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Crohn's Disease Forum » Diet, Fitness, and Supplements » Am I the only fat Crohns sufferer?


 
02-12-2012, 11:17 AM   #1
Jobell
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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.
02-12-2012, 12:05 PM   #2
kllyeve
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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.
02-12-2012, 02:40 PM   #3
happy
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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.
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02-12-2012, 03:24 PM   #4
Jobell
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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?
02-12-2012, 04:03 PM   #5
happy
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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!
02-12-2012, 05:03 PM   #6
tiloah
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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.
02-12-2012, 05:19 PM   #7
Girun
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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!
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02-12-2012, 05:33 PM   #8
Jobell
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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?
02-13-2012, 12:50 PM   #9
sawdust
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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.
02-13-2012, 03:06 PM   #10
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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.
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Have previously been on infliximab (Remicade), Azathioprine (imuran), mercaptopurine and methatrexate, and lots and lots of steroids!

Surgeries: small bowel resection 1990, 2010
02-13-2012, 03:29 PM   #11
JudithC
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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.
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now:
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02-13-2012, 07:30 PM   #12
Jobell
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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!
02-13-2012, 08:09 PM   #13
JudithC
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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.
02-13-2012, 10:32 PM   #14
Crohn's 35
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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.
02-14-2012, 01:37 AM   #15
kllyeve
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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.
02-14-2012, 02:01 AM   #16
happy
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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.
02-14-2012, 06:38 AM   #17
Girun
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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:>
02-14-2012, 12:56 PM   #18
Jobell
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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.
02-14-2012, 12:58 PM   #19
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Instead of Rehab centers, or fat farms, it could be a crohn's country resort educational vacation.
Hey, I am in!
02-14-2012, 01:01 PM   #20
JudithC
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wow Jobell, I'm in too.
02-14-2012, 04:29 PM   #21
Girun
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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
02-18-2012, 07:06 PM   #22
slightlysilly
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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!
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Diagnosed with Crohn's Disease - 11/03/2010
Diagnosed with Celiac Disease 03/10/2011
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Was on Humira, didn't improve anything.


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02-18-2012, 07:41 PM   #23
lisakuney
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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
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02-18-2012, 10:23 PM   #24
Mountaingem
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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".
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02-19-2012, 10:20 AM   #25
Amberaut
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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.
02-19-2012, 12:50 PM   #26
Jobell
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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).
02-19-2012, 01:28 PM   #27
amorin
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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
02-19-2012, 02:00 PM   #28
JudithC
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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.
02-19-2012, 02:11 PM   #29
LJoy
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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.
02-19-2012, 02:48 PM   #30
amorin
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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.
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.
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