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10-25-2014, 05:48 AM   #91
DustyKat
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How tall are you UnXmas and what do you weigh? Sorry if I have missed this.

When you lose weight do you keep losing or eventually plateau out?

Dsuty. xxx
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10-25-2014, 06:07 AM   #92
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I'm seriously considering water-loading (or more likely Coke-loading) when I'm weighed. Which is horrible because the doctors who don't trust me will now be right in that. But I'm desperate. Please tell me: is this a terrible, terrible idea?
10-25-2014, 06:09 AM   #93
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How tall are you UnXmas and what do you weigh? Sorry if I have missed this.

When you lose weight do you keep losing or eventually plateau out?

Dsuty. xxx
I'm 165cm and at the start of the Summer I was 29kg. Now I'm 32kg. (That's 5'5" and 63lbs at my lowest, 70lbs now). My BMI is around 10 or 11 I think.

I was a little underweight as a child, but only a little. I've been moderately underweight on and off since I started getting ill in my early teens, but was usually around 40 - 50kg. I did maintain a healthy adult weight a few years ago; for a couple of years I was over 50kg. Then I started losing slowly, then I started drastic weight loss over the last year or so: I had surgery and major complications afterwards, two further surgeries, and a stomach virus which ended me up where I am now (plus the emergency surgery a few weeks ago), and I've not been able to gain it back.

Last edited by UnXmas; 10-25-2014 at 09:20 AM.
10-25-2014, 06:12 AM   #94
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I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.

How much do you weigh?
10-25-2014, 06:13 AM   #95
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I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.

How much do you weigh?
Sorry - I think we cross-posted. The details of my weight are above.
10-25-2014, 06:27 AM   #96
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Whoa.

Again, I am sorry if i have you repeating informationÖ

Have you done a gastrostomy tube so you can be slowly tube feed? I only say gastrostomy as I donít think an NG tube would be suitable in your situation. I can well imagine that being the weight you are consuming the calories required will be exceptionally difficult.

How much are they acknowledging that malabsorption would be impacting on this?

Whilst I understand the concern of the health professionals I fear this constant emphasis and focus on your weight will cause long term damage to your relationship with food. If you canít achieve what is expected then stress and feelings of failure must surely rise to the surface. Lord knows many of those with IBD have a tenuous relationship with food as it is and understandably so.

Dusty. xxx
10-25-2014, 09:36 AM   #97
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They tried an NG when I was in hospital, but my stomach wouldn't tolerate it, I had terrible diarrhoea with it. Plus they gave it to me when I was admitted, because they assumed, given my low weight, that I hadn't eaten anything solid for some time - but this was completely wrong, I was probably eating around 1500 calories a day before that admission. Once they realised my system coped fine with solid food, they got me just on that (plus supplements - lots of supplements!).

There had been talk about a feeding tube directly into my small intestine. The gastroenterologist - the one who now thinks I have an eating disorder - said I couldn't have it until I'd gained a lot of weight, as I wouldn't be able to cope with the surgery at the weight I am now. This turned out to probably not be true, since then I had to undergo an even more major emergency surgery, and I recovered far quicker than they expected, but I think they're right to not try elective surgeries at this point still. I had quite liked the idea of a tube, but then when in hospital there was another patient who had a tube, and the tube had rubbed against an ulcer, and I'd never seen anyone vomit so much blood day after day, I hated having to hear how much pain she was in while all of us other patients on the ward were having to carry on as if everything was fine. I didn't like the idea of a tube after that, and I do feel totally worn out of surgeries and hospitalisations at this point. And I had TPN and that was a complete disaster, it nearly killed me when I got an infection from it, caused my blood sugar to drop dangerously when they stopped it, and caused temporary paralysis and loss of speech due to an air embolism when they took out the central line. After my last experiences, I never want TPN again, and would really rather have no type of tube at all. They just all seem so inclined to go wrong and cause more complications than they fix.

