Am I the only fat Crohns sufferer?

When I had extremely active disease, of course I lost a ton of weight and was very sickly and skinny. Now over the past few years I have gained a lot of weight (like 30 pounds overweight!!) and I find it really depressing and confusing.
I feel hungry all the time, I mean almost every minute of the day.
I try to diet, but almost all diets call for large amounts of salads, and that makes me so sick that after a few days I go off the diet because my stomach is not happy.
Am I the only fat Crohnny? If not, what reducing diet is good for Crohns patients? Is there anything natural to curb appetite?
I feel dumb opening up like this on a public anonymous forum, but frankly, you guys are the only people who totally understand the issues, and have given me meaningful, useful advice.

NO, you are not the only fat Crohnie. I am one too. I think it has to do with the fact I am on the constipated side of the disease.

I haven't found anything that works to lose weight consistently either.

I understand the frustration as I had lost 50 pds 2 years ago when I was really sick and have now almost gained it all back. I didn't need the weight as I hadn't even lost half of what I needed to.

I was also overweight before I got ill, and then lost 55 pounds while ill. Now I follow a full elimination diet, so my diet is quite strict. Several things have helped me with this regime so that I maintain a healthy weight and also so I don't become ill again.

First, I have the attitude that food is like medicine for my disease; if I want to stay well, I must eat what helps me to stay well in the amounts that are helpful to my body--so a committed attitude is number one.

Second, mostly I weigh and measure all my food. This helps me to eat a balanced and nutritious diet as much as I am able to. I, too, would like to eat salads and lots of vegetables (especially raw ones!), but I have had to accept that I can't. So, acceptance of my limitations and keeping track of everything that goes in my mouth is important.

Third, I take a lot of time researching and then purchasing healthy good food and then creating healthy good meals with it when I get home; it has become a lifestyle for me.

Fourth, I always have my next meal ready. I have to eat small amounts frequently, and because my diet is still really limited, I can't just grab something when I am out. So, if I'm at home, lunch is ready in the fridge-- if I'm out, it is with me packed with an icepack or kept warm in a thermos. I know what I am having for dinner each night and it is either made the day before or already prepped to be cooked quickly, so I don't eat something I shouldn't because I am hungry when I get home.

Fifth, I have trained myself to eat and enjoy most things low-fat and unsweetened and to use fresh and dried herbs, stock from cooked and roasted veggies, and cooked fruits to add flavour to foods. I also leave room for small (measured) amounts of treats that I can tolerate. This way I get to really enjoy the healthy food that I prepare and the occasional treat, knowing that I will stay healthy while enjoying it.

All of this being said, I still know the struggles of moderation. Two weeks ago I was food-testing corn products (not the vegetable itself, but cornstarch, meal, syrup etc.) It can take up to a week for symptoms to appear while testing grains. Well, the week was going well and I was enjoying cornbread (first type of 'bread' that I have had since August!), puffed rice squares (syrup,) chicken pot pie and wheat and dairy-free choco zhucchini cake (cornstarch). I overindulged in it all, because it was sooo good and such a change from my usual rice and quinoa based foods. So, when the seven days of this came to an end, whammy, I was sick--the worst I've been in months. And now I am not sure if it really is the corn-based foods or just that I broke all my rules and ate too much of everything and my digestion could not handle it all.

It probably was a combination of the two, but now I won't know until I test again (sigh), and I won't be testing corn products again for a long time!

Fortunately, I am better again (yay!), but apparently, I still need reminding of what my body does and doesn't like. So, humbly I go back to measuring rice and quinoa and veggies and soy milk and chicken and non-dairy chocolate (oops)--well, I gotta enjoy life.

Good luck on your journeys to a healthy weight. :goodluck:

Wow Happy - hats off to you! You sound terrifically organized and disciplined. These are not the first 2 adjectives that would come to mind when describing my personality!! But I WANT to overcome this. I feel really bad about myself, and I have no clothes, and I feel sluggish and gross... and I am sure my diet contributes to my disease.
But each time i cut out sugar, wheat etc. it lasts around 5 days and then I convince myself that whole grains are really healthy (so back to whole wheat bread) and dairy is good in moderation (back to yogurt and cheese) and people need to be happy (back to cake and cookies and coffee). sigh.
I am a very good salesperson, when it comes to marketing a reason for breaking a diet.
How did you start the elimination diet? I once did macrobiotics and it was really good for me. But it is very hard to plan and cook all these meals (while cooking 'normal' food for picky teenagers). I do fall for the exact things you warn about, like eating because I am starving and there is no easy food available. I do need to have meals ready in advance.
What do you do with quinoa? (nothing corn based is good for me. i don't even do well LOOKING at corn products, lol). Do you eat sprout bread?

Hi Jobell,
I started the elimination diet after using liquid enteral nutrition (EN) to induce remission, so I was not eating solid food.

You can read more about the process, if you are interested, on this link: http://www.crohnsforum.com/showthread.php?t=31028

If you want to try to eat healthier without using EN first, I would recommend keeping a food and symptom diary (you can get apps for these if you are a digital-type person--I'm still pencil and paper mostly) first. So just like you know that corn products are not good for you, you find another one that you know is not good for you and eliminate it, but you need to make sure that you still have good nutrition, so you need to learn how to substitute other (safe) foods for the item that you are eliminating.

It is more complicated for sure to cook this way. Just start gradually with one thing. For example, a family meal with spaghetti sauce looks like this at my house.

Cook ground turkey. Have prepped carrots, onions, small zucchinis (smaller seeds) the night before and cook them in a separate pan. I reserve some turkey for me (can't eat the tomatoes), combine the rest with the tomatoe sauce and serve with the extra veggies for the non-picky eaters and for me, and without for the pickier ones (I've tried pureeing them--still no go). I get rice pasta; they get wheat pasta. My sauce is what the veggies offer plus leftover stock from something else and some herbs. I cook extras every night, so I have lunch for me and possibly dinner the next.

Basically, alternate nights I am focusing on 'them' and then 'me', so I have food in advance for me.

I use rice and quinoa just like wheat: porridge, crackers, coating, side dish, as flour in baked goods, and treats.

I cannot eat breads yet as I have not tested yeast.

