question about nutrition

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tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/10/2010 11:24 AM (GMT -7)   
Hi guys! I would appreciate any input on this subject. How are people managing to balance good nutrition with issues of Crohns? I know many of the healthy foods tend to react badly with us. I am trying to figure out any foods that maybe people have tried and had success with. I know every case is different but would love some ideas. I have been on entocort for over 2 months and started my taper on Sunday. Already I feel symptoms creeping back in with my stomach being inflammed. I was up night after last with major cramping for an hour. I am just baffled why I am not able to bounce back from this flare without having to stay on a full dose of a steroid when I am being told my case is mild? And if I am being honest some of the minor symptoms creeped in even while I was on a full dose of entocort. My thought is that maybe my diet needs to change. Once I felt better I ate most things with little to no side effects so I must admit I ate more junk food than I should have. But I am so afraid to try healthy stuff for fear of blockage or even just pain. My Dr did not tell me any food was off limits but I have read horror stiores about fruit and veggies. I have a call into the PA at the office and should hear from them later today but any ideas you guys can give me would be greatly appreciated. I am getting a little frustrated. I was feeling so great, going to the gym for the first time in months and now I can feel the inflammation coming back. I am still relatively ok and am still getting out and about but I know if I leave it, it will get worse. Thanks everyone for reading.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 6/10/2010 11:44 AM (GMT -7)   
I'm a PA and I have Crohn's. I've been on all the meds and tried the SCD without much success. Switched my diet to align more with the paleo lifestyle and I can't tell you how much better I feel. Essentially I eat lots of lean meat, fowl, eggs (pastured or wild preferably), lots of veggies, and I strictly moderate fruits and nuts. No sugar, grains, legumes or dairy. I take 5000-8000 IUs of Vitamin D a day or I try to get moderate sun (30 min for me), and I sleep 8-9 hours a night in total darkness.

Everyone is different and you might have to tweak certain areas for you. This is what helps me; my blood work (including lipid profile), body, and mind all tell me so.

There are some misconceptions about this out there, so please feel free to ask any questions, my email link is active.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal and Canasa for 2+ years - developed an intolerance
6MP - elevated LFTs after 100mg, no effect after 9 months
Currently: Remicade (Nov '09), and Paleo Diet. Not quite remission, but so much better!


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 6/10/2010 12:40 PM (GMT -7)   
I seem to be one of the rare ones who can eat anything I like without it affecting me worse than anything else, so it isn't an issue with me. A little like Former58D I try to eat good quality protein such as lean meat, chicken, fish and eggs, along with some veggies, but then I probably throw the baby out with the bathwater by consuming a slice of cake, chocolate bar, or whatever - just cannot forsee ever being capable of giving up sugar. Or dairy.

By the way, for whatever it's worth, one thing which definitely does affect me is eating too much junk food. A single item won't do much, but if I eat too much over the course of a day or two, I will feel like utter $*** for hours and hours afterwards. Listless, no energy, bloated, and just generally ill-feeling, along with possible pain and gas. I might feel like that anyway, but it's definitely much worse upon eating too much rubbish.

I'm slightly hesitant to give food advice that I don't follow myself, but suggestions I've seen many on here give regarding fruit and veg include juicing, peeling skins, cooking veg until they're very soft and mushy, and eating soup - in those broken-down, mushy, peelless/seedless forms, you should find fruit and veg a lot easier to digest.

For carbohydrates, you don't have to go wholemeal to go healthy. Just try to cook them as healthily as you can; keep butter/cream to a minimum and use healthy fats for cooking where possible eg olive oil. If you can get King Edwards, bake them in their jackets and scoop out the flesh - had one tonight and it was beautiful. Or boil up new potatoes then add them to a stew or casserole - a stew is probably quite good for a Crohnie because everything is cooked for long enough to be soft and mushy.

I'm sure others will be along with better suggestions... ¬_¬

By the way, don't worry too much about the Entocort. Steroids don't work the same for everybody and the severity or amount of disease doesn't seem to change that. I've been on 3 courses of prednisone in the past, and each time it only worked at the highest dose before the symptoms started coming back. I'm currently on Entocort and the same thing seems to be happening, except that I don't think 9mg Entocort was as effective as 40mg Prednisone, even though they're meant to be equivalent doses. Just remember that even in the best-case scenarios steroids were never designed to knock you into remission and keep you there; they were only ever meant as a stop-gap to allow other medications time to start to work. If you're suffering symptoms while tapering that's a sign that your non-steroid medication isn't working as well as it should - or, perhaps, hasn't had enough time to start working properly yet. Something you need to discuss with your doc.

