Are diet changes really worth it?

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Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 419
   Posted 12/19/2012 7:18 AM (GMT -6)   
So many people on here have made drastic changes in terms of their diet. The question remains: is it really worth it?

I have a love for nachos and cheese, french fries, pizza and all other things that are completely not healthy for you.

The way I see it; I'm already on Humira, Imuran and Prednisone. If I'm taking so many drugs already, would it even make a difference to make such drastic diet changes? For the record, I don't eat junk food all that much but some of you have completely removed it from your diets. I also read that many of you don't eat wheat or diary.

Any comments would be appreciated. ALSO, if you think a diet change would be beneficial could you please help my suggesting how about making the change. I know eating well is good for everyone but it's been a struggle for me.
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Ectocort Retention Enema, Sulphasalazine(oral), Salofalk (supp.), Pentasa (supp.), Pantoloc, Betnesol Retention Enema
Current Drugs: Prednisone, Imuran, Humira

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 12/19/2012 7:35 AM (GMT -6)   
For some, yes, I think diet changes can make a difference. But I don't think it makes a difference for everyone. I personally haven't had to make any diet changes and control my UC quite easily with mesalamine. I realize I'm quite lucky.

The only way you'll know if it'll help you is to try.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 12/19/2012 7:41 AM (GMT -6)   
Diet is highly personalized. You really have to see how diet relates to your particular condition. Some have gone into or stayed in remission by using strict diets. Many have gone on strict diets and it hasn't helped them one eyota. What happens to you when you eat nachos and cheese, french fries, pizza? The first place to start is to eliminate any foods which you know cause you a problem. A word of caution though, make sure you are absolutely positive you are right. Several times I have eaten a food that caused me major problems and then the next day eaten the very same food and wound up having a better day than normal. Sometimes it is a cumulative effect and not the result of one particular food.

After you have done this you can try eliminating one category of foods like dairy, gluten, or try a particular diet and see how it effects you. Stay on it for about a month and if you see absolutely no improvement then it is time to move onto something different. In the beginning my doctor put me on a lactose free diet for about two months before I finally figured out that I don't have a problem with lactose at all so it wound up being a waste of time and huge inconvenience. I would only stay on the diet if you actually see some improvement and then you can continue and hopefully you will see more improvement.

I have discovered that I am histamine intolerant. Certain foods like aged cheeses, pizza, alcohols, bananas, yeasts, etc are high in histamines and after taking the digestive enzyme DAO, which breaks down histamines, I can now eat certain problem foods with absolutely no problem. My best advice is to discover things on your own and not go in with the mindset that a particular diet is going to help you because in most cases, I don't think there is any particular diet that is a UC diet. You may discover that some parts of a particular diet help you but other parts of that very same diet make you worse.
 
 
Asacol 400mgs 2 pillsX4; VSL#3 112.5mgs 1 pillX4; Vitamin D3 5000 ius 1 pillX2; Thorne SF722 5pillsX3; garlicin 1 pill X 2; B6 1/day; Swanson DAO with meals

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm, DGL, Monolaurin

Post Edited (garylouisville) : 12/19/2012 6:45:00 AM (GMT-7)


Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 419
   Posted 12/19/2012 7:43 AM (GMT -6)   
THANK YOU FOR YOUR REPLIES.

See, the only reason I would ever make diet changes, would be to get onto safer meds. The meds I'm on right now are quite strong. However, my GI has stressed that I really do need them to control my UC. We have exhausted all other options in terms of drugs. Just from the way she's (my GI) been talking to me it seems like I'm going to be on these meds whether or not I change my diet. I think this is what's holding me back.