I think my relationship with food got screwed up along time ago. Not just being forced into treatment for my "eating disorder" (I was treated in-patient and out-patient for it), but also by all the nutritionists who told me I had food allergies and mustn't eat sugar or processed food, and that food was evil and making me ill, etc. But mostly it's screwed up by the fact that eating really does make me ill, and a period spent gaining weight will always cause a rapid and permanent deterioration in my symptoms, which doctors refuse to acknowledge, and still insist on telling me various symptoms will get better when I eat more and gain weight, and they never do. The blockage came as a surprise even to me though. I knew eating more results in a poorer quality of life for me, but I never thought it could kill me. At least the wonderful surgeon told me that and didn't try to keep it quiet because it inconveniently contradicts the "more food is good" ideal like some doctors would.

The gastroenterologist who I'm hoping to see again, the one who prescribed prednisolone, did consider malabsorbtion, but she didn't have a clear answer on it. She didn't think there was enough inflammation to justify the difficulty I have putting on weight. My stoma output is usually of normal weight and consistency (they weighed it every day during both the weight-gain and the surgical admissions), and I've not had any nutrient deficiencies other than vitamin D at one point a while ago, though that has resolved. So it doesn't look like malabsorbtion. The only time there was clear malabsorbtion was when I had the NG tube. The only condition I could think of that would mean I need more calories is a thyroid problem, but I'm sure they must have tested me for that - that's a pretty routine blood test isn't it?
10-25-2014, 10:04 AM   #98
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I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.
Yes I know. The one thing I can say is that I have been honest with them. And I also know that if I artificially increased my weight next week somehow, the next week I'd just have to increase it even more. At the moment all I can think of is making it next week, and not think about the week after that and the week after that.

And it's so awful that my digestive system has chosen today to be even worse than normal. It feels like my bowel could burst, I am so uncomfortable and don't feel like eating. I hoped the feeling would pass, and maybe my stoma would work a bit and things would move through. I'm paranoid about getting another blockage - when the surgeon told me the blockage had been building up over the weeks I was eating so much, I knew that the terrible terrible fullness I'd had over that time was from the blockage, and after the surgery it was so much better. But today it feels bad again. But my stoma is working. I'm still tempted to try taking laxatives when my intestine feels full, and see if I can move things through to get rid of the discomfort earlier. But I don't want to try laxatives now in case they cause weight loss. I'd ask my doctors, but I know the standard advice is never ever to take laxatives or even stool softeners with an ileostomy.
10-25-2014, 10:28 AM   #99
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One things about asking your docs about laxatives is that it might feed into their beliefs about eating disorders. Laxative abuse is a known compensatory measure used by some folks with bulemia.
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10-25-2014, 10:32 AM   #100
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One things about asking your docs about laxatives is that it might feed into their beliefs about eating disorders. Laxative abuse is a known compensatory measure used by some folks with bulemia.
Good point.

I know my weight is dangerous, too. It's just that I would go in-patient again if I thought they could actually help me - do tests or start treatments that could prove a long-term solution. But I spent so long there and they could do nothing. All they did was bring on the blockage and perforation and all that came with it. If I'm going to be living with such a dangerous health problem, I'd rather accept that and live with it - not live in hospital.
10-26-2014, 04:37 AM   #101
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I think I've decided: I won't try water-loading, but I will wear heavy clothes.
10-26-2014, 05:34 AM   #102
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Just don't put to many rocks in one pocket,you may lean to one side,even them out.
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10-26-2014, 06:36 AM   #103
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Tomorrow I have a gastric emptying study, and I'm now worrying that, if the results come back normal, they're going to see my complaints of feeling full as eating-disorder fueled lies.
10-26-2014, 06:45 AM   #104
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Try not to worry about results before you even have the test.Easier said than done,I know.You are not telling them a lie,try not to let them stress you out.
10-26-2014, 06:50 AM   #105
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Good luck
My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
So maybe something to ask for
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10-26-2014, 07:04 AM   #106
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What would be lovely, would be for you to go away somewhere on holiday, so that you could just forget about what you should be eating and how much weight you should be putting on. I am sure that the stress of the expectations - yours and all the medical experts - is part of the problem. If you could just be able to eat what you feel like eating and enjoy eating you might start to put on weight.
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10-26-2014, 11:16 AM   #107
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I thought I may have found why my stomach has been particularly bad the last couple of days - I thought it was a side effect from a new med, which I didn't take today and today had been better, but now my stomach's getting worse again so I don't know what's wrong with it.


