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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/28/2008 2:23 PM (GMT -7)   
I was wondering about remission and food. For those who have achieved remission is  your food range broader when you feel better? I so want to be able to eat ketchup once again, but I haven't ever been in remission. :(
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/28/2008 6:04 PM (GMT -7)   
Hi I eat about the same stuff as I havesince DX, low residue and I eat ketchup. I think as we feel better we eat a little more stuff but there are lots of things I stay clear of and probably will forever so it doesn't bother me because I can eat and don't have pains now. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/28/2008 7:27 PM (GMT -7)   
Even in remission I was still careful... but the world of food did open up a bit for me. No ketchup, huh? How come - I mean - what ingredient do you think it is? Or is it just acidic-tomato-type stuff in general...?

My doc told me yesterday that I have a gluten intollerance, which I did NOT want to hear, but I'm going to try my best to go gluten free for a month and see what happens. Have you been tested for any food allergies? I know it's just one more stupid test, but if it makes a difference, it might be worth it.

I'm sorry you're having such a rough time... maybe try like an organic and/or gluten free ketchup from the health food store? I know the light at the end of the tunnel is hard to see some days, but it's there...
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 8/28/2008 8:02 PM (GMT -7)   
I couldn't eat much when I was sick, but once I stopped eating gluten, I actually could eat lots more. now I eat salad, raw onions, really everything but gluten.
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/28/2008 8:53 PM (GMT -7)   
I still eat ketchup..I'm not sure if it's a bad thing or not yet though. I'm definitely not in remission, but I just try and eat really carefully(minus today..I'm afraid of later). You know, the usual bland things like unsalted saltines, soup, water, white bread, rice, starch/starch/liquid/repeat the list/and so on. Every now and then I will throw in something different like ketchup for instance, or one bite of spaghetti though..I tried that tonight without knowing that my brother cooked his sauce with some sort of pepper so that went straight from my mouth and into the trash.
I don't know..I can tolerate things like blow pops(as far as I know) but not coconut macaroons or I can have soy milk and juice but anything beyond that is no good even if it's one hundred percent organic anc lacking anything that would normally not be tolerable(like too much carbonation).
I don't know really..it may just be a matter of 'in moderation or not at all' or I could be messing up all of the progress I've made which wouldn't make sense now that I think about it because I feel better so..
Maybe just try a little bit of ketchup and see? I stay away from anything generic though. I always go with organic or any special kinds with reduced sugar/sodium/fat/and or etc. for any food I can find so perhaps that would help you? I asked my doctor when experimentation with new food was allowed and he said it was necessary immediately and to keep the infamous food diary so I'm guessing we just have to start, keep a good record, and hope for the best. As long as we're on medication and try them in small amounts I think it's fine.
Apologies for the lengthy answer. I'm pretty sure I don't have a single connected thought in my head right now(lack of sleep? meds? both? God help me).
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/28/2008 9:52 PM (GMT -7)   
If you are not in remission, you will have foods that you are still eating that contribute to your problems. I mean, if you can put yourself into remission by doing a total enteral diet, then something other than the 100% predigested stuff must be causing a problem. I imagine that ketchup is one of the ones you know about - and there are several possible reasons: sugar - often not properly digested (sucrose, I mean) and if passed to the colon, it promotes bacterial growth; tomato - not an uncommon allergy; food color - another allergy possibility. You seem to eat a lot of starches which are not well tolerated by some, so they could be part of the problem. I don't know yet, because I have not reached the time I set to see if I can get clear of the reactions that caused my problems, but I think that it is possible to eat almost anything once the inflammation has cleared for long enough. I am judging by Jini Patel Thompson's book in which she describes a diet that allows a lot more than I could tolerate now. Right now, I am on the Specific Carbohydrate diet, but it may not be necessary for everyone. Yogaprof seems to be doing fine just by eliminating gluten sources.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/29/2008 9:22 AM (GMT -7)   
Just fyi I am in remission, but ketchup doesn't like me either. I do think it is too acidic for me. I miss it too.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


SouthPaw33
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 8/29/2008 11:32 AM (GMT -7)   

 

   Well for me i  have always loved food. I love to eat it and i  love to cook it. So since being dx'd with c/d I just decided to forgo the other. I have certain things I simply won't touch, but I generally go with the golden rule that if it can't eat me i will eat it. Have no problems with ketchup though... Will not touch dairy porducts though!!!


