Why not surgery?

beatUC said...
I certainly don't want to suggest than anyone should feel bad about their choices. This disease is hell, many get to a point that some of us never have to and I feel for you.
I feel a certain solidarity with anyone who has UC/CD pre or post surgery.
The whole medical approach to disease changed drastically when men took it over from women and I believe we all still suffer under that effect even now.
Wherever you are in your life, start every day anew leaving your luggage behind. Don't apologize. don't feel less than you are.
I feel terrible that what I've written has made anyone uncomfortable or sad, if it did, I sincerely apologize and freely admit I haven't walked in your shoes...

Man, I'm really disappointed in this. Everyone on here must adhere to their respective roles. You, are known as the anti-surgery dudette. You drop in in threads and you throw one liners why it's bad.

Alternatively, you bicker with Quincy. Which is also amusing.

I really want you to stick to your character lol.

garylouisville said...
Waiting for a cure could be fruitless. How many diseases are there that have been around for decades and generations with no cure found yet? Most of them have had millions or billions of dollars poured into them and still no cure in sight. Sometimes chasing that pot of gold at the end of the rainbow is nothing but a fruitless endeavor.

"Waiting for a cure" is certainly the most irresponsible strategy I've ever heard of to deal with UC.

Somedude said: "Hey, I still find it dumb that some go for perm bag when they have the option for the J pouch".

I guess I am one of the "dumb" ones, then, somedude. Dude, I enjoy some of your funny posts, but decisions like major surgery including what type of surgery require solid research, deep thought, and the maturity of an adult, not quips that sound like they are out of the mouth of a twelve year old. :) Each surgery type has its pros and cons, and hopefully everyone looks carefully at the pros and cons (including on whether to even have surgery) before deciding. It is critical that one get surgery and the correct type of surgery suited to ones personal preferences and needs and not just do what is fashionable. For me, having to go, urgency and incontinence, however low the risk, would be so prohibitive for my lifestyle that I choose not to take the risk, especially since the end ileo completely rocks for me. I am not planning on what you call the barbie butt thing though so if my ileo ever creates issues I *might* consider a jpouch... or I might consider a BCIR, or I might just have whatever oroblem fixed, but for now (knock on tummy) the ileo rocks I have to say. It may be old fashioned but it is very much KISS (keep it simple, stupid) technology that keeps on ticking. The paper book is old fashioned but ebooks are not about to make them exitinct them either.

Dude, chill, I put the smiley face in there, we are all good I hope. :) nit that long ago we were fellow fencesitting chicken-sheeters after all. i know you research tons, but you were the one who said those who dont want the latest and greatest technology are dumb. I have the utmost respect and admiration for anyone who goes through IBD or surgeries (of any sort) and dont get me wrong, I am no jpouch trashtalker, my point is it is a *very* personal choice. For me the fashion of what is the latest technology is irrelevant in and of itself as a factor.

As far as my lifstyle, I am in a similar boat as blueheron in that I am often in situations where "letting it go" or going to the bath room simply isnt an option. Though I consider myself laid back, part of my personality is a bit type A in that I like to have total control of my body. Both the bag and kpouch and BCIR are 100% continent - you decide when to go with literally hours and hours of leeway. Even one of my surgical consultants warned me that of the * minority * of his patients who hated their jpouches, they all were people who like to be in total control (eg stockbroker on NYSE floor, TV producer, etc) , and are tending type A, so that made me ponder my own type A tendencies, and since I was forced to do a 3 step anyway, I got to try out the end ileo by default and discovered that I realky liked the total control- and I discovered all my fears about smell, leakages etc were imaginary in my case- even if I did have problems with leaks, skin , bla bla, in the case of the bag you are usually one little appliance technology adjustment away from fixing it- again, that means total control for a control freak (re my body, not people).

Again, this is not to trashtalk jpouches at all, it's just my own analysis of my preferences. I am sure we can agree if we could all be guaranteed outcomes like suebear (who rocks), we'd all have jpouches before even being diagnosed with IBD lol. There is something else everyone needs to keep in mind- going backwards from a jpouch to an end ileo or a BCIR or whatever is very complex surgery, involving excision of the jpouch, and the loss of a lot of small gut length, so it's not like one can just casually try out a jpouch and then switch back without bigger risks- that's why many "failed" jpouchers (who are the minority, to be sure) put up with poor function rather than go through more multiple surgery hell. By contrast a 3 step jpouch allows one to try out an end ileo before proceeding further (while retaining the option) so that turned out to be a blessing in disguise of sorts for me, for now.

