What are the pros (vs. cons) of having an ostomy bag?

New Topic Post Reply Printable Version
36 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted Yesterday 1:16 AM (GMT -7)   
My next blog post is going to be all about the bag. I plan to include a list of pros and cons that I want to be honest and unbiased, but I could only think of three things for my pro list while my con list is quite long. Are there any other pros that you all can think of to having an ostomy? Here is what I have so far:

- You have the freedom of emptying when it's convenient.

- You have the freedom of eating almost anything. (Just avoid foods that could cause blockages).

- There is no urgency or cramping to deal with.


(This is NOT supposed to be about j-pouch vs. perm-ileo; it is just a post to prepare people for what to expect when getting any type of ostomy for any reason, since even people with j-pouches have to live with an ostomy for a short period.)
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted Yesterday 1:28 AM (GMT -7)   
Oh I thought of another one:

- Your "farts" don't smell until you open your bag.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Silent Lucidity
Regular Member


Date Joined Nov 2007
Total Posts : 396
   Posted Yesterday 2:34 AM (GMT -7)   
I think you also need to provide clarity between types of illness/disease, as different things will apply to different people. Speaking as a "UC'er", the following apply, a lot of which I was afflicted with at the bitter end, when the disease went ballistic:
Able to leave the house, and everything that entails (work, socialise, shop etc).
Able to get out of bed without every joint in my body screaming in pain.
Able to hold down food and water, necessary to actually stay alive without TPN.
As a man, able to urinate standing up, as urination would trigger bowel incontinence.
Able to pass gas, without fear of soiling clothing.
No longer any need for heavy duty steroids and immuno-suppressants like Azathioprine.
No more periodic Hospital in-patient visits.
No more invasive bowel examinations.
No more worrying how long I will stay in remission this time round.

Wow, I'm glad you posted this, I hadn't fully realised what my surgery had done for me until now! I hope it gives you something for your blog.

Edited after proof reading!

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted Yesterday 2:43 AM (GMT -7)   
I want to clarify that I'm not necessarily looking for pros of just the disease being gone or surgical options in general (that list could go on forever); I'm more just looking for pros of specifically living with a bag.

Some things you mentioned, however, I could definitely use and will add to my list.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Silent Lucidity
Regular Member


Date Joined Nov 2007
Total Posts : 396
   Posted Yesterday 3:05 AM (GMT -7)   
The pros of having a bag for UC are that the disease is gone, surely? Everything else follows suit BECAUSE the disease is gone. I certainly can't think of any pros to it if the disease weren't gone! Of course, Chrohns Disease is a different ball game. Some sufferers have ileostomies because their Colon is afflicted so badly, or even exclusively. But obviously for them, the disease isn't gone.
I certainly don't mean to sound antagonistic, but your clarity has left me a little confused (now there's an oxymoron for you!).

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted Yesterday 4:25 AM (GMT -7)   
I know... it's not really a clear line at all... I just wanted to have a post about pros, cons, tips, and stuff related to the bag itself. I've already spent enough time talking about how awful the disease was and how great it is to be disease-free, but haven't really delved into what it's like to wear a bag day in and day out.... I just didn't want it to be all negative. It's kind of hard to explain what exactly I'm looking for, but I got a couple ideas off of your list, so I guess I've enough to go on for now. Will be posting it soon.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted Yesterday 8:29 AM (GMT -7)   
I guess the pros need all the other things that go along with it too...maybe as a sub heading type thing...the 3 things you listed certainly are the most important 3 things.

Also having so many choices available for those to "get it right" when they start with an appliance or two that isn't the best fit for them but not locked in to using something that doesn't perform to the optimum level. Granted the trial and error aspect can be a challenge for some but once you find the right set up it makes it a lot easier.

One big benefit is for those who only had the UC, they no longer need medications.

