Needing encouragement big time

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Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/7/2008 3:22 PM (GMT -6)   
Hi Everyone,
Today and yesterday have been absolutely miserable.  Yesterday I had diarrhea 14 times and today I've had it 10 times and its only 3:15pm.  I'm on Day 7 of trying that diet that eliminates sugars (fructose, sorbitol, mannitol, and lactose) and wheat bran fiber.  I know it probably takes a while to see results, but I'm feeling so bad I just want to give up.  I think I'm having withdrawl from the sugar, and I'm so dehydrated from all the diarrhea.  I don't want to call my doc b/c he'll just tell me diet isn't a factor and he may try to change my meds, which I don't want to do b/c I'm leaving for a vacation on Wednesday.  I'm feeling very down and could use a little advice or encouragement to stick with this experiment.  Please help.  sad
 
Katie
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/7/2008 3:41 PM (GMT -6)   
How much longer could a diet take to show effect? You have had diarrhea for several days and been on a rigid diet for 7 days. I would say at this point your diet is not a factor; your body isn't able to hold any food for any length of time. Continue on your program if it makes your mind feel better but if I were you I look for a diet that contained foods that bind.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


kmach33
Regular Member


Date Joined May 2008
Total Posts : 21
   Posted 7/7/2008 3:46 PM (GMT -6)   
I think that the diet is a great idea. I have tried to cut most of that stuff out of my diet, but I still eat some sugars throughout that the day. Overall I've made a pretty drastic change in my diet since college and have only benefited from it. Do you think that the diet change is causing this? I'm going to assume that you must eating something else to take the place of some of the things you normally ate. Could this be part of the problems the past couple days? Have you tried taken something like immodium? immodium will usually bind me up for a day or so if i'm having problems. i wish i could be of more help, but i hope you can some rest the next couple days before leaving for vacation. i'm sure once you get away from everything you'll be in a better place mentally which will help physically. best of luck and enjoy your vacation.
23yr old male, diagnosed October 2003
Medication:
9 Colozal/Day, 100mg 6-MP, 1000mg Canasa mornings, Rowasa Enema nightly
Supplements:
1200mg fish oil/omega3 capsules/3x daily, 2 probiotics capsules/daily, 1mg folic acid


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/7/2008 4:10 PM (GMT -6)   
The diet may be a great idea, but it doesn't seem to be working right now. Continue if you wish, but consider that you may only continue getting worse, and plan accordingly. And careful of taking too much imodium; it can possibly decrease colon mobility enough to cause the colon to distend and even rupture.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/7/2008 4:17 PM (GMT -6)   

Are you symptoms worsening?  How long will you wait to see if it works?  Two days from now, on vacation, will you even be able to follow this diet?

I don't know what is possible to eat on such a diet, but I'd suggest some sort of fiber, something nonchemical to slow things down.  Oatmeal? 

You can always try the diet some other time if you have to.  It's not going anywhere.


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/7/2008 4:32 PM (GMT -6)   
I really don't want to take imodium b/c of that awful toxic megacolon thing I've been reading about. As far as foods that bind, I am eating a basic white bread (flour, water, yeast and salt). I'm just not supposed to have wheat bran fiber on the diet. I do want to give the diet a fair shake - I've read that it can take from a week to a month to see results. I just feel so miserable that I'm feeling super-negative about everything. I haven't gone to the bathroom in about 3 hours, which is the longest stretch I've had in these last two days so I'm feeling a little better about it.

I called my doctor to see if I should start Prednisone to give my current treatment a boost. We'll see what he has to say about that. Thanks to all of you who have posted so far. I appreciate your help so much!
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/7/2008 4:38 PM (GMT -6)   
Seconder - I posted my reply before I saw your response. I read that for one patient it took a week to start seeing results, and for another patient it took a full month. The premise of the diet is that these sugars and wheat bran fiber are not digestible and that they ferment in your stomach, so the purpose of cutting them out entirely is to starve off the bad bacteria that's fermenting. So that's why it takes a while.

It won't be hard to follow the diet on vacation, because I'm going to my parents' condo which has a full kitchen. We tend to cook there rather than eating at restaurants. Aside from white bread and pasta there really isn't much else in the way of fiber that I can have. Its hard to say whether my symptoms are worsening b/c I seem to fluctuating a lot between very bad days and not-so-bad days. That's what's so frustrating - I'm having trouble deciphering what's working.
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/7/2008 9:13 PM (GMT -6)   
Curious... The diet cuts out sugars, but lets you have white bread??? It seems to me that could just be feeding the yeasts... However, I have no idea which diet you're following.

Can you have applesauce? Peanut butter? Those usually help bind me up.

At times it is VERY hard to decipher what is working, if anything! This DD is so unpredictable.

