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04-07-2015, 05:58 PM   #91
Gail Jothen
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I have the same problem. I really don't eat much as stomach pain has shrunk my stomach, but my BMS seem as big as the amount of food I eat. Therefore, how can I gain weight?
I asked my GI but he did not give me an answer. I think IBD must prevent our bodies from absorbing food as it should if healthy. But it is just a thought, I have no science for this opinion....except I have so much trouble gaining weight even when I eat well. I look anorexic, but I know I am eating more than someone who is anorexic. ??????? I have no answer for you, JeffBee, I'm sorry.
04-08-2015, 04:17 AM   #92
UnXmas
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I don't think size of bowel movements is relavent. Bowel movements can vary in volume depending on their water content and the amount of fibre you're eating more than on the overall amount of food you consume or calorie intake.

I eat loads more than people with anorexia too - I've had a whole team of experts completely unable to explain why, while they monitored my food intake for weeks and weeks while I was in hospital.
04-08-2015, 04:23 AM   #93
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. I know gluten-free is a first good step.
Only if gluten is a problem, and for most people it's not. I would think it's better to get tested (in this case for coeliac) before cutting things out, unless the connection between food and symptoms is very obvious. A long time ago I cut out gluten (and various other things) and it didn't help in any way, and restricting your diet can make it harder to gain weight.
04-08-2015, 06:04 AM   #94
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I don't think size of bowel movements is relavent. Bowel movements can vary in volume depending on their water content and the amount of fibre you're eating more than on the overall amount of food you consume or calorie intake.

I eat loads more than people with anorexia too - I've had a whole team of experts completely unable to explain why, while they monitored my food intake for weeks and weeks while I was in hospital.
This is why groups like this are so important. Comparing and learning from personal successes and failures helps to get answers to many of our frustrating health issues. The insights learned here along with our own personal experience are so helpful. We have to remember that even a "team of experts" do not always know the answers.
04-08-2015, 06:13 AM   #95
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Does gluten play an important nutritional role in the diets of people who are not gluten intolerant?
04-08-2015, 06:35 AM   #96
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Usually people who are not gluten intolerant (or who might be, and don't know it), give up gluten to motivate themselves into eating whole foods - that's probably the only time when it becomes an important role in regards to nutrition. Part of the problem with people thinking it's a "fad" is because many people try to substitute their food with gf options (i.e. gluten free bread, cookies etc). If you are making attempts to heal your gut, stay away from those substitutions at first.
04-08-2015, 08:36 AM   #97
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Usually people who are not gluten intolerant (or who might be, and don't know it), give up gluten to motivate themselves into eating whole foods - that's probably the only time when it becomes an important role in regards to nutrition. Part of the problem with people thinking it's a "fad" is because many people try to substitute their food with gf options (i.e. gluten free bread, cookies etc). If you are making attempts to heal your gut, stay away from those substitutions at first.
We should look at diet restrictions as an opportunity to try new whole foods. You are correct, there are many people that search out recreations of their favorite foods (cakes, cookies, candy, soda) without the damaging ingredients like gluten or sugar. Then we find out that the replacement chemicals are much worse for us (like artificial sweeteners). This gluten intolerance trend still has me wondering about the usefulness of this ingredient for any of us.
04-08-2015, 11:04 AM   #98
UnXmas
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JeffBee - I'm sorry, I realised my post basically just dismissed your idea of cutting out gluten. I had a horrible time in the past where various nutirionists and alternative therapy practitioners made me believe I'd get better if I did what they said and cut out all sorts of things from my diet - gluten was one of their favourite things to ban. I ended up confused and feeling like a failure when my health just got worse (and my weight dropped) and I had driven family and friends mad by excluding myself from meals and making my mum buy all different foods and pay for useless food intolerance tests and alternative therapy appointments (I was a teenager at the time).