Of course having "the bag" gives most everyone their lives back. (Unfortunately for some, the complications we read about here are distressing. I wish the surgery could just be the "be all end all" for everyone.)
Wife of 65 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

bostwis1
Regular Member


Date Joined Jun 2010
Total Posts : 269
   Posted Yesterday 8:59 AM (GMT -7)   
The only con I can think of is the maintenance that comes with the bag as far as changing it a couple times a week and making sure you always have supplies. Other than that, life is great with the bag. I don't take any medications and I live a normal life. There is nothing the bag has stopped me from doing this past 11 months. I even wore a bikini this summer.
Sara
22 year-old nursing student
Step 1: December 2011 (Had 3 additional gut surgeries due to complications)
Step 2: January 2013
Take down: TBA

PairODachs
Regular Member


Date Joined Jul 2011
Total Posts : 35
   Posted Yesterday 9:05 AM (GMT -7)   
For my husband, there have been many pro's. Of course, a lot of them are related to no longer having the disease, but some are bag related. He was sick for 11 years and fairly young (26) when he had his surgery.

For example, we were able to take a week-long trip to a theme park this summer, which we never would have been able to do before. Having the bag allowed my husband to walk around for hours, eat what he wanted, and enjoy the park like anyone else-- something that would have been impossible while he was sick.

Also, he does not have to explain the bag, or tell anyone about it, if he does not want to. When he was sick and running to the bathroom over 10x per day, everyone we were around knew something was wrong with him, and we always had to provide at least a brief explanation.

The bag has given us freedom- taking road trips with over 8 hours of driving, walking around malls or museums or theme parks, no constant worry about where the nearest bathroom is, as you can empty at your convenience, not having to wake in the night to use the restroom if you don't want to.

The road to get here hasn't been perfect, or necessarily easy, but 16 months after surgery, it is certain that having the ostomy has improved everything about life.

-- Kirsten
Husband was dx with Ulcerative Colitis in 2000 at 14 years old. We met in 2002, married since 2007. Proud owners of 2 miniature dachshunds.

Meds tried: Methotrexate, 6MP, Humira, Tacrolimus, Remicade, Imuran, Cyclosporin, Flagyl, Asacol, Sulfasalazine, Pentasa, Rawasa, Pravastatin trial and Prednisone. No remission since 2008.

Total abdominal colectomy with semi-permanent ileostomy on 7/1/2011

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5520
   Posted Yesterday 6:03 PM (GMT -7)   
     Ditto to all the above.  Personally, my grandmother died from cancer of the rectum at the same age as I am now (66).  I had the operation at age 63, having suffered with ulcerative proctitis for twelve years before.  At least I won't have the worriment of developing rectal cancer.  The bag is soooo well worth it.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted Yesterday 6:24 PM (GMT -7)   
I agree with Sara. Not many cons as long as everything is working the way it should--and for most people, that is the case. It's all in your outlook. For me, a j pouch was not an option, and I am ok with that. When I hear people complain about having to have a temp ileo and "feeling bad" for me because I have a permanent one I just want to scream sometimes...look at the good things this is giving you and realize its not a huge deal in the grand scheme of things.

My ileo gave me my life back and saved my life. That's enough of a pro to outweigh all cons. There is never a day that I'm not thankful for my surgery.
Stephanie, 30 (!!) years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1685
   Posted Yesterday 10:00 PM (GMT -7)   
No more colonoscopy prep?
http://activeguts.wordpress.com/

Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome

Pentasa (1000x4), hydrocort enemas, dermal steroid shots, 2.5 mgs pred and dropping!

Tried lots of drugs and diet, didn't work for me.

Silent Lucidity
Regular Member


Date Joined Nov 2007
Total Posts : 396
   Posted Today 1:53 AM (GMT -7)   
I'll second the no more Colonoscopy prep, almost as unpleasant as the procedure itself!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3123
   Posted Today 4:55 AM (GMT -7)   
I agree w/others that restoring my health is the biggest pro of the bag -- it's not like the bag is so great that any of us would recommend that a healthy person go through surgery to get one.

On the practical, however, I was on bed rest for 3 months with no sitting or bending allowed.... my situation was due to a complication from my initial surgery, but other people have similar limitations due to hip replacements and other non-gi related things. In this situation, it's a huge advantage to have an ostomy because you can empty it standing up .... with conventional pooping, you'd have to use a bed pan or a plastic container or whatever (I emptied to a jug and then emptied the jug in the toilet).

