Wife Needs Answers

In contrast, I know a person who had a 50/50 chance of survival when their colon was about to rupture. about a year and a half after having a jpouch surgery, they are running marathons and will be doing an Ironman (2 mile swim, 120 mile bike, then tack on a marathon). Not all surgeries end up badly and in fact most end up well (94% HAPPY rate).

I'm also not sure why your wife's doctor thought she would be bad candidate for surgery? Mine actually suggested waiting until AFTER I had kids to get a jpouch because there is a risk of infertility.

*I purposely used the gender ID of "they" and my Ironman distances might be slightly off on the swim/bike.

Post Edited (ActiveUCer) : 11/24/2013 12:32:13 PM (GMT-7)

StealthGuardian said...
Medicines may or may not be necessary depending on the situation, but most are generally useless and ineffective. The studies show that by themselves, medicines are only slightly better than placebos. You'll notice that most people are on a combination of meds to keep their symptoms under control, since combined efficacy is better than individual efficacy.

Please don't try to sound scientific by alluding vaguely to "the studies", when you don't operate with even a shred of scientific thought. It offends me.

If you like.

However, much like that time when you retracted your apology in a fit of rage after discovering that the polio virus "only" crippled about 1% of people and not everybody, I shall probably already know it.

Edit: Good god, man (or woman, not actually sure what sex you are). Just do what I do, hit up Pubmed and post some links from there. Honestly, if it's going to take you a massive amount of time, then don't do it: I don't want to waste your time.

L glutimine is working for me I have been flaring for 6 months now with meds and I feel like a turnaround is happening. I can only pray it lasts. I wish you all the best with her situation.. Kudos to you for being an involved and concerned husband!! Don't give up hope I honestly don't think we were born with this disease and there is hope for remission with the right nutrients and mental capacity.

garylouisville said...
To be honest I get sick of people posting "studies" that are out in the fringe instead of mainstream while trying to claim that they are mainstream. There are literally millions of "professionals" so you are bound to find several out there in left field to back up any extreme point of view you want to make. It's kind of just like the bible or the current gridlock in congress. You can take quotes out of the bible and twist them into anything you want and far left liberals find "studies" to back up their points of view, just as far right conservatives find "studies" to back up their points a view. In the end it is all just meaningless gobbledygook.

I love how people resort to using the words fringe and quackery whenever something goes against their set of beliefs on medicine. It's an insult to the scientists and researchers that try to conduct studies ethically, without financial gain. If I had known the poor efficacy rates of biologics instead of listening to my doctor, I would have opted not to take them. This would have saved me a lot of grief and money, my friend.

Your bible analogy is invalid because it's based on historical context, which is subject to various interpretations. There is nothing historical about recording and observing data in scientific experiments.

StealthGuardian said...
Is that an yes or no? Based on some of the ignorance I've encountered in the medical realm, I can't change dogma, not by a long shot. Sadly, I was guilty of this same ignorance until recently. Go through my post history if you want proof.

I need to know right away because the only thing you do is slander my posts, and then resort to personal attacks. I want this to be worth my time.

The posting history only goes back 10 posts. (It does hinder my stalking of people >_>.)

There's no point in giving up one "dogma", only to dive head-first into another dogma. Unfortunately it's as though people have to have something to believe in, so when they become disillusioned with something, they move onto something else they can earnestly believe in instead. They don't learn anything from their former experience; if anything they trust the shiny new promises of a better life with even more credulity than before.

And I don't get it. Alternative health is an area as rife with charlatans and fraudulent cures as any other area of life. Nobody has the answers to IBD; if they did there would in effect be a cure and nobody would be posting desperately in search of answers. There are no answers. That's the answer, my friend.

garylouisville said...
To be honest I get sick of people posting "studies" that are out in the fringe instead of mainstream while trying to present them as mainstream. There are literally millions of "professionals" so you are bound to find several out there in left field to back up any extreme point of view you want to make. It's kind of just like the bible or the current gridlock in congress. You can take quotes out of the bible and twist them into anything you want and far left liberals find "studies" to back up their points of view, just as far right conservatives find "studies" to back up their points a view. In the end it is all just the meaningless gobbledygook of people trying to twist others opinions to their point of view.

This is true.

If you've got a group of scientists in the same field with a 99.9% consensus opinion on something within their field, that still leaves enough wackjobs left over for people on the internet to hail as harbringers of truth and justice.

Unfortunately even the most brilliant people can succumb to bizarre ideas. Look at Linus Pauling and his obsession with Vitamin C as the answer to all ills, for example. Mind, just substitute D for C and you've got pretty much the modern day equivalent.

NiceCupOfTea said...

StealthGuardian said...
Is that an yes or no? Based on some of the ignorance I've encountered in the medical realm, I can't change dogma, not by a long shot. Sadly, I was guilty of this same ignorance until recently. Go through my post history if you want proof.

I need to know right away because the only thing you do is slander my posts, and then resort to personal attacks. I want this to be worth my time.

The posting history only goes back 10 posts. (It does hinder my stalking of people >_>.)