As for what happens when I eat junk food. Well, I have some pain (very tolerable), more than usual BMs and not very formed but after I'm all done with my BMs I'm good to go. Everything goes back to normal.
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Ectocort Retention Enema, Sulphasalazine(oral), Salofalk (supp.), Pentasa (supp.), Pantoloc, Betnesol Retention Enema
Current Drugs: Prednisone, Imuran, Humira

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/19/2012 7:47 AM (GMT -6)   
Well, there's more to health than whether your UC is active or not. Some of The foods you crave are terrible, absolutely terrible, for general health and predispose to all sorts of other nasty health conditions such as diabetes and various cancers... so that's something to consider. This is not of course very true if you're treating yourself to junk food now and then as opposed to it being a regular staple. As for foods' affect on UC, well, I am the opposite of fruitgirl in that I dont respond to or even tolerate without serious side effects, the drugs for IBD so I have no choice... But if those drugs helped me, I'd still prefer to avoid some of them if possible- in particular the cancer predisposing ones like immune modulators and biologics, and to minimize and if possible avoid pred use, for which I find diet is very helpful.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 12/19/2012 7:50 AM (GMT -6)   
I would definetly eliminate problem foods altogether and then try making some diet changes, one by one, and see what happens. It is very possible that diet can help you enough to get on safer drugs, but, there are no guarnatees. Have you ever tried natural treatments or probiotics like VSL? Many of them have proven info on them in relation to UC. They are not just all money making gimmicks. Unfortunately, there are no guarnatees with them either. Some have put people into remission and the very same thing may not do a thing in others.
Asacol 400mgs 2 pillsX4; VSL#3 112.5mgs 1 pillX4; Vitamin D3 5000 ius 1 pillX2; Thorne SF722 5pillsX3; garlicin 1 pill X 2; B6 1/day; Swanson DAO with meals

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm, DGL, Monolaurin

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 419
   Posted 12/19/2012 7:50 AM (GMT -6)   
I've read so much on this forum about VSL. How do I get a hold of it? I can't find it over here in Canada. Are you guys ordering online?


-----


"...and if possible avoid pred use, for which I find diet is very helpful."

That's very interesting. I've a ridiculously hard time getting off of Prednisone. Anything in particular you were eating that helped you avoid?

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 12/19/2012 7:53 AM (GMT -6)   
http://shop.vsl3.com/vsl3-c2.aspx
Asacol 400mgs 2 pillsX4; VSL#3 112.5mgs 1 pillX4; Vitamin D3 5000 ius 1 pillX2; Thorne SF722 5pillsX3; garlicin 1 pill X 2; B6 1/day; Swanson DAO with meals

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm, DGL, Monolaurin

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 12/19/2012 7:55 AM (GMT -6)   
Unfortunately, yes, diet does matter as much as we don't want it to. I would love for my daughter to be able to eat anything she wants like all of her friends but if she does she will lose her colon (which she might anyway). Whether diet modification will take you to remission (med free or not) is another story unfortunately.

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 419
   Posted 12/19/2012 8:01 AM (GMT -6)   
@ garylouisville - thanks!
@ killcolitis - the harsh reality :( you gave it to me cold. would you mind sharing what dietary changes your daughter has made?
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Ectocort Retention Enema, Sulphasalazine(oral), Salofalk (supp.), Pentasa (supp.), Pantoloc, Betnesol Retention Enema
Current Drugs: Prednisone, Imuran, Humira

handfulofrain
Regular Member


Date Joined Sep 2012
Total Posts : 269
   Posted 12/19/2012 8:07 AM (GMT -6)   
@ garylouisville - i'm also in canada & have been wanting to order VSL #3, but all of the available options on the website say "U.S. orders only"?
Asacol - 4x 800mg every morning
Prednisone - started at 40 mg in mid-September 2012, currently at 5mg & tapering down!

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 12/19/2012 8:14 AM (GMT -6)   
We've tried everything from scd to gluten/sugar/dairy/fruit free to chinese medicine diet. She's currently low carb paleo. It helps her the most - the extent of which remains to be seen.
Handfulofrain, VSL is available in Canada - we just bought some the other day. There is a Canadian site I think.

