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Hi fellow ostomates

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(@ann-c)
Joined: 7 years ago
Posts: 23
Topic starter  

Hi my name is Ann and I've been following this website/forums for quite some time. I recently posted my first question and got some excellent suggestions (thanks again!) and so I thought I would introduce myself.

I am a 38 year old woman and I live in Tampa. I have suffered from idiopathic constipation and colonic inertia for over a decade and in June 2017, I experienced a complete bowel obstruction. I went septic and two days later, I woke up with an ilieostomy. The truth is, I had no idea what it was and it freaked me out! Since then, I've required two additional surgeries due to prolapses but Bertha seems to be liking her new home and is staying put (knock on wood).

The doctors don't know yet if this will be a permanent ostomy or if I will be able to have it reversed. I still have part of my colon and rectum, but since neither were working that great before all of this happened, they are hesitant to put me back together for fear that I'll get another bowel obstruction.

The truth is, I still find it difficult at times to accept the fact that I may have this stoma for the rest of my life. Only because my constipation issues, although unpleasant, did not significantly impact my quality of life... having a stoma wasn't something we even discussed. None of my doctors ever indicated that I would need one down the road, so it was a huge shock to wake up in the hospital and suddenly have one. My heart goes out to all of you who suffer from UC and Crohns. You are truly such amazingly strong and courageous people! And I can understand why having a stoma would be considered a blessing, considering all that you had gone through!  I guess I am still trying to change my perception and recognize my stoma as a blessing as well. The emergency ilieostomy DID save my life after all!

Anyways sorry for the long rant. I am so grateful for these forums. They give me so much comfort and hope. God bless you all. :)

 

 

i


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Hi Ann . C. Welcome.. I also woke up with my surprise.. After a few months in coma etc.  Took me a long time to accept this and still working on it.. This blog helped me to compleat this acceptance.. So, maybe you will get there faster than me. This is a MAJOR help--

Eric has interesting suggestins as we do also- Eric has blogs that u can get into that can ease your mind.  AND if u have any advise-let us have it.. We support each other.. Family we are.

But we do here, a have fun at the lounge.. So if u have some humor Kindly join us.. M.

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


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Hello Ann . Sounds like you had quite a surprise for sure . I know it is probably pretty strange for you getting your ostomy that way . And it is quite a change and can take some getting used to  . I have Ulcerative Colitis and mine came over a period of ten years before I received my Norman  . 16 months ago and has taken me awhile to adjust . But if you end up with yours permanently it will be for the better . Believe me I didn't think like that right off but I'm coming around . Sorry I'm long winded . Just wanted to say welcome to the group Ann . This group has made a difference for me . You have stumbled on a good place here . 

Proctectomy , Ileostomy , Ulcerative Colitis


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Having a stoma, Surprise or not is UGH!! (as Charlie brown would say)!!!!!! If I knew that I was so sick and understood this maybe I would have felt different.  But some of us here really went through hell.. But in the long run, we really don't care much for it.. Then there are a few that love theirs--right off the bat. But I think your in my boat.. You can do it!! I did!! have to.

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


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

Dear Anne, 

Welcome to the new reality,  to the next stage of your life. Your prior life of pain and suffering is over. Think about that. 

Ok

Enough dwelling on the past.

Moving forward,  How are you doing? Did you hear any good jokes lately? What are your plans for the future? Where do your talents drive you?

We can go on and on but there is plenty of time ahead of us to get to know each other. 

Welcome to our group. 


   
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FelicityG
(@felicityg)
Joined: 7 years ago
Posts: 257
 

Hi Anne. My Oscar was a surprise/ not surprise. I figured things were heading that way, went into the hospital overnight for testing. The next evening I was being asked to consider an ilieostomy. I agreed figuring I'd be waiting a little. Nope, he was ready to do it the next day.

No regrets here, feeling better and getting back to life. I was awful sick and slowly losing what life I had, the ability to get out and do and not be stuck on my bowels whim. I hope however your ostomy journey goes you have no regrets.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


   
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(@ann-c)
Joined: 7 years ago
Posts: 23
Topic starter  

Oh thanks to all of you for your responses. It's so comforting to know that I am not alone with this. I really appreciate all of your words of encouragement. I hope I get to know you each of better as time goes on!


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4206
 

We are all glad to have you hear, Ann - even under these circumstances. 

