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09-17-2014, 05:11 AM   #31
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Why do they play with my emotions like this?

I am going home today (assuming they can get the nurse arranged for tonight, otherwise tomorrow morning).

The surgical doctors wanted me home, the gastro I saw yesterday wanted me home. The gastro today, doesn't want me to. But she doesn't have the power to stop me, or overrule the other doctors. Her reason is that they still don't know why I have to eat such a massive number of calories to gain weight. But the reason I was admitted was nothing to do with my weight; I was admitted because my bowel became blocked and perforated. If I thought me staying here would mean they would actually find the reason, it would be a different matter, but I was here five weeks through July and August, and they tested and tested me, and found nothing. I had some inflammation, but not enough to justify the weight loss, and it was treated with prednisolone. What really upset me was that she said if I don't gain weight, they'd need to monitor me again to make sure I'm not failing to gain weight deliberately, i.e. that I don't have an eating disorder. The five weeks I was here last time, they had someone watch me twenty-four hours a day, and were all agreed (including this doctor) that I wasn't doing anything deliberately, that's why they did so many tests.

So basically I need a huge number of calories, but they can't find a reason why. This actually doesn't surprise me, as I've had all sorts of medical conditions that defy all the available knowledge, that's how I ended up having to go to a world specialist in London to have another illness that I have diagnosed. But because I surpass their knowledge, some doctors assume I must be faking illness. And all the trust I earned just a couple of months ago, after allowing, with no objections, have people watch me, even in the toilet and shower, that meant the doctors accepted I was not making myself sick, or hiding food, or secretly exercising, or whatever, is now apparently invalid, because once again they view my food record and think I should have gained a lot of weight.

From last week to this one, my weight was exactly the same. Before that, I had lost a couple of kilos, but I was nil by mouth and taking in no calories for a few days while they were debating whether or not to operate, then after the surgery I was on complete bowel rest, then small amounts of liquid and soft foods for several days, whilst getting only 1200 calories a day from TPN. How could I not have lost weight? It wasn't my fault my bowel perforated; I didn't do anything wrong. I was actually really pleased that without the TPN I managed to hold my weight stable that week - I'm still just a couple of weeks past major emergency surgery on my digestive system, how can they not realise how hard it is to eat? All the other doctors were so impressed with my food record, that's why the others were happy for me to go home; they see I'm eating and drinking way more than they'd expect from a post-surgical patient, but they don't realise how many calories I need.

I know my weight's dangerous, but I just don't see how more time in hospital is going to help. I've still got more tests scheduled to have as an out-patient. So I'm going home, being weighed every week by my GP, so I know if I don't gain they'll want me back here again. I don't want more tests and surgeries and hospital stays. I just want to go home.
09-17-2014, 05:43 AM   #32
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Sorry, I just have to rant a bit more. This doctor who didn't want me going home is the same one that the surgeon got angry with for keeping me on TPN when the line was infected. She has started doing something that other doctors have done in the past which really pisses me off - trying to scare or tempt me into gaining weight my telling me medical problems are caused by being underweight. She told me the paralysis was caused by me being underweight. No one has a clue what caused the paralysis! - other than that it was a result of the infection that her TPN line caused. I hate it when doctors say things like this. I have been a healthy weight in the past and I was still very, very sick. How is it helpful to tell me this or that symptom will go when I gain weight, when I'll get to a healthy weight only to find they were completely wrong? Don't they realise how horrible it was to gain weight, making my digestive symptoms worse all the time, only to have hopes of improved health shattered?

Then she came out with the worst thing - that maybe the reason my symptoms get worse when I'm eating more is because eating stresses me, and the symptoms are caused by stress. The surgeon, the one who actually found and fixed the problem, told me the blockage was caused by my eating so much over recent months (which this doctor who's pissed me off was overseeing). But this doctor doesn't mention that, even though it's in my file. Maybe she thinks my bowel perforated because I was stressed.
09-17-2014, 09:30 AM   #33
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Sorted. District nurse can't do the IV, so I have to go to another hospital (much less specialised than this one, but much closer to my house) tomorrow and Friday to get the antifungals there - the IV takes about an hour and a half to go through. Then doctor rings on Friday, and if my last test results from the blood taken for cultures the other day are good, I switch to oral antifungals on Saturday. So complicated!
09-17-2014, 01:08 PM   #34
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Waiting for today's meds so that I can leave...
09-17-2014, 03:36 PM   #35
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Ugh, that last wait for meds is a killer isn't it? I would consider lodging a complaint about that Gastro, UnXmas. She doesn't sound very professional and sounds like she has a poor bedside manner. Hope that you're at least back home now so that you can continue to make your recovery at home. It sounds to me like you're doing great for all that you've been through!
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Mid-Sept 2014 Another blockage
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09-18-2014, 04:36 AM   #36
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Home!
09-18-2014, 04:40 AM   #37
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Ugh, that last wait for meds is a killer isn't it? I would consider lodging a complaint about that Gastro, UnXmas. She doesn't sound very professional and sounds like she has a poor bedside manner. Hope that you're at least back home now so that you can continue to make your recovery at home. It sounds to me like you're doing great for all that you've been through!
I didn't get home until about 10 at night - my meds came about 6pm, but then I had to have the IV for that day before I could leave, which takes an hour and a half.

