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First flare, what to do?

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Posted 4/19/2012 6:09 PM (GMT 0)
Hi, My first post to the forum. I hope to share and learn from those suffering from this disease.
I was diagnosed in July 2010. I went through the worst month of my life before my 1st colonoscopy
to diagnose why I was bleeding. During that time I basically ate nothing and that made me feel worse.
I was bleeding 30 times a day.

After the colonoscopy the doctor put me on Prednisone and Asacol HD and Mesalimine enemas nightly.
After 4 days on the meds, I finally had a good stool, the bloody diarrhea disappeared.
It was the happiest day of my life. No one suffering from colitis would understand this but it was
such a great feeling it really gave me hope that everything would be better.
I stayed on Pred. for 3 months, stayed on 4,800mg Asacol HD for 6 months, then went to 3,200mg
Asacol HD until now. I am still doing nightly enemas because the worst inflammation was in my lower
colon.

Fast forward to last week.
I noticed blood on toilet paper after a b/m. I was horrified and it instantly put me into panic mode.
I thought, here we go again. Stress is not good so I am really trying to have positive thoughts.

My diet for the past 2 years has been very high fiber. I never eat out
and eat a lot of oatmeal, grains, soy milk, soy yogurt, short grain brown rice, and beans, peas, apples, berries,
bananas, and only once a week I would have fish. I would also eat grape nuts with soy yogurt with a lot of
blueberries at night as a dessert. Perhaps the nightly dose of grape nuts were too hard on my colon. I've been
doing this for over a year.

Can you do cumulative damage to your colon with certain foods that are hard in texture like grape nuts? Prior to my initial diagnosis 2 years ago, I ate a lot of peanuts every night and I thought that they could have caused
the initial reaction 2 years ago but my doctor of course said no.

The only real difference I made to my diet over the last couple of months was to add salad to my diet. I had not eaten salads daily for a few years so I thought that perhaps the daily salads (with oil dressing) coupled with the high fiber diet could have triggered my flare. I've kept a food diary for the past 2 years so I know exactly what I've eaten over that period, but even with that, it's hard to tell.

Since last Saturday I've eaten a lot differently. I only eat bananas, soy yogurt for breakfast.
I have a peeled apple as a snack.
White rice with potato based soup and a couple of pieces of steamed zucchini and carrots for lunch.
I have a slice of white bread in the afternoon with a light coating of peanut butter and apricot spread.
Dinner has been the challenge. I ate salmon almost every night with boiled potato.
It seemed to make me feel better so I've had that on back to back nights. One night I had grilled chicken but the next day was worse the previous one so I won't eat that again for a while.

In closing, I'm having the hardest time figuring out foods to eat because I don't know how long after eating the
food it takes to reach the colon so I can figure out foods to eat to stop the bleeding.
For example. One day I have one b/m in the morning with bloody mucous, the next day I have 3-5, next day I'm
clean, next day worse than the previous. Yesterday was great day. I felt really good, no blood on toilet paper at all.
Then today right away I had bloody mucous twice within 45 minutes. I'm up and down while basically eating the same thing.
My doctor wants me to add Canasa suppositories to my treatment. I already do mesalimine enema at night.
I've been trying to stay away from more meds.

Meds. I take are 3,200mg Asacol HD, Mesalimine enema nightly, Folic acid 1mg daily.

I'm seeking out help here because I know the doctor will just prescribe more meds. This is my first flare and it's not severe at the moment. I want to get it under control before it worsens.
Your helpful comments would be greatly appreciated!

Post Edited (Glasw55) : 4/19/2012 12:13:23 PM (GMT-6)

Posted 4/19/2012 6:45 PM (GMT 0)
I really think its unlikely that something you eat today is going to give you mucous and blood tomorrow or the next day.  Inflammation is, in my mind, a chronic process, not an acute one, and what we're dealing with is more subtle than "the salad gave me a bloody bm."

