well, i've seen that in my topic about PFT's there was also plenty of talk about weight issues and eating disorders that some of us have/had, and you know, lets have a separate topic about that.lets talk about our weight issues. how are you about keeping weight up - do you have a problem with it? do you take food supplements [ensure, fortashake, scandishake, etc.]? do you have any issues with food, weight? eating disorders? anything else?about me:i was always very much underweight, up until i was 10 and a half. well, i was basically underfed and under-medically taken care of, since i lived in ukraine [former soviet union] and everything was really bad. at the age of 10 and a half i was 4"3 and weighed 52 pounds. really, really skinny arms, bloated belly, bony legs - old-fashioned stereotypical CF poster child. it did change when we moved to israel - for example, from my 11th birthday to my 12th birthday i gained 2 inches and almost 9 pounds. in one year! and i continued to grow and gain like a good girl - with proper nutrition, food supplements and great CF care. i have had signs of eating disorder since age 11, i guess [i went through my files and saw the dietician notes]. from age 15/16 i have stopped eating in public and with friends/lovers - a major part of anorexia nervosa. i became fully anorexic at age 19 [a year and a half ago]. before anorexia i was 5"2 and weighed 116.6 pounds, and at my lowest anorexic weight i was 88. it was caught very fast, though, due to constant CF checkups which included weight check and the fact that i cannot lie - when i was asked if i ate, i said no, when i was asked whether i will eat, i said no, and etc. i almost died because of that. i was hospitalized in an ED/Psychiatric ward for 7 months. it never was a big problem for me to gain weight before anorexia. i mean, if i ate well, and took my enzymes and two ensure plus per day, i gained/kept my weight. and there was always the issue of me always being able to eat anything - ice cream, chocolate, chips, and my mother even encouraging this, for example, always giving me money so i could have a cone. and of course, friends were jealous - especially in our teens. because they gained and i was always kind of skinny/moderate. and i guess this jealousy affects in a way, because i, too, started all that talk about calories and "oh i cannot eat that pizza" and how i need to lose some. i guess that "i-can-eat-anything" approach that came with CF played a part in my becoming anorexic - i went from one extreme, in which i could eat freely, to another extreme, where i didn't eat a bite. i am in recovery now, and it's difficult for me to keep weight, also to gain weight. me and my doctor have agreed that i have to be 105-106 pounds, no less. because low weight affects lungs very badly, and that's why i nearly died a year ago. i'm currently exactly 100 pounds, on a "weight-gain" diet. i do realize the importance of food, and that if i don't eat, i could eventually die. but in a way, i am still anorexic. there are the occasional thoughts and plans of how to lose weight, jealousy of skinnier girls, inability to eat in public, although that has gotten better [but for example, i have a new lover, and i don't eat when we're together, and i guess that's frustrating for both of us, though i voiced my problem]. there are many little things.well, that was long.your turn <img src="i/expressions/face-icon-small-smile.gif" border="0">
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the Food/Weight / Eating Disorder Topic
- Thread starter Lois
- Start date
Well, for a long time, even though I was underweight, i would limit myself alot.. and during the years where ones growthspurts should be, because of lack of weight, i didnt grow and am now stuck at 5´tall. When I was 13, I was very disspointed in the fact that I had gotten bigger then a size 12 in little girls sizes (meant for 10 year olds). Recently about 6 months ago, I stopped eating after i went up to 110lbs after steroids. The fact that I had fat in places that i never knew i should have fat was very disturbing for me. I believed that everyone was constantly looking at how big i was, and how round my face was. I sometimes get mad at the fact that I cant eat everything I want anymore. I go through periods of time that i stop taking all my enzymes and just let nature take its course.. i just recently went through one of thoseperiods and its someting I just dont want to do anymore. My lowest weight was 88lbs at 4´11" and my heaviest 123lbs at 5´0". How do you feel now? Do you still go through those times when you just want to be down again or? How has this influenced ur life and especially your health now?
<blockquote>Quote<br><hr><i>Originally posted by: <b>Merlin</b></i> Do you still go through those times when you just want to be down again or? How has this influenced ur life and especially your health now?<hr></blockquote>yes, there are still times when i want to lose weight, when i plan how to do that, days when i say "i do not want to eat today". i fight it off successfully, though. how did this influence my health? well, it damaged my lungs greatly. my average on FEV1 used to be in my nineties, then during anorexia it has gotten as low as 31%. then it was in the seventies [when i got better], and it's around sixty now. i cannot get it up now, only with IV's, probably. so basically, i lost about 30 points in FEV1 and went from excellent to blah. liver damage, as well. it was horribly enlarged all that time i didn't eat - and i didn't take meds as well, so you can guess what happened. i don't have liver disease - i take ursolit and liver in control - but it's worse now. my liver is much more sensitive to anything now. digestion system - i have to take twice as many enzymes now than i took before anorexia. and i have much more problem now gaining/keeping weight. basically, i f-ed up my body very greatly. i almost died of it last year, and i was 19.