I've made complaints about doctors before - I can't face doing that again. For the most part, they deny everything, do everything they can, including flat-out lying, to shut you up. It's exhausting and makes me so angry, when I know I'm right and telling the truth, but they "win" because I can't prove it.
09-18-2014, 05:20 AM   #38
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I'm happy you are home now! Hospitals are no place to heal.
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09-20-2014, 03:57 AM   #39
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Went to the hospital for my last IV antifungal yesterday. Now I'm on oral medication for it so no more hospitals!

So long as my weight doesn't go down anyway; that doctor is still after me, thinks I should be hospitalised until I've gained more. My GP is to weigh me every week, and will send me straight back if I lose. I hate it that they seem to think I have control of my weight, that I could gain if I wanted to, if I tried. Even though on my last admission for weight gain, they had someone watch me twenty-four hours a day, even in the bathroom, to ensure I was not making myself sick or hiding food or engaging in other eating disorder behaviours to deliberately prevent weight gain. I complied with no complaints - I wanted to prove to them I had nothing to hide. And they were forced to admit that when I was eating what should have been more than enough to gain, I didn't. So why are they still treating me like I'm choosing this?

I'm also a little worried about this because the oral antifungal medication which I started this morning can cause severe diarrhoea. I've got to take it for two weeks, and hope that if I do get this side effect, it won't make me lose a lot of weight.

But one really good thing I'm glad about: one of the surgeons rang yesterday to say that the last blood tests they did showed no sign of infection! It's gone! I still have to take the medication, because otherwise you can develop resistance (or the fungus develops resistance? not sure exactly), like with ordinary antibiotics where you have to finish the course. I thought the infection was probably gone, as I've had no more fevers, but the thought was there at the back of my mind that they might tell me I had to go back in because the infection was still there. So glad it's gone!

Last edited by UnXmas; 09-20-2014 at 04:20 AM.
09-20-2014, 05:10 AM   #40
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This might sound like a bit of a way out idea but I was wondering whether you do any form of relaxation exercises - meditation or yoga, perhaps.

My husband was very skinny. He wasn't sick and didn't have diarrhoea but the food just didn't seem to "stick" and, however much he ate, he didn't put on weight. On the advice of a friend who was a yoga instructor, he began practicing relaxation before meals and, after some time, gradually started putting on weight. He never got plump, but he stopped looking as though I was starving him!

The principle seems to be that, through yoga relaxation or meditation, you can slow down your metabolism and give your body more of a chance to use the food that you put into it.

Just an idea...
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09-21-2014, 05:00 AM   #41
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Interesting idea! I have to say, yoga and meditation are not really my thing - but perhaps they should be!

I'd be very interested to know how fast my metabolism actually is. Recent tests showed that I do not absorb everything I eat, but not to the extent that accounts for how many calories I had to consume to gain. So where else can the energy be going? I suppose I must have a fast metabolism.

Was it just before meals your husband did relaxation exercises, or after as well? I usually read while I eat, unless it's a family meal; I think I'm as calm as I can be, but trying to relax more can't hurt!
09-21-2014, 05:31 AM   #42
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Not to sound too obvious,but do you chew your food well? Digestion begins in the mouth with saliva.

Glad the infection is gone!!!
09-21-2014, 10:14 AM   #43
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Not to sound too obvious,but do you chew your food well? Digestion begins in the mouth with saliva.

