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Posted 7/20/2013 1:42 AM (GMT 0)
so what are GREAT argument against the knife pluot ?



"Hey that's cool that you wouldn't want a j pouch or a bag. "

well, as the dude has pointed out before, nobody WANTS an f-ing bag !

and you understand that you are on the extreme end of the scale - not many CHOOSE the bag in that short of time -

and that really is at the heart of my point - it's not a docs decision - he only gives his opinion one way or the other, good or bad -
Posted 7/20/2013 1:46 AM (GMT 0)
the question is being answered - how is that hijacking ?
Posted 7/20/2013 1:48 AM (GMT 0)
ByeBye, there can be arguments for any topic on anything. Who cares how we individually fix it? Everyone cares.

Some people mention that a choice cannot be questioned. Yes it can, by anyone. true story.

A dude at work bought a 40,000$ SUV. I told him, what the **** is wrong with you. Now...fast forward 2 years, he had to sell back to the dealer, he couldnt make the payments and now, he doesnt have a car, and owes 8,000$ to the dealer and keeps paying it. So no car and 8,000$ debt. Frogot to mention, the guy is a cleaner and makes maybe 12$ per hour.

He told me it was the dumbest decision he made.

We are humans, we will argue just about anything that can be argued. heh
Posted 7/20/2013 2:10 AM (GMT 0)
humans argue - it's our nature and our right - arguing is learning - how many times have you heard someone say in the midst of a discussion/argument, "huh, I never thought of that"

and the op asked the question "why not?"
Posted 7/20/2013 2:18 AM (GMT 0)

soystud said...
so what are GREAT argument against the knife pluot ?

Some people are not good surgical candidates. If you have a lot of comorbidities that could interfere with healing or even surviving the surgery, medical management might be better. Obviously there are a lot of reasons why people in specific situations should opt for a perm ileo instead of a j-pouch (and some valid reasons in the other direction too). Some people want surgery, and even GET it, because they don't want to take daily meds, even something as benign as mesalamine. I think that's a bad choice and I would argue against it, even though most of the time I am pro surgery. Those are some decent arguments. But I don't think there is any argument that is one size fits all against surgery. For a certain population it is the right move.

This is an argument we've had several times on the Ostomies board... "NOBODY wants a bag" -- nobody wants to be sick, but GIVEN that you are sick, yeah, some people want their darn bag. I didn't know if I was a candidate for a j-pouch until after my first surgery. I knew this and elected surgery -- it was not emergency. I had a choice. My life with my ostomy is UNDENIABLY better than my life was living with a UC flare. No contest.

If a cure for UC comes along in the next few years (and I think the odds of that are slimmer than nil), I'll be bummed that it didn't happen sooner, but I won't regret getting surgery. I *might* have survived and kept my colon for longer, but it would not be worth enduring the suffering I did. You should also keep in mind that the vast majority of well constructed j-pouches that fail do so because of a "UC-like" condition -- pouchitis, cuffitis, or fistulae. I'm in the camp that strongly believes that surgery is NOT a cure, and that many of the post-operative issues are related to the fact that we *still* have an autoimmune disorder, so if a cure comes along, it would help everyone, surgery or no. But this is highly speculative... I doubt we'll see a cure anytime soon.
Posted 7/20/2013 2:34 AM (GMT 0)
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.
Posted 7/20/2013 2:37 AM (GMT 0)
I don't think it's true that nobody wants a bag. Have you seen summerstorm? She's way more positive and confident than I am and she has an ileo. She also wouldn't trade it for a UC riddled colon. I think the bottom line is that the reason not to have surgery is fear and potential complications. There are many reasons to take the risk but the outcome still lies in your individual circumstances and no one can guarantee anything with surgery. All you can do is hope you're not one of the unlucky ones. I would do a lot of research, talk to people who have been through the surgery (in person or on the phone if possible) and meet multiple surgeons. If my option was to stay home because I am too scared to leave the house due to possible accidents or have a bag, I think i'd take a bag and trust me, I am not keen on the idea of buying supplies and integrating all of that into my life but it's way better than watching life pass you by. The thing that scares me is that there are people with bags who have problems like constant output and inability to get good sleep due to high output. There are people who can't eat solid food on the ostomy forum, granted that's a worst case scenario - if it happened to someone, it could be me! You never know. Christine, who used to post here, got a perm ileo a few years ago and she's never turned back. She doesn't have any problems. I think that's probably the norm.
Posted 7/20/2013 2:41 AM (GMT 0)

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.

