UC and Elimination Diet

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NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/18/2009 11:33 AM (GMT -6)   
Hi Guys,

I think I am on my way to remission as my stools (1-2 a day) are normal and stool has no blood in it for the past 10 days. I have been eating a very bland diet this past month (rice, bananas, yogurt, cooked vegetables, etc.). I am really scared and nervous to try the elimination diet in fear that I eat something that will cause me to flare (and have blood and diarrhea again). I have been lucky in that the 5-ASA's have seemed to cause me to go into remission so far (no pred!). I don't want to do anything to mess anything up or risk anything messing up my recovery. Any suggestions on how to go about doing this?

As usual, thanks for the help!
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 1:26 PM (GMT -6)   
NiRo..how long have you been using the Rowasa?

the food won't cause you to flare....really!!!

Try to eat as balanced as you can....your food stress is not good for you at all.

It takes a while for your colon and especially your rectum to heal....anything that comes out can cause more bleeding just based on the fact that the tissue is very, very fragile. That's OK....it will eventually heal with the use of the enemas, and the oral meds will deal with any inflammation above that.

I used the eneams once for 4 straight months nightly..my doc said patience, I listened and it was worth it.

You're stressing out about stuff you have no control over......eat!!! but use common sense in eating...meaning don't eat only junk food.

your diet is pretty limited. do you eat any meat? protein? eggs?

Are you taking any fibre supplements?

You might want to consider to up the Align to 2 daily.

What are your other symptoms aside for bleeding?
How high does your UC go?

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/18/2009 1:31 PM (GMT -6)   
Quincy,

Thanks for the replies. I have been eating enough to maintain my weight. I realize I am probably lacking on protein, but I do have some eggs now and then and do drink Boost daily (for protein). I'm a vegetarian and always have been, so it gets a little harder.

As for the Rowasa, I have been doing it daily for 4 weeks now. The doctor wants me to do it for 6 weeks daily and then taper to 5 days a week for several months and then 3 days and then 2 for maintenance. As for the oral pills, the 4 lialda pills will be constant for several months and then a taper down to 3 or 2 for maintenance.

I am thinking of asking the doctor to keep me on daily Rowasa for a full 2 months (instead of 6 weeks) before I even taper down. I had pancolitis (4/5th's moderate, 1/5th mild)...
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day

Post Edited (NiRo) : 8/18/2009 12:38:56 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 1:46 PM (GMT -6)   
What are your other symptoms meaning do you have urgency or diarrhea or whatever?

You need the fibre supplements.

Have an egg at least once or twice a day.

Boost...I don't see it as a viable source of food...but I don't drink my calories. Maybe juicing would be better?? A good investment possibly.
As well as making your own protein drinks...

The Rowasa nightly for 6 weeks is fine. When you taper, do it every second night rather than 5 nights and then miss one.

Do every second night for at least a month or however the doc says, Then every third night...

It's been "said" that twice a week maintenance is primo....

I want to mention that it's an up and down process....what you set up to work for you now will possibly be your lifetime system. It's worked for me for 20 years and I hope to continue that way.

You need to eat....and if you're a vegetarian, add foods that are higher in protein as well.

Does fish fall into your vegatarian category?

There are protein or full food supplements by VEGAN....seems something you should look into because your diet isn't enough to maintain a healing body...my perspective, but I believe that a very well balanced diet is good.

Oh, I want to stress this as much as I can without putting things in caps. Do NOT think yourself a failure if you start bleeding again when you start to taper. It's not the food, because in reality, it's the butt that rules.

Set up the process now and be mildly disappointed that you cannot hurry it up, but your doc is impressive in the fact that he's got you on a plan that can work for you if you don't sabbotage it emotionally.

Ease up on yourself.

How high does your UC go? is it throughout your colon or limited to the lower part....where exactly?

hang tough....it's worth it. Trust me on this.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/18/2009 2:07 PM (GMT -6)   
I used to have diarrhea (at the worst it was 7-8 times a day) and urgency and blood. All of that stuff went away once I started the meds (the blood taking the longest - about 2-3 weeks into the medication). My UC is through out and biopsies showed it was "moderate" for 4/5ths of my colon and mild in 1/5th of my colon. It was worse in the rectum area compared to higher up.

I'm sorry, but what does it mean to be "primo"? Prime? Good?

Fish is not allowed in my diet. I used to eat all sorts of beans for my protein intake, but I have backed out of that while I was flaring. I just haven't had the nerve to start them back up again in fear of a flare or symptoms re-appearing. I will really look into increasing my protein intake, whether it's with adding the beans in the long run (once I get the nerve and strength) or getting it from a supplement like whey protein or something similar in the meanwhile.

To be honest, from everything I have read on this board, I wouldn't mind a lifetime system of 5-ASA's. I have had no side effects and I can deal with the hair loss if it comes (it's not as bad for men). My doctor (as most GI docs do) tells me to eat everything. But from everything I have read about UC, it was better to be on a low fiber, low residue diet when flaring. I guess I am struggling with getting off of that since my symptoms are gone in fear things will get worse again!