It sounds like you responded well to the meds when this all began, and you've been able to maintain a good remission until recently.  While I said above that the salad you had last night didn't give you a bloody bm today, it is entirely possible that eating raw veggies like a salad can be a problem for you in general.  Is that the only source of raw veggies in your diet at the moment?  If so, cut it out and see if things improve.  Many people with IBD cannot tolerate uncooked veggies or fruit.

It's also possible that you are having a flare for none of these reasons.  Sometimes crap happens.  Sorry.  Maybe you had a virus a couple of months ago that upset the balance.  Maybe you had some life stresses that put you over the edge.  Maybe it's just random.  Up your meds for a while to get back into remission - instead of canasa on top of the mesalamine enemas, how about a steroid enema for a few weeks?

I'm glad you found the forum and wish you the best.  You will get a lot of good advice here, including advice about supplements etc. that might be helpful.  Lots of UCers use probiotics with great results.  That's not my bailiwick so I'll leave it to those who know the most.

Posted 4/19/2012 6:54 PM (GMT 0)
You can up your Asacol to 4800 mg/day. I've had to stay on that dosage since 2007, otherwise I flare.

I don't think anything you ate caused your UC. Sounds like you were eating extremely healthy. It's such a shame that we don't know what causes this.

Good luck.
Posted 4/19/2012 6:58 PM (GMT 0)
I also think you could try upping your Asacol to 4800 mg. I'd also add a good quality probiotic.

It may also be you've been overdoing it on the fiber, and you just can't tolerate that much on a daily basis.
Posted 4/19/2012 7:57 PM (GMT 0)
I appreciate your responses. I asked my doctor last week if I could increase the Asacol HD to 4,800mg but he wanted me to add the Canasa suppositories instead. I have them in the fridge but I haven't used them yet because I have to go to work and it says you need it to stay in for 1-3 hours to be effective. I already do a nightly Mesalamine enema.

What are good foods to eat when flaring? I only weigh 135 pounds (5'10" male) on a good day and I lose weight fast if I don't eat at least 2,000 calories daily. Right now I'm around 1,000 to 1,500 at best.
I actually felt really good (energized) after eating salmon but I need to have variety, I would think.
Posted 4/19/2012 8:13 PM (GMT 0)
Glasw55,

Welcome to the forum.

I am sorry you are in a bad flare at the moment.

When I look at the list of foods you list: 
eat a lot of oatmeal, grains, soy milk, soy yogurt, short grain brown rice, and beans, peas, apples, berries, bananas, and only once a week I would have fish. I would also eat grape nuts with soy yogurt with a lot of blueberries at night as a dessert.

Personally, this list alone would make me bleed - you have lots of gluten, wheat, grains, soy (very unhealthy), apples and bananas I wouldn't tolerate. Although we are all different.

The meds I took didn't help and I was intolerant of them, so I had to find my own way as I didn't want to go on biologics or have my colon removed. There are many things you can do to improve your symptoms: diet, supplements, probiotics, LDN - low dose naltrexone. Here's the list which helped me tremendously:

Here's what's worked for me:

1) Diet is key for me: I do the Paleo diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 5 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free. Personally, however I prefer the Paleo diet, because it is an anti-inflammatory diet - mostly veggies, salads,nuts, fish, lots of GRASS-fed animal products like lamb, beef, bison, and eggs, no grains at all. The whole basis of the diet is to concentrate on foods rich in healthy ratio of omega 3 to omega 6, which is ideally 1:1. Grain-fed animal products contain unhealthy ratio of 1:20 which causes and contributes to inflammation in the body, and therefore disease. Also grass-fed animal products contain important CLA, which you cannot get from any other source.

You can buy grass-fed animal products from a local health food store like Whole Foods, but you can also find a local farmer who only has grass-fed animal products through: www.eatwild.com

8) start a food journal and see what correlations come forth

9) There's a great app for keeping track of your symptoms, diet, meds, etc...

http://wellapps.com/products

10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory

What do you think?

Good luck, and I hope you start to feel better soon.

Let us know how we can help you.