Same advantages for porta potties, situations when the toilet is broken, etc. Much easier to go into a large yogurt container or a hole in the ground or whatever with an ostomy .... and with porta potties, they are deep enough that there's no splash emptying standing.
50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 645
   Posted Today 8:42 AM (GMT -7)   
Now that I have my ileo I would never want to go back to the "old" way, and I am so very glad I never bothered myself with going the j-pouch route. Don't get me wrong, the j-pouch has it's advantages and many are very happy with theirs. It's just, for me, the ileo is just way too convenient. I hardly ever talk about my ileostomy with family and friends because it doesn't come up much. I don't even think about it 90% of the time. The other day though, after a couple of glasses of wine in each of us, my sisters started asking me questions and I answered honestly.

Even when I was healthy I used to have indigestion, and would become gassy. It is tough to deal with that situation at say, a quiet, all-day meeting. Also, even people with normal functioning colons have issues with holding it in when duty calls. A really gross example was the pile of poop that my mom and sister saw in a dept store last night because someone didn't want to get out of line for a good Black Friday deal. Or, how about the time it takes to go? For me, I am in and out of the bathroom now in five minutes. I remember holding it in a few times in high school because the bus was coming and I didn't have time to deal with pooping.

Once I gave my list of pros and cons to my sisters, with perfectly healthy colons, they both said the same thing: "Why don't we all have an ileostomy?"

If you can get used to it, and you can reason your way out of the emotional obstacles, there really is no reason why not to have one. Pooping out of one's butt is overrated!
37 year old mother of three
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Proctocolectomy with permanent ileostomy 11/29/11
Stoma revision surgery 5/31/12 to rectify supposed hernia, stoma, and ongoing skin conditions
Finally on the road to recovery

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 382
   Posted Today 1:52 PM (GMT -7)   
 
It may have been mentioned above, but I didn't specifically see it and for me it was a BIG one . . .
 
NEVER having to worry about the chance of developing Colon, Rectal or Anal Cancer ever again.
 
On the lighter side . . .
 
Considerable savings on Toilet Paper smilewinkgrin
 
 

58 year old Grandma in the Buckeye State.
UC DX 2006 in 2007 DX was changed to Crohn's Colitis.
June 2010 had 10 inches of my colon removed due to a stricture.
Refused Remicade and Humira and opted for what I was certain would be my end result.
July 2011 had a proctocolectomy with permanent end ileostomy.
Got my life back with no regrets. Life is GOOD !!!

Post Edited (CrohnieCJ) : 11/23/2012 12:56:34 PM (GMT-7)


bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 11/24/2012 1:30 PM (GMT -7)   
I actually have already posted this blog. Click on the link in my signature if you want to check it out, and feel free to add comments at the bottom of it.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 11/24/2012 1:54 PM (GMT -7)   
Seems the cons are more subjective than objective, in turn making said list personal opinion vs. factual.
Melissa
Dx Crohn's disease 2003
Hospitalizations to numerous to list
Prednisone, Rowasa, Pentasa, 6MP, Remicade, Asacol, Humira, Imuran, Flagyl, Cipro, Cimzia
Total proctocolectomy with end ileostomy 12/15/2012
Currently battling peristomal Pyoderma Gangrenosum, tx topical steroid ointment, silver powder, aquacel AG dressing and now on Cimzia

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 11/24/2012 1:56 PM (GMT -7)   
ostomy actually means a surgical procedure that creates an artificial opening - the prefixes denote the TYPE of ostomy, ILE - COLO, UR, JEJUN, etc.
Melissa
Dx Crohn's disease 2003
Hospitalizations to numerous to list
Prednisone, Rowasa, Pentasa, 6MP, Remicade, Asacol, Humira, Imuran, Flagyl, Cipro, Cimzia
Total proctocolectomy with end ileostomy 12/15/2012
Currently battling peristomal Pyoderma Gangrenosum, tx topical steroid ointment, silver powder, aquacel AG dressing and now on Cimzia

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 11/24/2012 1:59 PM (GMT -7)   
Well, all the things on the list are facts for me (in other words, they definitely exist - it's not like I just THINK they happen), but whether or how much of a con they are can certainly be more subjective... (Although I don't think anyone would say that the stuff on that cons list really belongs on the pro side.)
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Post Edited (bootstrap) : 11/25/2012 5:07:21 AM (GMT-7)


allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 11/24/2012 2:11 PM (GMT -7)   
The risk of a blockage is terrifying since I've heard they are extremely painful and can last from hours to days. (Fortunately, I have never experienced one myself.)