Good luck
My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
So maybe something to ask for
I'm having the four hour one. And I get to eat eggs on toast for it, so at least it's not a test that involves fasting or prepping!

What would be lovely, would be for you to go away somewhere on holiday, so that you could just forget about what you should be eating and how much weight you should be putting on. I am sure that the stress of the expectations - yours and all the medical experts - is part of the problem. If you could just be able to eat what you feel like eating and enjoy eating you might start to put on weight.
I think that too. I feel much better about eating when I eat balanced meals, with vegetables and other low-calorie things too, than when I resort to tablespoons of butter and peanut butter (which I've done in the past and am doing now), and can't risk filling up on anything low-calorie. I wish I didn't have this pressure, I wish I could just try and gain weight slowly, and maybe drop backwards a bit when I have a particularly bad day with my digestive system. I think this backfires anyway, because when I've stuffed myself with food I don't want, it just puts me off eating more. But I don't know what's best at the moment, how to convince them I don't need this pressure.

Their approach seems messed up. And by "they" I mean the team of gastroenterologists and dieticians who specialise in nutrition. They deal with malnutrition in patients with physical illness, including IBD, but they also specialise in treating people with the most severe types of eating disorder - in the physical aspects of eating disorders and refeeding. But they're so neurotic, it's like they have obsessive eating disorders themselves. For example, a rule they give to all eating disorder patients (and me and some points during my admission) was that you had to use a wheelchair to go from the bed to the bathroom, because it saved burning calories. They set one patient with anorexia a specified time she was allowed to spend time brushing her teeth, because it burned calories. They wouldn't let her chew gum, because, chewing burns calories. Luckily many of the nurses who actually looked after us realised rules of this kind were ridiculous, and didn't make us follow them. But the consultants and dieticians always told us to, and it was all printed in our files.

I feel so much better and healthier when I take gentle walks with my dog every day, who cares about a few calories?

And the ironic thing - after my surgery I was on the surgery ward, being looked after by the surgeons (obviously!) as well as the nutrition gastroenterologists, and the surgeons kept telling me to get up and get moving - get walking, it is good for your recover from surgery! And the physiotherapist saw me and set me exercises to do, and told me to do them as often as I felt able. Though when I was really sick, right after the surgery, I used a wheelchair the first times I got out of bed to go to the bathroom instead of using the catheter - and I would have asked for a wheelchair if I hadn't been told to use one! I know what I can and can't manage.

So normality, and a release from the pressure of weight targets, would be very much appreciated!
10-26-2014, 11:19 AM   #108
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Good luck
My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
So maybe something to ask for
I looked erythromycin up and it seems it's an antibiotic. Does that help with weight gain?
10-26-2014, 05:09 PM   #109
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It's taken in low doses about 30 minutes prior to eating
Three times a day.
My kiddo before would only eat a few bites and be extremely nauseous full feeling etc...
The abx cause the stomach and small bowel to contract to move the food through effectively. Sometimes the stomach muscles don't contract the way they should so things don't move like they should.

Since it moves the stomach it helps grind up food more and increases appetite.
In the beginning stomach cramping is painfully but after a few days to a week it wasn't an issue any more .