Glad the infection is gone!!!
I chew well. I'm a very slow eater - small mouthfuls, lots of chewing.
09-22-2014, 06:07 AM   #44
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I'm also a little worried about this because the oral antifungal medication which I started this morning can cause severe diarrhoea. I've got to take it for two weeks, and hope that if I do get this side effect, it won't make me lose a lot of weight.
No diarrhoea, but it's making me nauseous. The only anti-nausea meds I have to hand are a type of anti-histamine and a migraine medication. Does anyone know if there are others I can just buy over-the-counter without having to wait to get a prescription from a doctor?

Edit: actually, the anti-histamine seems to be working well.

Last edited by UnXmas; 09-22-2014 at 08:02 AM.
09-22-2014, 03:32 PM   #45
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I'm very upset. Through quick googling about removing central lines, I found what I'm 100% sure is what happened to me: air embolism. It fits exactly all my symptoms - chest pain, shortness of breath, paralysis, weakness, and ties it all in to the removal of the line.

Why did the doctors and nurses not tell me this? It could have killed me. They didn't give me any diagnosis; they just told me vague things, like you've had a reaction, your body was stressed, etc. Surely they must have known?
09-28-2014, 05:19 AM   #46
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My right hand is getting close to being functional again! It shakes a lot, so typing, writing, etc. are still tricky, but I can almost get the last three fingers to straighten out now. My leg seems to move as much as it's supposed to, but I keep losing my balance, so I think it must be very weak still.
09-28-2014, 05:29 AM   #47
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Moving in the right direction! Slow and steady improvement is a good thing.Takes time to build back strength.I'm happy for you!
09-28-2014, 01:02 PM   #48
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Thanks. I'm feeling a bit rubbish now, because eating had been so much easier since the surgery. I had thought that with the blockage and bad bit of intestine removed, I'd carry on feeling much more comfortable. But the last couple of days I've been back to feeling so so full all the time. It seems unlikely that I have another blockage building again, but I can't think why I would have surgery and go a few weeks without this horrible fullness, only to have it come back again. I've not eaten differently, same medications, and my stoma is functioning the same as it was when I was feeling better. But there must be a reason.
09-28-2014, 05:53 PM   #49
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Definitely hope it is not another blockage so soon.Do you think you need to re-evaluate your present diet? Just an idea...I know CD is indiscriminate and doesn't care about giving us a break,but,man, you deserve a nice uneventful stretch for a change.

I wish I had the answers,you are in my thoughts and prayers.

Dave
09-29-2014, 05:25 AM   #50
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Thank you so much for carrying on reading my endless posts.

The fullness did diminish quite a bit yesterday evening, so perhaps, even if I still experience it sometimes, I'll at least have some good days without so much discomfort.

I did have about double the normal stoma output I'd usually have overnight, so having all that building up could well have been the cause of the fullness (feeling full due to contents of intestine as oppose to contents of stomach). I began to feel more comfortable prior to all that coming out though - perhaps the fullness went away as it moved further down my digestive tract?

My diet at the moment is low-fibre, avoiding things that could block my stoma, which I'm sticking to quite strictly so soon after surgery. The surgeon and stoma nurses have told me that the type of stoma I have now shouldn't block as easily as my previous two, but I'm not ready to test it out yet. I did, however, have a pear yesterday, ripe, with all the skin removed. It was great to eat fresh fruit again! Tinned pears just aren't quite the same. I'm also trying to get in enough calories to gain weight - I seem to need more calories than most people - so I eat even when my stomach isn't feeling good. I have been wondering whether, if I could tolerate more fibre without blockages, it would help move things through, and reduce the discomfort from being so full. Maybe after another couple of weeks I'll try and introduce some foods with a bit more fibre in them.
09-29-2014, 08:24 AM   #51
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I'm happy I found your thread to read!

Maybe it will just take a bit of time to adjust to your latest 'new normal'. Your guts have to get use to the latest they have been through.Not exactly in medical terms. The trauma your body has been through recently,etc..

Perhaps stewed dried fruits would be o.k. for you when you feel you can move on to more fibre.A definite step above fruit in tins.I enjoy apricots and prunes lately.I use them in recipes,yogurt or by them selves.

I eat a lot of baked veg.I bake it so it is soft enough to not bother me,but not cook the nutrition out of it.Various veg and spice combos.I make soups out of baked veg leftovers sometimes.

I wouldn't think the stewed dried fruits would bother your stoma.They get quite soft from the stewing.You get the calories and the nutritional benefit.I stew some several times a week.

Hopefully the style stoma you have now works out and you can be a bit more adventurous with food.Cautiously and reasonably adventurous,of course.

