Is anyone happy with their choice?

Somedude said...
There are people coming on here 5 YEARS later and still dealing with ostomy issues. Is 5 years not enough patience?

All this is purely a gamble for a better quality of life.

A difficult situation we are in.

Somedude, I think you really have to keep in mind that a lot of people who are fine just go on their merry ways and never look at these boards. People who are on them are more likely to post when there is a problem. For example, I didn't post that this morning I went swimming no problem. I ate cheese, no problem and Indian food yesterday, no problem. I had a full day yesterday and am not exhausted today. All of these things are amazing compared to my pre surgery life, and I could post things like this everyday, and they'd get really boring really quickly for everyone. Yes, I did go to the ER the week before last, and I posted on that.... but it doesn't mean I'm having problems all the time.

I consider it a blessing in disguise that I got so sick that the decision became clear to me -- it was surgery or extended pred or an experimental drug, and the last two were much worse options. When I had better options in the mix, then it was much harder to know whether what I was getting into was going to make things better or worse.

So, you're keeping informed, clearly surgery isn't something you want to do at the moment or maybe ever, but good to know what that road would mean.... just keep in mind that you hear more of the worst here and less of the mundane....

Active UCer -- best of luck w/surgery! I'll be thinking of you.

Nicecupoftea...the job thing is exactly where I was. I was completely unable to work...the incontinence was so unpredictable and the flares were pretty much constant. I am now able to get a job, if that is what my husband and I choose to do...but I am now able to work!!! YAY!!!

I am so glad there are good stories out there for those who are struggling with the big decision.

Somedude said...
You mentioned earlier for people with ostomy problems to have patience that it will get better? Can you guarantee that, of course not. I don't post as often here as I do on the UC (I still have my colon) but I read almost everything. There are people coming on here 5 YEARS later and still dealing with ostomy issues. Is 5 years not enough patience?

All this is purely a gamble for a better quality of life.

A difficult situation we are in.

Somedude, you have to remember just like on the UC board, most Uc 'ers do not have any major problems and are out living their lives and not posting on a UC support forum. Same here on this board. I can only imagine how many thousands and thousands of people have ostomies and j pouches. They are certainly not here...they are out living. :)

Allbetternow, thank you so much for this post (and also to those who've also posted on this thread). I had my ileo 10 days ago and although it's going well, it's too early to say whether I'm happy with it. I'm only starting on soft food today (one new item per day as I had terrible cramps in hosp when I tried soft food). After being on a fluid diet for 7 years and after 17 subacute bowel obstructions, 19 hospital admissions, after 5 years of deliberating and postponing I finally took the plunge and had my Ileostomy! Looking forward to the future, hopefully being able to eat, not having constant pain, not having to do bowel washouts bidaily! At the moment the pain is still so bad that I can't imagine when I'll be pain free again. Wasn't expecting the pain, thought I'd be back on my feet in no time! Hope it's not too long.
All the best to Active UCer for the surgery

Lolly

Shemc99 said...
I too am happy with my Ileostomy, I named her "Lily", lol. I am 49 yrs old and work full time as Respiratory Technician. I was off work for 8 weeks after my surgery and since then I am able to do things I couldn't before because of the UC! I no longer care where the bathrooms are located in stores! No more Prednisone..woohoo! I am not considering the J pouch so next week I am scheduled for the surgery where they remove the rectum and anus and sew it shut, (yuck)! I still have mucousy drainage from my butt and wil be glad to never have that again too! I am hoping for a speedy recovery and I will never look back and be sorry for the decisions I've made thus far! Glad to hear you are happy with your new life too:)

why would you not consider a j pouch if you're a candidate?

The operation to create the j pouch can be done at the same time as the colon removal and the reconnection surgery afterwards is small. Why would someone live with a bag if other options are available is beyond me. And I've read all the stories on here.

To me these are the following reasons why you'd willingly keep a bag.

-You have crohns (cannot get J pouch)
-You have way way too many complications previously and a successful J pouch is unlikely.

Shaz032 said...
... Or you've found out you can live a completely successful and wonderful life with an ileostomy and don't want to undergo any further ops....

Or you can live a completely successful and wonderful life with a j pouch and no bag. The operation argument was countered before.

I guess, my view on it, I am looking for the closest to normal as possible pre-uc be it with drugs/diet or surgery. Right now closest is a j pouch (if diets/meds don't work), really, for obvious reasons.

I am not saying that there is something wrong with the bag, because, yes, being healthy with the bag beats being sick with IBD any day. But, being healthy with j pouch beats being healthy with a bag.

Again, this is all subjective, but I believe there are people sharing my idea.

Post Edited (Somedude) : 9/2/2012 10:48:00 AM (GMT-6)

It's too bad arguments gets you easily offended. I don't care if you respond or not to my posts really. I read, I get myself informed, then I form an opinion.

I agree with summerstorm and chroniecj, it's all a matter of personal choice! No one should get mad about what another person chooses for themselves. I am very content with my ileostomy, there is nothing I can't do, and perhaps it would be the same way if I had a pouch, I'm not willing to try it though! My surgeon said there was a chance of incontinence with a J pouch and Ive been through that for about 15 years with the UC! I love my new life and if somedude has the Jpouch I hope he's happy with his, that's all that matters really.

Simply because in the future, I might or might not need to have an operation. It doesn't matter if the opinion comes from someone that has or not has a bag. Analogy: I own a house, I don't own a condo. I never owned a condo. I don't like condo fees. I have friends that love condos. We argue from time to time. There are pro and cons.

I don't need to have a bag to argue about pro or cons. I can formulate an idea based on what I see, what I read and what I'm told.

I understand Summer's point of view. There are valid points.

Just because someone made a choice (j pouch or bag), doesn't mean their choice can't be argued.

In other words: Shut the F up, and stop freaking arguing about it. That was to somedude in case anyone is wondering.

Less LOLing, more shutting the F up.

>_>

If I had the choice of a j pouch (I don't - I have a Barbie Butt - everything is sewn up back there), I'd have to think long and hard about it and after 35 years have concluded that I'm happy with my ileostomy - why fix something that ain't broke? :) If given the choice now, I'd definitely keep my ileo :) As you said, everyone thinks differently.

Peace & Harmony---good luck with your surgery!!! I hope it turns out to be exactly what you needed!

LollyLouise---hang in there! I remember the pain vividly and couldn't believe that someone could be in so much pain for so long and still have a happy outcome, but I did!!!

Somedude---"why would you not consider a j pouch if you're a candidate?"...that is completely off topic of my post. It sounds like you are just angry about your disease and are not ready to make the decision to have surgery of any kind yet. If you want to ask people why they chose to not have a J-Pouch, then ask away...but don't tell us we made the wrong decision by not getting one. My Dr. nearly begged me to have one and my answer was a resounding "NO". I never wanted to deal with the chance of incontinence again. Trust me, a leak from ileo is a lot less traumatic than losing control of your bowels in public. There are a number of reasons that good candidates for a J-pouch chose to have a permanent ileo. Maybe you should ask that question in a post and then not argue with those whose who respond.

"Just because someone made a choice (j pouch or bag), doesn't mean their choice can't be argued." YES, It does mean their choice can't be argued!!! Who are you to tell them they made the wrong choice? And why argue with them about their choice. Instead, why don't you just ask questions and listen to their reasons for making the choice they did.

It is wonderful to hear about those who are happy with their ileos! It makes me feel like I am part of a bigger group than I thought. I absolutely love EVERYTHING about my new life! You guys are awesome and best of luck to those of you who are preparing for surgery and keep on trucking and enjoying life to those of you who are living with ileos and enjoying life to the fullest!