Still, all of the choices surrounding surgery and types of surgery are sort of "sheet sandwiches". As you know, resisting surgery and living with IBD is another such sandwich. Regardless of surgery type, very very few who get surgery are not wads happier than they were with their UC, but that's because those kf us who get surgery either had very bad UC or just never really get long, solid remissions, or both.

PS rooting for you to get a break with that new Vancouver study you ate on waiting list for (SSI or whatever it was).

Hey dude, with a bag, nobody can see it other than you and your significant other. So why so worried about "appearing normal"? My husband was a little weirded out for all of about a week, and he quickly got used to it. And my friends who know can't tell. I would happily have stayed with my end ileo if the j-pouch weren't an option, and my life would be perfectly normal. But my surgeon says I am a perfect candidate for the pouch, so I'm going for it. But I can't say my time with a ag has been at all bad - in fact, I've had a more normal life with it than when I was wearing Depends and constantly ducking into bathrooms ....

In the many years I have been on the UC boards; I haven't met too many people who have regretted their surgical decision for UC. The majority of us would say that surgery improved our quality of life, whether that surgery choice be a jpouch, ostomy, k pouch or BCIR.

Sue

ks1905 said...
One thing that I haven't seen mentioned in this discussion (which I think is very relevant for us and is a benefit of surgery) is that we are at very high-risk for Colon Cancer since we have UC. If we have a J-pouch/ostomy then that risk is eliminated.

Both of my grandfathers had colon cancer and I have UC; my colon is going to have to go at some point, probably sooner than later. For that reason I am willing to take a chance on the surgery, whether it is a bag or a J-pouch as the outcome.

very good point. My cousin died from
Colon cancer at 50 (he didn't have UC) and it was horrible to watch him deteriorate.

I'm so different to Pro.

Literally can't stand having a bag. And right now, I'm inconsolably depressed at the thought of being stuck with a disfiguring object on my stomach leaking crap for the next 40 years of my life. To be fair, I'm depressed over over stuff too, but trust me, the realisation that this is forever has hit even harder since yesterday.

I can't offer myself a single, solitary crumb of comfort on this. It's not like there's any research going on out there for people who, for whatever reason, can't have a j-pouch.

Truly, right now, and I mean this, I would not have had surgery. I'm not a happy camper. Crohn's and depression between them both have both ruined my life to a point where it's no longer worth living.

It's difficult to argue my point about the Bag/J pouch.

You mentioned extra surgeries. Well, on average if you know you're going for the pouch it's 2. It can go 3 and really uncommon as 1.

You mentioned chances of failure. True, there are chances, there are chances of failure with the bag also. I can present examples and I am sure you can present examples of j pouches failures also. Heck there must be a ton on J pouch.org.

But why does the surgery for a J pouch exist. Who is supposed to get that. Is it athletes? is it regular folks?

So, if the doc says to me. Sir, you're a perfect candidate for the J pouch. I will say, no doc. I'll take a bag because there's a risk of failure for the pouch. While there are risks for failures with the stoma, I don't like the risks for failures with a pouch. I don't like them...

I dunno if I'm alone thinking this, but THIS WHOLE SITUATION IS RISK OF FAILURE. This disease can end up causing cancer, rare. This disease can cause extra manifestations, this disease can cause other diseases. The stoma can stop working for whatever magic reason. The J pouch can get pouchitis.

So when we say, well...I'm going for the perm bag cause the pouch is risky, they are both risky.

I'll go back on the extra surgeries topic. People want the least amount of surgeries and they use that as a +plus for the bag.

-Only 1 surgery for the bag... that's it. right? well....yes and no.

Then you need corrective surgery for who knows what. so 2 surgeries.
Then you need relocation for god knows what ....so 3 surgeries.

To re-iterate again, this whole situation is a risk, you don't want to risk with a j pouch, that doesn't mean anything in the world of random. You could end up having more issues with a bag than with a pouch. Unlikely? who knows, we got this disease, we beat some unlikely odds.

I will now try to explain the "abnormal" part of the bag. We live in a society that has standards and norms. We determine what is socially considered as normal.

I'll write the example, I wrote before. And this I debated with one of co-workers at work and she agreed, we set our own rules as what is standard-ism. What is normal now, might not be normal in the future or was not normal in the past. I don't need to give examples of that. However I'll give this example that I've repeated throughout.

The difference between hearing aids and glasses. Both are for a deficiency. One is used for the eyes and one for the ears. However, there's one major difference. One is more socially acceptable than the other. You're more likely to not even notice someone with glasses because we're so accustomed to it than someone with hearing aids.

We will stare sometimes if someone has hearing aids wondering if they hear right, why do they need it, why the hearing aids are so big, etc. We don't think those things about people with glasses, it's second nature, it's part of culture as socially accepted as apple pie.