I'm a keep on chasing with drool dripping lol



smilewinkgrin
Posted 7/20/2013 2:43 AM (GMT 0)

notsosicklygirl said...
I don't think it's true that nobody wants a bag. Have you seen summerstorm? She's way more positive and confident than I am and she has an ileo. She also wouldn't trade it for a UC riddled colon. I think the bottom line is that the reason not to have surgery is fear and potential complications. There are many reasons to take the risk but the outcome still lies in your individual circumstances and no one can guarantee anything with surgery. All you can do is hope you're not one of the unlucky ones. I would do a lot of research, talk to people who have been through the surgery (in person or on the phone if possible) and meet multiple surgeons. If my option was to stay home because I am too scared to leave the house due to possible accidents or have a bag, I think i'd take a bag and trust me, I am not keen on the idea of buying supplies and integrating all of that into my life but it's way better than watching life pass you by. The thing that scares me is that there are people with bags who have problems like constant output and inability to get good sleep due to high output. There are people who can't eat solid food on the ostomy forum, granted that's a worst case scenario - if it happened to someone, it could be me! You never know. Christine, who used to post here, got a perm ileo a few years ago and she's never turned back. She doesn't have any problems. I think that's probably the norm.

I always like your posts. You think the way I think. Good for you. You are on the path of righteousness and enlightenment. lol
Posted 7/20/2013 12:59 PM (GMT 0)
soystud - You ask rhetorically how long a bag is for. With UC, a few months. Biting my tongue here. If you're implying a bag is for life with UC, that's disingenuous to say the least. But you read these forums: I'm sure you know better.

Now Crohn's on the other hand, that usually does lead to a permanent stoma if you have to have a colectomy because of it. I should ****ing know, I'm living the bag-wearing dream right now.

With regards to the original question, GIs are nearly always conservative about surgery. Discuss surgical options with a colorectal surgeon, not a GI. If the colorectal surgeon is cautious, that would make me have second thoughts more than if a GI was cautious.

I'm gonna end this post with one positive thought about surgery. I did not, and still do not, like having a bag: I don't like the dependency on specialist supplies (what if there's a petrol crisis, or something, and supplies cannot be delivered?), the fear of leaks, and so on - it leaves me feeling vulnerable and, ironically enough, always as though I have to be near a bathroom when I'm out. Believe me, if I can get a reversal next year I'm getting a reversal - but that depends on having a disease-free rectum, the Crohn's not having returned in the small bowel, etc.

Yeah, the positive bit: I almost forgot about that <_<. Basically, I didn't realise until recently just how ill I really was before surgery. I was keeping going on high doses of steroids for much of the time, and at the time I thought I felt okay on them, but I didn't. I was ill, even on 40mg Pred. So removing your colon will probably make you feel healthier once you have got over the surgery.
Posted 7/20/2013 1:51 PM (GMT 0)
good point about the docs - we just saw our gi yesterday regarding my sons gtube site - he thinks it's a problem but wants us to see the surgeon - which initially struck me as odd, but I guess that's just what they do ? in my mind, the gi says, "cut that thing open" and the surgeon says "ok" -

glad things continue to improve for you -
Posted 7/20/2013 9:58 PM (GMT 0)
gtube = gastro tube?

Regardless, I hope it's nothing serious and your son will be okay.

