UnXmas, first of all I would say, exercise isn't necessarily the enemy. I exercise a lot, and yes my weight has dropped a little bit in this current flare I find myself in, but weight-bearing exercise in particular has helped me gain a lot of healthy muscle mass. I haven't lost weight from exercise itself, only as a result of this mild flare I'm in. So don't write off exercise completely - I can't say enough good things about weight-lifting, it's done so much good for me.
Secondly, what diets have you tried? Have you done anything like SCD? What about EN? Perhaps those could get you healed up better so that you could absorb more calories & nutrients and gain some weight. I haven't tried SCD nor EN myself so I'm just throwing the idea out there. I know there are a lot of diets to try. And I remember reading at least one person say their child ate a regular diet during the day but also did EN through an NG tube at night - maybe you could consider something along those lines.
Thirdly, I concur with the others - I want to know what your doctors say about you being only 66 lbs? I know you were mistakenly treated for eating disorders in the past so you may be reluctant to discuss this current weight issue with your doctors, but my goodness, 66 lbs is next to nothing and it sounds like perhaps more serious help is needed than just "drink an Ensure" or whatever. It's worrying and I hope you're okay, and that you can find a way to gain some healthy weight back.
Hi Cat,
I just had ileostomy surgery and post-surgical ileus, so I can't exercise at all right now. I was extremely sick. With ileus, you can't eat at all, so I was on TPN but it still really took it's toll on me. At the moment my muscles are so weak, if I walk upstairs it feels like climbing a mountain; getting dressed wears me out because my arms can't lift heavy clothes. I am making sure I walk up the stairs and round the garden each day - they always advise you to move when recovering from surgery, but that's what counts as my "exercise" at the moment. As I recover, I will build up to taking half-hour slow walks with my dog, which was what I was doing before surgery. I know that gentle exercise doesn't actually burn that many calories - I've read that many people trying to lose weight mistakenly believe that a bit of exercise will burn a lot of calories, and then wonder why they're not losing. It's not so much the worry that I'll use up calories as the muscle weakness that's stopping me exercising now, and I can't bend or lift anything while I'm healing from the abdominal surgery.
Diets - I exhausted experimenting with diet many years ago. I haven't tried the SCD, but I tried enough supposedly healing diets (eat only organic, no sugar, no dairy, no gluten, food intolerance testing, working with nutritionists, no processed food at all, etc.). Every single thing I tried made me more sick, and they made me lose weight too. I felt so betrayed by all the nutritionists and others - also tried various alternative therapies - who would tell me they could make me better, and then when I got worse, they didn't want to know. I know that fibre makes me worse, so I don't eat much of it, at the moment I'm on a post-ileostomy diet which excludes anything that could cause a blockage, and will be until the stoma swelling goes down in 6- 8 weeks. I eat little and often, and I eat calorie-dense foods. I have had such bad experiences with trying to improve my health through diet, that I won't try another. From what I've read, SCD, paleo, etc. do not have much more evidence or evidence of a higher quality than any of the other diets I tried which failed. There will always be another diet to try, there'll be someone telling you this food is bad, that food is bad. You could experiment with diet indefinitely. So I have had to draw a line and say that I'm not trying another, as I don't want to waste any more time and energy on a diet that leads to disappointment. My diet will only change when there is a lot of evidence of a high standard that it will benefit me - such as giving up the foods known to potentially cause blockages after having my ileostomy.
I don't think I'd want an NG tube, as a big part of my problem is feeling so painfully horribly full - anything going into my stomach is going to contribute to that, whether it comes by tube or whether I eat it the regular way. I had TPN while in hospital because I couldn't eat, and I would be willing to do that at home, if it's possible. I've been referred to a specialist in this area, and will ask about it then, though when I was in hospital they wanted me off the TPN as soon as possible as they said it carries its own risks.
The odd thing is none of my doctors care much about my weight. When I was misdiagnosed with anorexia, the psychiatrists and eating disorder specialists always made it sound that being a few kilos underweight meant you were on the brink of death, and that missing a snack could kill you (and I'm not exaggerating much here!). But doctors I've seen in every other fields - including the dietician who organised my TPN - don't seem to see it as a big problem. But then all my signs - heartbeat, blood pressure, levels of vitamins, minerals, etc. - are always good, and I've wondered if I may be safer than the average patient with anorexia, as I eat a balanced diet, eat consistently, don't get dehydrated, don't over-exercise or take diet pills or laxatives, so my illness lacks some of the more dangerous attributes that eating disorders often have.
I don't know why they treat as no big deal, but I've spent a lot of my life underweight (not to the extent I am now, but often quite significantly underweight), and it's done me no harm so far. I know that in no way guarantees it won't cause me big problems later, but trying to gain weight has led to lasting damage to my digestive system. The more I eat, the faster my digestive system symptoms deteriorate, and the deterioration is usually permanent. So, ironically, the more I eat now, the harder it will be for me to eat in the future.
