Struggling to accept diet changes. Do you have any advice?

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jenmach3
Regular Member


Date Joined Feb 2006
Total Posts : 34
   Posted 3/3/2010 2:17 PM (GMT -7)   
Hello everyone,

I was diagnosed with Crohn's nearly 5 years ago and I am 28 yrs. old. In that time I have seriously struggled to accept that I am different and that I need to eat differently than "normal" people. A recent CT scan revealed that I now have moderate Crohn's, but "moderate" only because I haven't been hospitalized. More than half of my small intestines are diseased. Yipes. I haven't responded well to any of the drug classes out there, and am currently taking Imuran again to suppress my immune system enough to safely take Humira. A few months ago I had an anaphylactic-like reaction to a Remicade infusion that resulted in the hospital calling a "Code Blue." I have been so frustrated with my body and immune system that I just don't know what to do. I've been experimenting with the Specific Carbohydrate Diet, and in that process I've realized that I have a few food allergies that I was never aware of- namely honey and wheat (which is definitely not on the SCD diet!- I'm weak!). When I eat these foods I break out in a hives like rash on my face and lips. Man oh man! I feel like I just can't catch a break.

I have a history of eating disorders, but I have been "recovered" for more than 5 years. When I think of doing a diet like SCD it really brings up eating disorder issues for me because controlling my food reminds me of being eating disordered and I get really depressed and irritable. I need to find a way to look at being on SCD and potentially "healing" myself as a positive thing, but I don't have enough support at the moment. I have plenty of friends and family who want to help me, but because they can't relate it's putting strain on all of us.

If you have any suggestions for me, support, experiences, anything at all, I'd very much appreciate hearing from you!

Thank you!

-Jenna

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 2:36 PM (GMT -7)   
I personally do not follow the SCD diet because to be quite honest, its just too restrictive to me. And to me this disease has taken so much, that I just am not really willing to go that far. But for some folks it works great for them. I have found that a low residue diet works well for "me". It is less restrictive and agrees well with my Crohns. Maybe you can google it and get some diet ideas from that. Just another thought:)
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/3/2010 2:44 PM (GMT -7)   
Jenna,
Your story seems very similar to mine. I have tried just about everything and nothing is working. I have considered the SCD diet because I feel an obligation to try it (I can't sit here and suffer and then be like "but I refuse to try that..." when I'm so miserable) and am waiting on the book from the library.

However, I REALLY don't want to do it. It just seems wayyyy too restrictive. I, too, have struggled with eating disorders, and am also a very picky eater to begin with. The way the diet is, you almost HAVE to be obsessive about it in order to follow all the rules and make all your food from scratch and all that...I kind of think that even if it physically helps, it might be to mentally detrimental and they'd cancel each other out.

Sorry I can't help you get a more positive perspective on things, but I just wanted you to know you're not alone.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/3/2010 2:49 PM (GMT -7)   
Aw, Crohn's is hard enough without having the extra eating issues thrown into the mix.  They are unavoidable when the basis premise of the disease is that your body is rejecting and not processing the food you are putting in it and you can't eat for days at a time, who isn't going to have some sort of issue?  Add any past dealings with that and I an imagine it's a bit tougher for you.  That being said, what I do is focus on what I CAN do for my body, I can eat and eat well - I make healthy choices about what is right for me and focus less on what I am giving up or taking away.  If I make a list of the things I have given up/try to avoid/recognize i shouldn't eat, I notice that they are all not great for me anyway.  Caffeine?  Atificial sweetner?  Dairy?  Meat?  Do I love those things?  Heck yeah.  Is my life as different as I thought it would be not having them?  Not really.  I have also gotten big into Macrobiotics and that has helped immensely.  The focus is on a big connection with your food and eating consciously - eating to nourish and stay in tune with your body, rather than shovelling in junk and wondering why you feel like crap.  I eat differently now and am feeling better.   
 
You can have an awesome diet that really nourishes and heals you and makes you feel wonderful - you just have to look into making the best and healthy choices for you as an individual, but I would strongly recommend at least checking out Macrobiotics.  It's more of a philosophy than a diet, and all about balance, which makes it easier.  You can also substitute lots of things - no wheat?  eat whole grains instead.  no honey?  try agave nectar instead.  Listen to your body - don't look at it as what you can't have, but all the delicious things you CAN have.  Even try a macro diet for a day and see what you will have. 
 