I would still advise people to be careful about cutting out gluten. As gluten is in so many foods, avoiding it could make gaining weight harder if you haven't found good substitutes. Getting a proper test for coeliac is also a good place to start if you suspect your symptoms are affected by gluten. From what I've read in the media and elsewhere, there is some confusion about at the moment over whether people without coeliac disease can have some other kind of sensitivity to gluten, or whether gluten is just generally unhealthy for everyone. Personally, I think that last possibility is unlikely, I think gluten is fine for most people. I do think it's possible that some people with Crohn's or other digestive disorders could have difficulties digesting gluten; most of us do have trigger foods or find we can improve our symptoms by adjusting our diet. But if someone really needs to gain weight, I don't think it's a great idea to start cutting out something like gluten which would require cutting out so many common foods. The exception to this would be if they suspected the food was so bad for them that eating it results in major symptoms or malabsorption and is actually hindering weight gain. But if someone does suspect this, I think that's serious enough to warrant consulting a doctor. (I've done this - the problem for me was too much fibre, and doctors recognised the need for a low fibre diet. I also found out that my digestive system just couldn't handle NG feed, which my doctors stopped as it was clear the NG was making things worse and not helping me gain weight at all.)

Also, you may find it harder than you think to identify foods that cause you problems. When I've tried various exclusion diets, I found I often saw patterns that simply weren't there. Often our symptoms are not the result of anything we've eaten or otherwise done "wrong" in our lifestyle - sometimes we are just ill, for reasons we can't identify and which we can't control.

Last edited by UnXmas; 04-08-2015 at 12:39 PM.
04-08-2015, 04:40 PM   #99
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No apology necessary UnXmas,
During my many years with Crohn's (40+) I have talked to lots of docs, lots of nutritionists, lots of alternative practitioners. I have tried many therapies from meds to accupuncture to red light therapy. When I walk into a new doctors office I remind them that I am a professional, a professional patient. I will listen to them, but they better listen to me and my vast history of experiences. I have a short fuse when it comes to a young practitioner who wants to give me a restrictive diet or dozens of tests. Makes me feel like a Guinee Pig. If I went totally vegan or on the Gerson Therapy diet I would disappear (weight-wise). I have never been a big meat eater but not against animal protein. It has helped to hear about people with IBD on gluten-free diets.
04-08-2015, 08:23 PM   #100
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I struggle with weight gain, I know I need to gain weight but I don't like the way fat deposits on my body (all in my abdomen), making my clothes not fit right. So now, I am working on weight gain along with doing yoga to hopefully help my body stay flexible and in shape with the added weight. I am a vegetarian and I do try to stay away from a lot of gluten. For me, it is only the refined, bleached flour that I have problems with, if I cook with unbleached flour, it is fine. I also try to incorporate other gains just because I believe a variety of food sources will give my body access to more chemicals/minerals it needs. Avocados on crackers is delicous and high in calories. I also use a lot of olive oil and sesame oil in cooking. Sesame sticks are a high calorie snack that don't upset my stomach.
04-09-2015, 04:49 AM   #101
UnXmas
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This is why groups like this are so important. Comparing and learning from personal successes and failures helps to get answers to many of our frustrating health issues. The insights learned here along with our own personal experience are so helpful. We have to remember that even a "team of experts" do not always know the answers.
Unfortunately this forum hasn't been able to help me any more than the experts.
04-09-2015, 07:13 AM   #102
Gail Jothen
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I visited my dr. yesterday; I have lost more weight. He agreed that mercaptopurine was upsetting my stomach so I stopped it and my stomach pain is less. He also said that IBD/crohns WILL prevent the digestive system from absorbing nutrients from food. And a brochure in his office stated: "Weight loss--your intestines aren't able to take in nutrients from food, and your symptoms may cause you to lose your appetite." That's me. Also he said this disease causes one to be tired all the time, which is also me. I hope to start Remicade in 2 weeks and I pray it will truly help me as I am having a very difficult time with this "challenge." I look anorexic but I eat at least 1000 calories a day....boring calories but healthy ones. I also am buying Peptamen on line. Has anyone used it?
04-09-2015, 07:29 AM   #103
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1000 calories a day isn't enough. The average woman needs 2000 calories a day. Your weight loss may well not have anything to do with malabsorption, you're just not taking enough in from lack of appetite (I know how hard that can be). When I was in hospital I was eating 3000 a day and not gaining much - that got my doctors concerned about malabsorption.
04-09-2015, 08:15 AM   #104
Gail Jothen
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thanks UnXmas. I know 1000 calories is not enough but I am full after I eat and I have not been hungry for months. I also think 1000 calories is more than an anorexic eats. I am of very slight build. Since I quit the mercaptopurine I have had 2 times of hunger. And then I had oral surgery last week which means I can eat only soft foods for 3 weeks during which I expect to lose....I made a veggie soup with lots of starch veggies and Udo's oil and I put coconut fat in my almond milk....I am hoping the Remicade and healing from the oral surgery will allow me to start gaining weight. All sorts of things go haywire with me when I am losing weight. So I am trying harder to eat more. I wonder about refugee camps and how those people survive.....
04-09-2015, 08:22 AM   #105
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I don't think there is a typical amount someone with anorexia eats is there? But it definetly sounds like your primary issue is with taking enough calories in rather than them going straight through you unabsorbed.

