I do not see why people would not want an ostomy

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NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 8/16/2010 8:53 AM (GMT -6)   
I have a temporary diverting ileostomy, since I have IBD in the left part of my colon. I have been living with it for about five months. I have no pain or anything at all. Life is great. I do not know why people would be scared of getting an ostomy. I really, really do not see any big draw backs from having it, unless you like to go out on the beach a lot. Also, if you are male, your female partner might be scared of you. If she is, she does not deserve you and is a little prissy prude who does not know much about suffering and should grow up. tongue

I am supposed to get reconnected next year, but I honestly do not want to. I feel so nice. I am on Humira, but I think it is useless, since the disease got worse in my rectum. Oh, well! I might get reconnected when I would be looking to get married. Until then, I do not want to get reconnected and go into another flare in a few years after it. Prednisone and Imuran - again? NO!!!!

If anyone has a quesiton about living with an ostomy, shoot! I would love to tell you how life is with it.
UC/Crohn's
Humira

CD/UC story: I took Cipro. Then, I had diarrhea. It felt like my whole colon was burned. It eventually got extremely painful to even have a bowel movement when only one drop of blood was passed. I was diagnosed with c diff. Took Vancomycin and the blood stopped. Diarrhea persisted. Colonoscopy was done and CD/UC was found. Cipro, I hate you and the doctor who put me on it.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/16/2010 9:11 AM (GMT -6)   
i feel the same way as you! These are so convient.
Esp over suffering with UC, i wish someone had mentioned surgery to me when i first got sick, other than the terrifying mention i got from my GI. that was the week after i was diagnosed, then noone ever mentioned it to meagain.
I surely wouldnt have wasted all that time. And it floors me to read about people suffering so badly going through so many things, when surgery could cure them!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/16/2010 10:04 AM (GMT -6)   
Most people choose to live with the life they know then to gamble on the life they don't know. But yes, life is much better post-colon and if those struggling with disease could see, in person, how well we are they might be convinced.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/16/2010 10:23 AM (GMT -6)   
i'm totally with you on this! after struggling for many many years, i can honestly say i finally feel gooooood :) and i LOVE my stomee ♥♥♥ it's much easier dealing with her than with a desease that won't let you live your life. and you can do ANYTHING with a stoma, even go to the beach every day.
Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

07/08/2010 - loop ileostomy

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 8/16/2010 12:37 PM (GMT -6)   
     I'll tell you why people don't want the surgery because I was in that position.  FEAR...fear of the unknown..fear of  complications..fear that maybe life will be worse after the surgery.   Believe me, I went through all that.  To make matters worse, I went to a colorectal surgeon two years ago following a ten day hospitalization with ulcerative proctitis.  He told me that UC sometimes "burns itself out" and that I would be "going" eight to ten times a day.  That is such bull!!!  Needless to say, I sought out a different colorectal surgeon when I came to the decision that I didn't want to live with the pain anymore, not to mention being homebound and not being able to make plans.  I am 64 yrs old and my husband is 72.  How unfair was that kind of life to him?  He's still in good health and would love to travel but not once did he ever complain.  He and my daughter saw my suffering and when I finally decided to have the surgery they were behind me 110%.  I want to thank the people in this forum who helped convince me that surgery would be the best option for me....suebear, summerstorm, Ohio and many others.
     You should post on the UC board because the people in here already had their surgeries.
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days. Prednisone, Asacol, Rowasa enemas. Two year remission. Flare..switched from Asacol to Colazal. Two year remission. Started 6MP in 2002. Flared yearly from 2003 to May of 08. Hospitalized for ten days in May of 08. Flaring more often since. Off 6MP. Remicade failed. Humira failed. Total colectomy with perm. ileo .

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 8/16/2010 2:43 PM (GMT -6)   
well said, Christine. You were a hard rock to budge, but you did, and now look .... you are feeling awesome.