I did alot of research to find my doc, so I am glad that I have some sort of confirmation that he is good. He actually told me stop being a worry wart the last time I was there! I just can't help it, but I am learning! ;)

P.S. I just want to clarify that I am not taking Boost alone. I usually drink it between lunch and dinner as a supplement to the other foods I have been eating.
Lialda 4x a day (2x in the morning, 2x at night)
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day
Diagnosed with Pancolitis (Moderate in 4/5th of the colon, Mild in 1/5th) in July 2009

Post Edited (NiRo) : 8/18/2009 1:19:38 PM (GMT-6)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/18/2009 2:16 PM (GMT -6)   
Once I was in pred-induced remission (and then once I was off the pred an in "real" remission) I was able to go back to eating like I had before without any problems! I'm not a vegetarian, but I do love me some beans (homemade refried ones, especially!), and can eat them with out any issues (well, other than gas and a bit looser poop the next day, but that's normal for me!). I think what you need to keep in mind is that you probably ate food before your UC diagnosis that could cause some loose poop or a bit of "ahhhh I need to poop now!" feeling. I know I had to remind myself of that when I OD'ed on sweet corn, grape tomatoes, and raspberries all in one day!

I think the people who have issues with food are those who have underlying food sensitivities/intolerances that they had before they had UC.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 2:25 PM (GMT -6)   
Hi...primo would be the best value o/ optimum for maintenance. That could be every third night or every 4th night...depending on how it works for you. I used to try to once a week or beyond, but life always got in the way ... meaning some crisis/distress for me.

Emotions and how you value right or wrong can be very controlling. Once you ease up on that and "experiment" to find what works without believing that food will cause your flares will help a lot.

Have an egg at least once a day....I have it for breakfast with toast and coffee...can last me 7 hours if necessary.

The boost has lots of sugar and for some isn't a good substitute. There are high quality formulations out there...I cannot take whey products no matter if they're isolates...I have protein in food rather than supplements because the discomfort isn't agreeable for me.

Low fibre....hmmmm, well, that's subjective.
I want to explain something to you that might make sense. If you baby your colon too much, it will act like a baby and become very lazy. The colon is the fastest learning organ in the body and loves to have something else do its work. That's why many of us encourage fibre supplements....especially to those who tend to not eat enough fibre or even food for that matter.

The rhythm of the colon can go into spasms. That could be contributed to low fibre, high stress, inflammation, IBS, too much of a food that acts like a laxative or too much food that slows the colon. The goal is to find the balance so that the colon can start acting properly and not overreact to stuff like a spoiled brat.

Consistency is important, but forcing the colon to ease up om overreacting is necessary. I take antispasmodics (a lifesaver for me so that I can function without discomfort) and for the past while fibre supplements...awesome results.

I pretty much eat what I want, but do have food symptoms when I overdo...but that's expected and serves me right if I'm unconfortable. But it has never encouraged a flare nor made one worse to have me suffer longer, etc.

Once you learn to not micromanage and try different stuff, you'll not feel so limited.

I've been there...the first year I tended to cut out stuff that caused me discomfort and it was easier to function. healing took a while and I had lots of ups and downs learning the process.

My doc is awesome...same one for 20 years, and I trused him regarding the use of 5ASA oral/rectal. he also trusts me for finding out what can work for me.

So, there you have it.....take it for what it's worth....but please ease up on your rules. Common sense is a good thing....whether you are vegan, vegetarian or whatever.

I choose what I eat and can improve my choices. To venture to the grey areas is the most risk emotionally rather than physically.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 2:27 PM (GMT -6)   
fruitgirl...remember that food itself has action in the digestive tract. Eat more fruit to help prevent constipation, eat more grain/cellulose fibre to bulk it up, eat more blah, blah to slow the colon....etc.

It's not necessarily intolerance. It's finding the balance.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/18/2009 2:29 PM (GMT -6)   
     I think the majority of us with UC are "worry worts".  My GI said that the average UC sufferer worries about just everything.  It would be so easy to be the type of person that says "eh, what will be, will be" but that just isn't in our makeup.  My husband gets so frustrated with me because years ago he had a stomach ulcer and was a worry wort like me, but his doctor said to try to take the attitude that if you can't do anything about a situation, just let it go.  Easier said than done, huh?
     I tend to disagree with quincy....sorrrrryyyy.  Along with the stress (no doubt about that), I did go into flares after eating things I KNOW I shouldn't have.   I ate steak a few times a week and pizza while vacationing in PA....boom, flare!  But I see you are a vegetarian, so not sure about your situation.  It is a shame you don't eat fish, as salmon soothes my ulcerative proctitis and I try eating it baked with turmeric and a little seasoning at least three to four times a week.  I eat rice cereal  with Red Mill ground flaxseed meal (1Tablespoon) on top with half a banana for breakfast and yogurt for lunch.  I am getting a bit better so extending my diet somewhat.  I stay far away from fried and spicy foods.
     I see you also take fish oil supplements.  I increased mine to three times a day and I believe it not only is helping my colon but it lowered my blood pressure!!!!  Have you tried flaxseed oil capsules?  I have a friend who swears by them but I think they do the same thing the fish oil does. Not sure.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/18/2009 2:44 PM (GMT -6)   
Thanks for the responses.

