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08-12-2014, 04:02 PM   #1
mccwithcrohns
 
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Overweight with Crohn's Support Group

About this Support Group

Hi everyone,
I am new to this forum and have been diagnosed with crohn's. I did loose a lot of weigh prior to been diagnosed. but now I seem to have put back on all the weight I lost and a bit more if I am honest and I am struggling to lose any now.
has anyone experienced this? I am looking forward to hearing other stories and how people dealt with it.

Thanks

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Last edited by nogutsnoglory; 08-13-2014 at 11:39 AM.
08-12-2014, 04:18 PM   #2
bloke
 
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My problem is exactly the opposite and I am struggling to put weight back on which I desperately want to do as upcoming surgery means I am likely to drop in weight again.
I am trying to put weight on by adding calories wherever possible by things like puuting milk and sugar in tea and coffe, having more and bigger deserts, increasing portion sizes and changing my workout regime to heavier wrights with less reps. All small changes in themselves but the overall effect does add up.
Would suggest you do similar but in reverse. Many small changes to eating and exercise habits will not make a sudden impact but is more likely to make a lasting chamge.
I would also speak yo your doc to see if any meds you are taking may be a contributing factor.
08-12-2014, 05:10 PM   #3
bonniebetts
 
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Hello Y'all...my story's a little different. I have been obese most of my life. Most of my adult life I had abdominal pain. Due to the obesity, it was assumed to be gallstones (which I did have) and my gallbladder was removed. The abdominal pain persisted. In 2002 I had the gastric bypass surgery. I lost 150#. And THEN started to have chronic diarrhea. I developed a perianal abscess. In the ER, where I was I&D'd (incised and drained) they asked if I had crohn's because I had granulomatous tissue. I got a referral to a GI, who did a colonoscopy...and VOILA! I had inflammation of my ENTIRE colon with the worst being in the hepatic flexure (the bend under the liver) which was where the majority of my abdominal pain has been. I am STILL considered obese by BMI standards of 26-27. I have done EVERYTHING to lose my extra weight, to no avail. I thought I was the only fat person with crohn's! WHEW! What a relief. Thank-you for being here!
08-12-2014, 08:56 PM   #4
lizbeth
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Hello .

I'm not yet diagnosed but have been having symptoms for nearly 2 years,, before it started I had lost weight through diet and lots of exercise and I think the diet caused my problem to become apparent. First time in hospital I lost a lot of weight but then steroids and triple insulin doses (diabetic for 18 years) meant I put a lot of weight on. I'm now at my heaviest weight ever and it gets me down a lot.

I was very ignorant of crohns and thought only skinny people had it but now I know better. My weight isn't helped by the fact my joints are intensely painful and I find it hard to move around so exercise is a thing of the past .

I would love to lose weight but don't know how when the only safe foods are carbs so I'm having to take more insulin than I used to.

Thanks for starting this group, look forward to getting to know you all .
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08-12-2014, 10:31 PM   #5
Cathy1960
 
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Hi, I started to put on weight while I was on TPN for 6 months, I've put on about 30lbs & it's been a huge struggle to take the extra pounds off, any tips would be great.....thx
08-12-2014, 11:06 PM   #6
Nancye50
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I'm fairly newly diagnosed and have been overweight for about 5 years. I've realized that every major attempt I had made in the past to "get healthy"
Probably threw me into a simmering flare. I'd feel worse; not better and eventually give up or just Peter out. I'm going to try to keep things in moderation better: veggies/fruit and exercise.
08-13-2014, 10:05 AM   #7
Maxwelljax
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Just found this group. There are so many people struggling to gain or maintain wt with Crohn's that I didn't expect a group for those of us who are over weight. I am struggling to figure out what to eat to lose. Following a strict low residue diet now due to fistula and adhesions. Had SBO a few weeks ago that cleared without surg and had I&D with seton placed last week for peri anal abscess. Can not figure out how to eat to keep things moving and drop the weight. So frustrating!
08-13-2014, 11:41 AM   #8
nogutsnoglory
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Hope you don't mind I edited a typo in the title.

I have always been skinny but lately added a ton of visceral fat. I am used to eating high fat to gain weight since I was so skinny but now I need to watch it. Also, lyrica is making me fat.