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 8/16/2010 3:26 PM (GMT -6)   
Check out my blog, I love my ostomy!
He has given me the freedom to do things that I could never have imagined 10 months ago. I looked at some pictures taken during the "Allie is getting Oscar party!"....a party my friends threw for me right before I went into the hospital. All I can see is a sick, skinny, pale, scared woman. Nope, I'd never give Oscar up.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Davos
Regular Member


Date Joined Aug 2010
Total Posts : 33
   Posted 8/18/2010 11:37 AM (GMT -6)   
Hello to everyone,
I just came across this site as i was desperately looking on the internet for what life would be like if i took the plunge and had surgery to relieve me of my UC. I'm 33 and had UC since I was 17. I've more or less managed to control it with medication/supplements/diet, but after this most recent flare up i just don't know if i have the will power to keep on fighting the disease. I've always been so scared of the idea of surgery, but looking at some of the threads on here it seems like i'm mainly scared of the unknown.
It's true that the information provided in the uk on surgery options seems pretty limited to me. I was wondering about a few things and wondered whether some people on here might be able to help me, as it seems like a friendly place.
So here goes:
If you have an ileostomy what are the risks if the surgery goes wrong?
Once you've had it, how often do you need to go to the loo during the day to empty it?
Does it effect the kind of clothes you wear? (I've somehow managed to hold down a job in a bank and we need to wear suits at all times)
I don't understand how you can do things like swimming or go to the beach if you have a bag attached to you (unless the bag is much smaller than i think, i feel that i'd be self concious)
Can you really eat anything you please once you've had surgery?
Do you have to carry on taking medication for the rest of your life?
Well that's a lot of questions...better leave it there for now. Thanks
D

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/18/2010 3:07 PM (GMT -6)   
the complications are the same as any other surgery, most are rare though.

I empty 4-6 a day, or whenever i pee.

you can wear whatever clothes, i wear the same clothes from before my surgery, most of them come from old navy or gap, or kohls, just regular stuff. Now, im a girl so i dont wear suits, lol. But we have had a few business men on here, that do. In fact, Tony Snow (press advisor to GWB, who died recently) had an ostomy. Check out pics of him in a suit, noone ever would have known. Fred astaire had one too, lots of people you would never expect. check out photobucket.com user crohnsdisease password 6mp3asa

When i first starting thinking about it, i was picturing wearing an old ho***er bag off my side! Not like that at all!
Bags come in different lengths, depening on what kind you want. the most important thing is that you get a good placement for your stoma!

you can eat anything! i eat all kinds of stuff, the only thing i found that gives me the slightest bit of trouble is fried mozzeralla cheese sticks. I cant eat them, i just eat a few at a time. and drink LOTS of water, lol. FOr the first 6 weeks you kind of have to take it easy on your diet, but after that its pretty much whatever just chew well!

You wont have to take anymore meds for your UC, cause once your colon is gone your UC is gone, its amazing, the minute you wake up you feel its gone, its like a clean feeling. I take immodium sometimes if i dont want to empty for a while, or gas-x if i know imma eat something that causes gas.

I have had mine for 3 years, and i'm the same age as you, and i'm totally happy with it! It gave me my life back, and its even better now!

anything else youw ant to know, just ask!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Davos
Regular Member


Date Joined Aug 2010
Total Posts : 33
   Posted 8/19/2010 11:04 AM (GMT -6)   
Thank you for taking the time to answer me. I had a look at the photos, and it's true that you can't tell that people are carrying a bag with them.

So I take it the bag can be really small if you want to go swimming for example, but then during the day if you go to work you would put on a bigger bag?

Something that ocurred to me though is that if you need to empty it 6 times a day that means you need to make sure that you will be near a decent loo every couple of hours or so. That's not always the case, especially for men where often the urinals for men are just about bearable in public toilts but to go into a cubicle is a nightmare. I'm assuming you need a bit of space and a fairly clean cubicle to empty the bag?

Another point is intimate relationships. My girlfriend says she wouldn't be put off by me having a bag attached to me, but putting aside the aesthetic question, surely it would get in the way?

Also, i note that some people have a bag for a while and then have a reversal? What are the pro and cons of doing this?