Thanks. So do I :p
Posted 7/21/2013 2:41 AM (GMT 0)
I'm positive and confident, yay! Thanks notsosickly that was very nice of you to say.
I am positive about this and I do like having a bag, because I didn't like wasting my life.
There are people with complications and people who can't eat certain foods. But on the flip side, there are lots of people on the UC and Crohns boards who have cut almost everything out of their diet chasing a remission. And if it does work, they spend the rest of their lives not eating sugar or wheat or meat or whatever they cut out.
I didn't try any diets, because that to me was giving way too much up. I didn't want to do that forever, I just wanted it over with. Which is why i chose a bag and not a jpouch. Why I WANTED a bag. Now when I was 5 and they asked me what I wanted to be when I grew up, I didn't answer bag lady, I also didn't answer sick and on 5 different meds and stuck at home too sick to do anything. So given the 2 a bag seems like a pretty good choice.
As for why not surgery? I don't know, I wish I had done it right away. I see a lot of posts here where people are so sick and doing so many things to try to get a remission, sometimes because they don't want to "give up" and have surgery and it really makes me sad. I think some people just don't want to risk the physical complications of surgery and I understand that, it makes sense. But it seems like some people are just worried that they will be giving up and not fighting like they should. It's not giving up, it's not the easy way out. Trust me, there's nothing easy about it.
Honestly I don't care how people get there I just want all of us to be UC free and happy. If that means taking 5 meds and eating spinach all day then I'm happy for you. If that means accupuncture, then I'm happy for you, no matter how you manage it if it's working for you and it's not hurting anyone else and you feel like your life is full then yay!
Posted 7/21/2013 2:44 AM (GMT 0)
Good evening all....brand new poster here....with loads of questions... 52 yr old female

Was diagnosed with UC last July...have been hospitalized 3 times and have been on and off prednisone...well more on than off.
Took Mezavant...did not seem to be doing anything to help me...took salofalk enema nightly...did not help

Am presently on 100 mg Imuran, Remicaide and am tapering off Prednisone once again (now sitting at 25 mg)

This week went for consult with surgeon who said that she does not see any of this getting better.... :( and that I should consider surgery...sadly I am not a candidate for the JPouch and my anal muscle is ripped. So this means a stoma.

I am afraid. I am nervous. I fear the unknown. I feel like I am giving up before I try.

I read the postings and you all seem so very aware...I feel like I have so much to learn still.

I would love to communicate with someone that can offer some advice....some knowledge....some experience.

I thank you all for reading my post!
Posted 7/21/2013 3:09 AM (GMT 0)
You might want to start a post on the ostomy board to get some input over there, or you can send me an email if you want. Just let me know on the board that you did, because I always forget to check my email. I will tell you whatever I can.
Posted 7/21/2013 1:02 PM (GMT 0)
Zzzz this topic is like groundhog day : )
Posted 7/21/2013 1:23 PM (GMT 0)
Beat, find the cure for this disease and the madness will stop. lol
Posted 7/21/2013 1:47 PM (GMT 0)

Pluot said...

You should also keep in mind that the vast majority of well constructed j-pouches that fail do so because of a "UC-like" condition -- pouchitis, cuffitis, or fistulae. I'm in the camp that strongly believes that surgery is NOT a cure, and that many of the post-operative issues are related to the fact that we *still* have an autoimmune disorder, so if a cure comes along, it would help everyone, surgery or no. But this is highly speculative... I doubt we'll see a cure anytime soon.

Pluot,

I always enjoy reading your posts on the subject of surgery, they are always well thought out and especially this last post were you are discussing both sides of the surgery discussion. Thank you.

Question for you: I was at my GI last week and we briefly discussed J-pouch surgery, he again said there was about a 10% failure rate (I wish I followed up his answer with this question but the UC was kicking my butt that day and I was having a hard time concentrating), I am thinking that statistic is for all the J-pouches that were ever preformed (starting back in the 1980s). I know that J-pouch surgery has come a very long way since they first started performing J-pouches so I'm thinking the 10% number is on the high side. I had a meeting with a surgeon while I was in the hospital 6 years ago, I think he said his failure rate was about 1.5% but I don't know if that was all his surgeries, or within the first year or the first 5 years, etc..., I was in the hospital and on lots of drugs so it wasn't the most ideal place to meet a surgeon for the first time and I wished that I followed up his statement with the questions that I am asking you. For someone having surgery this year what is the life-expectancy of the J-pouch and what is the expected failure rate of the pouch (who was properly dx'd with UC, is not found to be CD later)?

I see that you have your last surgery coming up in 10 days and I just wanted wish you well on your last surgery and your J-pouch.
Posted 7/21/2013 1:49 PM (GMT 0)

beatUC said...
Zzzz this topic is like groundhog day : )

Another quality reply about Surgery by you. Thanks.

Did you want to clarify your comments in your post in another thread about surgery? www.healingwell.com/community/default.aspx?f=38&m=2789625&p=2 I know that most people who followed up to your post disagreed with your statement.