Wow! I don't know why, but I thought I was the only one with CF who had eating disorders. I could eat anything I wanted and not gain a pound, yet I felt fat and disgusting. I still feel that way at times and I still don't understand why! For a long time, I did not take my insulin to lose weight. It made me very sick, but all I cared about was losing weight. I stayed under 100 lbs for many years.My dr. still tells me to gain weight even though I'm 5'4 and maintain 130-135 lbs. I don't want to gain more weight!! I'm glad this topic was started...I have so many questions. I've already learned a great deal from your stories - thanks!Stephaniehttp://geocities.com/steph65roses
I think it's easy to have an eating disorder with cf. I've had one since right after high school when I started to gain weight with steroids. It's hard to see other cf girls be so skinny, and it would confuse me when I would easily gain weight. Even though my genotype is supposed to be pancreatic insufficient. I never took enzymes until two years ago, and that's only because I started having horrible pains in my pancrease area. The doctors did all these tests to see if there was anything wrong, like Ultrasounds of my liver/stomach/pancreas. And I had CAT scans of my insides as well as, colonoscopies, and endoscopies = everything. Nothing was wrong except that my doctor says my body was putting too much stress on my pancrease by not using enzymes with my food. I still wouldn't take enzymes to this day, but when I tried to stop, I would get that horrible pain in my lower left rib again.I'm mad that I have to take enzymes, because I used to weigh 120-123, and now I'm 135 and gaining at 5'4". And I'm not a young gal, I am in my thirties. I'm so self concsious about my weight because I've always been small, and now I'm afraid that when people see me who haven't seen me for a while, will think, "she got big". You know everyone talks about people's weight behind their backs and talk about paranoia! But I would never admit to anyone that I have an eating disorder because I just wouldn't.It makes me sick when I read on these sites about how to gain weight and recipes for high calorie foods. But one thing, is that with my weight gain, my pft's and overall health is better. It's hard being normal weight with cf, when most people are sticks with cf. I dread the day if I get diabetes, I hear that puts weight on, and also if I have to go on steriods again, because of the weight gain. Anyway......I like to hear other cf's problems with weight too.
Wow! And I thought I was the only one with this problem. I am constantly dieting, and self-conscious of my weight...5'4 and 115 lbs. I spent about a year not eating and it felt so good to be skinny. I, too, have a supposedly "pancreatic insufficient" genotype, but I am not. (The more I learn the less "weight" I give to genotype and its phenotypicall expression. Cf is atypical any way you slice it.- any thoughts on this?)Mare
Wow! And I thought I was the only one with this problem. I am constantly dieting, and self-conscious of my weight...5'4 and 115 lbs. I spent about a year not eating and it felt so good to be skinny. I, too, have a supposedly "pancreatic insufficient" genotype, but I am not. (The more I learn the less "weight" I give to genotype and its phenotypicall expression. Cf is atypical any way you slice it.- any thoughts on this?)Mare
Well I am gonna give my 2 cents about it from a guys point of view.For the guys it is totally diff.We are constantly trying to gain weight.Choking down can after can of ensure {or what have you}Adding anything and everything like butter;peanut butter;chocolate syrup;cans of tuna;1/2 lb. meat at a time. Whatever we could to gain weight.At 5'4" and 130 lbs. w/ess than 10% bodyfat {atleast I had abs} I felt small compared too my peers.I remember gorging sometimes 5000 cals.And it wasn't just weight I was trying to put on but muscular weight.After I would eventually gain weight I would eventually fall sick and loose all the hard earned muscle.The calories needed just for breathing would burn up everything I had.While every one else shot up I stayed the same.It was dissapointing.Most C.F. have an ectomorph body which means we stay skinny no matter what.Now I am 151lbs. and happy w/ my weight.So far any guys reading this;don't worry it can be done.Just eat right and train w. heavy weight and you will gain.O.K. well thats my 2 cents.Byron
Well I am gonna give my 2 cents about it from a guys point of view.For the guys it is totally diff.We are constantly trying to gain weight.Choking down can after can of ensure {or what have you}Adding anything and everything like butter;peanut butter;chocolate syrup;cans of tuna;1/2 lb. meat at a time. Whatever we could to gain weight.At 5'4" and 130 lbs. w/ess than 10% bodyfat {atleast I had abs} I felt small compared too my peers.I remember gorging sometimes 5000 cals.And it wasn't just weight I was trying to put on but muscular weight.After I would eventually gain weight I would eventually fall sick and loose all the hard earned muscle.The calories needed just for breathing would burn up everything I had.While every one else shot up I stayed the same.It was dissapointing.Most C.F. have an ectomorph body which means we stay skinny no matter what.Now I am 151lbs. and happy w/ my weight.So far any guys reading this;don't worry it can be done.Just eat right and train w. heavy weight and you will gain.O.K. well thats my 2 cents.Byron
I think that eating disorders come easy in our culture, cf or no cf. It's unfortunate in light of the fact that more often than not, more body weight can mean healthier lives for most cf'ers. To the woman in her thirties:It sounds like you want to blame your enzymes for your weight gain, which is probably part of it. As we age, our metabolisms slow down- that's how we're 'engineered'. I'm discouraged by your tone regarding the skinnyness of 'other girls with cf'. Most cf'ers I know would like nothing more than to put on some weight, add some muscle tone, grow boobs etc etc. I'm also discouraged that you take issue with all of the weight gaining advise you find... "...it makes me sick to see all of the high calorie diets..." I hope you understand that because this advice isn't necessarily for you, that you know it's going to benefit somebody who has a hard time putiing on weight.How is your health overall? Good luck and take care...
I think that eating disorders come easy in our culture, cf or no cf. It's unfortunate in light of the fact that more often than not, more body weight can mean healthier lives for most cf'ers. To the woman in her thirties:It sounds like you want to blame your enzymes for your weight gain, which is probably part of it. As we age, our metabolisms slow down- that's how we're 'engineered'. I'm discouraged by your tone regarding the skinnyness of 'other girls with cf'. Most cf'ers I know would like nothing more than to put on some weight, add some muscle tone, grow boobs etc etc. I'm also discouraged that you take issue with all of the weight gaining advise you find... "...it makes me sick to see all of the high calorie diets..." I hope you understand that because this advice isn't necessarily for you, that you know it's going to benefit somebody who has a hard time putiing on weight.How is your health overall? Good luck and take care...