Fact, for you? Blockages happen withOUT an ostomy too...
Melissa
Dx Crohn's disease 2003
Hospitalizations to numerous to list
Prednisone, Rowasa, Pentasa, 6MP, Remicade, Asacol, Humira, Imuran, Flagyl, Cipro, Cimzia
Total proctocolectomy with end ileostomy 12/15/2012
Currently battling peristomal Pyoderma Gangrenosum, tx topical steroid ointment, silver powder, aquacel AG dressing and now on Cimzia

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 11/25/2012 5:59 AM (GMT -7)   
Yes, it is a fact that the risk of a blockage is scary to me. People who have had them tell me they are painful and that they have lasted for 12+ hours, so as far as I know that is a fact as well.

Yes, intestinal blockages can happen to any living creature that has a GI tract, but they have never been a serious risk for me until I had an ostomy.

I'm not really trying to start a debate here; I was just wanting to make sure I also included the positive side of ostomy life, which is why I was asking for more ideas for my PROS list in this thread.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Post Edited (bootstrap) : 11/25/2012 5:30:18 AM (GMT-7)


bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 11/25/2012 6:14 AM (GMT -7)   
allbluezoo said...
ostomy actually means a surgical procedure that creates an artificial opening - the prefixes denote the TYPE of ostomy, ILE - COLO, UR, JEJUN, etc.


Right. I didn't have room to list all of them off there, so I just included the two most common just so people reading know what I am generally talking about when I use the term in my blog... though I suppose I could update my definition to be a bit more accurate.

The first definition on the web (from Princeton) defines ostomy as , "an artificial opening for the elimination of bodily wastes"... so I guess I'll go with that one since it's a bit more clear.
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 11/25/2012 6:42 AM (GMT -7)   
Thanks to everyone for your suggestions. I took several of them and added them to the list. Check out the updated version. :)


-------------------------------------
CrohnieCJ - According to ddd45, people with J-pouches like me are still at risk for cancer (though I imagine not as great of a risk as I had before surgery after seventeen years of UC). But I will add eliminated risk of colorectal cancer to the top bullet on my list under "returned health".

And somehow I find I'm using more toilet paper than before to clean out the tail every time instead of less? It might be related to the type of tail/drain I have... I'm not experimenting that much with different types of bags since my takedown is so soon.
-------------------------------------
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Oct 2012 - Proctocolectomy, J-Pouch, loop ileostomy.
Take-down scheduled Dec 11th.

Dx mild/moderate UC 1995
Dx severe pancolitis 2011

Post Edited (bootstrap) : 11/25/2012 4:27:31 PM (GMT-7)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 11/25/2012 9:55 AM (GMT -7)   
Actually I did not mention the "possible blockage" as a con but now that you mention it, I feel it is definitely one. We don't spend time agonizing over it but respect the fact that it is a true concern and as such my husband does eat slower, chews food really well and he avoids things purposely that may present a problem. That doesn't mean it still can't happen but he makes a concerted effort to "TRY" to stay out of harms way.

I have 2 sheets of information I ran off from the UOAA concerning blockages....how to treat them at home & a sheet with instructions for the emergency room IN THE OFF CHANCE we go somewhere that doesn't totally know what they are doing. I keep these 2 sheets with his current supplies as well as a set with our travel documents just so we are prepared if this occurs.
Wife of 65 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free
New Topic Post Reply Printable Version
36 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Monday, November 24, 2014 9:01 AM (GMT -7)
There are a total of 2,276,669 posts in 253,050 threads.
View Active Threads


Who's Online
This forum has 158728 registered members. Please welcome our newest member, Rosalba.
328 Guest(s), 18 Registered Member(s) are currently online.  Details
sayyadina, logoslidat, GreyBlazer, colitis91895, peme6040, RunnerGirl82, brt4545, Dan88, Bohemond, Park12, Patrick M, mysickkid, w0hll, Dewayne, xy123, krtuttle, Nosila, _Marine_


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer