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Crohn's Disease Forum » General IBD Discussion » Does Crohn's make you lose this much weight?


11-11-2013, 11:17 AM   #1
UnXmas
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Does Crohn's make you lose this much weight?

Fully clothed, I'm 165cm and 30kg (66lb and 5'5"). In the two weeks I just spent very sick in hospital following surgery, I lost around 8kg - I was nil by mouth, but on TPN, then I was back on real food but hardly able to eat anything. Is it normal to lose weight that fast (or "normal" for people with this disease)? I also have delayed stomach emptying, so I just can't stomach normal sized portions of food, but quite a few doctors have implied my test results don't justify so much weight loss, i.e. that my test results don't correlate with the severity of my symptoms. I've been underweight most of my life, but a few years ago I was able to maintain a healthy weight for around a year, since then it's been steadily dropping, and obviously these last few weeks have caused extreme weight loss though that's not typical.

I feel completely overwhelmed by the amount I have to gain, and by the fact that I'll have to be trying to gain/maintain weight indefinitely - it's not like I can reach a healthy weight (if it's even possible for me to do that anymore) and then reduce my eating, as I'll just lose it all again.

I know all the tips about calorie-dense foods, eating little and often, Ensure, not exercising (still pretty much housebound at the moment, though that's due to the surgery and complications so should change in the not too distant future, but even then I won't be doing more than walking my dog for half an hour or so).

Nothing's working Has anyone been in this situation? How do you get out of it? I feel like I should just give up trying and live my life underweight, which is essentially what I've been doing anyway, except I've been doing it with the constant thought in my head that I must eat more.

Last edited by UnXmas; 02-03-2014 at 05:16 AM.
11-11-2013, 12:11 PM   #2
TwinkleToes
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When I had my first flare (it was horrendous) I lost 50lbs and was down to 105lbs. I am 5'8". This past flare I lost about 25 lbs, and was originally around 155. So yes, it is possible to lose that much weight. What put weight back on my bones was going on Prednisone (per my doctor for the flaring).

I wouldn't try to stress too much about gaining weight, because the stress won't help. Do your best to keep pushing low-residue, high vitamin foods. It seems like you're on the right track. Best of luck.
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11-11-2013, 05:22 PM   #3
shamrock15
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I just want to be certain about the height and weight you are mentioning, because there is no way that at 5'6" you should be only 66 pounds. This seems to be dangerously underweight. I think if you got up to 100 pounds, you would still be considered underweight. For me, I lost 30 pounds in the first month of my flare leading to my diagnosis, but it has never been that severe since in 25+ years. I think you really need to pursue this with your doctors - this is really not a good weight.
11-11-2013, 05:27 PM   #4
TwinkleToes
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I think they meant to say 66kg.
11-11-2013, 05:57 PM   #5
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I think UnXmas meant 66 pounds because if you do the conversion of 30kg to lbs it is 66.1.

My son is almost 5'7" and is around 114-118 it varies week to week and that is pretty low on the BMI. He is still gaining height too, though.

In February, when he was in the hospital, originally admitted due to something other than his weight(CD and joint pain) but they wouldn't let him leave for about a week because at 5'6" he was 108 so they kept him until he was 112 before releasing him.

I would definitely be badgering the doctors if your weight is just 66lbs.
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11-11-2013, 06:06 PM   #6
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Except 165cm would be 5'4" tall not 5'6" so I'm not so sure which he meant now.
11-11-2013, 06:15 PM   #7
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The first time I had a flare, I went from 157 lbs. to 123 lbs. in three months.

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11-11-2013, 08:12 PM   #8
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My father has lost a lot of weight during bad flares, but I weigh around 190 and my weight kept going up and down within the same 10 or 15 pound range. It is certainly possible and likely that a disease process with the features Crohn's has would make you lose that kind of weight, it isn't a given.
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11-12-2013, 06:09 AM   #9
UnXmas
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I just want to be certain about the height and weight you are mentioning, because there is no way that at 5'6" you should be only 66 pounds. This seems to be dangerously underweight. I think if you got up to 100 pounds, you would still be considered underweight. For me, I lost 30 pounds in the first month of my flare leading to my diagnosis, but it has never been that severe since in 25+ years. I think you really need to pursue this with your doctors - this is really not a good weight.
I know it's hard to believe, but yes I really am that weight.
11-12-2013, 06:10 AM   #10
UnXmas
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I think they meant to say 66kg.


Sorry for the confusion: I'm 30kg, 66lb. My height's 165cm. But that is 5'5", not 5'6" - I'll edit my original post. I'm also female btw.