Lizard99
Regular Member


Date Joined Apr 2006
Total Posts : 192
   Posted 6/10/2010 12:45 PM (GMT -7)   
I'm different from everyone else.  I only seem to respond to fruits and veggies and lots of green juices (made fresh from home).  I swear I can't eat anything with chemicals or alot of animal fat.  I seem to do fine with olive oil and hemp seed oil and nut butters.  I have to be careful with the avocados but can eat 1/2 of one fine.  Whenever I go off this way of eating I run into problems, like eating a lot of fish and chicken.  Everyone's different but the best way to get nutrients is from veggies if you can juice them and tolerate it.  Good luck to you:)

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/10/2010 1:23 PM (GMT -7)   
Thank you everyone for these ideas!!! I love lean meat and do eat sirloin steak to help get iron into me. I typically half the serving right now so it doesn't bother me. Thank you for the reassurance on the medication. My thought was maybe the lailda was not doing its job. I have been on it for 3 months now so I am not sure how long before they consider it not to be working. That will be a good question for the PA when she calls me back. I did buy a juicer and am experimenting with different recipes to try to get nutrients. I was able to drink OJ for the first time in a long while!! I have overdone it on the junk food because for a few weeks i felt SOOO good that I could not resist. But, now I know better.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/10/2010 1:37 PM (GMT -7)   
I've been eating SCD for a year and a half, and think I have a fairly balanced diet. I could stand to eat more veggies, but that's about it. I've been experimenting with raw for the first time with success. Raw strawberries and peaches, yum!

Foods that always seem to go over well with me are yogurt, eggs, cheese, and meat. Almond butter is really good too.

I completely stay away from processed and junk food (except for some honey). That has probably been one of the biggest reasons my crohn's has gotten better. I have dreams at night of gobbling down candy and cake, but at least dream junk food can't hurt me ;-).
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/11/2010 9:37 PM (GMT -7)   
after i was diagnosed, fruits and vegetables very quickly became intolerable for me. over a decade later of barely eating them, i tried the makers diet, which actually has you eating a lot of them. it was intimidating cos now my diet changed to foods that i know i cannot tolerate. i gave it a try anyway and i was amazed that i could tolerate them! i eat them all the time now, with no ill effect or stomach ache, but i will admit that i do get gassy from the veggies (i cannot find anything to solve that problem). but then the trade off was a colectomy so i'll take gas any time.


spookyhurst - honey is only junk food if you have like more than 3 tablespoons per day and eat a ton of fruit and processed foods. only then does it become junk food cos you are getting too much sugar and fructose in your daily diet. for you, it sounds like it should not be a concern.

tewcute - ditch the ferrous sulfate. it irritates the stomach and causes constipation. talk to some one at a health food store about a better brand and type of iron. animal based forms of iron are the best.

former58D - the makers diet is a form of paleodiet and has done me well, so kudos to you for finding help from diet. i'll do legumes once in a blue moon in small amounts and i eat dairy sparingly, generally in raw forms and from goat and sheep as cheese, yogurt, and kefir. i dont drink milk and i'll make my own yogurt on occasion.

