What You Eat in Private, You Wear in Public

Posted by frances007 @frances007, Mar 8 10:16am

Hello, I have an obscure disease that has resulted in having zero appetite, which has resulted in a 40 percent loss of my body weight, which has obviously been very revealing to my community. I may have mentioned that many in my community began shunning and shaming me once I began losing weight, actually being told that I look like a Holocaust victim and should wear make up so I look less gaunt. For what it is worth, the person who said that was once someone I thought was a friend, but is no longer. I have finally been able to deflect this behavior, because I have gotten used to being "thin." I never struggled with a weight problem, my usual weight being around 125 lbs, and now it is hovering around 95 lbs at best.
I literally have to remind myself to eat, and then when I do eat, I have to be careful because I have ulcerative colitis. I am now making a list of those foods which create problems in this regard. I have seen a nutritionist who has given me some very good ideas, but I did have to admit to her that I did not see myself eating the requisite 2000 calories per day. I have tried eating small meals throughout the day, but often "forget" to eat, and then when I do remember it is difficult to do so. I do not have celiac disease. While I have gotten used to this androgynous body, I am still uncomfortable about my appearance, just as I always have been. I have overcome the insensitivity of those I run into during my walks, but there have been times when a person comments, "Why are you so thin," or "You look better wearing make up, keep it up." I hold my tongue when I want to fire back and say, "Why are you obese?"
Does anyone have any ideas about how I can increase my calorie intake without trying to eat a lot at once. I eat a lot of those Perfect Bar protein bars, thinking that the 20 calories they provide are at least enough for one day, but I am getting worried about further weight loss, just as one might get concerned about weight gain. My brain does not tell me to eat unless I force it to. Does anyone have any suggestions in terms of protein bars and things of that nature that I can make myself, as the Perfect Bars are quite expensive. I am getting to the point where I feel, "well, maybe I should just give up eating all together," and this is a scary thought. I am starting to tell myself that no one will ever want me for the sake of my weight. Not that I am looking for a "mate" but it would be nice to hear a compliment once in a while. I wear nice clothes, always look "put together" and things of that nature, but now that I am beginning to lose more weight, I am getting a bit concerned.
Thank you.

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@twinkie23

Thank you for taking the time to reply. Do you use the calendar app for this? Yes, I have an iPhone.

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No go into alarms. I don’t use calender app not loud enough, the alarm will annoy you till you get it done

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@pb50

I can relate. I was diagnosed with microscopic colitis after seven months of House arrest due to everything sliding right through me. There’s a colon-specific steroid that after about a four month course, I was all good.

It can only be diagnosed from random biopsies in the. Colon - so during a colonoscopy is perfect. You might ask if they intend to test for that.

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@pb50 Yes, you do understand, sorry. Do you remember the name of the steroid? I think I need a new gastroenterologist. The one I go to doesn’t seem to know what to try with me. He’s prescribed several different meds but none have worked consistently. I will ask them to test next colonoscopy. Thank you. I hope your day is filled with smiles!

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@laurie6

I forgot to mention the obvious (to me), being that I also have no appetite due to mental and physical medical issues.

I wasn’t dismissing the lack of appetite as being easy to overcome!

Not at all.

I’m still not a fan of meals and comments about how much of what I consume.

I’m just saying that nobody can turn it around but ourselves and it can be fatal in a short while.

Hence my having to decide if I really wanna live a little longer..

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we are having a very hard time with MIL, getting her to eat. Not interested really. Nor drinking. She is very fragile.

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@twinkie23

@busyyaya You sound very organized. I understand the need to be as I also have colitis. Right now I just eat what I feel like but also very often end up in the bathroom or worse. 🥴 I would really like to be able to identify the foods that cause this but so far there doesn’t seem to be a rhyme or reason. Would you be so kind as to explain your system of alarms? I am very interested.

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I'm in a FB group for people with LARS. Several members there have recommended the use of an app called mySymptoms (for Android phones, it has a different name for iPhones). You record your meals with precision (all ingredients), your meds, your sleep, your exercise, your mood, and your bowel movements and the app aims at drawing correlations (not causes) between food and BMs, for example.

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@twinkie23

@pb50 Yes, you do understand, sorry. Do you remember the name of the steroid? I think I need a new gastroenterologist. The one I go to doesn’t seem to know what to try with me. He’s prescribed several different meds but none have worked consistently. I will ask them to test next colonoscopy. Thank you. I hope your day is filled with smiles!

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Budesonide. The course starts with 9mg in the morning for a few weeks, then 6, then 3. 3-4 mos in all

Its expensive. But good RX will show you a better price and it varies by pharmacy. Best price I got was in gorcery store pharmacy I didn’t ordinarily use.

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I have many gastric diseases. I got to where I just didn't get hungry and when I did eat anything I got really nauseated or immediately got the runs. I am 5'5 and I got down to 92 pounds. They immediately put me on a feeding tube and pump fed into my small intestine. I ended up gaining weight back and they took it out. I still struggled with nausea if I ate and for a year just did protein shakes and milkshakes. Then on my next check-up they ran more tests and found that I was not absorbing my nutrients and put me back on the feeding tube and pump fed into my intestines. It has been 10 years and I will never get off of it. I am only weighing 104 and sometimes lower. I totally understand the hateful people. I have been accused of having a eating disorder or vomiting on purpose. First off I hate vomiting and can't even tolerate my chronic nausea. I live on Zofran. I have to be fed 18hrs a day and stay elevated in bed the entire time or I will vomit. Have you been to a gastroenterologist? If not go immediately. I am malnourished and now am having severe intestinal problems and they say I have air fluid and stool all through my intestines and colon. But no answers. CT scan, now he wants a bowel study done and I asked him to just do a colonoscomy but he says that the prep will be to hard on me. I definitely feel your pain. I wish you all the best. If you get it figured out let me know. Hugs Love and prayers ❤️ 🙏❤️🙏❤️🙏

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