It actually humbles me to know that people are getting ostomies for so many different conditions and it's not just about IBD or cancer. 

I hope that this forum and the content I create can help you become more accepting of your stoma, whether that be in the short term or permanently. 

P.S. I love Florida! I'm so jealous. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@ann-c)
Joined: 7 years ago
Posts: 23
Topic starter  

Thanks Eric! Your website/forums/videos have helped me so much...I find so much experience, hope, and humor here! It helps to remind me that I am not alone. Thank you for all that you do for us!

PS Please let me know if you're ever down this way again! Would love to meet you in person. :) It's a chilly 60 degrees here right now haha.


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
 

As I hear about how many of us ended up with surprise ostomies (I too was surprised) I am wondering if the surgeons leave it for a surprise on purpose if they can. I wonder how many of us that were surprised would have said "yes" to it only knowing what we knew then, without really getting the idea of how life improves with lessened disease.

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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(@bubbles)
Joined: 6 years ago
Posts: 244
 

Hi Ann and Welcome. 

I had been wanting a stoma for around 2 years as I became home bound chained to a toilet. Then I had a bowel blockage that almost killed me . They wanted to just cut out the bad parts AGAIN . This time I told my surgeon why put off the envidiable. Just give me a stoma now . I wanted it . I wanted to live again normally like all the folks I had been reading about that had one . They all loved the freedom their stoma gave them . There were way more successful stories than bad ones . So here I am 5 months out . I have never regretted getting my stoma A.K.A. Bubbles .


   
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(@kathymac)
Joined: 6 years ago
Posts: 35
 

I am like Bubbles.  I was housebound the last couple years and even though only a few steps from the toilet - still accidents.  Even Depends couldn't hold back the volume.  I CHOSE A STOMA.  For the first few months - until I found the system that works for me, I was miserable.  Leaks, leaks, leaks and horrible skin conditions from contact with stool.  Now that I have found a system - no leaks whatsoever, happy skin and definitely happy me.  I can do just about everything I did before - even more in fact.  The only thing I haven't tried is horseback riding - but with the new heavy snowfall we are getting tonight, may just go out for a ride.  Love riding in the snow.  I donated my mare to the rehabilitation riding center nearby and I can ride her any time I want.  She loves the snow, too.  Don't give up - life is so much better now.  Heck, lots of the time, I forget I even have a colostomy.  Get the right system that works for you and you, too, will be a happy camper. :)  Good luck with everything on your stoma journey.  One more thing - I named my stoma "Raspberry" - because that what it sounds like when passing stool and gas into the bag.  Just blowing raspberries at me :) 


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

It feels good to hear that you are on the horse, instead of the opposite. 

Keep on TRUCKING  !  ( moving forward )


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Hi Ya All, received a call about the call that is to be made to me for next week.. For Gattex.  Got my instructions.. They hear in as I told you about.. This is for anything said of issues that a Gattex user may say that they will feel is interesting for this drug in use.  Along with my questions. That also for future information for them of my questions.. She is not an ostomate.. My age group. (that helps a lot!!!!!!! ) She has been on this drug for over 3 years.  So she was started in the testing mode.  Looking forward to this-- Shall be an interesting week next week. Getting a visitor, and a phone call.. And infusions..... 

Kathy-If u don't mind, can I ride along?  Choose me a nice horse.. Only live once, and I did ride through apple trees of many acres - very enjoyable!! Enjoy!! Happy that your doing so well! M.

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


   
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(@bubbles)
Joined: 6 years ago
Posts: 244
 

Marcie write down your questions so you stay focused . I am sure the call time  will be limited . Good luck .


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Got them mostly done with space for their answers........... You have anything to add?  In case I don't have it on my list?  I got a few punch lines in also-- :-) Just in case, maybe to lighten my ear droppers :-)  

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


   
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(@kathymac)
Joined: 6 years ago
Posts: 35
 

Got loads of snow, so I am going riding today.  Can't wait.  :) 

Kathy


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Where do u live Kathy?  WIth all that snow?  

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


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4206
 

Hey gang. With respect to Ann, can you post other topics in a separate thread? This one went from her introduction to something totally different. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@kathymac)
Joined: 6 years ago
Posts: 35
 

Battle Creek, MI.  Still snowing - love it :) 

Kathy


   
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