Both my kids are at away at school now, so cooking has become easier for me; however, I still send a lot of food to them, so I often cook this way even when they are not home! :ywow:

This question is asked on this forum on a fairly regular basis, so I think it's safe to say no, you are not the only "fat" Crohnie.

Wow! You are disciplined. I have never went to the extremes you have but maybe I should. Couple years ago I was training for marathon having lots of issues, I studied up on my own an went to a naturalistic doctor that put me on a diet. It was too much an very expensive but I did learn from it. I then went on vacation ate lot of junk grease fast food. I was sloop sick on return trip home. I then took what I'd learned an stuck with it with occasional cheat. I did great never felt so good. I got injured an went back to old ways have been yo-yoing since with flares never gotten to that feeling again b/c I have not stuck to what I know I should I recently convinced myself that beer is only going to be a rare...rare.. Treat. I think that an other things have caused my recent flare I do notnknownwhy I am unable to get back to 100% compliance with diet except self reward vs sabotaging. I go through periods of why can't I just be normal whine whine...but bottom line even if I/ we were normal we would still feel better eating healthy thanks for this above statement you made it has been an inspiration for me to do better!

I don't get symptoms as directly as some of you do. I find if eat 'badly' for a few days or a week, I will suffer later. Raw vegis and salads and/or beef will lead me to a sleepless night feeling obstruction and sometimes vomiting.
But, other than that, I don't see a direct relationship. I am a carb addict (thus the fatness!) and I know that when I avoid sugar and flour I feel much better, but I am not sure if this applies to only wheat, only certain forms of wheat... (I seem fine with white bread which is annoying).

I love that idea of spaghetti, but wow, that is at least twice the time I take to cook. I am a pretty lazy cook (unless I am home alone and feeling indulgent). I do think I will try that Turkey dinner though, it sounds doable, and it would leave me with another meal afterwards.
Do you also eat chicken, Happy? Do you eat all types of cooked vegetables? Any grain or just rice, and is it brown or white rice? Do you use soup stock of your own for flavoring?

Normally, I'd consider myself one of the "thin" Crohnies, but something certainly changed in my metabolism all of sudden.

I went out and bought a few pairs of pants last month because nothing I had fit me. None of those fit me now either. I gained 20% of my overall body weight in two months. I had to breathe deep for the last belt position this morning.

Anyway, I wanted to drop in and say there is no "normal," especially with IBD! There are plenty of all sizes. At least my intestines seem to be working again.

Ho Jobell. I too am a 'fat crohnie' and it drives me crazy!! When I was first diagnosed at 13, I was tiny and very under nourished. From the first dose of steroids I was put on, I have struggled with my weight. Even when my Crohns is at its worst and I suffer from D & V, I don't seem to lose more than a few pounds here and there. I def crave carbohydrates when i am having a flare up, which is probably the worst thing to eat but I guess it's because when I'm ill my energy levels are low and carbs give you that instant boost of energy. ....maybe?!?!
Like Kllyeve, I suffer badly with constipation (my record is 3 weeks without going to the toilet!!! Ouch!) and I think that must play a part in my weight and energy levels.

Waving chubby hand....here I am!!! I quit smoking 2 years ago and gained weight I did not need. And then of course the Prednisone just upped that and upped it again twice. I'm now being very cautious about my food intake and am slooowwwllllyyyy losing it. I've been overweight since menopause in my late 30's, yes I'm an older crohnie. If I could drop 30-50 pounds I would be soooo thrilled. But I'm working on it and being careful about what I eat. Lost 7 pounds since 1/1/12. And it's staying off, so far. No big tricks. No fats, no sugars, no snacks, lots of chicken and fish. Somehow it's working.

Wow Judy, so proud of you! wish I could say that (or do that). You quit smoking - probably the single best thing you can do for yourself to improve Crohns. And I know how hard that is having done it years ago myself (took me around 13 tries!!). I am also post-menopausal, so I thought maybe that is the reason for my metabolism change. But whatever the reason, it is not fun being fat. I had one relative actually say to me, "I am surprised you actually have Crohns, because most people are really skinny with that illness, and you look too fat for it." well, gee, thanks for that.

I was a size zero after surgery (even shopped in kids dept. once), and i shot up past so many dress sizes, i didn't even bother to stop and visit them all on the way! I guess that was a good sign that my stomach was working, but I really overdid it. Getting back down is HARD.
What do you eat for breakfast? for snacks?
I will do oatmeal or egg for breakfast, and do ok for lunch (cottage cheese, vegis, cheese and one thin slice of sprout toast, a salad which makes me sick eventually) and dinner is ok, protein and salad and cooked vegi. then after a few days I fail. figure I can't eat the vegis so I will eat healthy carbs (whole grain toast, rice or whatever) and then gradually end up eating chocolate croissants and apple turnovers... yum! and homemade cappacino with cinammon on the frothed milk, double yum.... well, you see how it goes. I need to have ready healthy, good choices for me prepared to eat, so I don't fall. But i don't even know what those choices are! I need a cook!

Hi Jobell. I eat oatmeal or one white toast w/one scrambled egg for breakfast. Coffee and OJ. No am snacks. Lunch is
1/2 a chicken or tuna or egg sandwich with 123 slim Fast. Dinner is usually Lean Cuisine sometimes with one slice of good white bread. I always have a cooked chicken in the fridge and take a few bites off it during the day, and in the evening for my snack. One day a week I'll eat most of what I want. But I NEVER have salad, and am very careful about veggies, go light on the cheese, no grains at all. I'm really very serious about this weight loss thing this time around. As soon as weather warms up, I'm walking again. My body hurts all the time now, I really have to get serious about my health.

Yeah could lose quite a bit myself. I eat oatmeal every morning and coffee , cream and Stevia instead of sugar. Need to exercise more and i was on a roll (pardon the pun) but laid off since I had the partial bowel obstruction. I too lost 40 lbs in my initial dx but was told not to get under weight , need at least 10 on the body..incase of more weight loss. Well hell that didnt happen. Gotta get it off, the knees dont like it.

I am on entocort which I think is not helping the weight issue. Although it is supposed to be just working on the ileum, apparently some articles I read said it still does change how your body handles sugar. I really haven't felt I ate that out of line. I've been on it since July and have gained 30 pds. I am weaning off it now since I started Remicade so I am hoping the weight is going to go down.