As for refugee camps.... as I said in a couple of posts on this thread, my weight is incredibly low, lower than many people with anorexia I would imagine. And yet I survived emergency surgery at this weight. But in famines many people do of course die, or have severe health problems.

Were you given any dietary advice following your surgery beyond being told soft food only? Have you tried Ensure or other liquid food supplements? They also do powder supplements that you can mix into soups and things.
04-09-2015, 10:52 AM   #106
Gail Jothen
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UnXmas, I just imagine anorexias eat very little. Right now I am eating a BIG bowl of starch veggie soup. I had 5 eggs for breakfast. After the oral surgery, the instructions said no dairy, which I don't do anyway. Ensure bothers me. Peptamen is a liquid food supplement, on back order for me. I also use powdered rice protein and powdered VEGA, but neither have many calories. The food world is so concerned about those who are dieting to lose weight we who want to gain are quite limited in choice. Yes, refugees camps from war are not famines. I don't know what the mortality rate is....
04-09-2015, 01:40 PM   #107
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Why no dairy after oral surgery?

I realise refugee camps aren't famines, but in any kind of food shortage it seems some survive. Though in our society, when you hear overweight people saying they hardly eat anything and they still just don't lose weight, the fact that you don't find any overweight people in famine situations shows they can't be right when they say they don't eat much - everyone loses weight when they don't eat too much.

I'm not sure it's true that high calorie options are hard to find in our society - there's plenty of junk food around, that's a big reason why so many are overweight! It is very isolating for those of us who are underweight though, as all the messages conveyed by the media and diet industries assume everyone is either overweight or struggling not to become overweight.

But there are prescribed supplements available to help with weight gain, and there are foods and drinks high in calories, and not just "junk". Nuts (smooth peanut butter if nuts are too high to digest), seeds, olive oil, cheese, butter, milk (obviously these last ones are only if you can have dairy)- these are all high calorie foods that you can easily add into most meals. And a moderate amount of junk is going to be healthier than remaining very underweight, and easy to come by despite how many people are trying to lose weight.

Soup doesn't sound like the kind of food that would help raise your calorie intake. Low calorie foods can of course be included in a diet that's enabling weight gain, but if your calorie intake really is 1000 a day at the moment, I would think you need to prioritise increasing that when deciding what to eat. And that many eggs is not something many people with appetite problems would consider having. Does it not make you very full to eat that much?

Last edited by UnXmas; 04-09-2015 at 01:58 PM.
04-11-2015, 12:28 AM   #108
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Hi, guys.

I was referred here by UnXmas, so thanks!!

I've skimmed through all the comments. I've gotten to about 83/85ish pounds at my lowest. I'm currently hovering around 88. Blehhh. I'm not happy ANYONE is going through this, but it's nice people understand.I always get the comments about "I'll give you some of my weight" or just plain rude comments. I, too, have cried after people make comments.

I am nauseous a lot and I also just lack an appetite. I get full really fast. Lately, I've done research I've been trying to eat full fat yogurt and whole milk ( I haven't noticed an issue with Dairy thus far). I heard adding coconut oil and butter to everything helps. And peanut butter. I guess I just don't really know what I shouldn't be eating. The only thing I know for sure I can't handle is spicy food. And obviously corn and nuts. Everyone says nuts are good but I don't like them, plus they're like a huge no-no, right?

I also invested in this vanilla weight gain powder. It's disgusting. It doesn't blend. I also got Boost but I don't know. It just doesn't seem to help and it's so expensive to keep up with. I saw a Nutritionist last week. It was a total waste of time. I was told to eat more. K.Thanks.

I'm just getting to this point where I want so badly to gain weight, to look and feel healthy, but I'm exhausted. I'm tired of trying and seeing no changes. I've kind of given up on it mentally but I can't.
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Crohn's Disease
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Officially diagnosed: January 2013
Fistula and Abscess: 2016/2017
Bowel Resection: April 2017
Pulmonary Embolism: April 2017

Current Meds: Xerelto

Weight gain journey. Currently 92 pounds.

