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03-30-2015, 11:16 AM   #61
InstantCoffee
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Thank you for explaining, InstantCoffee, and I'm sorry if my questions were annoying, but as you said, a "pure meat diet" would be veryunhealthy, and I think it's appropriate to question something potentially dangerous.

I've had very different experiences with elimination diets: the more I cut out, the sicker I got and the more weight I lost. I used to benefit from eating a low fibre diet up until my last surgery, though I had no specific trigger foods, which was one reason elimination diets weren't good for me - I could improve my symptoms by changing my diet as a whole, but not by eliminating and eating specific foods. I know a lot of people do benefit from eliminating foods, but I think you would be an exception if you are symptom-free when you avoid all your trigger foods. A lot of people will have symptoms no matter what they do and don't eat, which must make it much harder to identify trigger foods.
Best I can guess is that intestinal flora works both ways.
If you have a healthy gut flora balance, starving it of the foods it needs to survive could be killing it off leaving your body to have to digest food in other ways (increased acid, bile production etc.)

It's also possible Crohn's is different conditions with a blanket diagnosis and mine is different considering I seem to be one of the few that's completely untouched by dairy.
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03-30-2015, 02:59 PM   #62
UnXmas
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It wasn't because of flora that elimination diets didn't help. Mainly it was just that I don't have any trigger foods, so I was never going to improve as is supposed to happen. Then eating diets of just a few foods either made me sicker in that I lost weight because I couldn't eat enough (e.g. when just eating rice or similar plain foods), or they made me sicker by ruining my digestive system because the diet was too high in fibre (e.g. diets that forbid all processed food and consist of a lot of vegetables and nuts) and/or too much hard-to-digest foods like meat.
03-31-2015, 02:43 PM   #63
buttER
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Colonoscopy prep + travelling on holiday + PMS and period = expecting to lose quite alot of weight in the next few days.

As you all know, it is much easier to lose weight than to put it back on. The doctor doesnt realise how demoralising a colonoscopy prep is just in terms of losing precious weight.
03-31-2015, 08:34 PM   #64
InstantCoffee
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It wasn't because of flora that elimination diets didn't help. Mainly it was just that I don't have any trigger foods, so I was never going to improve as is supposed to happen. Then eating diets of just a few foods either made me sicker in that I lost weight because I couldn't eat enough (e.g. when just eating rice or similar plain foods), or they made me sicker by ruining my digestive system because the diet was too high in fibre (e.g. diets that forbid all processed food and consist of a lot of vegetables and nuts) and/or too much hard-to-digest foods like meat.
I can recommend you the protein shake I get, it's the ONLY one on the market I can safely digest, but it's hard to get. It's from Russia and the price fluctuates between $35 and $50 week to week on Amazon, I have to order off other sites to get good deals sometimes.

It's called Russian Bear 5000, it also has all your daily recommended vitamins and minerals, medium chain triglycerides and a bunch of herbal weight-gain and health supplements in trace amounts like colostrum, yohimbe bark, tribulus, some others, feel free to look them up.

The sugars are from glucose polymers which is why I believe it's so safe for my belly, low fructose content.
04-01-2015, 04:44 AM   #65
UnXmas
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Colonoscopy prep + travelling on holiday + PMS and period = expecting to lose quite alot of weight in the next few days.

As you all know, it is much easier to lose weight than to put it back on. The doctor doesnt realise how demoralising a colonoscopy prep is just in terms of losing precious weight.
When I was in hospital last year to gain weight, and I wasn't supposed to go home until reaching a target weight (though in the end I did go without reaching it), they made me have an upper endoscopy (no food for half a day) then a small bowel MRI (no food then drink the laxative contrast). When they then ordered a pill cam, I refused to have it.
04-01-2015, 04:54 AM   #66
UnXmas
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I can recommend you the protein shake I get, it's the ONLY one on the market I can safely digest, but it's hard to get. It's from Russia and the price fluctuates between $35 and $50 week to week on Amazon, I have to order off other sites to get good deals sometimes.

It's called Russian Bear 5000, it also has all your daily recommended vitamins and minerals, medium chain triglycerides and a bunch of herbal weight-gain and health supplements in trace amounts like colostrum, yohimbe bark, tribulus, some others, feel free to look them up.