I am also going to see a Dr who specializes in Bio Identical hormones to see if my thyroid hormones and female hormones can be tweaked to help the weight - my sister saw this guy and is losing weight a little more easily.

Girun, welcome to the forum and thanks for the thanks.

Jobell, I just eat the cooked vegetables that I have tested to be OK for me: onions, carrots, round fresh peas, asparagus and zucchini. I eat quinoa, rice and, I forgot to say, oatmeal for grains. I eat many varieties of rice: plain white, jasmine, basmati, brown and sprouted. I also eat chicken, fish and eggs. Yes, I make my own soup stock--either fish or poultry with the veggies, spices and herbs that I tolerate.

Yes, it can be difficult to tell if foods that we are eating are causing any problems. Because I started with the enteral nutrition (EN) first, I am quite certain about some of my food triggers. However, many people find that diet does not affect their disease.

I am major yoyo. I wil be healthy for amwhile get into excersice be doing great then pow. Get sick/depressed on prednisone balloon up. Have the darndest time getting back on track. I hate being too heavy feel betterntoo when at decent weight. Like my husband said I get on the carb crave an can't get off I signed upnfor warrior dash was doing good training an eating better then now have lower disease totally fallen off bandwagon need to get back on though b/c dash is April 21 an I can't let friend I signed up w/ down.
Good to hear others struggle w/ same issue. Sometimes imjust feel like I. Am out of control:>

Yeah, Girun, I can yoyo too. Thank goodness prednisone is not in my life, or I would be a hippo! I need to lose at least 30 pounds (ok, man up, be honest, more like 40).
cringe.
Happy, you have inspired me. I have had this illness for 12 years and still haven't clearly identified my trigger foods! I just started today with ensure, and will do 2 weeks to clear myself out. then I will re-introduce foods gradually and find a balanced, healthy diet that works for me. Did you introduce oils, spices and herbs one by one also?
The only thing I hate is that Ensure has all this corn syrop and gunk that is VERY unhealthy.... but what can you do? i am not going to live on water alone!
Do you eat any soy products? Oils are ok?
You know what would be super? A retreat for Chrohns patients; with special diets, yoga, meditation, vitamin therapies, educational sessions, discussion groups, cooks to prepare the food...
Maybe I have just found a business idea!
I think we could come closer to managing our illness if we pool our knowledge, ideas, experiences and take a break from the stress for a couple of weeks. Instead of Rehab centers, or fat farms, it could be a crohn's country resort educational vacation.

Instead of Rehab centers, or fat farms, it could be a crohn's country resort educational vacation.

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Hey, I am in!

wow Jobell, I'm in too.

I am in too that sounds like just the thing. I am not good like I said sticking to diet an actually justnfrom different things I've read an a nutritional guru, I learned that I should stay away from red meat,pork,fried foods,sugar,alcohol,limit caffeine,corn irritates ESP popcorn, greasy foods, chips etc unless baked an only in moderation, sometimes milk products, no spicy foods. One of my patients told me black pepper was the worst for him. I'm not big pepper fan anyway so not so sure there. It has really been an experiment. The nutritionalist put me on an extreme diet. That was too much for me an he was real expensive. I found just if I really watch an try to stick with healthy foods low gas producing foods an stay away from above I do well. Has anyone heard anything bad about peanut butter. One of my friend said that they told a child she knows that has crohns he will never b able to eat peanut butter again? Good luck jobell let me know how it goes

No Jobell - There are quite a few of us here. Especially those of us on steroids... yuck... there's no way out on that.

I just recently was "diagnosed" with a fatty liver... which was more of an informational thing and so I'm on my way to a weight loss group at the hospital that specializes on people with different diet needs. Maybe you can ask your doctor for some advice on dropping weight safely without causing you to relapse.

As an aside, I'm watching the movie Fat, Sick and Nearly Dead and it's all about juicing which my GI is a big fan of both for weight loss and for bowel rest... oh how we need to rest our bowels!!!

Cheers!

I am a slightly smaller than Rubenesque Crohnie. I have Hashimoto's and am on Synthroid, and have insulin resistance. Several things contribute. My diet to address the insulin resistance sometimes conflicts with what I can tolerate due to Crohn's symptoms. Also, the fatigue and pain from the above and also fibromyalgia make it difficult to exercise. I have lost 30 pounds thus far, putting me just above 200. I need to lose 30-40 more to feel healthy. I'm 5' 10" and large framed. You can say amazon, everyone else does lol.

DX Crohn's June 2011
Entocort
Pentasa
Lyrica
Wellbutrin
Effexor
Levsin
Januvia
Prilosec
Xanax
Flexeril
Synthroid

Any one of us who's spent a fair amount of time on prenisone are or have been chunky. Because I am 5'4", and small/medium frame, its really noticable-even 10 pounds looks like alot. And having a hysterectomy and in the midst of the change at 39 thanks to Methotrexate doesn't help. I get fed up with some people's running sommentary on my weight fluctuations.

But to quote Dr. Suess-"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind".

I'm a fat Crohnie too. At one time I was up to 210 pounds. I'm only 5'5. Now I normally sit between 155-160. I lost the weight by cooking more from scratch. Example: chicken tenders. I bread my own. Dry ranch dressing mix with panko bread crumbs. My husband even loves them. I experiment with different substitutions.
I own a lot of cook books, and love reading recipes. I enjoy slow cooking chicken too. Eating less processed food helped me lose it. I actually lost 10 inches off my waist before I lost a pound. I don't swell as bad, and it makes it easier it pinpoint what has triggered a flare if you know exactly what you put into your food.
I wish I was as disciplined as some of you all. I start getting really busy, or just tired, and the cooking stops. But after the past week I have had, I have decided just to not let quick foods into my house anymore.

Part of my problem is that since my surgery (years ago!) I am constantly hungry. It seems as if the starvation beforehand when I couldn't eat somehow affected the natural mechanism in my body to recognize when I need or don't need food. I am always battling hunger. Since I started a liquid diet it has improved a little, so maybe I am finally going to conquer this. I seldom eat out, my big problem is nibbling at home (a bite of this, and that, and the other... and I simply ingest too many calories).
Lately I have joint pains and I wonder if it is partly caused by overweight and stress on joints (knees, hips).