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/29/2008 3:00 PM (GMT -7)   
My brother was talking about spaghetti(apparently last night's was so spicy his stomach still hurt this morning. Glad I spit that bite out) and how to make it less spicy so he did some hunting and found out that adding baking soda neutralizes acid. Makes sense since it's a base :) Maybe something to consider when you want to have tomato based products. I'm going to look into it more anyway. I know if you add too much then the tomato taste is eliminated completely though and you get a metallic taste so...I'll mess around with the tomato/soda ratio. I so want to be able to eat spaghetti again...
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/29/2008 3:04 PM (GMT -7)   
Although I found this too so I don't know what to think yet:

http://dailystrength.org/c/Crohns_Disease_Ulcerative_Colitis/forum/789444-baking-soda

I suppose asking my doctor first would help.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/30/2008 7:22 PM (GMT -7)   
patientspider-I am highly intolerant of sugar, plus acidic foods and dyes. So right now ketchup is the worst thing for me. Plus almost everything out there right now. I've never been tested for allergies, but I know I have a lot of food sensitivities. Like LOTS. My doctors make me feel when ever I suggest anything that I am trying to tell them how to do their jobs. Which isn't the case. I just want to know more and if allergy tests would help I would do it. Sorry to read about your miscarriage. I didn't think I could have kids so my baby girl is a huge blessing. Actually tonight is the first night off for me. Grandma is looking after her. :) I wish you good luck on your next try and on better health.

LMills-the food diary thing. . . did it work for you. It makes me feel guilty because I have to be accountable for my actions and what goes into my mouth. I totally understand about the connected thoughts thing. I don't feel I have a single connected thought in forever. Thanks for the tip on the spaghetti sauce I will have to try that when I don't feel so sick.

Keeper-Are you finding that the SCD diet is working for you. I seriously want to try it. I have the book, have read it through and through, but don't have the discipline to stop eating bread. Any suggestions.

SouthPaw33-what did you mean by I generally go with the golden rule that if it can't eat me i will eat it? I can't eat dairy foods either.

Thanks for all your replies and hugs to you all.
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/30/2008 9:55 PM (GMT -7)   
The SCD diet is tough. There are some recipes that promise to duplicate pancakes, bread, cake and so on - they may look like the things that they are supposed to be, but the taste is nowhere near the original. Also, most of those recipes use almond flour which is very expensive. I have a couple of recipes that use squash and eggs and are fried (not good for everyone) or zucchini boiled and blended with a protein and flavorings (eg, zucchini, peeled, chopped and boiled, mashed with a can of tuna fish, add lemon juice, home-made mayo and salt to taste and Chinese 5 spice or cinnamon - comes out a bit like soup or stew). I find that it is not worth the trouble to make "bread" using the SCD recipes. Breakfast is fruit - bananas with almond butter or stewed apples or plums (picking them from our trees now - late this year). Lunch can be dry curd cottage cheese with mayo or home made honey sweetened jam (made with gelatin) or one of the zucchini variations with cheese. You can see that it is a major adjustment. I have just given up on the idea of bread or crackers. If it were not for squash and zucchini, I doubt if I would be able to manage. The squash I bake and keep in the fridge and when I want to use it, I take about 1 - 11/2 cups and add an egg and about 2-3 tbsp of almond butter and spices (cinnamon or Chinese 5 spice and salt or whatever you like) and blend and fry for about 6 - 8 min and flip (easy to say) to make something like a large pancake, but thinner which I use for a starch course substitute at lunch or dinner. Does it work? It works for me, but I am not a real test of the diet. My problems have always been minor in comparison, but still enough to be worth avoiding.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/31/2008 6:22 AM (GMT -7)   
I haven't had Crohn's long enough I think to really have an effective food diary, but I still use it occasionally when I simply cannot remember. My diet is so limited right now though that it's pretty easy to figure out what I can and cannot have off of the top of my head at this point. I'll keep doing it and see. It's highly recommended by my GI and three different dietitians that came to see me in the hospital as well as most of the nurses that took care of me so..I'm just going on that mainly.

Keeper-I'd be really interested to know more about the SCD diet as well. I've also read the book and have taken some of its advice. It's the only way I found cheddar cheese is something I can tolerate. I realize not all of it is valid for everyone. I don't know what I would do without unsalted saltines for instance, but I can understand how the basic principles are helping a lot of people. I really have just been wanting others' experiences though..it's hard to actually find people who are doing it.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/31/2008 6:47 AM (GMT -7)   
As far as spaghetti sauce goes, my family uses sugar instead of baking soda. Just a packet or two and it take a lot of the acid away.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


oldcronny
New Member


Date Joined Aug 2008
Total Posts : 14
   Posted 8/31/2008 7:30 AM (GMT -7)   
i have had crohn's for 22 yrs.  and have just decided to try gluten free.  Wow!! is all i can say. i wish i had tried this years ago. 
anybody have any advice for hemroids???