The sugars are from glucose polymers which is why I believe it's so safe for my belly, low fructose content.
Really not my kind of thing: I'm female and weigh 35kg (up from 29kg).
04-01-2015, 06:01 AM   #67
buttER
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When I was in hospital last year to gain weight, and I wasn't supposed to go home until reaching a target weight (though in the end I did go without reaching it), they made me have an upper endoscopy (no food for half a day) then a small bowel MRI (no food then drink the laxative contrast). When they then ordered a pill cam, I refused to have it.
I love their methods for making sure you put on weight!
04-01-2015, 07:44 AM   #68
UnXmas
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Well to be fair to them, I'd been there weeks and was eating over 3000 calories a day and had hardly gained anything. On admission, they were assuming I had anorexia in addition to physical problems, they assumed I'd been eating hardly anything and expected the weight to go on when they made me eat a lot. When that didn't happen they had a panic and ordered every test they could think of.
04-02-2015, 10:00 AM   #69
Basmah
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Good for them to cover all the basis to make sure you gain some weight. I remember a few years ago when I was hospitalized, and they were treating me for anorexia as well, even though I wasn't. One of the IV's they gave me had some sort of sugar substance in it to give me nutrients. The problem was after a few days, I was eating less and less, and I knew it was because of the IV. The doctor was insistent on giving me a colonoscopy (after doing all of these other tests) to see what's wrong, but I argued with her that I wanted to go home since I knew what was making me not hungry. I did get to go home the next day, and ate like a horse lol. I am glad to hear that you are gaining weight, UnXmas. I have been at 118lbs for a few months now, but I just weighed myself at the gym today, and it said 121. Woohoo, I am getting there!
04-02-2015, 11:49 AM   #70
Gail Jothen
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I don't have a scale so don't know if I am losing weight, but my stomach hurts a lot and I don't want to eat. I am on prescription Prilosec and endecort and take carafate before each meal but it does not seem to calm my pain. Any suggestions? I do have a nutritionist and she just changed my diet....added fish and ground turkey, I had the turkey for dinner last night and think it may have caused the pain.
04-02-2015, 12:19 PM   #71
UnXmas
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Turkey and fish are generally pretty well tolerated. Sometimes you can just get symptoms whatever you eat.
04-02-2015, 05:37 PM   #72
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I just got back from my dr. My mom went with me, she told the dr that I was starting to look like her mom before she died. She then proceeded to call me gaunt, and freak out saying that with how thin I was, she was afraid I would be dead in 6 months. I think she was being a tad dramatic.
04-02-2015, 10:56 PM   #73
Gail Jothen
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Actually it takes quite a while to starve to death, especially if you are still eating as we are even tho our food is not being digested right nor do we eat as much as others who are overweight. My mom decided to die (she had become blind and was bored with life) and she was very skinny when she decided to die and it took 3 months. Of course she drank liquids, just not any food. She died very peacefully at home; she was 88 years old.
Yes, your mom is not correct; you are not going to die for a long while even with crohns
04-03-2015, 04:43 AM   #74
UnXmas
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As I said in my first post:

. My lowest ever weight was last year, when I went into hospital because of it, I had a bmi of 10. (I'm in the UK, and work in cms and kilos - I weighed 29kg and I'm 164cm tall - I had been measured at 165 previously, but was measured last week and apparently I've lost a cm. I think translates as 64lbs and and 5'4".)
I even had emergency surgery at this weight last year, and I'm still living (though the surgeon did warn me before the surgery that I might not survive it).

I seem to adapt very well to low weights. I'm not sure how other people would though. But while you probably won't die, being underweight can lead to chronic health problems, so it's still best avoided.

What did your doctor say, cantthinkstr8t?

Last edited by UnXmas; 04-03-2015 at 05:00 AM.
04-03-2015, 08:32 AM   #75
cantthinkstr8t
 
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What did your doctor say, cantthinkstr8t?[/QUOTE]

He said I have lost too much weight too quickly and he doesn't really know what is wrong. He has no idea what is going on and I am a "rare" case because I have other health issues.

He thinks I may have an obstruction so I am scheduled for a CT scan on Monday. They ganged up me again not working.
04-03-2015, 09:03 AM   #76
Gail Jothen
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I lost weight quickly, 37 pounds (more than 16 kg) in 2 months. I was sent to a psychiatric hospital to learn to think positive! I also had lots of pain. I tried various helps (naturopath, acupuncture etc.) but after 4 years of losing more weight and being depressed, I had a pill cam and the (new) doctor found 9 ulcers in my upper intestine which can be found only by a pill cam. Other tests do not see or go to that area. I am still on anti anxiety medicine from the psychiatric hospital and would love to get off them as I think they dry out my body too much, including my stomach, which is not healthy for digestion.
I guess this is why doctors "practice" medicine.
04-06-2015, 10:16 AM   #77
UnXmas
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Hi guys, I've written some weight gain tips as I thought it could be a useful thing to add to this thread. They're pretty basic, but if anyone's got any more tips, or lists of high calorie foods, recipies, etc. feel free to add them to the thread.

Unintentional weight loss or an inability to gain weight can occur because you're not consuming enough calories (e.g due to lack of appetite) and/or because of malabsorption. Weight loss may need to be addressed medically in addition to addressing your diet.

Weight gain diet tips:

- Exercise is healthy but does burn some calories, so limit strenuous exercise. If you're very underweight you may need to limit all physical activity.