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1989
   Posted 12/19/2012 8:53 AM (GMT -6)   
Braggarvation, look up the SCD diet, or Paleo, or anti-candida, all of which exclude grains, sugars and artificial or processed foods, which are problematic to the human body over time. If you find yourself overwhelmed by these diets, don't worry, just start slow, by eliminating a few things at a time, sugars are #1 for inflammation, then so on... :)
Diagnosed Crohns-Colitis Sept 2011
Gluten Free, VSL#3, InflaGuard, Zyflamend, Asacol
Metametrix Labs stool testing reveal yeast overgrowth/parasite
Two Month Protocol: Candida Control Diet, Phytostan, ParaGuard, ADP

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7961
   Posted 12/19/2012 9:03 AM (GMT -6)   
^^^^^^^^^^^^^
agree 147%
 
 
i think it's even more important when you're on the robo-drugs -
 
just eat good, healthy, simple, clean foods -
 
if it comes in a can, jar, or box, there's a very good chance it's pretty much crap to your body - there are exceptions of course (i eat canned sardines), but the closer you get to the original source, the better -
 
fruit, veggies, fish, meat - simple
 
i'm not saying those are the ONLY things you can or should eat - but they should be the main part of your diet -
 
oh, and plenty of clean water, exercise, and people - i find that since i've gotten rid of all my symptoms, i can get back to being "normal" again - i've spent too many years shut up in the house, afraid to get 100' from the crapper -
 
 

Post Edited (soystud) : 12/19/2012 8:25:42 AM (GMT-7)


HopingForRelief
New Member


Date Joined Sep 2012
Total Posts : 18
   Posted 12/19/2012 9:06 AM (GMT -6)   
I hated having to give up dairy...soy cheese just isn't the same on a sandwich lol. But I'd much rather give it up then suffer. I've cut out most of the sugar from my diet as well...except for a lil that I add to my tea. Also had to eliminate all soft drinks. it pretty much depends on the person...some people can tolerate what others cannot.
~*Diagnosed with UC 08/01/2011 after a year of suffering with no explanation*~
~*Diagnosed with Diverticulosis on 08/01/2011*~
currently taking Ultra Flora Plus DF Probiotics 1x daily ; Ranitidine 75mg 1x daily ; Levsin 0.125mg (as needed) ; Lomotil 2.5mg (as needed) ; and Glutagenics Powder 1 scoop 1x daily (L-Glutamine Supplement w/Aloe for gastrointestinal lining support)

beatUC
Veteran Member


Date Joined Mar 2010
Total Posts : 1390
   Posted 12/19/2012 10:51 AM (GMT -6)   
Of course diet changes are worth it.
You may not have immediate results on your UC, but eating better leads to a healthier body which can withstand the ravages of UC much better.
I have had to give up so many foods that I liked, but I'd be in much worse shape if I hadn't.
Imuran
Asacol
Rowasa
prednisone as needed

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 12/19/2012 10:51 AM (GMT -6)   
Baggravation, I would never have believed a dietary change would be meaningful to me until I tried a big one. Sure, I had eliminated lactose before, and even did a low residue diet when I felt the sickest, but the kind of dietary change that really made a difference for me was going gluten free.

I only decided to try it when I was frustrated that I could not eliminate the last parts of my last flare on the mesalamines that I was taking. My GI stubbornly insisted that the problems I was having were not inflammatory and would not merit ramping up the meds to the next level. My rheumy was pushing me to do something to improve my quality of life. After thinking about it for a long time (maybe a year altogether) I decided to trial a gluten free diet.

Within the two week window that I gave myself for this trial the results were completely clear: I was gluten intolerant. I had already been tested for celiac and found negative, so this was pretty much a surprise to me. My GI was very supportive and pleased that I made this change.

The question you might want to ask yourself is a "what if." What if you made a simple change like this one, eliminating gluten, and you went into a remission and could drop your riskiest meds?