Weight Seems to always be an issue with me. My weight fluctuates all the time. When I am sick and cant eat I lose pounds fast. I think my biggest problem is once I feel better I want to just eat everything

amorin, You're in Portland, Maine? Hooray, another Mainer! I have a hard time with weight too. I'm a comfort eater, I think I've come to realize this only recently. I'm really trying hard to lose some weight now though. It seems as though if I blink too hard I can put a pound on.

This is the first forum I've read! As a chubby crone I think I've felt my peeps!

I think I eat a lot because I've bee so exhausted all the time I've hoped food will make me feel better. And I've been so exhausted I have no energy to eat something that doesn't come out of a bag.

Feeling better for a week (just started methotrexate injections) so maybe this can change? It felt like a big deal to make my own granola, that's all I can say.

JudithC said:

amorin, You're in Portland, Maine? Hooray, another Mainer! I have a hard time with weight too. I'm a comfort eater, I think I've come to realize this only recently. I'm really trying hard to lose some weight now though. It seems as though if I blink too hard I can put a pound on.

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Yes I live in Portland Maine, and with all the great resteraunts around it hard not togo out and eat. Lucky for us it has been super nice out so I have been getting out to walk. Just 3 months ago I was wearing a size 4 now I am much much bigger. Loosing the weight is easy when I'm sick but keeping it of when I feel good is the hard part.

We also have to remember that sometimes we may be too ill to exercise properly. Surely that contributes to our weight gain. I know I have had health issues that ruined my exercise regime for 4 months, and I feel awful. So hard to get back into it (like all my muscles have vanished! in 4 short months).
We should make a Crohns weight loss support group here. I feel really alone when I try losing with other groups, because they don't understand any of my dietary issues (they just tell me to eat tons of salads).
this week I lost 4 pounds. My goal is around 40
I aim to lose 2 pounds a week, nice and slow, and build up to exercise 3x a week weights, yoga, and cardio.

I hate trying other support programs. I am a member of a weight loss sight. Other people would leave comments telling me I was eating properly and I shouldn't complain if I wasn't going to stick to a diet. Some were down right hateful. I had to explain Crohns over and over again. It was so frustrating. I don't want to be judge. If I am having a flare, like now, I don't want someone telling me I need to eat more calories and more veggies and fruits all the time.
Before Crohns I was a healthy weight, ate tons of veggies, and loves it. Now I stare at my shopping list trying to decide what to buy cause everything hurts. I do need to start walking again.

Oh Amberaut, I do hear what you are saying. This site has very little judgement, amazing! I'm very thankful that I found it. And exercising, of course, is going to be great, as soon as my energy level gets up there a bit, and the City installs outdoor bathrooms along the walking paths. LOL

That's exactly why I don't walk through my neighborhood anymore Judy! I have a treadmill I bought from my sister for cheap. I can hope off at anytime.

Being overweight is not an issue i've ever had to deal with, it's been the opposite my whole life, but i'll throw in my two cents worth of suggestion.

I've been paleo for almost a year and am loving it.
I spend a bit of time researching and have to say as an overweight crohn's sufferer you probably won't find a better diet.

here's a couple of links, one has Gary Taubes talking about carbohydrates and obesity.
http://www.youtube.com/watch?v=KH9079LV4tY
i don't know why this link starts in the middle, take it back to the beginning
(carbohydrates > Insulin > fat)
and another about carbs and autoimmune disease (among other things, she has MS and is a doctor and is Paleo)
http://www.youtube.com/watch?feature=player_embedded&v=KLjgBLwH3Wc

Wow Hugh, checked out site you suggested. Makes a lot of sence. I have looked into the eat clean diet it is very similar, the only thing I don't think I could follow is organ meat. Have tried liver do not like it but I think the information was very helpful. The doctor that came up w/ paleo diet has an amazing story. I think there is something to eating more the way that nature intended. Only makes sence that processed foods can be harmful. Thank you Hugh for the information, I am def. Going tomtry tomget on the right track an eat more toward paleo

@hugh: this paleo diet keeps popping up in my life lately, never heard of it before a week ago - may be a sign for me! I just find that bread seems to be one of the things I can eat easily, so wonder if that means bread is good for me or not (i know it keeps me fatter).
My main question about any low-carb diet is this: all cultures, in all regions of the world, seem to base their diet naturally on a locally grown carb, small amounts of protein and many vegetables. So why would it be 'natural' or 'right' to eliminate carbs? Is it because our carbs are over-processed today? Or because we are eating carbs that are not appropriate for our geographical region due to global shipping?
Some of the healthiest communities (low heart attack rates, good healthy weight, no stomach issues) have a carb as THE central item in their diet. Couscous or pitas in middle east, rice in Asia, corn products in South America, wheat or grain based breads in most other countries. Or is it that once you have an existing problem, you need to cut out carbs?

Jobell said:

My main question about any low-carb diet is this: all cultures, in all regions of the world, seem to base their diet naturally on a locally grown carb, small amounts of protein and many vegetables. So why would it be 'natural' or 'right' to eliminate carbs? Is it because our carbs are over-processed today? Or because we are eating carbs that are not appropriate for our geographical region due to global shipping?
Some of the healthiest communities (low heart attack rates, good healthy weight, no stomach issues) have a carb as THE central item in their diet. Couscous or pitas in middle east, rice in Asia, corn products in South America, wheat or grain based breads in most other countries. Or is it that once you have an existing problem, you need to cut out carbs?

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Firstly, i'm not the best one to ask, i stumbled onto Paleo from the SCD diet, and it was just what i needed (1 year on and i know what happens when i stray)

It's called paleo because it refers to what our Palaeolithic ancestors would have eaten, before we started farming grains and animals (neolithic).

We ate the 'paleo' diet from about 2.5 million years ago till about 10,000 years ago, before that we were probably grazers (with a side of bugs).
It's what we evolved to eat.

Then we discovered that if we cooked grains they were no longer poisonous (technically they are just much less poisonous)
Farming is what allowed us to settle down, stop roaming and start specialising, so it probably has alot to do with the mess the planet is in.

We haven't evolved to deal with grains, sugar, dairy, and beans (and certainly not processed foods containing grains, sugar, dairy, and beans). Some are much more susceptible than others, although it looks like most chronic diseases can be put down (at least in part) to grains and sugar

There is a huge range of diets that people call paleo and you have to work out for yourself what you want to call paleo.