My kid now eats normally plus has two or more snacks before bed -
None of which would have happened before
This is my non Ibd kiddo
Docs were going to look at gallbladder next if this didn't help
10-27-2014, 06:54 AM   #110
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Tomorrow I have a gastric emptying study, and I'm now worrying that, if the results come back normal, they're going to see my complaints of feeling full as eating-disorder fueled lies.
Thinking of you! Hope it went well.
10-27-2014, 10:48 AM   #111
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It went fine. I don't know the results yet. It didn't make me feel full though. The meal was pretty small - an egg on a slice of toast and a glass of water. The technicians seemed surprised that I ate it easily. They started telling me to eat the egg first, because that was the more important part in terms of the test, and then if I was struggling with the toast... and then they realised I'd cleared my plate! If I only had to eat meals that size, fullness wouldn't normally be a problem! I'd had to fast from midnight last night, so when the test started late morning, I'd not eaten for some time. If I'd been at home, I'd have had breakfast, a snack and an Ensure by that point, plus drinks: then I'd be feeling full! I think they must be used to patients with much more severe gastric emptying problems.
10-30-2014, 07:18 AM   #112
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The weigh-in today went fine. I didn't need to water-load. I did wear a heavy sweatshirt, and I'd had my usual breakfast plus one glass of orange juice and one glass of Coke. This week I was weighed in the morning, previously I was weighed in the afternoon, when I'd presumably have had more food and drink in me. My stoma bag was also completely empty when I was weighed this morning. So I think it will all even out. I gained 1kg since last week.

My GP was not happy at all about my refusing to see the gastroenterologist, but eventually agreed to send my to either the other nutrition gastroenterologist, who is also very keen about having me admitted in-patient, which I don't like, but who at least recognises and tries to treat the physical things wrong with my digestive system; or another gastroenterologist, who I saw briefly when I was in-patient gaining weight. He was the one who saw no point in me taking up a hospital bed when the only "treatment" I was getting was food, and discharged me and another patient with anorexia, when the first gastroenterologist's back was turned. (And she was not happy about it!) So you can see why I asked to see him instead.

My GP gave me a lecture about how I see one doctor, get mad at them, then switch to another. Which is a bit unfair, since I didn't ask to switch, I'd have been ok without seeing anyone at all. I also said I'd see any of the surgeons instead, whether they were the ones who looked after me during my emergency admission, or the surgeon who I've been seeing since 2007. You see, I do have some long-term relationships with doctors - I've been seeing the same urologist for almost as long, and this GP even longer (though we have our differences ). But apparently I need a medical/nutrition/gastro consultant, not a surgeon.

But the doctor I don't want to see tells me that food doesn't make me ill, and still doesn't believe I can eat as much as I do and be so thin, and since these are the two cruxes of my weight problem, I don't see how she can help as long as she thinks like this. I spent all those weeks in-patient, having one-to-one supervision, twenty-four hours a day, to prove how much I eat and how it affects my weight, and the surgeon has told her that eating so much led to my blockage, so there is nothing more I can do to help her recognise what is wrong with me.

I know how it looks to keep changing doctors, but I can't see any other way. My GP came out again with stuff about sectioning me if I refuse to see anyone, pointed out she's responsible if anything happens to me due to my being underweight, but found it hard to answer when I asked her if she was responsible for arranging the admission which led to my blockage and perforation (she referred me to the nutrition gastroenterologist and had threatened me with sectioning back then so pretty much forced me to go). I hate how this makes me look and behave, that I'm saying stuff to hurt her, but it's the truth, and I'd rather do that than let the gastro. be involved with my care again.

So we compromised - I keep gaining, I see one of the other consultants, and she is aware of the risks of another blockage, though it's beyond her expertise to know what to do about it, and she feels it's safer for me to keep gaining weight and increase the risk of a blockage than the other way round, and I think that's fair enough.

Why are relationships with doctors so complicated?! Do other people have this trouble? Maybe I should start a thread on that.

We worked out I'm having about 2500 calories a day at present. I do a slow walk with my dog each day, from ten minutes some days, to maybe 40 minutes other days. The rest of the time I'm pretty sedentary. So gaining 0.1kg a week is less than it should be for someone of my weight eating that much isn't it? That's what I have been doing. 1kg this week, but part of that was a heavy jumper.

Last edited by UnXmas; 10-30-2014 at 11:49 AM.
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