changed to convatech products and have been happy with myself for the improvement, then this weekend Stella said "not so fast lass, I'm still in charge"  have been through four appliance changes, mostly explosive and total Carnage.  I was feeling really down in the depths again when I suddenly realized that I had taken care of the messes, the laundry, the bathroom scrubbing and extra showers and was sitting here comfortably in my chair.  Six months ago I would have been in tears and feeling I could not cope with this life. But I am stronger now, in many ways thanks to all of you and your caring encouragement.  We get stronger because of each other! Thank you.

 

 

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


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john68
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March 17, 2018 4:58 pm  

Hi Barbara, sorry to hear ye haven,t been feeling well, Never nice having to deal with a situation like that. but you should be really proud how it was handled!!! Can you think what may have caused the problem any thing different you done. Plus you have had good results this past while so bear that in mind.

ileostomy 31st August 1994 for Crohns


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Barbara
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March 17, 2018 5:23 pm  

I have a sneaking suspicion that the dreaded CDiff may be rearing its ugly head.   Hope not that means hospital, quarantine, and the very nasty vancomycin.  Not anxious to head for Holy Family for another visit.   I have a collection of red stethoscopes hanging in the bathroom.  There are 5 of them.  They are the ones the nurses use when one is quarantined so they don't contaminate their own and spread this superbug around the hospital.  I have 5 of them do far.  😣

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


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Bubbles
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March 17, 2018 6:33 pm  
Posted by: Barbara

I have a sneaking suspicion that the dreaded CDiff may be rearing its ugly head.   Hope not that means hospital, quarantine, and the very nasty vancomycin.  Not anxious to head for Holy Family for another visit.   I have a collection of red stethoscopes hanging in the bathroom.  There are 5 of them.  They are the ones the nurses use when one is quarantined so they don't contaminate their own and spread this superbug around the hospital.  I have 5 of them do far.  😣

I thought C-diff as soon I read read your post . 

Sorry 😐 


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Barbara
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March 17, 2018 7:46 pm  

I also posted over on the IBD forym, that in some ways beginning to wonder if I have moved on to Chrone's or IBD. Already diagnosed with IBS and wonder if I can progress to worse options with half a colon.

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


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Malsgal86
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March 18, 2018 9:33 am  

Oh Barbara I hope you start to feel better soon. Hospital stays are never fun.

And "Z" what a journey you have been on.

I am in the camp of "stoma due to cancer surgery". I knew it was coming but oooo boy what an adventure it has been. Had some really rough days during chemo and radiation, and 5 surgeries in the last year and a half.

I am a firm believer in it will be a good day if you choose to make it so. When my feet hit the floor each morning i CHOOSE to make it a good day. Do not get me wrong...I have had my moments and a few pity parties...we are allowed to have those...do what you need to do...cry, attend that pity party...but just make it a VISIT, do not LIVE there.

Get it out of your system and move on...easier said than done some days but necessary to your mental well being.

Remember to keep smiling...it makes people wonder what you have been up to ;)

Edited: 4 months  ago

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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Robert
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March 18, 2018 1:18 pm  

Hello Z

I will say I agree with you on getting used to having a stoma . Like Eric says it can take different amounts of time for different people . I have now had mine for approximately 18 months and I was one who was sick for a long time prior to deciding to finally have it done . But I did not educate myself enough about it before I did it so afterward there were things I didn't expect . I am not a real sociable kinda guy as far as large public gatherings etc. I am the only one I know outside of the forum who has one . So being able to talk on here is helpful . I too used to sit but now I stand and squat to take care of business . Not always comfortable doing that in different places . Recently took my first 4 1/2 hr. drive across desert without a hitch . Sometimes you just have to try it . My friends know what I have but I don't advertise it I use a wrap and lose clothes to try to conceal it . To be honest with ya I really don't like having it but it has made my life better than before and anybody thinking of having it done or who may have to have it done I would say do it ! Like Eric said some people get used to it faster than others it is taking me awhile but its getting better . But like you said Z I too look at things different now I just turned 60 couple days ago so I am still young enough to do things and that's what I'm gonna do . It may take awhile to get fully used to having Norman but if necessary I would do it over again and encourage anybody else to do it also .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Marcie
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March 18, 2018 1:40 pm  

Robert, so nicely put........ I feel the same way- I took a set back myself this week-found my big box of so many get well cards and I read them.. Then that brought on my shock of it all over again..  I guess it doesn't go away huh?  I am so  proud of your trip!!  Now u can try again..  You have much support at home...... and yes your young!! Hope you had a great 60 birthday week!!  My son- the  youngest will be 42 this week. Soo  I get to eat cake and enjoy it.. :-)  After I bake it tho----------- So keep up the good work on your healing u all-- it is that word again  TIME!!!!! 

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


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Barbara
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March 18, 2018 3:06 pm  

Robert, like Marcie said, hope the birthday week was good.  It's been a while since I turned 60, but life gets better all the time.  I have lots of issues, but, thank heavens for this forum to tslk, laugh, learn and vent!!  Hang in there "kid".

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


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Robert
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March 18, 2018 8:05 pm  

And thank you Barbara for the kid thing Lol . I tell people I'm middle age not old Haha . Hope you are feeling well 

Edited: 4 months  ago

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Barbara
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March 18, 2018 9:53 pm  

glad you caught the kid reference.  Sometimes you young ones miss them.  😉

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


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