Last edited by UnXmas; 02-03-2014 at 05:17 AM.
11-12-2013, 07:23 AM   #11
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I'm 5'9" at the moment I weigh in at 56kg but I've been up and down on the weight rollercoaster because in the flare that I'm in at the moment I have gone from 56kg right down to 48kg which was low and at my worst I went down to 29kg which was really bad, but yeah it is possible to a lot of weight with Crohn's.
oh yeah and FYI: I'm female
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11-12-2013, 04:12 PM   #12
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UnXmas, first of all I would say, exercise isn't necessarily the enemy. I exercise a lot, and yes my weight has dropped a little bit in this current flare I find myself in, but weight-bearing exercise in particular has helped me gain a lot of healthy muscle mass. I haven't lost weight from exercise itself, only as a result of this mild flare I'm in. So don't write off exercise completely - I can't say enough good things about weight-lifting, it's done so much good for me.

Secondly, what diets have you tried? Have you done anything like SCD? What about EN? Perhaps those could get you healed up better so that you could absorb more calories & nutrients and gain some weight. I haven't tried SCD nor EN myself so I'm just throwing the idea out there. I know there are a lot of diets to try. And I remember reading at least one person say their child ate a regular diet during the day but also did EN through an NG tube at night - maybe you could consider something along those lines.

Thirdly, I concur with the others - I want to know what your doctors say about you being only 66 lbs? I know you were mistakenly treated for eating disorders in the past so you may be reluctant to discuss this current weight issue with your doctors, but my goodness, 66 lbs is next to nothing and it sounds like perhaps more serious help is needed than just "drink an Ensure" or whatever. It's worrying and I hope you're okay, and that you can find a way to gain some healthy weight back.
11-12-2013, 04:42 PM   #13
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In the same boat as you. I've lost about 20-25 during this flare. Majority of the weight loss was within three weeks. So now I'm at 5'6 110. Majority of the weight is in my distended tummy.

I've just purchased some more ensure plus. Hopefully the weight piles on soon.
11-13-2013, 06:49 AM   #14
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UnXmas, first of all I would say, exercise isn't necessarily the enemy. I exercise a lot, and yes my weight has dropped a little bit in this current flare I find myself in, but weight-bearing exercise in particular has helped me gain a lot of healthy muscle mass. I haven't lost weight from exercise itself, only as a result of this mild flare I'm in. So don't write off exercise completely - I can't say enough good things about weight-lifting, it's done so much good for me.

Secondly, what diets have you tried? Have you done anything like SCD? What about EN? Perhaps those could get you healed up better so that you could absorb more calories & nutrients and gain some weight. I haven't tried SCD nor EN myself so I'm just throwing the idea out there. I know there are a lot of diets to try. And I remember reading at least one person say their child ate a regular diet during the day but also did EN through an NG tube at night - maybe you could consider something along those lines.

Thirdly, I concur with the others - I want to know what your doctors say about you being only 66 lbs? I know you were mistakenly treated for eating disorders in the past so you may be reluctant to discuss this current weight issue with your doctors, but my goodness, 66 lbs is next to nothing and it sounds like perhaps more serious help is needed than just "drink an Ensure" or whatever. It's worrying and I hope you're okay, and that you can find a way to gain some healthy weight back.
Hi Cat,

I just had ileostomy surgery and post-surgical ileus, so I can't exercise at all right now. I was extremely sick. With ileus, you can't eat at all, so I was on TPN but it still really took it's toll on me. At the moment my muscles are so weak, if I walk upstairs it feels like climbing a mountain; getting dressed wears me out because my arms can't lift heavy clothes. I am making sure I walk up the stairs and round the garden each day - they always advise you to move when recovering from surgery, but that's what counts as my "exercise" at the moment. As I recover, I will build up to taking half-hour slow walks with my dog, which was what I was doing before surgery. I know that gentle exercise doesn't actually burn that many calories - I've read that many people trying to lose weight mistakenly believe that a bit of exercise will burn a lot of calories, and then wonder why they're not losing. It's not so much the worry that I'll use up calories as the muscle weakness that's stopping me exercising now, and I can't bend or lift anything while I'm healing from the abdominal surgery.