Good luck!  Surround yourself with lots of supportive people who love you!! 
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


jenmach3
Regular Member


Date Joined Feb 2006
Total Posts : 34
   Posted 3/3/2010 6:58 PM (GMT -7)   
Thank you so much, Nanners, 80schick, and wednesday2007. I really appreciate your taking the time to write me back. It does feel good to know that other people can relate and have been down the same path. I feel so attached to food. I equate giving up certain foods with giving up socialization, friendship, and fun. This doesn't need to be the case, but that's how I've been viewing it. Food addiction definitely runs in my family, though because I don't struggle with weight issues, I have felt less than motivated to change my behavior. I recognize that eating refined foods (flour and sugar) is extremely inflammatory and doesn't make me feel good, but I've used them as a drug. When I eat balanced, more macrobiotic diet like wednesday2007 suggested, I feel much better! Still, this has not been enough to keep me on track. I hope that this is just a learning process for me, and that in time I will feel more comfortable accepting food for what it is- nourishment, and not love, fun, well-being, etc.

Here's to a work in progress!

Thank you again,

-Jenna

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/3/2010 7:19 PM (GMT -7)   
the wheat is related to gluten so perhaps a gluten free diet can help...see celiac diets that are gluten free.

jenmach3
Regular Member


Date Joined Feb 2006
Total Posts : 34
   Posted 3/3/2010 9:33 PM (GMT -7)   
It's not the gluten for me- it's just the wheat itself. I just get a eczema-like rash on my face when I eat it now- and it's just developed recently. I've been tested for Celiac's since I have a few family member's that have that. Thank you for watching out though!

-Jenna

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/3/2010 10:35 PM (GMT -7)   
I follow SCD, and yes, you do obsess over it for the first few months (you have to check the ingredients of everything, even fresh meat at the store). With a little time though, it becomes second nature. I find the diet very easy to follow at this point (15 months in). I'm fairly certain I recall someone at the BTVC board (http://health.groups.yahoo.com/group/BTVC-SCD/) saying they once suffered from an eating disorder. I don't know if they still post, but it would be worth asking over there. I'll bet there is AT LEAST one person there who has been in your shoes and could give you some advise.

As far as being restrictive, I (perhaps oddly) don't really find it that bad. Maybe it's because I had such a limited diet pre-SCD. I think it would probably help to explore some SCD cookbooks/websites. There is an awesome array of yummy food to be had, but you must be patient and let your insides heal before diving into some of it. Looking at all the yummy pictures sure helped inspire me though, and I'm at a point where I can actually eat them now.

The worst part of SCD? Cooking everything. It's time consuming, and can be tiring. But again, with time, it gets easier. I feel kinda proud of the stuff I'm turning out (I actually made ketchup that tastes good), and am becoming a better cook. The second bad thing is eating out...it's very hard to do unless you eat at a place with a real chef that cooks real food (not chain restaurants that have everything pre-made or cooked from a box/package).

Now for some yummy recipe sites to help you see that there's plenty of good stuff to eat. They've all got pictures of the food too:

http://milkforthemorningcake.blogspot.com/ - the right side has a list of the recipes and whether they are SCD (if it doesn't say SCD, it's only gluten free)

http://www.comfybelly.com/scd_specific_carbohydrate_diet_recipes/ - again, not all are SCD, but most are, and she has them clearly marked

http://nomorecrohns.com/deliciousrecipes.aspx - all recipes are SCD

http://mrsedsresearchandrecipes.blogspot.com/ - I believe all are SCD

http://grainfreefoodie.blogspot.com/ - all are SCD

http://eatingscd.com/2008/03/10/eat-by-picture/

http://deliciouslygf.blogspot.com/ - it says GF, but I think they're all SCD too

http://heal-balance-live.blogspot.com/

And this is just a small sampling, there are many more sites. Take a look, and you'll see that SCD really won't deprive you of eating pleasure :-). Good luck!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/3/2010 11:52 PM (GMT -7)   
I have just recently started cutting out gluten in my diet and have found that there are a lot of things in the shops that are gluten free, are also wheat free too.And that includes some nice goodies like biscuits and things like that,which I am glad about because I do love my little treats now and again ;) Also you do get what and gluten and what free flour and pasta.Its amazing what you find when you have to!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 3/4/2010 2:18 AM (GMT -7)   
i guess ive been lucky, most of the things that bother my guts taste bad anyway.

the rest, like chocolate, i try to keep to a minimum. i dont expect myself to just not eat chocolate, that's crazy talk. as long as i make sure not to eat too much of it, my guts dont complain. i also keep a kind of mental scale in my head; bad things on one side, good things on another. for every bad thing i eat i need to eat 2-3 good things or my guts complain. so, if i want a piece of birthday cake, i need to eat a few quesadillas.

ive also come to associate foods with their accompanying reaction. just thinking about drinking mtn dew makes my fissures cringe, so it got really easy to stop drinking it.
Diagnosed with Crohn's late December 2004. Controlled but not in remission via ABT-874 (700mg infusion every 4 weeks) and Azathioprine (50mg daily).