I want to buy an elliptical to get in shape.
08-13-2014, 01:16 PM   #9
Mountaingem
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I gained a lot of weight from a combination of inactivity, joint pain that renders my former exercise habits too painful to continue, and three years of constant prednisone. Dieting is hard because of course the conventional wisdom is to eat more whole grains, fruits and veggies, which my tummy hates. And even though I am 40 lbs overweight, I am still considered malnourished. *sigh*
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08-13-2014, 01:20 PM   #10
Maxwelljax
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I hear that! Malnutrition and overweight is my issue to. And...joint pain and fistula and abscess make exercise a real challenge. Very hard to find a routine.
08-13-2014, 05:09 PM   #11
mccwithcrohns
 
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Thanks everyone for your replies
it is great to hear that I am not the only one with this struggle. I am going back to see my dietician on Saturday and so I am hoping that she can give me some suggestions.
I did do the low fodmap diet when I was first diagnosed and it worked great but now I am think it needs to be shook up a bit.
here's hoping anyway!!!
08-13-2014, 10:40 PM   #12
Malice67
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Six months of anemia exhausted me so badly I put back on the 10 pounds I had managed to lose last summer and then added another 10. People look at me funny when I say I have Crohn's and I know they are thinking I am too fat to have it.
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Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
08-13-2014, 11:54 PM   #13
Mountaingem
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Don't you find it annoying though that people know we have this serious disease and yet the focus is always on appearance? Quite honestly, there are plenty of worse things that it brings besides weight gain/loss and yet there are always a few people who dwell on whether or not we should look a certain way. My brother in law will say: "Well it's okay for you to be fat; you've got a reason" and I think, well, what if I just gained because I ate too much or was depressed? Does that make me less worthy of empathy or love? *growls*
08-15-2014, 12:30 AM   #14
Nancye50
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I'm wondering how many of us here have terminal ileum involvement without D & even with constipation?
08-15-2014, 08:37 AM   #15
Saralr
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I used to be able to eat anything and not gain weight. When I graduated college I was 115 pounds and 5'8" tall. I didn't look healthy. Before my diagnosis I weighed 20 pounds more than I did when I was 9 months pregnant.

I started juicing and lost a little weight but then it stopped. I was eating between 1200 - 1400 calories a day and no weight loss. My GI informed me that is not a Crohn's issue and I must have thyroid problems. She told me that accounted for my joint pain and constipation problems as well. (Idiot)

I switched to the SCD diet and am starting to lose weight. She advised against it because nothing is proven, but then said it wouldn't hurt anything. So I figured it would be healthier than her no fruit or veggie diet. I have been actually losing and am figuring out what I can't eat. I also noticed that when I eat foods that don't agree with me, my weight goes up. When I eat agreeable foods my weight goes down. It makes me think inflammation has something to do with the weight.

My Crohn's is all in my colon so I don't have any malnitrition issues.
08-20-2014, 04:38 PM   #16
mccwithcrohns
 
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So I went to back to see my dietician and she suggested really sticking with the low fodmap diet and adding fibregel twice a day to help with the constipation. she also said that I need to loose 2stone to start with and she wants to see at least 1.5stone gone by Christmas. this is so not easy I am finding it hard to just get started never mind stick with it.
08-20-2014, 07:21 PM   #17
Lam123
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So glad I found this thread. It is funny how people always focus on the physical aspect of the disease, when I was very under weight, people always commented, now over weight, still commenting. If they only knew how it feels to have an obstruction. So much more to the disease then physical aspects.
I am struggling to get some weight off. I know a few months ago I started losing when I was going for walks and watching my portions, I do eat a lot of carbs because fruits and veggies are rough on my tummy, but when I watch the portions I find I start to lose. I also started juicing and that helps with energy.
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08-20-2014, 07:50 PM   #18
Maxwelljax
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I've seen a lot of posts about juicing. I've tried but can't seem to stay with it. Trying to stay on a low residue diet now due to partial obstruction. May try again cuz I seem to only be eating carbs now. Not sure what to juice though.
08-20-2014, 07:54 PM   #19
Lam123
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It is definitely hard to stick with. I usually juice green veggies, and small amount of fruit to make it taste good.
08-20-2014, 09:32 PM   #20
Nancye50
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My dirty secret is that I usually put some advocare spark in my juice. Nothing like a little buzz to motivate me to drink the green stuff!
08-21-2014, 05:24 AM   #21
Ice
Not diagnosed yet, but the fact that I haven't lost weight despite my violent and painful episodes of D, feeling 'blocked' afterwards, eating little, etc, is a big reason none of my doctors ever wanted to touch the 'You might have something more serious' button... until now when I'm years into the symptoms and only getting worse.

