What a bunch of BS! for IBS

Zizzle · Post by **Zizzle** » Wed Apr 25, 2012 12:57 pm

Check out the "Treatment Matrix" the American College of Gasroenterology just came up with for IBS.

It's sure to keep lining their pockets with desperate, unwell IBS patients!

http://gi.org/acg-institute/ibs-treatment-matrix/

:BSFlag:

Gloria · Post by **Gloria** » Wed Apr 25, 2012 8:35 pm

This list is so annoying, particularly the antidepressants, psychological therapies, and the dismissal of diet.

I was reminded of the ineptness GIs today when I visited a woman whose son has Crohn's disease at age 26. He's getting remicade infusion, taking Imuran, Pentasa, Pepcid AD, Allegra, and I believe, Align. I asked if his doctors recommended any dietary changes. She said the only thing they suggested was a low fiber diet. They told him if he ate a cheeseburger, he should eliminate the lettuce. I mentioned this board and how nearly all of us have eliminated gluten, but it didn't seem to register. I know Crohn's is a very severe disease, needing medications, but wouldn't you think that diet changes would be the first thing to recommend?

Gloria

Deanna in CO · Post by **Deanna in CO** » Wed Apr 25, 2012 10:18 pm

It's strange - on the first page they say that "it is . . . highly treatable," but on the second page where they discuss treatments, very few say they are effective with good quality evidence.

As for diet, they say it's not effective, but what do they mean by diet changes? How do they monitor every bite the patient takes the way we have to monitor ourselves? And how many diet changes do they make - and for how long? We all know eliminating gluten for a couple of weeks or even a couple of months is not going to look like it solves much for most of us. How many of these studies remove ALL of gluten, dairy, eggs, and soy, for at least six months if not longer - with continued monitoring of additional sensitivities?.

I have a feeling their dietary "treatments" turn out to be almost like the allergist's approach to my daughter's headaches from corn allergy when she was 4. He as much as said, "Well, it's not practical to remove all corn from her diet, so give her this antihistamine syrup twice a day and she should be fine." I asked him if there were any side effects, and he admitted it was a sedative. I walked out of his office thinking, "You really want me to dose my 4-year-old with a sedative twice a day for the rest of her life because she's allergic to corn? Wouldn't it be better to take the corn out of her diet?" (It made me eve madder when I realized that almost all syrups are made from corn syrup! So I would have been dosing her with corn twice a day to "treat" her corn allergy!) It wasn't the easiest thing I ever did, but I got the corn out of her diet. The first week she had five headaches; after that she didn't have another headache for months (and she'd been having 4 or 5 headaches a week since before she could talk).

I think the "It's not practical" mentality is a large part of the problem. The doctors don't really seem to grasp how desperate we are, or how terribly restrictive the constant, unpredictable D is. A lot of impractical things become practical when people get desperate - and most of us would admit that the diet IS impractical, but the alternative is worse.

Deanna

Leah · Post by **Leah** » Fri Apr 27, 2012 5:54 pm

No diet changes? It's infuriating!

tnelson · Post by **tnelson** » Fri Jun 01, 2012 4:37 pm

Deanna wrote:I think the "It's not practical" mentality is a large part of the problem. The doctors don't really seem to grasp how desperate we are, or how terribly restrictive the constant, unpredictable D is. A lot of impractical things become practical when people get desperate - and most of us would admit that the diet IS impractical, but the alternative is worse.

Coming late to the conversation, Deanna, but this is VERY true. If you'd told me a few months ago that I would stop eating all but 12 foods, and eat a ton of meat (I was almost completely vegetarian), and HOPE to be able to eat a wide array of food some years from now, I would have thought it highly "impractical." Compared to the awful D, gurgling, gas, and--worst of all--nocturnal D and sleep disruption, this diet is *nothing*.

It is very true that just "changing one's diet," in a vague way, is meaningless. What diet advice was offered? Did patient's follow it? How exact were they in following the diet? For how long? Without meticulous attention to the diet, it will indeed appear not to work.

I agree that the psych stuff and antidepressants are depressing.

--T

JFR · Post by **JFR** » Fri Jun 01, 2012 4:46 pm

tnelson wrote:
Coming late to the conversation, Deanna, but this is VERY true. If you'd told me a few months ago that I would stop eating all but 12 foods, and eat a ton of meat (I was almost completely vegetarian), and HOPE to be able to eat a wide array of food some years from now, I would have thought it highly "impractical." Compared to the awful D, gurgling, gas, and--worst of all--nocturnal D and sleep disruption, this diet is *nothing*.

Changing my diet is the only thing that has given me any relief so who cares how hard it is. I like being able to leave the house even if I have to take food with me. I am eating meat and cooked veggies and some nut butter so my diet is similar to yours and just about as limiting. I find that I don't even care if I can't ever add much back. Maybe that will change but if it doesn't I'll deal with it. It's the constant D that I find hard to deal with.

