1. < Digestive Health

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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

laurie6 | @laurie6 | Mar 10 12:56pm
In reply to @pb50 "It’s a bit pricey. About $3 a bottle But like I said if you add ice..." + (show)
@pb50

It’s a bit pricey. About $3 a bottle
But like I said if you add ice or add milk and pour over ice, you get two tall glasses and they are really filling - so I use it for breakfast and lunch. I get it 12 bottles At a time on Amazon but you can buy it individually at some grocery stores in supplements section.
Good luck!

Jump to this post

I have similar issues. I use Quest protein shakes (premixed in bottle, not powder) they have 30g protein but only 160 calories. I also grab higher calorie protein shakes (none have as much protein as Quest) and the vanilla is what I use in my coffee as creamer. I carry them in my car, so I’m never without.

I had to consciously decide to “get busy living or get busy dying” as the famous Shawshank quote goes…

My appetite got better with the help of a little bit of weed and a desire / decision to live.

I sympathize as we all have our rough roads to travel.

I hope you are able to find your appetite 🤗 for the sake of those who love you.

Not blaming you or criticizing!

Just sharing some tools I’m finding helpful.

I had to decide to try and live another few years or not, even though I have no choice (not suicidal at all). I’ll at least try. And participate in my own life.

I’m trying to stop dying and it’s working. I’m increasing the amount of food I eat when I can possibly stand toand trying to graze as well. I started eating buttery croissants that used to make my boobs bigger after one meal! They are still impossible to resist, and they add fat to my face. Find something you can’t resist?! Anything?

A few days of effort can turn things around! For me..hopefully for you.

REPLY
laurie6 | @laurie6 | Mar 10 3:10pm

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..

REPLY
1 reply
frances007 | @frances007 | Mar 11 12:50am
In reply to @aah "Hi there, have you had testing for other abdominal issue besides UC? It might be a..." + (show)
@aah

Hi there, have you had testing for other abdominal issue besides UC? It might be a good idea to check with your gastro Dr - request some further testing.
Fairlife protein. Shakes, Ensure & boost have been recommended to me by several drs. You can make them into your own homemade smoothies by adding Greek yogurt, fruits, peanut butter ect..... a yummy way to increase calorie intake & necessary vitamins. Best wishes

Jump to this post

in reply to @aah Thank you. My gastro doctor at Sutter removed me from his service because I filed a grievance against him 2 years ago after he threw me out of his exam room while I was in mid sentence, asking him questions he was either unable to answer or would not answer. I have now been referred to UC Davis for further care in this regard. It will take months to get an appointment for the procedures that have been recommended in an effort to find out what is "really" going on: Colonoscopy, endoscopy and ECRP with biopsies. I am not looking forward to any of this at all, but understand I have to keep up with my appointments or no one will "treat" me. Having said this, I also know that UC Davis does not "play well with Sutter" in that they do not communicate well with other hospitals in the community. My former rheumatologist has suggested that I go to Stanford, and I am exploring that with my insurance carrier. She does not believe I am getting the appropriate "attention" or care at Sutter, and I believe her. Believe me, I eat all kinds of Greek yogurt, fruit, eggs, chicken, almond butter etc. However, sometimes I just give up and don't eat at all because everything goes right through me. I try.

REPLY
jenatsky | @jenatsky | Mar 11 7:47am

Frances I am sorry for your plight. As many have suggested eat high protein foods like bone broth (many varieties and flavors available) as a substitute in cooking for added benefits. Are you seeing a mental health professional as this must be a harrowing experience?

REPLY
busyyaya | @busyyaya | Mar 11 9:22am

Your ability to hold your tongue with such rude people is beyond my capabilities. I set an alarm on my phone to eat, labeling the alarms, on the diet I lay out on Sundays. You can even label the day it’s taking effect. People laugh at me when they see all the alarms I have set but I don’t care, I’m keeping my head up and do what I do. I have UC/PSC and I’m praying I can keep my colon, they want to do total colectomy, not ready to be a bag lady yet. So I get the struggle on what to eat, the planning with alarms are helping to lower my anxiety about it a bit. Gotta keep our nerves in check with UC to stay out of bathroom haha

REPLY
1 reply
terriann | @twinkie23 | Mar 11 5:04pm
In reply to @busyyaya "Your ability to hold your tongue with such rude people is beyond my capabilities. I set..." + (show)
@busyyaya

Your ability to hold your tongue with such rude people is beyond my capabilities. I set an alarm on my phone to eat, labeling the alarms, on the diet I lay out on Sundays. You can even label the day it’s taking effect. People laugh at me when they see all the alarms I have set but I don’t care, I’m keeping my head up and do what I do. I have UC/PSC and I’m praying I can keep my colon, they want to do total colectomy, not ready to be a bag lady yet. So I get the struggle on what to eat, the planning with alarms are helping to lower my anxiety about it a bit. Gotta keep our nerves in check with UC to stay out of bathroom haha

Jump to this post

@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.

REPLY
3 replies
pb50 | @pb50 | Mar 11 7:29pm
In reply to @twinkie23 "@busyyaya You sound very organized. I understand the need to be as I also have colitis...." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
Nemo1 | @nemo1 | Mar 12 3:09am

Oikos yogurt. You can add this to shakes. They come in containing 15g, 20g of protein I’ve added to my diet. I add 4 oz fruit to a 3/4 cup. I get them in the large containers.

Clear Ensure and Juven clear Protein Drinks. My mil likes the clear Ensure fruit punch diluted in water. We are trying to get protein into her.

REPLY
busyyaya | @busyyaya | Mar 12 6:26am
In reply to @twinkie23 "@busyyaya You sound very organized. I understand the need to be as I also have colitis...." + (show)
@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.

Jump to this post

Not sure what type of phone you have I use iPhone, I attached picture. Basically I hit the plus button top right and the screen in picture shows what I get. You can type in text for food and medication reminders. It’s helped me remember food and meds at specific times. You can specify the added days to be reminded at that time you chose.

REPLY
1 reply
terriann | @twinkie23 | Mar 12 8:21am
In reply to @busyyaya "Not sure what type of phone you have I use iPhone, I attached picture. Basically I..." + (show)
@busyyaya

Not sure what type of phone you have I use iPhone, I attached picture. Basically I hit the plus button top right and the screen in picture shows what I get. You can type in text for food and medication reminders. It’s helped me remember food and meds at specific times. You can specify the added days to be reminded at that time you chose.

Jump to this post

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.