Why not surgery?

ks1905 said...

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.

That's kinda scary. I wonder how many ways "failure" manifests itself: a rip or tear in the J-Pouch? Infection? Blockage? God, imagine having to run to the ER for something like that.

"I agree with your sentiment, although I am very cynical of people who claim to have "cured" themselves by eating this, avoiding that, supplementing this, etc. I roll my eyes when I hear or read about the SCD or other fad diets with no scientific basis. But hey, if it works (or if someone imagines it to be working), good on them."

so just curious - how is science working for you ?

I do the above, and it's working great - if it makes you feel better to believe it's not, well good on you -

 

beatUC said...
isnt there another forum where these surgery-specific subjects can be discussed with other folks who have had surgery?
I don't mean to be rude, but I thought this was a forum for people who are battling UC but haven't resorted to surgical intervention as of yet.

Why does it bother you? Nobody is forcing you to read or participate in this thread. Additionally, I find this thread entirely relevant to this forum, and people with Crohn's disease have a lot in common with those of us with ulcerative colitis.

Pluot said...
I gotta say that I find Somedude's attitude about what is "normal" really really sad. What if you had a child who needed hearing aids, or oxygen, or a feeding tube, or even just had a congenital deformity? I think part of being a mature adult is recognizing that people who judge or treat others poorly just because they're "different" are foolish and cruel. I would hate to raise a child to believe that the most important thing is to be "normal" and avoid being "looked at."

Also, I hate to break it to you Somedude, but no one can tell that I have a bag except for my boyfriend and my doctor. I wear tight pants, shorts, skirts, crop tops, whatever I want. I go to work, to the gym, to the beach. Even if I'm so "abnormal," the only people who know are my doctors and my family and close friends, and they respect me enough to know that happy and healthy is far preferable to fitting an arbitrary cookie cutter description of "normal."

One thing I've always found STRANGE about this board is that although it's just called "Ulcerative Colitis", most of the time it is more like "Ulcerative Colitis except for surgery". As mentioned above, 20-40% of us WILL have surgery in our lifetimes. One of the big mysteries in epidemiology right now is that even though there are many new UC treatments, the surgery rate has stayed *the same* for the past 10 years instead of declining. Unfortunately surgery as a fact of life for UC patients is here to stay. I think we should discuss it openly on this board instead of acting like it's the bogeyman. I remember crying the day I was diagnosed when I read that surgery statistic, just thinking it would happen to me SOMEDAY, not knowing it would actually be eight months later. I wish I had seen more personal stories of how WELL it can go so I wouldn't have been so scared.

I have never had a problem with the stoma being "gross". My main complaint is just that because I have a loop ileostomy (a kind of temporary ileo), my bag fills up faster and sometimes I have to empty more frequently. Here's a video of me changing my wafer on my first stoma (an end ileostomy -- I've had two different ones because my surgery is in three steps): www.youtube.com/watch?v=26rpN2ECnQE. That was when I had only had the stoma for about three months, so it took me ~10 minutes to do the change. Nowadays I have it down to 3 minutes... I actually did it while chatting on speakerphone with my mom today Maybe others see it differently, but even though I've only had a stoma for six months, when I look at that video it doesn't gross me out or repulse me. That's just my body.

None of the above is directed at anyone, I just want to state how I feel... well except for the stuff directed at Somedude. Sorry dude.

Thanks for the video.

I'm not sure somedude was equating "normal" with "ideal". I understood where he was coming from (I think). I didn't take his comments as in any way denigrating people who for whatever reason(s) have something abnormal about them, whether it be an individual with a stoma or an individual with an IQ of 150.

Somedude said...
It bothers her because of fear. It was a explained if you a read a few posts after her message.

It's true, some don't want to read about stuff that might be in their future.

it's like if you have AIDS and eventually it's possible that your meds stop working and you die and threads would pop up about it...Some don't want to read that crap, they don't even want to see thread titles that even mention that lol.

Everyone is different. hehe.

I guess people like that shouldn't go to funeral preparation or estate planning discussion forums.

If you read my posts in this thread, my point is that in my experience many doctors push UC patients toward surgery when they could have avoided it, like me. Also, the use of the term "cure" when referring to surgery is just plain wrong. As I've said over and over, for those who had no choice and had surgery, I am glad that they have found relief, but to those who are feeling pressured to have surgery, time may prove that surgery was a bad decision -like me!
My fears of surgery are well founded due to an unfortunate death of a family member after having his colon removed.
I'm not sure how you can twist all that into irrational fear.

beatUC said...
If you read my posts in this thread, my point is that in my experience many doctors push UC patients toward surgery when they could have avoided it, like me. Also, the use of the term "cure" when referring to surgery is just plain wrong. As I've said over and over, for those who had no choice and had surgery, I am glad that they have found relief, but to those who are feeling pressured to have surgery, time may prove that surgery was a bad decision -like me!
My fears of surgery are well founded due to an unfortunate death of a family member after having his colon removed.
I'm not sure how you can twist all that into irrational fear.

I am sure we are all very sympathetic towards your position, and even agree with you to various degrees. But your whining about these threads is something I think few of us have sympathy for. Again, nobody is forcing you to be here. Additionally, this thread is quite balanced with many intelligent and experienced people candidly sharing their experiences and perspectives.

I found this thread very interesting, as well as difficult at times to read. Maybe I'm just emotional today.

soystud said...
making fun of me - what exactly is the point in that ?

Look, we don't need to go back and forth on this. I'm simply stating my point of view that people who espouse dietary cures for UC and/or CD are either a) lying snake oil salespersons or b) deluded, naive, or ignorant. End of story.

"Look, we don't need to go back and forth on this. I'm simply stating my point of view that people who espouse dietary cures for UC and/or CD are either a) lying snake oil salespersons or b) deluded, naive, or ignorant. End of story."

so do you work at being a dick, or does it just come naturally ?

just my point of view -

Out of the people who are mainly using diet to treat UC, soystud seems to be one of the less "zealot-ish" types, IMO. Sure, he tells people what works for him, but I do too. And I've never seen him put down those of us who use meds. I think it's good to have people treating their UC different ways on here, so that newbies can read, learn, and decide what they'd like to try. I used to be fairly skeptical of diet modification as a UC treatment, but there are enough people on here who are successful with it that I think it's a viable option.

fruitgirl said...
Out of the people who are mainly using diet to treat UC, soystud seems to be one of the less "zealot-ish" types, IMO. Sure, he tells people what works for him, but I do too. And I've never seen him put down those of us who use meds. I think it's good to have people treating their UC different ways on here, so that newbies can read, learn, and decide what they'd like to try. I used to be fairly skeptical of diet modification as a UC treatment, but there are enough people on here who are successful with it that I think it's a viable option.

I disagree. I also think soystud's earlier response to me was mocking conventional treatments, while metaphorically standing on the nonsensical "diet cures all" pedestal.

In my view it's all Dr. Ho style nonsense. It's quackery.

"I agree with your sentiment, although I am very cynical of people who claim to have "cured" themselves by eating this, avoiding that, supplementing this, etc. I roll my eyes when I hear or read about the SCD or other fad diets with no scientific basis. But hey, if it works (or if someone imagines it to be working), good on them."

What do you think medicine is made of - Pixie dust? Your body is still ingesting a substance. Why is diet-elimination so terrible? Who wouldn't try anything that might work? There are so many people on this forum that have real success from different products/food that provide alternatives and hope for so many. After reading on here people who stick crap up their bum and claim to be cured, I'm not above trying anything nor would I even suggest that they are wrong to say they aren't cured if they feel they are.