To those of you trying different diets...

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Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/25/2008 2:41 PM (GMT -6)   
Just wanted to share my experience.  I was diagnosed with proctitis in January '08 after symptoms appeared two months earlier.  In the early stages of my UC, my symptoms were not terrible.  I didn't have the awful cramping, tons of blood, and serious urgency that I had later on. 
 
A month or so after my diagnosis, I started reading all about different diets.  I cut out all kinds of stuff at different times and most recently was on the Specific Carbohydrate Diet.  During this time of trial and error, my symptoms became progressively worse.  I thought for sure that my inflammation had spread, and that I was getting worse.  I lost ten pounds (for me, that's a lot), was seriously dehydrated and weak (hospitalized at one point), experienced muscle cramping, and even started having memory problems.  The constant deprivation of foods was making me crazy, and trying to stick to the SCD was nearly impossible because I was so weak.  Who can cook all day when you're already exhausted?
 
So finally last week I decided to go back to eating normally, and my symptoms have improved dramatically.  Granted, I still avoid foods that I've come to know as trigger foods, but I truly believe that the strict diets hurt me more than helped.  I think the diets help you to identify these trigger foods, but past that they didn't do much good for me.  I should mention that I continue to eat to homemade yogurt that is part of the SCD.  I love the flavor, and I have a feeling the probiotics/good bacteria are helping me, too.  Many of you are probably already eating yogurt, but those of you who can't tolerate lactose might want to try the SCD recipe. 
 
Anyways, this was a big breakthrough for me, so I just wanted to share it with the people who have been helping me along the way.  I'm not in remission, but at least now I can feel some hope that I may get there someday. 
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


IBD/IBS Author
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/25/2008 3:07 PM (GMT -6)   
Katie,

The SCD is, I think, one of the hardest diets to follow, especially, as you say, when you're already sick, out of energy, and just need some sustenance.

Keeping a food journal might be a better first step for you, and anyone else looking to find their 'trigger' foods. Write down everything you eat, drink, or chew - to this for at least a week, or a month is better - then note how you feel, what your bm's are like, if you have cramps, gas, bloating, your mood, energy level - EVERYTHING. Then, you can look back and see if one or more foods contribute to one or more symptoms. Cut out those foods and then see how you feel.

I've done food journals, elimination diets (Very hepful, but again, rigorous and not for those who don't have time or won't commit to it), low residue diets - I still go back to this one when in a flare, BRAT diet - also a touchstone for me when flaring, and try to follow the concept of the rotation diet as much as possible.

For me, the SCD didn't work. Keeping weight on is a BIG problem for me and all I did was lose weight and energy while trying the SCD. It works wonders for some, which is awesome, and it did show me that I eat far too much bread and pasta in the course of a week and that causes me issues. One or two servings of white flour products every 3 or 4 days is best for my gut.

You're on a good track. I'm a big believer in listening to your body and hearing what it's telling you and it sounds like you're doing just that.

Cheers,
Elizabeth
Dx'd, UC 1998, IBS 1999
Asacol, probiotics, vits., and whole foods diet


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/25/2008 3:34 PM (GMT -6)   
I couldn't agree more. I've kept a food diary for the last SEVERAL months (all through my diets and even still now). Its been a big help, and I always recommend it to others. Now I really do believe that just following my instincts is what's making me feel better.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 8/25/2008 3:58 PM (GMT -6)   
Hi Kiss520,

if you have the time and you don't mind...can you post the recipe for your SCD yogurt?

thanks,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/25/2008 4:35 PM (GMT -6)   
Will do. Don't have time at the moment, but I will tonight. Just so you know, you'll need to buy a yogurtmaker, and they run about $40-60. I bought Yogourtmet on Amazon for about $55.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


IBD/IBS Author
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/25/2008 5:11 PM (GMT -6)   
Actually, for the SCD yogurt recipe you can go to the www.breakingtheviciouscycle.info web site and search the recipes fpr it.

<FONT color=#0000ff>Asacol, probiotics, vits., and whole foods diet


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/25/2008 7:05 PM (GMT -6)   

Ah!  Thanks for the reminder!  I forgot it was on the website.  Here is a link to the page where you can learn how to make it with either a yogurtmaker or a heating pad (Sounds ridiculous, I know.  The yogurtmaker is easier.):

http://www.breakingtheviciouscycle.info/beginners_guide/yoghurt/yoghurt.htm

If plain yogurt is too tart for you, do what I do and mix in some honey.  SO good!

PS.  This isn't nearly as hard as it looks.  They use so many pictures and instructions, but I found it to be quite easy (especially with the Yogourmet).



Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/25/2008 9:25 PM (GMT -6)   
So if you keep a food diary, how do you know what affected you? In other words, is something a trigger because you had discomfort the same day, or the next day, or (as I've read in my exploration of food sensitivity) is it possible it might affect you as long as three days later?
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 8/25/2008 9:39 PM (GMT -6)   
Food doesn't trigger UC flares, but food can cause some symptoms that would feel like UC if one is flaring. It's hard to distinguish sometimes.

Many of us with UC has IBS...sometimes our digestive systems just don't like certain foods or over and above a certain amount of food.

Keeping a food diary is a good idea, but one has to remember that symptoms and the food eaten can be 24 hours or more afterward to realise the actual offenders for the symptoms.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/26/2008 8:23 AM (GMT -6)   
For me, the food diary is more about immediate reactions (which means food that I should DEFINITELY avoid). You know how there are some foods that cause immediate stomach upset as opposed to delayed? Those I make sure to record. I also record which medications I use and when, what kind and how many BMs I have in a day. If there's an increase in BMs, then I can go back and look to see if I'm eating a lot of one kind of food. Also, I was able to see a pattern when I started eating the SCD yogurt. Shortly after I started eating it, my symptoms improved. I also started seeing improvement after I eliminated one dose of Rowasa each day (I had been using two previously).

Its little stuff like that that you think you THINK you'll remember, but unless you write it down its hard to look back and make those connections.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/26/2008 9:34 AM (GMT -6)   
You don't actually need to purchase a yogurt maker. I made perfect SCD yogurt with only the low heat from my oven light. If you search www.scdiet.org, you can probably find directions for alternate ways to make the yogurt without purchasing additional equipment.

For anyone wanting a sort of overview of foods for IBD, I recommend The New Eating Right for a Bad Gut. It's not a diet per se, but more an accumulation of surveys of IBDers regarding foods that GENERALLY are considered safe and foods that tend to be problematic. There's also a great section on the importance of omega-3 supplementation to reduce inflammation.
 
I'd also add that, in my experience, it's not diet alone that does the trick, but dietary changes in combination with rebuilding the good gut flora with probiotics, reducing inflammation with omega-3s, soothing and healing the gut with l-glutamine and other supplements. In other words, as with so many other things in life, it's not a magic bullet, but it is a key piece of the puzzle.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 

Post Edited (princesa) : 8/26/2008 8:37:46 AM (GMT-6)


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 8/26/2008 12:09 PM (GMT -6)   
thanks Kiss520,

I think I'll give it a try...hope I don't burn the pot...LOL

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/26/2008 9:38 PM (GMT -6)   
NBT - You're very welcome! I hope you like it!

Princesa - Great book suggestion. I have read it and it has definitely helped to guide my food choices.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 

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