There's no point in giving up one "dogma", only to dive head-first into another dogma. Unfortunately it's as though people have to have something to believe in, so when they become disillusioned with something, they move onto something else they can earnestly believe in instead. They don't learn anything from their former experience; if anything they trust the shiny new promises of a better life with even more credulity than before.

And I don't get it. Alternative health is an area as rife with charlatans and fraudulent cures as any other area of life. Nobody has the answers to IBD; if they did there would in effect be a cure and nobody would be posting desperately in search of answers. There are no answers. That's the answer, my friend.

It is true that alternative health has its charlatans but this is where good science comes in. For starters, the field of dietary science was lacking but we're beginning to gain a clearer picture on the adverse effects of sugars and vegetable oils. Then there's this emerging research on the gut microbiome and the role it plays in autoimmunity. We're seeing a lot of good come out of non-medicinal interventions.

Why is it anathema to work with a practitioner who acknowledges all of these things and bases his treatments on the emerging research?

It's meaningless to get tested for nutritional deficiencies associated with adverse health outcomes?

This discussion is turning out to be futile and it would be worthwhile for both of us to discontinue.

garylouisville said...
The thing is "emerging research" doesn't necessarily mean that it is the truth or the fact. Take butter and coffee for instance. How many times have we been on this teeter tauter? First it's bad for you so quit. The next thing you know it's good for you. Then it's bad. Then it's good. Then it's bad. Then it's good. Well, I guess you got the point. Maybe not.

Gary,

1) The health benefits of saturated fats have been a null hypothesis since the beginning of time. They tried and tried, but never were able to prove the harm of butter or animal fats, despite trying their best to do so and with such pervasive dogma. It was a colossal failure and we're seeing the end result today all over the world with poor health outcomes associated with low fat diets.

One researcher in the Framingham Heart Study (an ongoing cohort study in a Massachuetes ) so was outraged because it exposed the low fat myth.

For more comprehensive information on saturated fats being good for you, please look up the Framingham study or Mediterranean diet. The contrary is turning out to be true with margarine and other transfats or hydrogenated oils.

There is definitive evidence on this now because the American goverment recently instituted a ban on transfats. A little late for the people that already passed on, don't you think?

2) Coffee in it's unadulterated, non-starbucks state is beneficial in moderate quantities, but not recommended for those with bowel issues. I encourage you to look up the studies on this and not come to your own conclusions on it.

Post Edited (StealthGuardian) : 11/24/2013 4:38:43 PM (GMT-7)

You keep on accusing me of coming to my own conclusions and yet I haven't. Take butter and coffee, for example. Nowhere in my post do I comment on my beliefs of either of the two one way or the other. I merely stated that "emerging research" over the years keeps on changing the recommendations. I have an open mind on most things, unlike others here who are set in their opinions and will travel to the ends of the Earth to prove that they are right and refuse to listen to the viewpoints of others, even ignoring numerous studies that form a general accepted consensus on a particular subject if they disagree with that accepted consensus. Suddenly the accepted consensus is all wrong and they would rather listen to the studies of the few to prove their point. Sometimes, in the end, this opinion of the few turns out to be correct but most times it does not. My main gripe is with those that think they know it all and feel that they are never wrong and do their best to try convincing others that their opinion, and only their opinion, is the word of the Lord. For the record, I have absolutely no idea whether butter or coffee are good or bad for you but I do believe caffine, especially in higher amounts, is not good.

I think you have gotten really good advice already, still I would recommend you read as many threads on this forum as possible, because this is very individualistic kind of disorder. Something that worked with me does not mean it will work with your DW. But reading through threads will get you hang of what she should try.

No recommendation is perfect. She has to be proactive in what she plans to do and wants to do. We don't yet have very good picture of her and her case, so connecting dots with personal story is very difficult.

And yes, please take arguments on this board lightly. Nobody is at anyone's throat. We are just very passionate about this and lets say, desperate to get better and stop this non sense with our life, so these arguments are inevitable. Many a times, these do lead you to look for something that you ignored in the past. It certainly has challenged my beliefs.

Finally, welcome to this board. This is a great place and I will be very surprised if you fail to find anything connected to US and not discussed here.
Hope your DW feels better.

woofwoof said...

wifeneedshelp said...
. She is 40 years old and is thinking about surgery.

Don't do it, I've been living with the end results of surgery or a J Pouch since 1988. Although if you don't mind the looks of it, an ileostomy will work better than a J Pouch. If I was her I'd still look for other alternatives. There's a lot more to be found than when I had UC.

J-pouch surgery has come a long way in 25 years, j-pouch failure rates are now 3-5% depending on the surgeon (most of those failures due to Crohns being Dx'd as UC). Many of the best surgeons have now done 500+ surgeries in their careers, operate Laproscopically, offer 1, 2, or 3-step J-pouchs and diagnostic testing has come along way since you had your operation 25 years ago.

I just had my 1st surgery less than a month ago and I only had to stay in the hospital for 5 days and had almost no pain from the surgery. I currently have an ostomy and need 2 more surgeries before my J-pouch is complete.