Diets - I exhausted experimenting with diet many years ago. I haven't tried the SCD, but I tried enough supposedly healing diets (eat only organic, no sugar, no dairy, no gluten, food intolerance testing, working with nutritionists, no processed food at all, etc.). Every single thing I tried made me more sick, and they made me lose weight too. I felt so betrayed by all the nutritionists and others - also tried various alternative therapies - who would tell me they could make me better, and then when I got worse, they didn't want to know. I know that fibre makes me worse, so I don't eat much of it, at the moment I'm on a post-ileostomy diet which excludes anything that could cause a blockage, and will be until the stoma swelling goes down in 6- 8 weeks. I eat little and often, and I eat calorie-dense foods. I have had such bad experiences with trying to improve my health through diet, that I won't try another. From what I've read, SCD, paleo, etc. do not have much more evidence or evidence of a higher quality than any of the other diets I tried which failed. There will always be another diet to try, there'll be someone telling you this food is bad, that food is bad. You could experiment with diet indefinitely. So I have had to draw a line and say that I'm not trying another, as I don't want to waste any more time and energy on a diet that leads to disappointment. My diet will only change when there is a lot of evidence of a high standard that it will benefit me - such as giving up the foods known to potentially cause blockages after having my ileostomy.

I don't think I'd want an NG tube, as a big part of my problem is feeling so painfully horribly full - anything going into my stomach is going to contribute to that, whether it comes by tube or whether I eat it the regular way. I had TPN while in hospital because I couldn't eat, and I would be willing to do that at home, if it's possible. I've been referred to a specialist in this area, and will ask about it then, though when I was in hospital they wanted me off the TPN as soon as possible as they said it carries its own risks.

The odd thing is none of my doctors care much about my weight. When I was misdiagnosed with anorexia, the psychiatrists and eating disorder specialists always made it sound that being a few kilos underweight meant you were on the brink of death, and that missing a snack could kill you (and I'm not exaggerating much here!). But doctors I've seen in every other fields - including the dietician who organised my TPN - don't seem to see it as a big problem. But then all my signs - heartbeat, blood pressure, levels of vitamins, minerals, etc. - are always good, and I've wondered if I may be safer than the average patient with anorexia, as I eat a balanced diet, eat consistently, don't get dehydrated, don't over-exercise or take diet pills or laxatives, so my illness lacks some of the more dangerous attributes that eating disorders often have.

I don't know why they treat as no big deal, but I've spent a lot of my life underweight (not to the extent I am now, but often quite significantly underweight), and it's done me no harm so far. I know that in no way guarantees it won't cause me big problems later, but trying to gain weight has led to lasting damage to my digestive system. The more I eat, the faster my digestive system symptoms deteriorate, and the deterioration is usually permanent. So, ironically, the more I eat now, the harder it will be for me to eat in the future.
11-15-2013, 09:26 AM   #15
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I went from over 110lbs to 88lbs in about 3-4 months of being very sick. I slowly used a low residue diet to give my intestines a rest and once I felt semi decent, with the help of anti diarrhea and anti nausea meds, I used the my fitness pal app on my phone to track my calorie intake to gain the weight back. It took me 3 months to get to 100lbs, then a few months after I put on another 10lbs. Right now I am 5'4 and about 107lbs - sometimes a little over, sometimes a little under. Anyway - that app is great to track what you're eating and your progress. And try to stick to healthy foods + a meal supplement like ensure (or I prefer boost) to add on.
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11-15-2013, 03:26 PM   #16
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I have much the same problem. I lose weight easily and cannot tolerate much food when in a flare, I vomit if I have NG feeds.(I also have gastro duodenal crohn's)
My team get very twitchy when I start losing weight and I have a nasojejunal tube put down. It bypasses the stomach and runs 24 hours at a slow rate. I am then encouraged to add in small amounts of LOFLEX food (low fat low fibre), gradually increasing.

I have it in until my weight is better and I am tolerating enough calories orally to continue to gain weight.
I currently have one in for the 4th time and my weight is just starting to go up. I need lots of calories through it as I have small bowel crohn's as well so have malabsorption when flaring. The longest I had it was 10 months, the least was about 5-6 weeks.

I am sure something like this would work for you. I find it bizarre your team aren't bothered by your dangerously low body weight. I think you need to push hard for a solution.
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11-17-2013, 09:23 AM   #17
UnXmas
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(I know my posts are very long - I'm not really expecting replies, I'm just getting all the thoughts out of my head.)

I went from over 110lbs to 88lbs in about 3-4 months of being very sick. I slowly used a low residue diet to give my intestines a rest and once I felt semi decent, with the help of anti diarrhea and anti nausea meds, I used the my fitness pal app on my phone to track my calorie intake to gain the weight back. It took me 3 months to get to 100lbs, then a few months after I put on another 10lbs. Right now I am 5'4 and about 107lbs - sometimes a little over, sometimes a little under. Anyway - that app is great to track what you're eating and your progress. And try to stick to healthy foods + a meal supplement like ensure (or I prefer boost) to add on.
My problem, though, is I know that I usually don't eat enough. I've tried working out my calories before. But I'd work out I needed X more calories a day, and still not be able to eat them.