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/31/2008 8:41 PM (GMT -7)   
I was going to say that I am not a good test of the diet - I was never very sick. But then I thought back. I have had reflux problems for a number of years and that was only diagnosed about 8 years ago. I think that the reflux was the way that the Crohn's was most obvious back then. I had some other episodes of fatigue and brain fog where I would just sit in a chair for a day or two, but that always went away after a while. Shortly after the diagnosis I saw a naturopath and had a bunch of allergy testing done and I went on an elimination diet. The result was a modified SCD plan - I was having rice, corn and potatoes and a fermented rye bread (home made - bread machine), but no wheat and none of a number of other things that I found troublesome. That was pretty good (no GERDS) until I had an argument with a neighbor and that stress put me into a week of D and gut pains and fatigue and nausea and brain fog. Still not bad by the standards of some people here. I happened to be scheduled for a colonoscopy and had to fast for a day after the cleanout. (the colonoscopy was the first word I had that Crohn's was lurking and it was an accident - I was in for a gastroscopy because I was not using the PPI's the doctor prescribed for my GERDS and the doctor doing the scope suggested a colonoscopy at the same time - otherwise I still would not know what was happening). Anyway, the fast had me feeling better and after the scopes, I started some probiotics since I figured that I needed some rebuilding of friendlies in my gut. There was still a knot in my gut right where the scope report showed that the biopsy was taken. Once I was told the news, I found the SCD plan online and decided to do that. That got rid of the knot and I think that a number of apparently unrelated problems have improved. Currently I have no D or C and I have about 1 - 3 BM's per day of well-formed but small turds - probably because I am starving the gut bacteria (they can account for over half of the volume). Right now I am doing the final version of the diet (the most stuff allowed) and following it strictly except for some lactose-free (lactaid) milk that I am taking as an aid to the friendly gut bacteria. Sorry for the long ramble, but you asked for it!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/31/2008 8:48 PM (GMT -7)   
oldcronny - 'roids can be dealt with by using steroid suppositories or if you prefer a more natural approach, there are some suppositories called Fissure Heal that also can heal them. A link is found at the bottom of Jini Patel Thompson's web page: http://www.jinipatelthompson.com/

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/1/2008 5:46 AM (GMT -7)   
No, by all means ramble away please. I don't know many other people trying this diet so I am curious to hear what you try..
I'm seriously grasping at straws here!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/1/2008 2:42 PM (GMT -7)   
OK, one little trick is to use onion flakes instead of breading. It browns nicely on fried chicken or fish and it gives a nice flavor to things. An essential ingredient in my diet is home made mayo. It has to be made without sugar for the SCD plan, but it is easy, if messy to make (just don't be in a hurry, everything has to be done very slowly). Hollandaise sauce is another good one, but it is trickier to make, although simple enough once you have done it. It makes veggies much more interesting and makes a nice improvement over oil and vinegar dressing. Almond butter is another sauce/condiment/cooking ingredient that I use a lot. And the squash and dry curd cottage cheese that I mentioned above. I use almonds (the tinned ones - just roasted and salted) and dates for snacks and some desserts, and I have a coconut macaroon recipe that works (although they don't look much the ones I had as a kid). I'm eating a lot more fruits and veggies than I ever did before, but I find that I need the sauces and more meats to feel satisfied. The fruits and veggies are necessary to keep the bowels happy - otherwise there's not much there.

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 9/1/2008 5:58 PM (GMT -7)   
Keeper- Have you used the FissureHeal previously? The description of the product says "These suppositories contain comfrey – which is a fantastic wound healer."

I did some research and it sounds a little scary.

Internal usage of comfrey should be avoided because it contains hepatotoxic pyrrolizidine alkaloids (PAs). (Note, there are also non-hepatotoxic pyrrolizidine alkaloids.) Use of comfrey can, because of these PAs, lead to veno-occlusive disease (VOD). VOD can in turn lead to liver failure, and comfrey, taken in extreme amounts, has been implicated in at least one death.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/1/2008 9:51 PM (GMT -7)   
I can't claim to have tried the Fissure Heal, but the problems with comfrey are mostly from ingesting it. Applied as a suppository, it is not absorbed very much and it acts very locally. There are also varieties of comfrey that do not have the toxic components that are the source of concern, but I don't know what species they use in the formula.
There is a thread about suppositories (but not Fissure Heal): http://www.healingwell.com/community/default.aspx?f=17&m=1226969

Post Edited (Keeper) : 9/1/2008 10:54:19 PM (GMT-6)

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