Have you tried a pro-biotic? That may help. An easily accesible one that many have had good luck with is Culturelle. It's available at Wal-mart, CVS, Walgreens, etc. But start slow - maybe 1/2 a capsule for a day or two and then a full capsule.

I really hope you find something that works so you can enjoy your vacation!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
10mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion on 06/17/08:  Next (3rd) infusion on 08/12/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/7/2008 9:23 PM (GMT -6)   
Hi Dakotagirl! I know the diet sounds odd, b/c of the white bread. The real trouble is with fructose malabsorption, which isn't found in plain white bread (fructose isn't). Small amounts of cane sugar are okay, but I'm even avoiding that for the time being.

Unfortunately applesauce and all other fruits have fructose, so that's out. That's what's really killing me - I love my fruit. I also adore peanut butter, but that seems to give me trouble, too. Why does it always have to be the things you love the most?? Ergh!

I was taking Digestive Advantage (a probiotic), but it gave me terrible bloating so I switched to plain acidophilus twice a day. That seems to be much more gentle for me.

Thanks so much for the well-wishes. Oddly enough, after having 10 bouts of diarrhea today, I went into a period of feeling absolutely no symptoms for the last six hours. This DD is just ridiculous sometimes. Well, I'll just keep my fingers crossed that it continues for my trip. Thanks again!

Katie
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 7/7/2008 10:14 PM (GMT -6)   
I keep a diary and I found that stress is the #1 culprit for a flare for me. I did cut out desserts as a new years resolution, but that doesn't seem to make a difference.

Perhaps this is something that you can take on in smaller increments? Maybe the all or nothing approach is too severe.
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Asacol 2 pills 3 x/day, Canasa supps
Supplements: vitamins, probiotics
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 7/8/2008 6:30 AM (GMT -6)   
I would do a strict sheldon's diet, if you wanna do a serious diet change to get you over the hump. Sounds like you could modify what you are doing now pretty easily to fit it, and get more and better nutrients in your body at the same time. Search vitamin E enema here. Have fun on your trip!!!!!
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Starting Immuran
Hydrocort/Rowasa/Vitamin E Enemas rotated
Probiotis/MSM/GreenTea/VitD+Ca/SuperDHA


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 7/8/2008 7:34 AM (GMT -6)   
I followed that diet for 2 weeks.....made me worse too.  I think if your UC is caused by an infection of some sort, that diet will help.  It will starve the bad bacteria out, but if your UC is caused by something else, it won't help.  It is always a good idea to reduce sugar, but your health is more important.  If you feel really crummy, can you add back a tiny bit of what you used to eat and see if it makes a difference?  Or you could wait it out and hope for the best.  I always wondered if I would have implemented the diet by weaning out sugar instead of going cold turkey, if that would have made a difference.  Anyway, good luck and keep me posted, I will be thinking about you and hoping you feel better soon.

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/8/2008 8:42 AM (GMT -6)   
Hi again, Lemonhead! I replied to your post in my other topic about the diet. I also wonder if eliminating those sugars cold-turkey is what made me feel so awful. I can't believe how much of it I was eating before I eliminated it. Since then I've some awful days, and some absolutely horrendous bathroom experiences. There has been terrible smelling gas and nasty, almost-black poop (sorry for being so graphic), which makes me wonder if my body is ridding itself of all those bad toxins/fermented bacteria.

For those who didn't see my other reply to Lemonhead, after I posted my sob story here I started feeling dramatically better. Last night I was symptom-free and this morning has been very good (mornings are always the worst for me, typically). I don't know if its the diet or the meds or what, but I'm more determined than ever to stick with it now that there is some improvement. Thanks for all the encouragement and advice!!!
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 7/8/2008 11:00 AM (GMT -6)   
Kiss520,

Diets are a great thing for many people, but it seems the best medicine is moderation, and knowing what your gut can and cannot deal with. I like the idea of supporting my own beneficial bacteria and have had success with that without heavy/intense dieting. I did read an article somewhere that stated your own beneficial bacteria almost genetically form or accomodate to their host, that is why I try to support my own as much as able. Good luck and I hope you feel better.

------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 7/9/2008 7:43 AM (GMT -6)   
kiss 520-just wondering how long you have been on the diet so far??
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/9/2008 8:36 AM (GMT -6)   
Today is Day 9... feeling pretty good this morning. Yesterday wasn't great, but there were slightly less BMs.
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/10/2008 7:08 AM (GMT -6)   
Update - yesterday I only had 3 bouts of diarrhea! This is the first time in weeks I've had so few. I don't know if its the diet, the medicine, being on vacation... who knows. But I'm happy to finally being seeing SOME improvement!!! Yea!!!!
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 

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