This link covers the evolution of ourselves and our diet
Loren Cordain - Origins and Evolution of the Western Diet
http://www.youtube.com/watch?feature=player_embedded&v=5dw1MuD9EP4#

Dr. Paul Jaminet and his wife Shou-Ching, a Harvard biomedical scientist have collaborated to create a refined Paleolithic diet called "Perfect Health Diet"
and he allows white rice and potatoes in moderation so it might be an easier introduction.

Google, take a grain of salt though because you'll meet people who swear coffee is paleo

After all that i find there is a wiki, check it out

Ha! that is great! cavemen sitting around sipping a nice Java brew....lol. surprised someone doesn't make a case for paleo beer.
I am not quite ready to go paleo, but I have committed to trying a gluten and sugar free diet.
I must say I feel fantastic. Very little pain, much better stomach condition, less bloating... it is pretty incredible.
Can't decide if I should go in mourning for the lost cupcakes, muffins, cakes, cookies... never to be ingested again. Right now I am feeling too upbeat to get depressed.
I went to my favorite coffee shop today, and had already talked myself into breaking down 'just once' and having a muffin, when I found they had a DELICIOUS gluten-free biscotti. yay! (although it had sweetener at least it was a start).
so I am not sure about the whole Paleo thing, which seems a bit dramatic for me at the moment, but the Gluten-free choice is 100% improving my situation. I am astonished.

Yep, I am on medical leave so actually have time to work on my diet. So I am also trying the "almost" gluten free, dairy free, low sugar thing by trying to follow the Eat Clean diet. I have noticed some improvements - especially in the gas/bloating area.

HAd some greek yogurt last night which is not agreeing with me - so I guess dairy is back off the menu. Siiigh I love dairy

kllyeve said:

HAd some greek yogurt last night which is not agreeing with me - so I guess dairy is back off the menu. Siiigh I love dairy

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commercial yogurt is usually only fermented(?) for about six hours and then has milk powder added to thicken it (especially greek style) - So you're getting a large dose of lactose.
SCD diet recommends yougurt BUT only if it has fermented for 24 hours so the lactose is very low

hello everyone i am 29 yrs old and diagnosed almost a yr ago.as i read i see i am not the only one who is a heavy person with crohns .my weight was 230 and now down to 180.everyday has been a rollercoaster its crazy how ppl take so much for granite.does anyones stomach swell during a flare i have been swollen for 5 days and no relief...thanks

Hello,

I am now 22, and admit to being quite a fattie as I like to call myself, with big drumsticks for thighs and a gruesome belly since I was ten. I was extremely skinny and muscled when I was around 8-10 years old, but before I began to have my period at the age of ten on New Years day, I began to have major cramps to the point where I had frequent trips to the hospital. As soon as my menstrual cycle began, my thinness just went down the gutter as I started having a hormone overload and gained weight despite I was exercising and dieting consistently. My period never came normally and my weight either stayed or fluctuated high. For years to come, I was fat with up to 80 kilos, then I was diagnosed with Crohn's at the age of 18. Over the years since I have been treated for my inflammations, I have been able to somewhat control my weight and have gone down to 65 kilos and kept it around that area.
Though I still hate my body for the way it looks, I am constantly trying to diet and work out to loose the body fat. Whether its disease related or not, I know I can beat it to the point that I will be fit and pretty somehow..

kisses, Aya

Another overweight IBD sufferer gets into the boat...
I haven't been able to take the weight loss plunge yet...I'm waiting until I get into remission to start making myself miserable by starvation.
And to all of you coffee drinkers...take some for me...I haven't been able to touch the stuff in over a year. Same with oj. Or any fruit other than an occasional bananna.
To all you juicers...I'm going the cheaters way and using V8 veggie juice (yes, I can tolerate tomatoes) before I would invest in making homemade and I must say, I feel like I have better energy when I've had my early afternoon juice!
The greatest was my last hospital stay I was admitted thru the er...when right in front of me, one of the interns says, "She's too fat to have IBD..." (I'm about 180ish but way too short to pull it off) I was on morphine and I guess she thought it made my ears not work. So I said, yeah, and your too dumb to be a doctor. Saying that to her made me feel better than the morphine. :ytongue:

uhmayzing you just made my day! I love how you told off that intern... people can be so ignorant and obnoxious sometimes! Great comeback.
i tried juicing for a bit, but I am sadly too lazy to do it seriously. Also, healthy stuff like greens take a ton to make a little 1/2 cup, and they taste pretty gross. they taste like they look actually, green, frothy, scummy little drinks. I know you can blend with yummy fruits to try and 'hide' the greens, but, well, what can I say, I still prefer my homebrewed coffee.

I'm chubby for a Crohnie.
My legs and arms are like little sticks.
My tummy - very chubby, complete with it's own front porch!
I've lost 10 kilos since coming off pred and post surgery.
You can only tell because my face is no longer chipmunkish.
I'm always wary of getting too skinny as a flare just strips the weight off you.

I just got out of the hospital for 4 days with a flare. Just got put on prednisone for the first time. Had lost 22 before the visit, and gained most of it back within 4 days of fluids and steriods!!! I am so depressed by this, and was also told I didn't look like the "normal" crohn's patient! That made me feel even worse!!! I am hoping the prednisone is just a short term to get me under control, but now they are treating me for anxiety as well! Seeing the dr in a couple of days and hope he takes my concerns seriously. Have struggled all my life with weight and can't handle the depression from all of this. Any helpful tips would be appreciated.

Hi, first of all, the Prednisone is usually short term, and its weight giving properties go away after you stop it, so please don't worry too much about that. It probably also is a large portion of the cause of your anxiety. Pred has so many wonderful qualities (NOT). But it definitely will help get your flare under control, which is the number 1 reason to use it right now. Once that is achieved, you can focus on the weight again if you want to. I'm a chubby + chronie myself and I have to tell myself loudly that all I can do is keep trying. Good luck to you.

Thank you! It is so nice to know that I am not alone! I am just hoping and praying that the dr will get me back on track without too much more weight gain. It sure does suck to not only have a diesease that has no cure, but an issue with weight as well. I know I have been plenty sick in my life, and spent many countless hours away from my life in the bathroom with C, D, & V!!!! Glad I found this site!