"I took my bruises, took my lumps, fell down and I got right back up" Eminem
04-11-2015, 03:47 AM   #109
Basmah
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It is such a mentally exhausting thing to deal with, especially when other people make unhelpful comments. JustThatGirl, how are you with making your own shakes (without the powder)? If you can handle them, try making some with healthy fats and protein, like avocados, nut butters, and the yogurt. I know you get full easily, but it's worth to try drinking some of your calories for the time being (not a long term plan).

I bought a scale yesterday, and now I weigh 122 lbs. It's a start! I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.
04-11-2015, 07:25 AM   #110
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I saw a Nutritionist last week. It was a total waste of time. I was told to eat more. K.Thanks.
That's what the last dietician I saw said.

Nuts cause symptoms for a lot of people because they're high fibre and difficult to digest. If you have problems with fibre generally, you'll probably have problems with nuts and seeds. Smooth nut butters are ok though.

I don't think protein powders, etc. do much more than drinking milk would do for you if you just want liquid calories.
04-11-2015, 08:39 AM   #111
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I just started counting calories using "Live Strong Calorie Counter" app. It's hard to depend on my memory. I need 2,500 calories to gain a pound per week. A high speed blender is your friend when your GI track is not doing well. I drink a smoothie every day and just by adding 2 TBLPS. of coconut oil is 240 calories - now I have to add the rest of the ingredient calories (banana, hemp powder, cocoa powder, fresh ginger, a few ounces of juice with water. And then I hope I am absorbing it all? Now onto the rest of the calories.

Last edited by JeffBee; 04-11-2015 at 09:00 AM.
04-11-2015, 03:24 PM   #112
buttER
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Hi JustThatGirl
Welcome to the group.
I find it hard to eat anything when I am nauseous, yet alone put on weight. Do you know what is causing the nausea? Can you do anything to be less nauseous? Have you talked to a doctor about it? There are so many anti nausea medicines out there. It could be a good short term solution.
I understand the exhaustion and frustration. Please don't give up! Slowly but surely, small steps in the right direction, don't expect miracles (well I do but I havent had one yet).
04-11-2015, 03:30 PM   #113
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I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.
Hi Basmah
I had a colonoscopy 10 days ago. I feel like my guts are worse than they were before the colonoscopy, I mean in terms of a flare rather than the discomfort from the procedure.

That means I have not been eating well or enough since then. It is really frustrating. (I am also on holiday with my family and I haven't been able to do most of the things I would like to do). I hope that the lack of food will help calm things down but it is hardly a good long term plan.

Plus the doc saw very mild inflammation but I imagine it is already worse than that now, would he believe me? I remember I had the same problem after the last colonoscopy.

Anyway, I hope you have more luck than me!
04-12-2015, 07:36 AM   #114
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I found the calorie counter helped when I was working to gain weight last year after surgery. It helped me stay away from too much fat and manage the fibre level as I was on a low fibre diet after surgery for 8 weeks.

My surgeon was big on getting enough protein I was drinking protein shakes before and after surgrey (I know this may be a specific case, but it may help). The only draw back was that they contained carrageenan, which some studies have shown to promote inflammation.

Smoothies with ice cream may help if you can tolerate dairy, that was one of my treats in the weeks after surgery.
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04-12-2015, 08:28 AM   #115
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Hi JustThatGirl
Welcome to the group.
I find it hard to eat anything when I am nauseous, yet alone put on weight. Do you know what is causing the nausea? Can you do anything to be less nauseous? Have you talked to a doctor about it? There are so many anti nausea medicines out there. It could be a good short term solution.
I understand the exhaustion and frustration. Please don't give up! Slowly but surely, small steps in the right direction, don't expect miracles (well I do but I havent had one yet).