Jean

tnelson · Post by **tnelson** » Fri Jun 01, 2012 5:06 pm

I totally hear you, Jean. Getting well and staying well is the first priority. Any food, no matter how delicious, pales in comparison. :-)

Gabes-Apg · Post by **Gabes-Apg** » Fri Jun 01, 2012 5:26 pm

I also see it that we are being given a wonderful gift, the gift of being in control of our bodies, our minds.

we research, we listen to our bodies and make informed decisions that suit us! Us as the individual.

to step off the path of the majority, or what is labelled 'normal' is brave, it is totally against tribal nature that is ingrained in humans (those that dont align with the tribe are outcast and ?killed) the comments from family, medical professionals, friends, work colleagues etc is because it is quite likely they are not brave enough to walk their own path.

we put alot of energy, time, transformation into this process, attaining wellness is a great achievement. there might not be a fancy bit of paper or a newspaper story regarding this achievement, but in the world of this forum it is definately an acknowledged milestone.

the gift is yours, yours to hold and create it how you want it to be for you. Enjoy it

desertrat · Post by **desertrat** » Fri Jun 01, 2012 5:30 pm

We are what we eat, said a wise old man
Lord, if that's true, Americans are garbage cans

The medical industry doesn't give a flying fig for diets. Just meds. We are turning into a nation of zombies. God help us all.

Mandy

MBombardier · Post by **MBombardier** » Fri Jun 01, 2012 11:00 pm

We are what we eat, said a wise old man. Lord, if that's true, Americans are garbage cans.

I must confess that I go back and forth between horror and pity when I go shopping and see women around my age walking like they are obviously in pain. Sure, some of them may be injured, but I believe that most of them are suffering with food-related muscle and joint pain. That was me two years ago. I was so stiff and in so much pain that I could not have moved quickly enough in an emergency. Recently i tipped a glass over and caught it before it spilled more than a few drops, impressing a 28yo young man sitting beside me.

I want to run up to these women and jerk the pizza or the ice cream right out of their mouths. i wouldn't really do that, of course.

It's so hard to even convince family and close friends to make an evaluation of what they are eating (right, Zizzle?) I can't imagine trying to evangelize perfect strangers. I would probably end up in jail. But when I am bouncing through the store with a smile on my face and people are twinkling back at me, I want so badly to say to these women in pain, "I was where you are. You can be where I am!"

JFR · Post by **JFR** » Sat Jun 02, 2012 3:56 am

I know a woman (virtually rather than in RL) who was diagnosed with RA a few months ago.. She is clearly struggling both physically with the pain and mentally with the disability this is causing. So far no medication has been successful. She has mentioned that her sister suggested dietary changes. I do not know what kind of dietary changes her sister recommended but this women was clearly really angry with her sister who she seems to believe wasn't taking this seriously enough thinking diet could be the answer. She seems to believe that RA is a serious disease that needs serious meds and diet could not possibly have anything to do about it. I have kept my mouth shut although I have been sorely tempted to say something. She knows nothing about my own physical struggles so I am sure that I would just be dismissed as a crank like her sister. It's sad.

Jean

Zizzle · Post by **Zizzle** » Sat Jun 02, 2012 10:10 pm

I know many people with gluten-associated medical conditions. When they hear about my diet, they sometimes act like they've never heard of eating GF for anything but celiac. I wonder what rock they are living under. I mean, really, when you get a diagnosis, don't you go look it up on the Internet and TRY to find out more?? I give up.

I do agree our diet is rather inconvenient. It's a no brainier for us, because the alternative, a never-ending stomach flu, is so horrible. But maybe someone with RA or similar thinks the symptoms are easier to deal with than diet changes? Who knows why people cling to their comfort, junk food.

JFR · Post by **JFR** » Sun Jun 03, 2012 4:49 am

Zizzle wrote:
I do agree our diet is rather inconvenient. It's a no brainier for us, because the alternative, a never-ending stomach flu, is so horrible. But maybe someone with RA or similar thinks the symptoms are easier to deal with than diet changes? Who knows why people cling to their comfort, junk food.

I also wonder why people cling to comfort foods as if their lives depended on it. For the woman I know with the recent RA diagnosis the problem seems to be more that suggesting a dietary change as a response to her disease seems to strike her as insulting, as if she and her disease are not being taken seriously enough. Serious diseases deserve serious medicines that come in pill form or sometimes injections or infusions administered in doctor's offices. Dietary changes are reserved for those with less serious problems. Somehow our emotional attachments to food often seem to trump our rational minds. If a person has a serious medical problem and there is a possibility that dietary change will help alleviate why not change your diet? Surely it can't hurt as long as you don't resort to something that clearly does not provide adequate caloric and/or nutritional benefits? For so many people this just seems too hard to do. That is sad if it keeps them suffering needlessly.

Jean

Kari · Post by **Kari** » Sun Jun 03, 2012 9:33 am

This "conversation" is very interesting. It seems to me that people on this board are exceptionally resourceful and brave. Taking responsibility for one's own health is brave, since when things go wrong, there is no one to blame but oneself. On the other hand, putting one's health squarely in the hands of so called "professionals" seems to be an easier route to take, because when things go wrong, there is someone else to blame. The puzzling thing is why some people choose the former and some the latter?

In general, I believe that any change from one's normal routine is a bit scary and takes courage. There is a proverb that states this "reluctance" very succinctly: "People don't change until the pain of changing becomes less than the pain of staying in the current situation." Perhaps unhealthy looking people we see in the super markets, loading their carts with "junk" are not in sufficient pain to be willing to assume the responsibility of doing something about it?

All of that said, I feel fortunate to be in the company of all the courageous and resourceful people here

.

Love,
Kari

Post by **tex** » Sun Jun 03, 2012 11:46 am

Kari wrote:There is a proverb that states this "reluctance" very succinctly: "People don't change until the pain of changing becomes less than the pain of staying in the current situation."

That definitely applies to me. I reckon I'm lucky that my symptoms were totally intolerable, or I might still be putting up with them.

Love,
Tex