Many thanks again
D

SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 8/19/2010 4:12 PM (GMT -6)   
Your welcome to have mine.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/19/2010 8:28 PM (GMT -6)   
you can change sizes of bags, but there really is no need. I always wear the bigger bag, i have the smaller sized ones, but they just annoy me.
If you saw any pics of me, i know there is at least one of me in my bathing suit, i have on a regular size bag.

As for the bathroom, you just need a regular stall, some people empty it standing. But i just sit down, put it between my legs, empty it out, clean the tail and close it back up, takes like 2-3 minutes. WOmen's bathrooms are nasty too! Not just the mens, lol.

For sex i wear a belly band thing which keeps it tucked against me. If my husband had one thats what i would have him do. It doesnt get in the way (of anything) that way.

The reversal you are talking about is a j-pouch. If you dont know thats where they make a pouch out of your intestine inside you and it holds the poo, until you go the normal way. Everyone differs, but its about 4-8 times a day with that too. Suebear can tell you more about it.
I didn't go that route, because i only wanted one surgery (jpouch takes at least two) and i honestly never wanted to use the bathroom the regular way again, i was tired of it! It's rare but jpouchers can get pouchitis or the jpouch can fail. That doesnt happen often, but i'm beyond a pessimist, lol.
I just didnt want to risk having to have more surgeries down the line to go back to an ileo.

If you get a jpouch you will have a bag for at least 6 weeks, so you can get the idea of it then. Some people like it so much they just keep it and decide not to have the reversal. Some people don't like it. But everyone says its better than UC!!!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 8/20/2010 4:55 AM (GMT -6)   
Davo said...
it's true that you can't tell that people are carrying a bag with them.


Just to clear something up, you don't actually carry the bag, it's attached to you with nothing more with what I describe as bandaid adhesive except a bit stronger so you just peel off the wafer when it's time to change.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

Post Edited (Shaz032) : 8/20/2010 4:58:35 AM (GMT-6)


Davos
Regular Member


Date Joined Aug 2010
Total Posts : 33
   Posted 8/21/2010 2:05 AM (GMT -6)   
Thanks for all the info guys. I'm definitely starting to feel less scared about this whole idea

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/21/2010 9:53 PM (GMT -6)   
Yeah, Davos, don't be scared. Surgery is always scary but just about all of us on this site don't regret this one bit. There is a general feeling of "thank god I had this done," and most of us are incredibly happy with the decision. It is really wonderful.
 
 
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

raindrop
Regular Member


Date Joined Jan 2009
Total Posts : 24
   Posted 8/23/2010 3:08 PM (GMT -6)   
I do have a question. I did post it as a new thread as well, but thought I would also post it here. I am trying to learn more about ileostomies...as much as I can for my patients. Is it normal to have a bowel movement from your rectum with a temp ileostomy? I know some leakage is normal...but what about about a med-large soft BM? I saw one in a patients brief, immediately told the nurse, and my shift ended shortly after. I never knew what came of it. I've tried to search this on google and can't find an answer.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 8/23/2010 5:26 PM (GMT -6)   
well, had life been great like that for me with an ostomy, I would have been all for keeping one. However, it was terrible. My skin was being eaten away by stomach acid. I leaked all the time. Output never slowed down no matter what and I would sometimes have to sit there for 5 hours to change the bag because it would never slow enough to do it and I would have to do it 4-5 times in a row just to get one to work. And it wasn't user error...the ostomy nurse couldn't even do it (I was actually better at it than her). She said she had never had such difficulty. I had trouble with both ostomies I had, too. One was below skin level and just asking for trouble. the other was better but still extreme output and problems.
I couldn't really even go anywhere because it was no simple "oh, I leaked" and just change it thing. It was an hours long procedure with literally liters of liquid shooting out. No hiding that.
Also, you could always see my bag (and hear the output). It was always full, so there was no hiding it.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 25 mg (tapering 5mg/week), D, B12, Iron, Prenatal vitamin, Lortab, Humira, Rowasa
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