Post Edited (ks1905) : 7/21/2013 8:06:12 AM (GMT-6)

Posted 7/21/2013 1:58 PM (GMT 0)

Pluot said...


If a cure for UC comes along in the next few years (and I think the odds of that are slimmer than nil), I'll be bummed that it didn't happen sooner, but I won't regret getting surgery. I *might* have survived and kept my colon for longer, but it would not be worth enduring the suffering I did. You should also keep in mind that the vast majority of well constructed j-pouches that fail do so because of a "UC-like" condition -- pouchitis, cuffitis, or fistulae. I'm in the camp that strongly believes that surgery is NOT a cure, and that many of the post-operative issues are related to the fact that we *still* have an autoimmune disorder, so if a cure comes along, it would help everyone, surgery or no. But this is highly speculative... I doubt we'll see a cure anytime soon.

They are building new human organs in labs out of our own cells; this will prevent organ rejections and the need to take all of those nasty anti-rejection medications. Right now they are building the simpler organs like bladders, kidneys, ears (I don't know if you consider that an organ) and skin but I suspect someday they will be able to build a more complex organ like a colon. www.wakehealth.edu/News-Releases/2006/Wake_Forest_Physician_Reports_First_Human_Recipients_of_Laboratory-Grown_Organs.htm

They would still have to cure UC to make it worthwhile to have the colon transplant otherwise I'd suspect that most UC cases would return to the colon in just a matter of time.

So if I end up with a bag then maybe one day I can get it reversed with a full-functioning colon.
Posted 7/21/2013 3:02 PM (GMT 0)
KS, there was just a Cleveland Clinic study released (Liz posted the link on the Ostomy board last week) and I believe the failure rate is around 5%.
Posted 7/21/2013 3:08 PM (GMT 0)
Edith, welcome. Definitely come over to the Ostomy board - you'll find lots of people there who have been through the same thing. I am having reversal surgery this week, but I can tell you tht living with the stoma is not bad at all. It quickly becomes routine, and it doesn't prevent you from doing anything you want. I just spent a week at the beach, we have folks who run and bike, Suebear is an avid hiker. You can have a full and active life with an Ostomy. You should definitely check out some of the blogs out there (a Google search for Ostomy blogs will bring up tons) and search for a a local Ostomy support group - they can usually connect you with people similar to you to talk to. Good luck.
Posted 7/21/2013 3:43 PM (GMT 0)
What does failure rate mean? Does it mean solely that the patient continued having UC problems after surgery, such as maybe it was actually Crohns instead of UC?
Posted 7/21/2013 3:47 PM (GMT 0)

beatUC said...
Zzzz this topic is like groundhog day : )

Then get off the thread and stop reading it! Obviously it's of no interest to you but is to many other people.
Posted 7/21/2013 3:47 PM (GMT 0)

PSUDOC said...
KS, there was just a Cleveland Clinic study released (Liz posted the link on the Ostomy board last week) and I believe the failure rate is around 5%.

Thank you, I found that study that Liz posted. It seems better than I expected, very successful for patients who truly have UC and not mis-diagnosed CD.

www.ncbi.nlm.nih.gov/pmc/articles/PMC1360119/

"The Cleveland Clinic series presented today suggested an overall failure rate over this 20-year period of about 4%, although they stratified the failures by time during the overall study period. In the 1980s the failure rate was around 15%. In the 1990s it dropped down to about 4%. In the last 5 years it has been approximately 2%. Again, the main contributor to failure was Crohn’s disease or suspected Crohn’s-related complications."

"It is interesting in reviewing all of these series that the major causes of failure were associated either directly with Crohn’s disease or with suspected Crohn’s-associated complications, including fistulas, perianal sepsis, sinus tracts, etc. My own experience of over 660 of these operations confirms that as well. The failure rate has been about 2%, and virtually all those patients who failed had either proven Crohn’s or strongly suspected Crohn’s-associated problems. "

With statistics like this it seems a very viable treatment for UC, surgery may not be the outcome that everyone wants but with an accurate UC diagnosis and a very good surgeon then it is very likely that the J-pouch will be successful.

Post Edited (ks1905) : 7/21/2013 9:51:06 AM (GMT-6)

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