nicecupoftea - i'd argue with you about keeping butter and cream (ie saturated fat) to a minimum. saturated fat is good for you and you need it in your diet. the research shows that heart disease increased as society ate less saturated fat and more mono and poly unsaturated fats (ie vegetable oil). eliminate trans fat completely and be very wary of high omega 6 / highly processed commercial vegetable oils, which is what most people use (ie canola oil, soybean oil, safflower oil, corn oil) as these are found in all processed foods. olive oil should be used as a condiment. maybe i just have good genes, but i dont touch the processed stuff and sugar at all, i eat a ton of eggs and coconut oil and butter, i go out of my way to eat saturated fat and eschew vegetable oils and my cholesterol levels are very enviable. but like i said, perhaps i have good genes...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/12/2010 1:07 AM (GMT -7)   
tewcute I remember a thread started by a moderator here late last year it had great response and information. Google this "Healing Well What are your safe foods?" try it you'll love it. Rob
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/12/2010 6:57 AM (GMT -7)   
I personally follow a low residue diet all the time. When flaring I follow it strictly. Like now, when I am in remission, I do modify it some. I eat alot of chicken, fish, and turkey. Personally I avoid all redmeat as it is even hard for the healthy digestive tract to digest. It just kept causing me obstructive episodes, so I avoid it now. They have even found that its best to limit it in your diet. If you are going to eat red meat it should be VERY lean and only 1-2 times a week. I eat alot of fruits now, but avoids the peels, as well as avoid nuts and seeds. This diet is working well for "me". Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/12/2010 4:46 PM (GMT -7)   
you guys are the best.  Suprisingly my PA did not call me back Thursday as expected. I called Friday morning and they pulled my chart and they don't even show I called..hmm..I think with the Dr being in the hospital it is not as efficient there right now. But, I can allow one infraction! :-)   The girl at the front promised to have her call me first thing monday as she is off on Fridays. I am going to discuss with her my meds and my iron supplement. I actually took myself off of ferrous sulfate and then my GP started me on multigen. It is not giving me horrific issues but I do feel it is contributing this inflammation. I am starting to cramp again which I hate!! I would rather have spasms. at least they hit quick and fast and go away. I swear I had an ongoing cramp for 10 minutes last night. Luckily they have only been lasting an hour or so. But I will ask the PA about the suggestions I have heard here. I also ordered myself some books. One is your first year with crohns and the other is eating for a bad gut. I know not one diet will work for everyone but I am hoping this will give me more ideas. I am thinking about consulting a registered dietician here who has background in gastointestinal disorders. I need to call and verify that she has experience working with Crohns patients. If she tells me to eat roughage I will know she hasn't a clue!! shocked
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/12/2010 10:13 PM (GMT -7)   
Food tolerances are clearly variable amongst individuals, but there seems to be some common ground.

There was a study done by Virginia Alan Jones about exclusion diets in Crohn's disease

Dig Dis Sci. 1987 Dec;32(12 Suppl):100S-107S.
Comparison of total parenteral nutrition and elemental diet in induction of remission of Crohn's disease. Long-term maintenance of remission by personalized food exclusion diets.
Department of Community Medicine, East Anglian Regional Health Authority, Cambridge U.K.

The most common food intolerances in the patient population using exclusion diets alone for maintenance were as follows in order of most common to least. The number in parentheses are the number of patients with that intolerance in the study.

Wheat(28), dairy products(24), brassicas(16), maize(12), yeast(11), tomatoes(11), citrus fruit(10), eggs(10), tap water(8), coffee(8), banana(8), potatoes(7), lamb(7), pork(7), beef(5), rice(5), tea(4), fish(3), onions(2), chicken(1), barley(1), rye(1), turkey(1), additives(1), alcohol(1), chocolate(1), shellfish(1), swede (rutabaga) (1)
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


crohnskitten
Regular Member


Date Joined May 2010
Total Posts : 26
   Posted 6/13/2010 1:04 AM (GMT -7)   
Just nthing experimenting with different diets. I thought the SCD was crazy at first. Who could give up all that sugar! But I've found that after about three weeks I didn't miss it. And while I do let myself "cheat" when a pizza craving gets unbearable I definitely feel better when I don't mess around too much. The only "bad" food I keep in the house is tortillas for when I'm wanting a sandwich-type lunch. Making your cupboards free of temptation definitely helped me. Grocery shopping is a change because you really only go down the egg/dairy aisle, the meat section and the produce area. Pretty much anything processed is out. I'm having more fun with it than I thought, getting to try new recipes and eat veggies that I never could have tolerated before. I'd suggest picking a diet and sticking with it as well as you can for a month or so. I'm glad I gave it a shot :)

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/13/2010 2:59 PM (GMT -7)   
crohnskitten, you'll have to try SCD pizza sometime. I'm hooked! I make a thin crust from almond flour, tomato sauce, and use provolone/parmesan cheese. You can also make SCD crepes for sandwich roll ups.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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