I'm with ya too, Jobell! I'm heavier than most of my friends that are my age, which annoys me. Sometimes I joke that I thought having Crohn's meant I'd lose the weight I've been wanting to lose. Admittedly, though, I'm only about ten pounds heavier now than I was at this time last year, when I was (unknowingly) in the midst of a full blown flare resulting in emergency surgery. I've also come to terms with the fact that I'm just naturally exceptionally muscular for a female and tell myself to be glad that being sick isn't eating away at my muscle mass too. Since surgery, I've found myself having more cravings, typically for unhealthy foods. For example: I made my parents order pizza approximately 6 times during the month when I was in and out of the hospital. I found a really cool chart that sort of helps me explain/address my cravings. I've noticed I crave sweets A TON despite the fact that I try and eat protein and things such as spinach on a regular basis. I also notice that I can see, for example, completely undigested pieces of spinach, etc. when I use the bathroom, so I'm working on trying to avoid giving into my cravings and supplementing instead with a healthier option! If anyone's curious, this is the link to the chart:

http://www.infofit.ca/school-for-fitness-professionals/craving-that-try-this-instead/

I'm currently at the most I have ever weighed...even more than when I was pregnant.

I have had tons of cravings since I got out of the hospital too! No surgery yet, but hoping they won't last long! I certainly can't afford more weight gain after the stay and the drugs! I don't WANT TO BE FAT!!! I have struggled my whole life and am so tired of not only having this diesease, but always struggling with my weight is so overwhelming. I need a simple, low fat, easily digestable meal plan to fit in to my life. I try to excercise when I can, but have a very physically demanding job and am so worn out when I get home. I have to use vacation time to be put in the hospital! Ok, now I am just venting.... sorry.

I'm a bit of a strong-willed, Type A personality (in law school, imagine that) and straight up told my doctors that if they even tried to put me on any medicines that made me gain weight (i.e. steroids), we'd have a rumble outside the office. The first anti-inflammatory I was on last summer made me gain like 10 pounds in a week and I called and told them to switch me to something else ASAP or I'd just stop taking meds in general. Pig. Headed.

One of my doctors told me that a lot of times people with Crohn's crave things that they're deficient in. I constantly crave things that signal I'm lacking calcium, salt, iron, sulfur, phosphorous, but my blood work always comes back normal.

Hi there, I have a question and not sure where to post it so I thought maybe this thread would be appropriate. I'm in mid-flare up right now, I have the whole hemmoroid situation going on with fissures. Lots of pain in that area of course. I've been excersising "very moderately" lately. My best friend wants me to go for a walk tonight and our walks are pretty intense, up big hills and at least 2 miles. Should I take a rain check until my butt feels better? Do you think the brisk walks are making the issues down there worse? Thanks in advance. And thank goodness everyone in this forum understands my issues because I swear..I can't talk like this to anyone! haha

PTL! I thought I was the only person not on steroids with crohn's who was over weight. My doctors never say anything about my weight. I just started weight watchers and have lost 8 lbs. It is difficult since there are a lot of foods that I can't eat, but I am sticking with it. Never been on a restricted diet before, always a seafood diet!:biggrin:
When I was first dx 25 years ago, I had a bowel resection and was put on a 2800 calorie a day diet, gained 60 lbs in 2 months and have kept on going.
I am constantly hungry and if it is really bad I crave chocolate. I found that, believe it or not, Mexican food will sometimes settle things down. Of course it has to be good Mexican food!
I quit smoking 10 years ago and that didn't help the weight, but I do feel better and my flares are less severe.
I wish you all well and pray that you will love yourself just the way you are.

elizamt said:

I

One of my doctors told me that a lot of times people with Crohn's crave things that they're deficient in. I constantly crave things that signal I'm lacking calcium, salt, iron, sulfur, phosphorous, but my blood work always comes back normal.

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I agree with your doctor, due to poor absorbsion my body craves vitamin chocolate and vitamin crisps.
I maintain my dehydration with electrolyte cola cola.

2

Thank you all for this post! I have been having to explain to what feels like EVERYONE that I can have Crohn's and be overweight! When I was first diagnosed (as a jr in HS I am now in my early 30s)-till a few years ago I was very underweight. Then I was put on a new steroid and I gained close to 75 lbs! I have tried everything to lose weight and I find it impossible! Salad kills my stomach, when I eat red meat I get sick, and I love carbs! Thank you all for making feel not alone! I am starting with a nutritionist next week and hopefully can figure this out! I eat pretty small portions and exercise but nothing has worked!

I'm undiagnosed - something's up - Crohn's is a possibility - but I'm not sure, and neither are my doctors - about what's actually been causing my problems.

BUT - I'm overweight. By like 80-90 lbs. I'm not on synthetic steroids - so prednisone causing weight gain is not my problem.

Is it possible to be overweight and still have IBD? Or, for that matter, any autoimmune disease?

So often it seems that major weight loss, without trying, is the thing that tips the scales . . . but I'm overweight and still having troubles - could my weight alone be to blame? A side effect of the underlying disease? Or just unrelated happenstance?

Hi coloradoGrrrl, I have two issues that would have negated the diagnosis.....I was 62 when diagnosed and am about 50 pounds overweight. Good luck finding your diagnosis and I certainly hope you feel better soon.

ColoradoGrrrl said:

Is it possible to be overweight and still have IBD? Or, for that matter, any autoimmune disease?

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Yes it is possible, many autoimmune diseases are common to overweight people in fact probably more than thin people,

The thing about IBD is that it affects the ability to digest and absorb food, this is why most IBD sufferers are thin,
but some theories (they are only theories) on weight gain could explain it
- weight gain is associated with gut dysbiosis [1]
- if you also have a genetic makeup that is trying to protect you from excess blood sugar by storing it away as quickly as it can (diabetics)[2]

It's the same diet to try for both (IBD and obesity)
[youtube]C8xLkEHZxDg[/youtube]

this guy had a different autoimmune disease and handled it this way.....
[youtube]V-WUP5psyuM[/youtube]
-be careful with a juice fast- this guy had 60kg of fat to live off while he did it. - this diet excludes all the same foods ac paleo does, plus a whole lot more, so try paleo not this


[1] http://chriskresser.com/could-a-leaky-gut-be-making-you-fat
http://www.ncbi.nlm.nih.gov/pubmed/23084636
[2] http://www.ted.com/talks/peter_attia_what_if_we_re_wrong_about_diabetes.html
http://newslanc.com/2009/12/01/type-2-diabetes-causes-weight-gain/

I'm a chubby Crohnie too, it sucks, but its all my fault. I lost lots of weight last summer when I was really sick, and then gained some of it back over the winter, and the rest of it back once I was put on Prednisone (about 20lbs total). I"m not gaining anymore, but I'm not losing either. If I could put down the pop and chips, I'm sure I would lose some but my will power sucks. I know what I need to do, now I just need to do it.