- Eat what appeals to you, even if it's not healthy. It's easier to eat if the food tempts you. If you're very underweight, it can be better for your health to eat some junk food in the short term rather than force down only healthy food and fail to gain weight.

- Eat little and often.

- Consume high calorie drinks. Liquids are less filling than solids.

- Your doctor may suggest supplements like Ensure, Fortisip or Boost. These provide all the nutrients you need (so you won't need to fill up on low-calorie vegetables in order to get vitamins).

- Eat high calorie foods. This one's obvious, but it may be worth checking you're not mistaken about the calorie content of your food.
04-06-2015, 04:22 PM   #78
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Thanks for getting me over to this thread. It makes sense to eliminate gluten if you read how it flattens the villi in your small intestine and prevents absorbption of nutrients. As mentioned in other thread I have had Crohns for over 40 years with a large length of my small intestine removed about 28 years ago. They took a tiny bit out 4 years ago and widened the inflammed sections (strictureplasties). I have never been over 140lbs and now I weigh in at 128lbs. Most of my life, so far, I have weighed about 136 (5'/9"). I love most every food and never loose my appetite, but the food slides right through me.

I would like to hear some more encouraging stories about gluten-free diets.
Thanks! --Jeff

Last edited by JeffBee; 04-06-2015 at 07:51 PM.
04-06-2015, 06:56 PM   #79
Gail Jothen
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Jeff, I have been gluten free for about 3 years and it has definitely helped. I have used the FODMAP diet which has helped me the most. I was weaning off Budesonide (endecort) recently so had a flare up and dr put me on mercaptopurine, and my stomach has been hurting a lot which I think may be the mercaptopurine, so am going off it and trying infusion. So I can't tell you gluten free cures you but if I ate gluten I would be much worse.
I read somewhere that bread today has more yeast than years ago as bread companies want the bread to rise quickly, and it causes the gluten to be stronger. Here's the site:



http://www.motherjones.com/environme...health-problem
04-06-2015, 07:08 PM   #80
Basmah
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I went gluten free first, and it helped me out a lot. I found out though that I was sinsitive to other things, so I am now eating a bland diet of meat, cooked veggies, and cooked fruit. can only have some olive and sesame oil, and now a little soy sauce with no problem, but I am not eating any dairy, grains, or nuts at the moment. It's seriously helping me out a lot. I was on 100mg of mercaptopurine a day, and now I am at 63.5 (will reduce to 50 after my colonoscopy this Thursday). It's helped me out so much..my energy and mood are better, and my inflammation rates are going down. I won't say that gluten free cures you, but actively trying to figure out what triggers you (not just food, but exercise, work, general lifestyle) will make living with this disease more tolerable.
04-06-2015, 08:08 PM   #81
Gail Jothen
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Well, I am jealous mercaptopurine helped you so much. I have been on it 3 weeks and have been having a LOT of stomach pain which can be a side effect. I am seeing my dr. on Wed. and he may give me mercaptopurine as an infusion. (My husband jokes "immersion." I suppose it costs a lot more.
I am flying to MN Thursday to help babysit my 2 grandchildren and there is no way I can do that feeling the way I feel today.
04-06-2015, 08:22 PM   #82
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Thanks so much Gail and basmah.

I know that everyone in this group knows there is no universal cure for IBD. When you have a disease like Crohns you realize just how unique we are and can't simply follow a specific diet or multiple diets(I have tried a lot) without monitoring and testing your reactions. As a teenager, when I was diagnosed with Crohns my GI Doc peeled of a "bland" menu from a pad and told me to follow the diet. He gave the same diet to all his patients. I think of him every time I eat a handful of almonds (well chewed) or a raw vegetable salad (I eat daily). They were both forbidden items. By the way, I soak my raw almonds in water for about 8 hours and peel the skins. When I forget to soak in the evening I can still eat some, but prefer the taste and texture after soaked.

Yesterday I downloaded a FODMAP app on my phone to remind me of the foods That don't digest well. I have practiced Food Combining for years and sometimes eating a forbidden food by itself or with acid or base foods gives me no problems.