I'm not overweight but I'm getting uncomfortably close and for me, hormone issues are part of the culprit along with the fact that I spent 8-10 months being mostly off my feet owing to midfoot fractures that wouldn't heal.

At this point, I have two major problems to look at but I'm not sure which one to look at first.

Hugs to everyone who's struggled with weight and judgement and the sometimes hand-in-hand issue of 'invisible' disability because they don't look 'sick enough'.
08-21-2014, 08:52 AM   #22
Saralr
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My favorite juices are carrot/apple (equal amounts) and 2 apples, 1 cucumber and 1 thumb ginger. Ginger is supposed to be good for the gut.

Ice, I know what you mean about being dismissed. My GI says I'm in remission and my symptoms must be something else. She suspects my thyroid because of my weight. My weight is a problem because of medicine I took that made me gain weight, then another that made me lose. I went up and down so much from meds and I finally stuck at the high weight. It sucks that I'm not taken as seriously with my Crohn's issues just because I'm not wasting away. I'm glad I don't have to deal with the massive weight loss that some people do but being heavy doesn't make me any less sick.

Ok. Vent over. Time to eat my muffin (or as I like to call them Magical Poop Muffin - clears up my constipation problems amazingly) and head off to work.
08-24-2014, 08:55 AM   #23
Nancye50
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Ooh is there a special recipe for the poop muffin?
08-24-2014, 09:54 PM   #24
Saralr
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It's the SCD muffin from Breaking the Vicious Cycle. A muffin and some juice, sit around for a little bit and within a half hour I'm in the bathroom. Only works at breakfast though. Not sure what it is. Maybe the almond flour.
08-25-2014, 09:12 PM   #25
CongoJack
 
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I'm glad to have found this thread (and on my first visit to the forum too!)

I don't consider myself to be seriously overweight, but I am 180 pounds at 5'9 with a gut. I do find it to be a struggle to keep the pounds off without being able to eat fruits, vegetables and whole grains in great amounts. I'm particularly annoyed at the cereal aisle; the choice is typically between Fibre-Os and a bowl of sugar.

Anyway, I've had some experiences with people telling me I'm too big to have Crohn's or that I can't be feeling that bad because I'm not thin.
08-25-2014, 09:25 PM   #26
Nancye50
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I will say my attitude towards my body totally changed when I was diagnosed & started reading threads here about people struggling to keep weight on. While I was so sick, I was relieved I didn't have that to worry about on top of or.
08-25-2014, 09:29 PM   #27
Maxwelljax
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I know exactly how you feel CongoJack. I am seriously overweight. Have always had a weight problem and have put on 40 lbs in the last year and a half while taking Entocort and Remicade. I actually gain about 5 lbs with every infusion and fight to get if off by the next one. I have had severe malnutrition and anemia. And yes... People look at me like I'm crazy if I tell them I have severe fistulizing Crohn's. And now that I'm on a strict low residue diet due to adhesions and I have no idea how to get the weight off. I had been going to the gym but abscesses, fistulas, and seton drains have put a stop to that. I will say though my GI Doc has told me many times Crohn's is not a disease that only attacks thin people. You almost have to gave this disease to understand.
09-01-2014, 09:17 PM   #28
Elektrikhd
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I've been overweight for almost my entire life, and I thought that perhaps the silver lining of the Crohn's might be that I'd finally stop having that problem. No such luck. At least as an adult, I think depression is a major factor in my obesity: I lose the motivation to be active (so please, PLEASE don't tell me that if I exercise I'll feel happy, because I've tried that, and depression can strike when I'm active, too), and I start to overeat, especially of foods that are likely to contribute to weight gain. And there are plenty of cookies out there that even now I have no trouble eating.
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Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
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09-02-2014, 08:31 PM   #29
Saralr
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It's the beginning of a new month and I think that is a great time to start on a change in ourselves. I'm not talking about major weight loss or even any weight loss. Anyone who is interested, lets set an individual goal for the next month.

Maybe you want to lose some weight this month, or dress to flatter your fuller figure, or start a new exercise. Whatever it is, it should be something that will help us to feel better about ourselves. We can share our goals and use the forum to share our successes and struggles as the month passes. And we'll have others here to support us along the way.

Just an idea. I'd like to start taking better care of my appearance. If I'm always wearing big t-shirts and not doing my hair in the morning, I don't feel very good about myself or my size. I'm going to try to take time to make myself look nicer for work. Anyone else have a goal?
09-02-2014, 09:01 PM   #30
Malice67
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nail polish and haircut!!!
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