Wow Jobell. I'm in the same boat. When really sick I'll drop to 100 lb. Before May and my last surgery for multiple blockages I couldn't eat much. My weight was down. I can't eat veggies and salads bc they make me really sick. I live on my own and I'm too tired to cook. Bread and pasta go down well but I'm gaining weight from all the premade processed food. really frustrating.

I gain weight easily but I also lose it quickly. I've had Crohn's for 35 years and have been extremely skinny as well as a bit over weight. I try to keep a few extra pounds when I'm healthy in case I have a flare. I've lost as much as 85 lbs from a flare so it's important to maintain a good balance to my weight.

I don't lose weight through diet but with exercise. My diet is limited and, like others, I can't eat salad, veggies or other foods that trigger my bowels. Exercise gives me energy and helps my overall health. I'm currently 5'10" and I weigh 180 lbs. Most people are shocked because I look like I weigh 20 pounds less.

Bottom line.... a healthy balance between diet and exercise is always the best way to keep healthy and fit.

Thank goodness I found this forum. Other Crohns sufferers are rail thin and they look at me like I'm kidding when I say I have Crohns. My only saving grace is I became a fitness instructor after having my 2nd child as I wasn't motivated enough to get to the gym on my own. There are days when I'm so weak or in pain, that I teach my class sitting down and guiding them through the workout but I refuse to allow the disease to dictate my life.
My biggest issue is, as another member posted, sometimes, I have what I assume are hunger pangs and want to eat and continue to eat hoping the pangs will go away and sometimes they do and sometimes they don't. If I don't eat, it turns into pain and I feel like I don't recognize my body's own signals anymore and confuse them with possible Crohns signs. It's the same with menstrual cramp and Crohns pains, I don't know the difference. Has anyone else experienced this and if so, what do you do? Is there some way to test if it's one or the other?

I got fat being ill. The only thing I could eat and keep down was ice cream and oatmeal. Having my tonsilsremoved didn't help either. Prior to that I was 154. Now I am 215 losing weight again though now that I have most of my energy back thanks to remicade. Green tea does wonders. 3 cups a day should help. I also ate fruit and veggies and cut fried foods out. When sick... my body craves carbs and sugar. When healthy... not so much.

You aren't the only one! I used to be extremely thin and loved it! I could eat whatever I want and seemed to have fast metabolism! Then at age 20 I was diagnosed with crohns and started on prednisone. That medicine is the devil! I gained over 30 pounds! I wasn't used to watching what I ate, and I felt miserable!
Thankfully after a year I have finally been able to shed at least 20 of those pounds off, I still have about 15 to go, and I don't think I will ever be the same.
Crohns sucks!

tilia14 said:

Thank goodness I found this forum. Other Crohns sufferers are rail thin and they look at me like I'm kidding when I say I have Crohns. My only saving grace is I became a fitness instructor after having my 2nd child as I wasn't motivated enough to get to the gym on my own. There are days when I'm so weak or in pain, that I teach my class sitting down and guiding them through the workout but I refuse to allow the disease to dictate my life.
My biggest issue is, as another member posted, sometimes, I have what I assume are hunger pangs and want to eat and continue to eat hoping the pangs will go away and sometimes they do and sometimes they don't. If I don't eat, it turns into pain and I feel like I don't recognize my body's own signals anymore and confuse them with possible Crohns signs. It's the same with menstrual cramp and Crohns pains, I don't know the difference. Has anyone else experienced this and if so, what do you do? Is there some way to test if it's one or the other?

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I was getting the Hunger pangs pain before I even knew it was crohns and would say, "I just ate, what the heck is going on?" Finally after my diagnsis ,I realized it was what I call the bubble pain and can now tell the difference most of the time. You will learn in time how to tell too and menstrual you can go by date!!!

I'm newly diagnosed with Crohn's although I have been sick for years. I had a million and one excuses for why I was sick (something I ate, stress, I am a person with a week stomach, flu) you name it. I want to thank all of you for sharing your stories and advice, until now, I haven't even been reading about Crohn's and have been feeling depressed about the diagnosis.

I was also feeding my disease all this time, I thought I was hungry all the time, in fact I used to joke that I had a tapeworm. I hope that I can soon ride out the pain that I thought was hunger and try to get to a reasonable weight.

Yeah! Yeah! I just found this forum when searching for this topic. I have a mild form of this disease, which has given me more trouble recently (48 years old). I have always struggled with my weight (10-20 pounds), but haven't ever been underweight. Today, I am about 30 pounds overweight, bloated, everything causes gas and I just can't seem to eat anything healthy enough to make me feel better. It's a weird cycle. I wish I would eat a better diet, but nausea, bloating, fatigue prevent me from planning meals and then I am looking for convenient options.

I have ulcerative colitis and now wear a colostomy bag. I used to be very skinny...sickly skinny also before surgery now after I have gained over 65 pounds and its not stopping? I have never been so big . I also think it is depressing and I do not each much I don't understand why this is happening to me!

Emmaline said:

I have ulcerative colitis and now wear a colostomy bag. I used to be very skinny...sickly skinny also before surgery now after I have gained over 65 pounds and its not stopping? I have never been so big . I also think it is depressing and I do not each much I don't understand why this is happening to me!

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I know it's odd for me to be checking out this topic, because I'm the complete other end of the spectrum (very underweight, struggling to gain) so I hope you don't mind me posting a reply to you, but I actually am finding more and more that there are parallels between those of us who struggle to gain weight and those who struggle to lose it.