I have much the same problem. I lose weight easily and cannot tolerate much food when in a flare, I vomit if I have NG feeds.(I also have gastro duodenal crohn's)
My team get very twitchy when I start losing weight and I have a nasojejunal tube put down. It bypasses the stomach and runs 24 hours at a slow rate. I am then encouraged to add in small amounts of LOFLEX food (low fat low fibre), gradually increasing.

I have it in until my weight is better and I am tolerating enough calories orally to continue to gain weight.
I currently have one in for the 4th time and my weight is just starting to go up. I need lots of calories through it as I have small bowel crohn's as well so have malabsorption when flaring. The longest I had it was 10 months, the least was about 5-6 weeks.

I am sure something like this would work for you. I find it bizarre your team aren't bothered by your dangerously low body weight. I think you need to push hard for a solution.
I'm not sure. When I was in hospital after surgery a few weeks back they were very keen to get me off TPN, though I'm not sure why. They gave me TPN while I was nil by mouth. But then as soon as I was able to keep the slightest amount of food down they took me off it, even though at that point in my recovery from ileus I could only manage literally a few mouthfuls - a small amount even by my standards. I was able to drink plenty of fluids, but they knew I could barely eat and still took me off TPN. I wondered if the TPN carries potential risks since it seemed to be their last resort. Does the tube you have come with any health risks?

Generally doctors have been a bit concerned about my weight, but so many of them seem to view it as something I could change if I wanted to or if I just tried hard enough.

When I was in hospital, the dietician wasn't concerned about my weight.

My GP is concerned by my weight, but all she ever wants me to do is see dieticians (I've seen plenty already), which to me implies that she believes I could be a healthy weight if I just ate right. But then she was also very against the idea of me having an ileostomy - which, now that I do, I wish I had had the surgery done years ago, I can't get over how much I prefer the ileostomy - so now I'm doubting whether she really grasps what my illness is like or how well I'm communicating with her.

She gave me a lecture on how much I'd hate having a stoma - obviously she was way off the mark here. And similarly, I think I'm just not getting across to her how much my body just won't accept food and how the more I eat, the more ill I get. I've tried to explain to her, but she just doesn't seem to connect my digestive symptoms to my weight loss. She views my digestive problems as something which affects my quality of life but are otherwise harmless, and my weight as a concern (though not a particularly pressing one), but as something that could be fixed if I would just see another dietician and change my diet.

My colorectal surgeon is brilliant, and he completely understood why an ileostomy would be right for me, but he is always focussed solely on colorectal problems.

I don't really see any other doctors anymore, except occasionally I see a urologist.

Years ago when I was first getting sick and losing weight, I was misdiagnosed as having an eating disorder. Then I had loads of doctors obsessed with my weight, though of course they never once thought about addressing my digestive problems - which they didn't believe existed - and dedicated themselves to punishing me for not eating enough and trying to find the source of my dislike of food by demanding to know about my childhood traumas (I had none, I had a happy normal childhood) and my distorted body image (I knew I was too thin and wanted to gain weight).

Does anyone know, what kind of doctor would specialise in this kind of weight loss? What could be done to make me able to eat more?
11-17-2013, 10:03 AM   #18
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To be honest, all of the GP's I have encountered tend to not really have the level of understanding when it comes to Crohn's that specialists can show. Mine had the same issues as you. They'd assume that it is something with my willingness or habits associated with eating, instead of the internal process itself. With myself, I have found that the decrease in appetite and inability to eat is almost always associated with an active flare.

TPN for too long can supposedly atrophy of villi which helps absorption nutrients in the GI tract, which might be their main concern. However, it might be possible that a mixture of Enteral nutrition and real food could help. Have you discussed this with a gastro specialist? I understand the risk is still there with EN, but pairing it with food may be an idea to ask about.

On my first flare, I lost 26kg roughly from around 67kg beginning (if I remember correctly) and it seems to be a common thing amongst a lot of people with Crohn's. As a teenager, that really took its toll. I was hovering around 50kg for years, until I was put on Enteral Nutrition instead of Prednisolone for inducing remission. To be honest, it had helped me IMMENSELY. In 8 weeks, I had gained 12kg of weight, and paired with exercise made me look and feel a lot healthier.