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/4/2010 8:48 AM (GMT -7)   
Jenna,

Sometimes it helps to remind yourself that Crohn's is a relapsing and remitting disease and that whatever you eat, you will sometimes flare and sometimes feel better. So don't beat yourself up about not complying with what you think you "should" eat. If a food makes you break out in a rash, by all means avoid it, but otherwise, why not eat what gives you pleasure? There have been quite a few studies of diet in people with Crohn's, and aside from two specialized diet protocols (enteral nutrition and total parenteral nutrition) that are used to treat the disease, no other special diets have been proven to make any difference in achieving and maintaining remission. So you shouldn't feel you are harming yourself by eating a normal diet.

Sometimes making changes in diet can help us feel we have some control over the disease, but it's important to understand that such changes are not mandatory, and there's no reason to make them unless you feel that the advantages to you, personally, are greater than the disadvantages. Just my take on it.

jenmach3
Regular Member


Date Joined Feb 2006
Total Posts : 34
   Posted 3/4/2010 3:24 PM (GMT -7)   
Thank you all again for the feedback! I so appreciate your taking the time to share your experiences, opinions, and resources. It feels wonderful to know that I now have the support of so many people who know what I'm going through.

THANK YOU!!!!

-Jenna

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/4/2010 9:54 PM (GMT -7)   
Writer said...
There have been quite a few studies of diet in people with Crohn's, and aside from two specialized diet protocols (enteral nutrition and total parenteral nutrition) that are used to treat the disease, no other special diets have been proven to make any difference in achieving and maintaining remission. So you shouldn't feel you are harming yourself by eating a normal diet.


It will be very difficult for any of the crohn's diets to be proven because:

A. Who is going to pay for the study? No one's going to make money off of a diet, so it seems pretty unlikely anyone will pony up the money.

B. How could they possibly make sure that people follow the diet to a T? People make mistakes and accidentally eat things that aren't on the diet (ie. meat can be injected with sugar solutions (illegal on SCD), but not everyone thinks to look at the ingredients on a meat package every single time they buy it). Also, people fall off the wagon, or wrongly think that one little bite of something illegal won't hurt anything.

Basically, you just have to read the science behind the diets and see if it makes sense to you. If it does, give it a shot. You really don't have anything to lose, and if it doesn't work out, you can go back to eating whatever you want. I vowed to give SCD a 6 month trial, but I knew at 4 months that I wasn't going back. I still have dreams of eating non-SCD candy and cookies (gotta love dreams like that, all of the pleasure with none of the pain), but they just aren't worth getting back all my old symptoms (like oozing fistulas).

One last thought about restrictions (crohn's vs SCD). Today I took my bird to the vet. It was a 1.5 hour drive there, and 1.5 hour drive back. I ate the SCD lunch I brought on the trip home. Not once did I think about a restroom. That was soooo not the case pre-SCD turn.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/5/2010 1:11 AM (GMT -7)   
I think that you have noticed that the general consensus here is that there is not one diet that works for all of us. Infact, there are not medications that work for all of us due to Crohn's being such a personalized disease. What you need to do is find out what works best for you and stick with it. It never hurts to try diets because it is always good to eat healthy but realize that your good and bad foods are constantly going to change. I have certain foods that used to be fine that I can not tolerate anymore and from time to time other foods that just tear me up. Every G.I. that I have talked to has told me that until I am in remission I am going to have to experiment once in a while to find out what is good for me.
The most important thing you should realize is that diet alone will not control this disease forever. You will eventually have to have medication added to your diet to stop the damage being done on the inside. There have been so many people here and that I have met that thought they were cured or in remission due to a particular diet and stopped all of their meds. Sure they feel good because they are eating healthy and the side effects of the medicine is no longer there, but nearly every single one has landed in the hospital or emergency surgery due to the fact that the disease was still active on the inside despite no symptoms. If someone tells you that they have a cure all diet that wil help you, there should be a huge red flag waving. This disease is like a combination lock and everyone here has a different combination that will make it work.
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