How has the colostomy surgery affected your UC symptoms? If you are feeling much better now than previously, it may be that you are eating more without being much aware of it. If before you used to get cramping, bloating, urgency for bowel movements after eating, or many other gastroenterological symptoms which have now improved, it may be that food just sits more comfortably in your stomach now, so where previously you'd have had less of an appetite due to uncomfortable symptoms, you now have a more normal (healthy!) physical response to food which is making you eat more (just like many normal, healthy people do).

I'm not sure about UC, but I know Crohn's can affect a person's ability to digest food properly, so when their illness is bad they can eat the same amount of food as when their illness is good, but will gain more weight from it during the good times. I suspect as UC is limited to the colon, where digestion affecting calories doesn't take place, this is not the issue for you though.

So the first question I'd ask is what you're symptoms and disease status has done before and after surgery. The next I'd ask is whether you have had any medication changes, as many meds can affect appetite, and again you may be eating more without realising as you are feeling hungrier than you otherwise would.

But the best thing to do is to take a careful look at the calorie content and portion sizes of what you are eating. Even if something outside of your control is affecting your appetite (meds or disease status), the weight you gain or lose will still come down to how much you consume. Reduce the number of calories you consume to a small enough amount, and you will lose weight. Energy cannot come from nowhere.

It can be extremely hard when we have illnesses, medications or other issues affecting our responses to food. I know that sometimes I eat high-calorie foods and I cannot understand why the weight will not go on, and it's only when I look at the number of calories I'm actually consuming - or when I compare what I eat to the diets of people of a healthy weight - that I realise how, because I feel so full, my concept of my diet has become distorted. And I think it's highly likely this can happen the other way - if your appetite is good, especially if it's better than you're used to it being, you may not be realising how much you're eating.

Well I am feeling the same way I was just diagnosed and first treated in sept after over 6months of struggling with it already. I lost 15pounds in a couple weeks when I was really sick. I obv wasn't obsorbing anything because I was still eating an ok amount. Although I was sick I was feeling the best about my now 15 pound lighter body. Obv it is a shitty Diet (pun intended) and when the pills started working I gained it back. While I am now 170 and 5'9 I feel way bigger than before even tho I am now the same. I would kill to be back at 155! Im not sure if i just miss being able to eat and not get fat but I am still craving sugar so bad even after a month with no prednisone!! I am back on the health food wagon again but this time after dinner I am a sugar monster!! I feel like I need 3 wardrobes: sick, normal, and prednisone/bloated!!

You're definitely not the only overweight crohnie. I've been trying to lose weight for ages. (I used to be 125 lbs and I ended up at 180 after all of the prednisone and other meds). It also doesn't help that I'm on the constipated side of the crohnie spectrum.

What I have found that has worked wonders for me is eating as natural food as possible. Shop the outer perimeter of the store and avoid processed foods like the plague. Start by taking small steps. Dieting isn't the answer. Slowly changing the way you look at food is. My Crohn's was caused by poor, nutrient depleted, over-processed fast food, because that is what I liked to eat. When I stopped drinking soda and started drinking iced tea, that was the first step, and a tipping point for me. My mindset about food and dieting and fitness has totally taken a 180* turn. :strawberry: Now I eat and exercise to be healthy - free of dependency to medications and doctors and all the shitty symptoms of Crohn's. It has taken 2-3 years, but instead of being healthy because I want to look good, I've started being healthy for health's sake, and that has made all the difference.

Let me add my name to the list of 'fat Crohnies'! I am about 20 kgs over my ideal weight.... I lost 9 kilos in about 6-8 weeks (2 kilos per week at one stage) during my last flare in late 2012.

Weighed myself this morning, and I am officially back to my pre-flare weight :'-( Bu**er

I am starting to exercise again, and to be a bit stricter with what I eat. But it has been a rough year.... I am concerned if I stress TOO much about my weight, I may just tip the balance and flare again....

Also fat with Crohn's, lost 15lbs in a week three weeks ago due to acute pancreatitis caused by Imuran complication. Now I'm on Prednisone and the weight is creeping back up little by little. Waiting for insurance approval to start on Remicade now and hoping that I can get a good remission going and start focusing on what I am eating and exercising. It's a struggle to develop the lifestyle I want with the right balance and then accept that when I have a flare I will have to give up some of what I've built until I can get a remission happening again. I was diagnosed in September 2013, 5 years of symptoms before that. Can't really picture what remission will look like yet. Completely agree with the last comment - stress about weight and obsession about diet can't be helpful.

Also a "fluffy" Crohnie here too. Several times while in the ER I've been told "You don't look like a typical Crohn's patient" and I finally figured out what they meant by that, lol.

Anyway, agree with Hugh regarding the paleo diet. I myself am on the Specific Carbohydrate Diet but the two are quite similar. I lose weight very easily on this diet and feel great and definitely don't go hungry although it's a lot of work. I remind myself our grandmothers cooked this way, i.e., everything from scratch.

Studies on remicade show it can cause a 50-75 pound weight gain. I was never fluffy until I started Budesonide, prednisone, and remicade. After that, I developed sleep apnea again. Last time I had it, my tonsils ended up being removed. Well... they came back in 5 years time too.

Can you tell me please where to get a copy of those studies Danieldresen. I think I pushed "fluffy" out the door after a year on remicade and WHY don't our Doctors tell us that?

Here is a link with some info. I will see if I can dig up the actual study. Most of the studies are with RA patients but... same genes are targeted so it wouldn't surprise me that remicade is the culprit. How are your liver panels?

http://www.drugsdb.com/rx/remicade/remicade-and-weight-gain/ forgot link

Studies on remicade show it can cause a 50-75 pound weight gain.

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Oh my gosh, that's horrible!! I'm already 75 lbs overweight. This has horrified me enough to continue on with SCD in hopes of never needing remicade (I'm in remission on Imuran).

Too freking late for me. Here's the other side of the coin......I should exercise and eat more salads and fresh fruits says everybody. Well the Remi makes my muscles and joints ache (although I will admit that has been better recently), and guess what I can't eat? So I guess I'll just waddle along, singing a song.

I can't eat that stuff either except when I'm on SCD, which is why I use it for weight loss. Otherwise all the "diet" things would put me in the emergency room. In fact, they have in the past before I made the connection and was trying to diet. Having Crohn's is bad enough but being overweight too just plain sucks.