Now, taking a turn and going into IBD. We've mentioned that we shouldn't consider it "abnormal" having a bag. Why not? Having glasses or hearings aids or a asthma pump is not normal. We aren't born this way, yet those things exist to help us with our deficiency. There is but one deficiency soooooo prevalent that it has socially become part of our culture a looooong time ago, which is the eye wear. (well this is the one that comes to mind)

There was this lady at the casino with a BIG oxygen tube. She was playing 2 machines and that big *** canister was sitting there, bigger than her. Some people were glancing, I saw it, made an impact how big it was. That thing was big and on wheels. Is it her fault she needs that? No, she's unlucky, it's very unfortunate. Is it "normal" , no it's not normal.

Now, the bag. I might need a bag, it's true, I might get a perm bag, what can I do. It is what it is. I understand its purposes, I realize my situation, I didn't wake up and said, hmmm, I might get this one day. Do other people who are clueless about this realize this? No. Do they care? No. Is it normal" No. Do I need it? Yes. Do I care what other people think. Well, yes and no.

I care in the sense that I want them to believe that I am just as normal as they are and I also want to know for myself that I am just as normal as they are. A bag will not bring me to that "level". For whatever reason, they invented the J pouch.

The J pouch to me, makes it seem, in my mind, that I am reaching the closest physical looking normal that it is possible at this point in time. I mean, I'm not debating here which has more risks, or what not. Purely superficial.

Now, with all this said, I might end up with a perm or a pouch. Whichever I end up with...will be. The point was, I was striving to reach the pinnacle of socially accepted normal as best as I can.

So when someone who is perfect candidate for a pouch choose with confidence a bag, I short circuit because I may be faced with the decision and I end up confused. lol

that was long.....a little inside in my thoughts.

ks1905 said...

This is acceptance and is part of the necessary mental healing process, denial/rufusal is not part of a good decision making process. I am only making a decision for myself but I used to think like many of the anti-surgery posters here but I found that my disease has forced me to adapt my previous way of thinking over the last 10 years.

Yeah, this is true. You know, had I been able to control this easily with diet or light meds or even if I had a mild case of UC, I'd probably be anti-surgery. I'd be like, w.t.f. guys, I mean "control" it. But reality is not that, and seeing that I struggle, my decisions and outlook changes. However my outlook on that big block of text that I wrote before, probably won't ever change.

What I wrote there is part of my thoughts, maybe tomorrow I'll write the second. lol

@notsosicklygirl - No, the BCIR is ruled out for me too. My only possibility of a reversal is an ileorectal anastomosis (IRA), but even that I probably won't be eligible for. It kills me having to wait until next year.

I hate my stoma. I feel the same way about my stoma as you lot all do about your UC. But the thing is, everyone can moan about how much they hate UC until the cows come home; you lot are all in solidarity with one another. I feel utterly alone in my feelings. I'm resorting to posting about the stoma on other forums, because my feelings are not acceptable on the Ostomy forum. But I genuinely find the stoma to be a hideous, repulsive, smelly (I do shower every day, but it smells disgusting when I take the bag off or empty it), and generally disgusting object. I'm incontinent for the rest of my life.

And what if there is a petrol shortage or international crisis one day and my ostomy supplies can no longer be delivered? I'm utterly dependent on highly specialist supplies for the rest of my life now. Just to be able to go the toilet.

It's as though it's hit home in the last few days that not only is my repulsive stoma with me for life, there is no research for alternatives going on for those who aren't suitable candidates for an internal pouch for whatever. We're left with our disfiguring, incontinent stomas for life.

Literally don't know how to see it in a different light.

Those are my utterly true feelings. You tell me how I go from that to "loving" it. It's not like it's a baby, which is also incontinent, but is also cute and you know is gonna grow up into a cute toddler and, hopefully, one day a decent human being. Women go through the pain of childbirth 'cos they know they're getting something good at the end of it, a newborn baby. Me, I've been through the pain of obstruction (which is apparently as painful as childbirth although I don't know this from personal experience), knowing that nothing good was waiting for me at the other end of it.

Feel a tad similar about the stoma. I've got this 'thing' on my stomach, this thing which requires a ridiculous amount of daily supplies (all that plastic must be dreadful for the environment), just to contain the output and prevent it from eroding your skin literally like acid. And it's not even a pet, or a baby, or a living thing. It's a weird, alien, moist, pulsating object, which was never designed to see the light of day. It feels like such an absurd compromise. I'd still like to know why, for Crohnies, they can't basically make a j-pouch out of artificial materials. It's just a receptacle for crying out loud, why does that need to be made out of living tissue? As long as you've still got control with your anal sphincter muscles.