I'm going to make an appointment with my GP this week to get something for nausea. I really don't know what's causing it. It typically isn't too intense, to be honest. It's just slightly there, but between that and not having an appetite, I have to force myself to even eat. Somedays I do better than others. I think a big portion for me is mind over matter. I just never realized how hard it is to eat with no appetite. I try to eat things I used to love, but they just don't appeal to me anymore. Or like I've mentioned, if I do feel hungry, I'll take a few bites and feel full and lose any appetite I had.
04-12-2015, 08:36 AM   #116
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It is such a mentally exhausting thing to deal with, especially when other people make unhelpful comments. JustThatGirl, how are you with making your own shakes (without the powder)? If you can handle them, try making some with healthy fats and protein, like avocados, nut butters, and the yogurt. I know you get full easily, but it's worth to try drinking some of your calories for the time being (not a long term plan).

I bought a scale yesterday, and now I weigh 122 lbs. It's a start! I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.

In the morning, I do the Carnation Chocolate Breakfast mix with whole milk. At night, I usually srink a Vanilla Boost *Plus*. I'm not very fond of the vanilla but that was my only option of the plus that came in bulk. It's cheaper that way. Next time, I'm getting the Equate version because their plus that comes in bulk is available in chocolate.

I try to make smoothies with this vanilla powder for weight gain. It's called Natures Best. I usually do banana, 3 scoops powder, peanut or cookie butter and milk. I just really don't like smoothies so far. I don't think I have them cold enough for one and I've been told straws are the only way to go. I'm going to invest in some straws and suck it up... literally ha

I'm hoping it's an acquired taste. I used to hate yogurt but after a couple of years of experimenting and pushing on, I'm a fan!
04-12-2015, 08:42 AM   #117
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Who else is experiencing body image issues? I find it REALLY hard to connect with anyone on this. I know a lot of people have body image issues but in our culture, it's usually they feel overweight. It's like people ridicule me for being so skinny but if I express how I hate it, I'm brushed off like it's no big deal.

I have never been big or even super curvy. I used to weigh about 105 but I looked healthy and had some curves. I threw all my old jeans out because where I used to fill them out in the butt, hips, and thighs, they just sag now. An old manager "jokingly" told me I lost my butt and I know it's stupid but every time I hear stuff like that I want to crawl in a hole. I hate being 25 and having the body of a 12 year old. I mean, I HATE it.
04-12-2015, 01:19 PM   #118
buttER
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Who else is experiencing body image issues? I find it REALLY hard to connect with anyone on this. I know a lot of people have body image issues but in our culture, it's usually they feel overweight. It's like people ridicule me for being so skinny but if I express how I hate it, I'm brushed off like it's no big deal.

I have never been big or even super curvy. I used to weigh about 105 but I looked healthy and had some curves. I threw all my old jeans out because where I used to fill them out in the butt, hips, and thighs, they just sag now. An old manager "jokingly" told me I lost my butt and I know it's stupid but every time I hear stuff like that I want to crawl in a hole. I hate being 25 and having the body of a 12 year old. I mean, I HATE it.
Thats a tough one. You will have to learn to accept how your body is, even if it not how you want it to look. I think that is true for almost everyone.

I also hated being really really thin (no butt no nothing) and I did get self conscious about it.

But in general I don't really care how I look. I do have alot of self confidence in that I don't really care what people think about me and I am happy with myself within reason. Who wouldnt want to change a thing or two about themselves?

I think that has always been my attitude. Why beat yourself up over yourself, life can be tough enough anyway.
04-12-2015, 02:23 PM   #119
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Honestly, I can't say it bothers me. Except the assumption strangers make that I'm anorexic. With people I know, who know I'm not anorexic, I don't care, and I don't mind looking like this.

I understand on one level though. When prednisone made me grow a bit of facial hair, I hated it. People just have different things that ruin their self-image, I think.
04-12-2015, 02:38 PM   #120
Basmah
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JustThatGirl, I am with you on that one. I have been told that I looked anorexic, and that I have a body of a 12 year old boy. For a while it didn't bother me, but lately it's been pissing me off because I am trying to hard to be healthy and finally taking control of my Crohn's. It's working so well, yet people don't understand it. It came to a point where when I was working, I went into an office by myself, and just bursted into tears.

Also, it made me realize that some people just have no tact (even when they say things with the best of intentions) - I mean why is it okay to tell someone how skinny they are, and not someone else how fat they are? I woud personally never tell someone they'e fat because (1) Chances are they know that, (2)I honestly don't know what they're going through, and (3) I am not going to actively do anything to help them - unless if they want me to. The best thing you can do is say, "I appreciate your concern, and I am doing my best to take care of it. If I want any advice, I will ask for it." and then move on.
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