I feel good about eliminating gluten, but i have to get enough calories to put some "meat" on my bones.
04-06-2015, 08:48 PM   #83
Gail Jothen
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Jeff, thanks for the info on almonds. They are so good for us and I don't eat them as it hurts. I will try your technic and maybe I can eat them. I desperately need to gain weight. What about soaking cooked almonds? Would that be even easier to digest? Why do you use raw almonds? and what do you mean about food combining, please? And does anyone eat avocados? It is a no no on the FODMAP diet, but high in good fat.
04-06-2015, 09:05 PM   #84
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Gail, I read this book back in the 60's. I think it was published in the 50's. A lot of info has stuck with me. Check the food combining charts first. http://www.soilandhealth.org/02/0201....combining.pdf

Raw almonds are the way they come out of the shell with skins. Skins are difficult to digest for some people. Soaking them for 8 or nine hours (I use distilled H2O) is fine. They don't need to be cooked. Remove skins. If you are a bit concerned about chewing, eating, digesting then put a handful in a high speed blender with a few ounces of H2O. You just made almond milk (but a tiny bit chunky depending on your blender).
04-07-2015, 08:22 AM   #85
UnXmas
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And does anyone eat avocados? It is a no no on the FODMAP diet, but high in good fat.
I used to eat a lot of them because they're one of the few fruits which are ok on a low fibre diet and which don't cause stoma blockages. They're high calorie compared to other fruits and vegetables. But since my last surgery and getting my new stoma which doesn't block I've been so glad I can eat all the fruit and vegetables I like and am no longer so limited, so even though avocados have more calories I need a break from them!
04-07-2015, 08:41 AM   #86
Gail Jothen
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thanks, Jeff and UnXmas. I am going off mercaptopurine pills and may be trying infusion so maybe I will feel like eating.
04-07-2015, 02:48 PM   #87
buttER
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Hi guys, I've written some weight gain tips as I thought it could be a useful thing to add to this thread. They're pretty basic, but if anyone's got any more tips, or lists of high calorie foods, recipies, etc. feel free to add them to the thread.

Unintentional weight loss or an inability to gain weight can occur because you're not consuming enough calories (e.g due to lack of appetite) and/or because of malabsorption. Weight loss may need to be addressed medically in addition to addressing your diet.

Weight gain diet tips:

- Exercise is healthy but does burn some calories, so limit strenuous exercise. If you're very underweight you may need to limit all physical activity.

- Eat what appeals to you, even if it's not healthy. It's easier to eat if the food tempts you. If you're very underweight, it can be better for your health to eat some junk food in the short term rather than force down only healthy food and fail to gain weight.

- Eat little and often.

- Consume high calorie drinks. Liquids are less filling than solids.

- Your doctor may suggest supplements like Ensure, Fortisip or Boost. These provide all the nutrients you need (so you won't need to fill up on low-calorie vegetables in order to get vitamins).

- Eat high calorie foods. This one's obvious, but it may be worth checking you're not mistaken about the calorie content of your food.
Thanks for that UnXmas. I agree with going with what you want to eat and not worrying about is it healthy. Fruit and veg = nearly no calories. I am a vitamin pill fan.

The advice that stuck with me was always:
- add an extra spoonful to the plate
- cut the slice (bread, cake, cheese, you name it) a bit bigger
- slather on a bit more spread or filling
- take an extra sip

I think about it now every time I prepare or serve food for myself. Those little extras add up.

Personally I think eating at regular times helps because then the body expects food and gears up for it. It's not always possible (I often skip breakfast because I can't face it).

Oh yes, and the days I feel nauseous and can't face food I pop an anti nausea pill and then I can usually eat a decent amount. Is that good advice, I don't know?
04-07-2015, 02:49 PM   #88
buttER
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I used to eat a lot of them because they're one of the few fruits which are ok on a low fibre diet and which don't cause stoma blockages. They're high calorie compared to other fruits and vegetables. But since my last surgery and getting my new stoma which doesn't block I've been so glad I can eat all the fruit and vegetables I like and am no longer so limited, so even though avocados have more calories I need a break from them!
I haven't checked out the FODMAP diet but every time I try an avocado it makes me sick. Shame because I love them.
04-07-2015, 02:58 PM   #89
buttER
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I would like to hear some more encouraging stories about gluten-free diets.
I am another one who believes they have been helped going gluten free. My diarrhea was fatty and sticky and pale, and that changed when I went gluten free. I do not feel bloated any more and I am certainly less nauseous. It is not the whole answer but I think I am better without it. Put it this way, I don't want to restart to see what happens.

It is not the easiest diet (married to a french man - baguette, croissants, pastries.......), good alternatives are hard to find and it's worth investing in a gluten free baking book if you have time to prepare things yourself. I make my own cereal, bread (from a bread mix), biscuits, cake. The shop bought stuff tends to be too high in sugar and fat for me.
04-07-2015, 04:54 PM   #90
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I know loading up on calories is important for weight gain, but if my, reduced length, small intestine is not functioning efficiently and my absorption rate is miniscule then I don't know if quantity is always the best approach. Some days I see a 3 to 4 lb difference in weight from the time I go to bed to just after a visit to the bathroom in the morning. The quantity leaving my body is huge. If the Villi in my small intestine are not transporting nutrients or my enzymes are not doing their job, I can graze every half hour for 12 hours and never see a permanent weight gain. How do I fix "my machine"? Is medication the answer or diet modification. I know gluten-free is a first good step.
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