Christine - I am taking 4 fish oil a day and it has dropped my blood pressure drastically. I was never high to begin with, but I was in the "pre-hypertension" stage.

As for the food, I think I will be a little bit more brave and start to open up in what I eat. I just find it hard to eat out and be healthy as a vegetarian. Before UC, I would divulge in pizza, stromboli's, high cheese pastas, fast food (especially Taco Bell), french fries, mozzarella sticks, etc. when I would go out to eat with friends at restaurants. It sounds like from everyone's response, I can still do that, but far less often. Something like once a month or even once a week (depending on how I react) might be OK to "divulge". I will see how I react and take it from there. Thanks everyone for understanding and the kind words!
Lialda 4x a day (2x in the morning, 2x at night)
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day
Diagnosed with Pancolitis (Moderate in 4/5th of the colon, Mild in 1/5th) in July 2009


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 2:55 PM (GMT -6)   
NiRo...have you done lots of research or frequented sites/forums for vegetarians? Maybe something you should do because there's always information and different eating habits that may spark a new freedom for you.

Lots of fat might not be too good regarding pizza....good quality places ha better and less cheese, less fat, more veggies, etc. Lots of options I would think.

Look into the vegatarian protein supplements.....lots available. Learn how to read labels and experiment. That's the best you can do for yourself....because it's for YOUR future and well being.

As well...it gives you lots of options...that equals less distress.



Christine....I would NEVER want to be the type of person to say what will be will be....that's more of a cop out and leaves out decision making. Some times it is what it is, and learning how to cope is the challenge. Some things we cannot change, but our perspectives of stuff can.


Regarding the meat....I think your inflamed area is friagle, and maybe eating steak just challenges the digestive process too much anyway....maybe a smaller amount or different cut of meat.

I have no problem with you disagreeing....but you're also a lot older and a different digestive system. Not to be disrespectful....but it's much older and possibly more sensitive. I have to learn from that as well....that's why I'm trying to allow options for me as I age.

Not all can eat anything, nor will all choose to eat anything. Finding the balance is a good thing, and if stuff doesn't agree to the extent of causing too much distress, I suggest that be crossed off the list or eaten in small er portions.

I also don't agree with large amounts of fish oil...it's been known to encourage bleeding. That could as well be part of the bleeding issue. That as well as vitamin E.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/18/2009 2:57 PM (GMT -6)   
quincy, more what I meant regarding the food and people who have intolerances are those people who can't eat dairy, spicy food, etc, because they feel it makes them flare.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/18/2009 4:19 PM (GMT -6)   
I'll just weigh in, that I've eben on Asacol for at least 20 years, and my hair is so thick I have to get it "textured" (they used to call it thinned) to manage it.
I have only a few foods that I know will upset my gut pronto every time, and I can eat practically everything else. The biggest one is iceberg lettuce. Even a little, like they might give you at Taco Bell...I also can't stuff myself, then I have trouble. I guess like anyone but just tenfold.
Don't worry yourself sick! I am not a worrier, I know I am strong enough to handle anything.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/18/2009 4:35 PM (GMT -6)   
fruitgirl....thanks for the clarification.

The belief that foods cause a flare can be very consuming (notice the pun?).

Sometimes more effort is put into that (and easier sometimes) than taking meds and adjusting the dosages or realising the food action in the digestive tract.....my perspective of what I read anyhoo.

I suffer as well from ice cream on an empty stomach..oh the discomfort and gasssss...my bad and I deserve it...but I don't flare or have any symptoms during a flare that increase them...except maybe more bms and gas. oh, and gut pain. That and salofalk..not a good combo.

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 8/18/2009 4:56 PM (GMT -6)   
How about Pea protein powder?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/19/2009 12:45 AM (GMT -6)   
Be careful with eating too many eggs (as was suggested eating them once or twice a day) if you have high cholesterol issues.  One large egg has about 213 milligrams (mg) of cholesterol — all of which is found in the yolk. If you are healthy, it's recommended that you limit your dietary cholesterol intake to less than 300 mg a day. If you have cardiovascular disease, diabetes or high LDL (or "bad") cholesterol, you should limit your dietary cholesterol intake to less than 200 mg a day. Therefore, if you eat an egg on a given day, it's important to limit or avoid other sources of cholesterol for the rest of that day.
 
Food/diet is strongly suspected to aggrivate IBS (which many IBDers do seem to have as well, many unknowingly as well) and since the researchers/scientists have not ruled out food/diet triggering flares for IBD then no one should, and it's improtant to remember that not everyone's triggers are necessarily the same either...also that many may have food intolernaces that they may be unaware of but it may be negatively affecting their IBD.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 8/18/2009 11:48:02 PM (GMT-6)

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