Dave
10-03-2014, 10:23 AM   #52
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I was weighed by the nurse this morning - I've gained 0.1 of a kilo since last week. I'm pleased because I feel I have to do this slowly; the more I eat, the harder it is on my digestive system. I'm not sure whether the doctors will be satisfied.

Eating is still definitely easier than before the surgery, but some days I still feel very full - sometimes I get up in the morning feeling full, before I've eaten anything. I think that in addition to stomach fullness, I get bowel fullness too. I didn't think constipation could be an issue with an ileostomy, but my output is and always has been of a very low volume. Sometimes it's very watery though, which doesn't seem like something that would indicate constipation. But when my stoma eventually does empty, it tends to do so quite quickly, so I might go all day feeling full, with no output, then in the evening it will fill up half a bag very quickly, and the fullness will be relieved. I'm considering asking my doctor about laxatives, as I feel if I could move things along more quickly, the fullness could be relieved much earlier. I would try eating more fibre, but I'm worried about blockages. Still, at least eating is easier - despite feeling full, I am recognising nice tastes, and the comfort of eating, which I couldn't do when the blockage was building.

I have one other problem: the improvements in my right hand seem to have stopped - the movement isn't coming back. I've been referred to a physiotherapist, but I've not got a good feeling about this, I feel I might not regain all the movement.
10-03-2014, 08:43 PM   #53
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Tell them some weight is better than none,your not losing.

Maybe when you can better move around it may help with digestive issues.I'm sure the physio is strenuous enough for you at the moment. Did you try any stewed fruit? Good and good for you,as Mom would say to Dad as she fed him stewed prunes for constipation.Yup,the good old days.

Hopefully the hand will come back better than you expect with the aid of the physio.
10-03-2014, 09:42 PM   #54
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Before you go down the laxative route, I would suggest that you try finely grated apple or stewed and pureed apple. It is very gentle but could help you become more regular. It is also excellent for people with diarrhoea.

It probably isn't stone fruit time in your neck of woods, but I find that stewed plums - pureed to break down the skins - are good, too
10-04-2014, 12:14 AM   #55
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I'm just curious, how many kcal do you eat on average? It's not necessarily as uncommon as one might think to need 5-6000 kcal to gain weight.

Another idea...
Although I would be shocked if they didn't do a thyroid test, I have to ask - did they do one?

Have you had your adrenal function tested?

Do you feel quite warm or comfortable even when underweight? Or are you usually cold?

Just trying to help with your weight predicament
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10-04-2014, 04:58 AM   #56
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I have been eating stewed fruit - apple mainly, also rhubarb.

happyballerina:

I don't know how many calories I'm eating. When I was hospitalised for weight gain at the start of the summer, I didn't start gaining weight until, on top of three meals and three snacks a day, they'd upped my supplements to 1500 calories worth a day. Why would you need 5 - 6 thousand?!

My thyroid is normal. I don't know for certain that my adrenal glands have been tested, but I'm pretty sure that with the thousands of tests they've done, they most likely covered it. Is it a blood test?

And I'm always hot. The nurses keep telling me skinny people should be cold, but I get so hot!
10-04-2014, 07:02 AM   #57
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According to the book 'The Raw Juice Therapy' rhubarb is used for constipation.It does say it should only be used occasionally because its high oxalic acid content offsets the little vitamins and minerals it has.(pp94-95)

"oxalic acid combines with calcium to form crystals of insoluble calcium oxalate rendering it unusable by the body"

Food for thought,so to speak.
10-04-2014, 02:01 PM   #58
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I had the same pattern today: felt so full, really didn't want to eat at all, then my stoma bag filled up - literally in the space of about a minute it went from empty to completely full, quite watery this time, and after that, I was comfortable enough to easily eat a meal.
10-05-2014, 09:35 AM   #59
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UnXmas,

Sometimes people just need huge amounts of calories, especially when there is a lot of damage in the body to build back up and heal - for example, damage from disease, from major surgery, or from being very underweight, all three of which you're experiencing right now if I understood correctly. It takes a lot of energy to build up large amounts of new tissue and repair any damage. I don't know what medications you were and are taking, but it's worth mentioning that being on corticosteroids for a long time is another possible factor.

There are several papers describing a hypermetabolic state with various etiologies, including the ones I mentioned above, in patients. I have personally most often seen articles that discuss hypermetabolism in anorexia recovery; I know you are not anorexic, but the bottom line is the connection between weight recovery and sudden very much increased caloric needs.