I find it is not hard to stay gluten free because the problems I have when I do eat gluten, whether by accident or intentially, are really obvious and awful. It is easy to be motivated to stay away from gluten when I can recall how I felt before.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7961
   Posted 12/19/2012 10:56 AM (GMT -6)   
soy cheese - BLECH ! does anybody actually eat that stuff - i think that's what they should feed death row inmates -
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin,vit D, ALA, DHEA, a smorgassbord of probiotics, & Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, & Dairy - limited Sugar -
No Meds - Just good, healthy food -
Lots of H2O, exercise & sleep as much as possible & enjoy this great life that God has blessed me with -

Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5473
   Posted 12/19/2012 11:38 AM (GMT -6)   
when i'm on heavy duty meds, i can eat whatever i want with no consequences. it's actually quite nice. i mean, i'll always be a healthy eater, but i can splurge on something and it won't hurt me like during a UC flare.

i have found that during flares, diet changes don't make a drastic difference in how i'm feeling. that just tells me that food doesn't affect my UC as much as i had thought.
Joanna, 23
Currently: 4-8 loose bms a day, urgent/bleeding.
vit D, kefir, cod liver oil, astaxanthin, magnesium,
b12 shots, spatone iron, vit C, colostrum
Tried: canasa, rowasa, entocort, pred, 6mp, remicade,
lialda, welchol, bentyl, LDN, cipro, flagyl, VSL/Vit E enema,
8 FT, clay, aloe vera, slippery elm
diet: paleo/scd

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/19/2012 11:46 AM (GMT -6)   
Since you are in Canada you can get a powerful, well documented probiotic for IBD not available for import in the US ... Mutaflor. Worth trying too (I recommend whatever combo of VSL3 and mutaflor tht is affordable).
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7961
   Posted 12/19/2012 11:48 AM (GMT -6)   
so what puts you on heavy duty meds ? what you've been eating ?
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin,vit D, ALA, DHEA, a smorgassbord of probiotics, & Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, & Dairy - limited Sugar -
No Meds - Just good, healthy food -
Lots of H2O, exercise & sleep as much as possible & enjoy this great life that God has blessed me with -

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10527
   Posted 12/19/2012 11:49 AM (GMT -6)   
I'm not on the diet or supplement bandwagon and you cannot convince me otherwise as it has seemingly no affect on my uc whatsoever. I don't like bland and uninteresting foods, nor do I want to be condemned to a life of eating them, just to please the beast that is uc. Sure try to eat healthy and exercise; as that's true for anybody. But don't give up the foods you love. I eat what I want without worry. The worst that happens is you have an extra bm the next day, and it is totally worth it to have pizza, a mild chili, or whatever it is that you love.
34; Daily 2-3 formed bms w/ little to no urgency
Rx: Daily 4x Lialda and 1x Rowasa w/ no supplements or diet mods.
Dx: 2-2012 ulcerative proctosigmoiditis

Post Edited (iPoop) : 12/19/2012 10:52:41 AM (GMT-7)


Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5473
   Posted 12/19/2012 11:50 AM (GMT -6)   
soystud, when i got put on remicade last year, i could eat my normal vegan diet again and was totally fine. most of the year when i was eating that same way, i felt like hell. so i really don't know...
 
6mp doesn't affect my eating though one way or another. i was taking it for most of this year and have been flaring.

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3393
   Posted 12/19/2012 1:04 PM (GMT -6)   
"I'm not on the diet or supplement bandwagon and you cannot convince me otherwise as it has seemingly no affect on my uc whatsoever. I don't like bland and uninteresting foods, nor do I want to be condemned to a life of eating them, just to please the beast that is uc. Sure try to eat healthy and exercise; as that's true for anybody. But don't give up the foods you love. I eat what I want without worry. The worst that happens is you have an extra bm the next day, and it is totally worth it to have pizza, a mild chili, or whatever it is that you love.
--------------------------------------------------------------------------------
"

*applause* *Raises a toast* I have a tear in my eye now...
DX Ulcerative Colitis (pancolitis) - May 2011. (Remicade Max/6 wks, LDN, SCD, vitam.)

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

quincy
Elite Member


Date Joined May 2003
Total Posts : 29628
   Posted 12/19/2012 1:11 PM (GMT -6)   
What diet are you thinking of Gina?

There's a wide array of ones to try, and please note that healthy eating is a very subjective perspective.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
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