Posted 4/19/2012 10:55 PM (GMT 0)
Welcome to the forum. Start keeping a food journal. This disease is so different for all of us. I don't think food causes UC but I think it is a trigger for flares.
Posted 4/19/2012 11:07 PM (GMT 0)
Thank you both for the comments. I have been keeping a food journal for the past 2 years since being diagnosed. Right now I'm a bit puzzled because of the roller coaster ride of symptoms.
For example: 2 days ago my systems were slightly worse than the previous day.
Yesterday was a great day, best in a week, and today is a real bad day. I thought I was headed the right direction only to find I'm going backwards again. No real change in diet from what I've
been eating in the past week.

I'm going to my Gastro tomorrow.
Posted 4/19/2012 11:20 PM (GMT 0)
Hi Glasw55,
Sorry to hear of your current situation.

One of the most common dietary protocols recommended for UCers is the SCD Specific Carbohydrate Diet. There are a couple of other similar diets to this like Paleo and GAPS. And many people modify these to great effect after finding our what personally works for them.

The theory and science used to explain these approaches is that UCers like us have compromised guts that don't function well and in some cases don't breakdown and absorb some types of food well. ESPECIALLY complex carbohydrates (high fibre and starch foods) like, wheat, bread, oats, rye, barley, pasta, starchy veg like potatoes. Often these molecules of complex carbohydrates get all the way down to the colon they’re not absorb and feed bad gut flora/pathogens. Sugar will also feed bad so sugar and high fructose fruit and fruit juices are also a problem for lots of people. When these foods are present the whole gut can get out of whack because it's not absorbing these foods and instead it’s feeding the bad guys that start to dominate and ultimately you get all the inflammation symptoms.

The diets mentioned above eliminate the foods that are not being absorbd and promote the foods that are going to heal the gut. Like good fats and proteins. It does not surprise me in the least that you had a good experience with eating salmon as it's rich in good fats.
Probiotics are also key. So once you’ve eliminated the foods causing the problems you will need to get the gut flora back in balance and probiotics and probiotic rich food will help this – or so the theory goes.

Anyway I'd suggest you do some research by googling the SCD or GAPs diets and ease into them.

Of course getting the meds sorted is critical too including rectal meds.

Good luck.
Posted 4/19/2012 11:53 PM (GMT 0)
Hi Jimbo, Thank you for taking the time to respond. My problem is that I lose weight fast if I don't eat calories. I need energy to work (Don't we all)
My normal weight is only 135 pounds (5'10" male) and that's eating 2,000 calories daily.
Is it ok to eat the same foods daily while flaring? That's my issue right now. I need to figure out what to eat.
Posted 4/20/2012 12:15 AM (GMT 0)
It does take some adjustment and planning. The misconception of these diets SCD and GAPS is that they're low calorie. They're actually don't have to be. They're just more selective.

I'm eating a LOT of steamed Pumkin and Carrots and Cauliflower and other veg that I have used to replace bread, cereals, pasta wheat etc. It does mean a bit more meal preparation but all these things you can do in bulk and then refrigerate in meal size containers for at least a few days

Also I'll eat 4-5 times a day rather than 3.

The other important thing is to ease into any diet with no drastically sudden changes or you'll be in trouble. For example start with eliminating sugars. Then maybe the following week replace one portion of strachy food with pumpkin and some protein like your salmon. and so on.

Boiled eggs can be easy and nutritious snacks, soups made with meat stock/broth and pureed veg can easily taken with you in a thermos flask. So you can always snack between meals. There's a thermos of soup sitting next to me at my desk all day!
Posted 4/20/2012 12:17 AM (GMT 0)
Jimbo,

Great ideas!

Posted 4/20/2012 1:01 AM (GMT 0)
I don't like all those Byzantine rules of the official IBD diets, whether SCD, Paleo, or Maker's. Following those strict rules has never helped me. I think diet gurus cause almost as much harm as good because their comprehensive diets are intimidating and just turn people off. Most of the food they say to avoid are perfectly fine for me; and many of the foods they consider legal are for me poison.

Official diets don't work for me but what has been very effective is avoiding gluten foods. It won't work for everyone but I really recommend trying to eat gluten-free for a week or two and see if your symptoms improve. That should not be hard, just avoid wheat, barley, and rye and substitute corn, rice, quinoa, or buckwheat. That made a huge difference for me.