You can read some of these articles:
http://archinte.jamanetwork.com/arti...ticleid=554680
http://www.scienceofeds.org/2014/05/...rexia-nervosa/

I even found one about Crohn's Disease, which explains the hypermetabolic state from malnutrition to be the result of changes in substrate metabolism (I only skimmed it quickly, but it seems they are referring to changes at the cellular level - perhaps somewhere in the ETC or oxidative phosphorylation); although, in this study, it was determined that enteral nutrition was an effective therapy. I will say that I wonder whether there are any implications about TPN in this setting; I have read before, offhand, that while EEN is quite effective at bringing a Crohn's flare into remission, for some reason it seems that TPN is not as effective; if that is the case, it wouldn't be a stretch to think that EEN may be more effective than TPN in the case of weight restoration and combating a hypermetabolic state. Anyway, you can read that article here:
http://www.ncbi.nlm.nih.gov/pubmed/10203559

This is actually a topic that interests me very much - energy expenditure, especially as it relates to mitochondrial uncoupling. I will try to provide a simplified explanation. Oxidative phosphorylation is a metabolic process in the mitochondria that regenerates ATP, which is the energy currency used by your body; ox phos relies on another process called the electron transport chain to do its job correctly - the ETC creates a proton gradient, the potential energy of which is used to "power" ox phos and ATP regeneration. Thus, the ETC and ox phos are "coupled" reactions. In mitochondrial uncoupling, an agent (usually a protein) interferes with the proton gradient created by the ETC and "depletes" it before ox phos can use it to make ATP. Instead of making ATP, energy is released as heat. It is interesting, then, that you mention being hot all the time.

But I digress - I'm sure no one came here hoping for a biology lesson

These are just the thoughts that come to my mind when I read about your situation.

Oh, one more thing. You say you only started gaining weight when you took in 1500 kcal in supplements on top of three meals and three snacks. I have no idea what those meals and snacks consisted of, so it's difficult to predict how many calories those were providing you with; but it generally takes some effort to reach above 2500 kcal with three meals and three snacks. What I mean is that usually, when people aim to take in 2500-3000 kcal in food, they have to actually work at it by adding extra fats, using full-fat products, increasing portion sizes, and/or making sure that all food is calorie-dense. You wouldn't think it would take extra effort to get more calories in, but when you're aiming for several thousand, it certainly can be (unless you're eating McD's for every meal)! Hospital food is not the greatest and it's quite possible that the three meals and three snacks they were feeding you were not providing more than 2000-2500 kcal in all. So, even if you weren't/aren't in such a hypermetabolic state to require upwards of 5000 kcal per day to gain weight, it is very possible that the 1500 kcal in supplements were needed for you to gain weight just by bringing you up to 3500-4000 kcal. It's hard to say without knowing, though.

Sorry for the long and winding post. Hopefully it answered some of your questions, though. As for what you can do to keep gaining weight, certainly keep making that effort to get in calorie dense foods. Most people find that eating small portions of calorie-dense food frequently throughout the day makes reaching a high calorie goal much easier and more realistic.

Can you see a dietitian?

Also, there are a lot of online resources. I am personally not one to recommend counting calories, but maybe you are different from me and would benefit from it. I know there is quite an active community of weight-gainers on the Calorie Count website, maybe MyFitnessPall, too. At the very least, you could browse the threads to get some ideas.

I don't know what you're eating now, but here are a few ideas for simple ways to really get that calorie intake up there:
This is a website for kids that has high-calorie recipes for cystic fibrosis, but it's as relevant to you and, IMO, is absolutely excellent.
Some ideas from Joy Bauer, RD to increase calories for Crohn's Disease patients.
Scroll down for recipes for not-junky shakes that have between 900-1500 kcal each.
One of the many forum posts from the Weight Gain forum on CC that is absolutely full of good ideas and recipes.

I hope you will find some of those helpful!!
10-06-2014, 05:00 AM   #60
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Thank you so much, happyballerina! Including thanks for the biology lesson - I love learning the science behind things; understanding possible reasons why I may not be gaining is extremely useful.

I've had two dieticians recently: one each hospital admission this summer. The second just basically oversaw the TPN after my surgery. The first was involved during my weight gain admission, but she was hopeless. She'd tell me how well I was eating - but then my weight would go down, so she obviously had no clue about how much I needed to eat. She also had no clue about how I needed to eat with an ileostomy, and didn't understand that some foods can cause blockages!

Going to read those articles now - maybe I should send them to the dietician! Thanks again.
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