The formula I was on is called Modulen IBD, and I definitely think you should give it a look. Even my appetite after the treatment was increased given that it had induced remission.

I hope we can help even just a little! I wish you all the best.
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11-17-2013, 11:22 AM   #19
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There aren't really any long term risks with NJ feeding. It is much the same as NG but bypasses the stomach and is at a slow rate. Much safer than TPN as TPN given into vein so higher risks of infection and you need a permanent central line.
I really only have the issue during a flare. It is my gastroenterologist and specialist gastro dietician that deal with me.
Why don't you ask for a referral to a gastroenterologist with the specific purpose of discussing your weight, appetite and possibility of either NJ feeding.
If you do well on NJ feeding but cannot increase your oral intake, a jejunostomy may be considered which is more permanent and you don't have a tube sticking out of your nose!
They have discussed it with me but I am not keen as I don't need it all the time. I already have a permanent central line (portacath) which is enough for me (only had 3 weeks and still getting used to it).

What country are you in?
11-17-2013, 11:37 AM   #20
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Thank you for your responses, zilla and littlemissh.


There aren't really any long term risks with NJ feeding. It is much the same as NG but bypasses the stomach and is at a slow rate. Much safer than TPN as TPN given into vein so higher risks of infection and you need a permanent central line.
I really only have the issue during a flare. It is my gastroenterologist and specialist gastro dietician that deal with me.
Why don't you ask for a referral to a gastroenterologist with the specific purpose of discussing your weight, appetite and possibility of either NJ feeding.
If you do well on NJ feeding but cannot increase your oral intake, a jejunostomy may be considered which is more permanent and you don't have a tube sticking out of your nose!
They have discussed it with me but I am not keen as I don't need it all the time. I already have a permanent central line (portacath) which is enough for me (only had 3 weeks and still getting used to it).

What country are you in?
I'm in the UK - all my medical care is NHS.

When I was in the hospital, they told me they were waiting for a free spot in an operating room to give me a central line for TPN, and that it was put in place by an anaesthetist. However, there were too many other patients needing more urgent procedures, so after several days of me just having IV fluids (which was very worrying to me - and my parents in particular - because I couldn't eat, had been told not to eat, and despite my weight was surviving of IV fluids plus what I could manage in Ensures and similar drinks). So they gave me TPN through a tube in my wrist instead (the same as the fluids had been going into).

I've not had the opportunity to discuss other feeding options. The dietician saw me only very briefly - which is often how I've found it is in hospital, the doctors make a lot of decisions without you present - the dietician basically turned up at my bedside and told me what they were planning, we didn't have a real discussion. But then I wasn't in much of a state for discussing things anyway. I do think she knew what she was doing though - but she was focussed on getting me through my acute illness - ileus - not on my long-term weight gain. She referred me to an outpatient dietician. I wasn't thrilled about this, as I know everything there is to know about diet, have tried every diet, have seen dieticians. But I'm think now that perhaps when this appointment comes through I should use to discuss feeding tube options, since the hospital dietician seemed to be the specialist in this area; I'd previously assumed dieticians just talked about regular food, but perhaps I can get more out of the appointment this way.

I have seen gastroenterologists before, but they always seem to have a problem with me. My objective test results to not seem to correlate with the severity of my symptoms and the weight loss that results from them. They pretty much all reverted back to the "you must have anorexia" conclusion.
11-17-2013, 12:48 PM   #21
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If you had anorexia you would refuse enteral feeding. Simply asking for tube feeding to put weight on will stop them thinking about anorexia nervosa/eating disorders.
My dietician is hospital based and she is the one who gets my gastro consultant to sort out placement of my NJ tube when necessary. She is great. I have never seen a community dietician and don't think it would be helpful.
Where abouts in the UK are you?
11-17-2013, 03:34 PM   #22
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Hi. I can lose 50-60 lb in a month when really sick. TPN helps with nutrition but not muscle mass which is also lost when we are laid up in bed for long periods of time.
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11-18-2013, 09:02 PM   #23
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I know how you feel exactly. I'm 4'11 and weigh 71 pounds and people always say I should "eat more" because I look pretty thin. It's annoying cause they don't know that crohn's can do that do you. I eat alot but I don't gain weight and sometimes even lose. I thought about giving up several times, but I guess you should see it in a positive way because alot of people wish to not gain weight when they eat! My advice would be to eat healthy, I know crohn's have alot of restrictions in their diet, so I guess eat more carbs since thats suppose to be good for crohns. Try to keep the disease in control and then worry about the gaining back the weight after when you're in remission.
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