Most veterans of this disease, no matter how many meds they take, eventually find that they must avoid some triggering foods if they wish to remain in remission. The triggering foods vary with each individual and the only way to identify them is thru trial and error, not by following the dictates of a diet guru. The usual triggers are gluten and dairy but they could be anything. Sorry but you need to find your individual verboten list on your own. Most of my triggering foods, except for gluten, are perfectly legal under SCD and Paleo. That is why I don't subscribe to particular diets.
Posted 4/20/2012 1:09 AM (GMT 0)

Jimbo NZ said...
It does take some adjustment and planning. The misconception of these diets SCD and GAPS is that they're low calorie. They're actually don't have to be. They're just more selective.

I'm eating a LOT of steamed Pumkin and Carrots and Cauliflower and other veg that I have used to replace bread, cereals, pasta wheat etc. It does mean a bit more meal preparation but all these things you can do in bulk and then refrigerate in meal size containers for at least a few days

Also I'll eat 4-5 times a day rather than 3.

The other important thing is to ease into any diet with no drastically sudden changes or you'll be in trouble. For example start with eliminating sugars. Then maybe the following week replace one portion of strachy food with pumpkin and some protein like your salmon. and so on.

Boiled eggs can be easy and nutritious snacks, soups made with meat stock/broth and pureed veg can easily taken with you in a thermos flask. So you can always snack between meals. There's a thermos of soup sitting next to me at my desk all day!

Hi Jimbo, I appreciate your help. Unfortunately I have drastically changed my diet. I was eating loads of fiber. oatmeal, cereal, soy milk, soy yogurt, short grain brown rice, and beans, peas, apples, berries,
bananas, and only once a week I would have fish.
In the past week I've only eaten White rice, no brown rice, bananas, an apple every other day, potato puree soup, white bread instead of sprouted ezekial, and soy yogurt. Also salmon or Tilapia nightly with potato.

Is the yolk of the egg ok to eat. I bought eggs but I used to cook egg white in olive oil but I'm hesitant to do that now. Should I just go for the boiled egg with yolk instead of frying the whites?
One other thing that puzzles me. Every bread I looked at in the store had wheat flour, even the white bread I bought. I was eaten Ezekial sprouted bread for the past 2 years.
http://www.amazon.com/Food-For-Life-Ezekiel-Original/dp/B005G1MQI2
Posted 4/20/2012 1:48 AM (GMT 0)
Bread is made with wheat. Unless it's gluten-free bread, of course.

If you need calories, you should eat egg yolks. Why wouldn't you?
Posted 4/20/2012 1:59 AM (GMT 0)
Babeinthewoods, I agree with you about finding what works for you, in fact I actually said that modifying these diest to your own personal situation is a godo idea.

But I disagree about them being initimidating , maybe for some yes, but for many isuspect and definitely for me they provide a useful road map that peopel can start on for diet releif to tehir symptoms. The 'trial and error' path could be an awfully long road. GAPS and SCD provide a fairly decent elimination plan and structure the careful re-introduction of different foods one by one. Of course if you can work alongside a nutritionist great but I'm finding a prescriptive diet fairly useful start point

Of course never stop thinking for your self and trialing and learning and modifying. Totally with you on that one. But i think it's more daunting not knowing where to start sometimes so thats why it's easy to point someone on a fairly tried and trusted path.

I see from what you said in your post and your signature that what works for you is actually pretty darn close to the tenets of SCD and GAPS starting points anyhow > Avoid gluten containing foods and processed sugars that's about 90% of it right there. What are your trigger foods?
Posted 4/20/2012 2:03 AM (GMT 0)
yes egg yolks are nighly nutritious. Unless you have an egg allergy I'd eat eggs every day. Of course build up to that if you haven't eaten for a while. I like them either scrambled in a bit of butter, poached, or soft boiled, or hard boiled to take with you as a snack. I LOVE EGGS!
Posted 4/20/2012 2:04 AM (GMT 0)
...apologies for terrible typing ...must remember to spell check in Word before posting
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