Just feeling down again.

[emmaaaargh]

I just felt the need to vent again. Which is weird, because usually I am really happy, and I only get sad for short periods. Usually at night. But that's not really relevant right now. :thumright:

So after I started taking Aza in July, I had a few ups and downs and in October (I think) my dosage was upped to 75mg. Apparently, the 35mg was to 'get me used to taking it'. Okay, never heard of that one before, but whatever. Had a rough patch late October/early November with lots of D and no appetite with no apparent cause. Mid-November onwards... wow, it all went uphill! Appetite came back (and with a VENGEANCE - not quite pred-type, but a huge improvement) and solid stools again. I'm still puzzled what caused it because I was only eating my safe, bland stuff and nobody I knew had any kind of bug at all. Whatever.

But my weight is still terrible. I am dropping like a lead balloon and I am TERRIFIED. The thing is I just physically can't bring myself to drink any of the EN! It sounds terrible since I still get to eat normally or whatever but I just start shaking and I will do whatever I can to get out of it. I don't know if this is some sort of psychological issue from the last time I was on EN? I had no idea it would happen beforehand and it was so badly co-ordinated that I was allowed to eat for a day before being put on it at first - so it was having my first lovely meal post-surgery, only to have it all yanked out from underneath me.

I don't know if it's just me being super picky (because I've always been that way) but all of the formulas are vile! E028 I won't touch because it's the formula I had after my surgery, so I thought ok, try Fortisip then! After some haggling between my dietician and my GI he eventually granted his 'permission' (I'm sorry. I really do hate him. ):< ) and we got a bunch of flavours. Well, the most palatable ones, according to my dietician.

Banana is not too bad, but it leaves a filmy texture on my tongue. I am a texture kid! I do not do milkshakes or anything remotely thick. Seriously. So now I want to ask for Fortijuice but my parents are getting so, so tired, and I just think if I do they'll start getting angry again but I'm now 5 stone 4 and my BMI is 15 something and I really don't know what to do.

The sick thing is that I feel great. Physically, better than most of the year. Appetite, stools... and no pain. So why am I still dropping?! I know that if I have a doctor's appointment anytime soon they will NOT look at what I say is IMPROVING because that's just how they work. They will just look at my weight and tut at me and I will leave in tears feeling ashamed and like a failure, because that's how a good portion of my appointments with my GI go.

I don't know. I just... really don't know. I'm so stressed and unhappy, even though I try to eat continually throughout the day. And I don't even like cheese or peanut butter. All the foods that are great for putting on weight are ones I don't like. Go me. :/

 

[Johnnysmom]

:hug(((Hugs))))))

My son has food issues too. He can't explain it but there are some things he just can't eat. He is also losing weight. Have you tried carnation instant breakfast mixed with whole milk? It has about as many calories as the EN formulas. He has it with a hard boiled egg in the morning. We also have mash potatoes with lots of cream cheese and butter. Just try to add calories where you can.

If you are really tired you might want to try some vitamins if you aren't on any. A gell cap vitamin is good because they aren't hard on your stomach. Vitamin D3 helps as well. Your Dr. might want you to take Iron too, have you had your iron checked lately? I know my son gets very tired if he doesn't take his vitamins.

Let us know how you are feeling.

 

[Beatit]

Most times the weight will drop because the fat is being used to become more muscle or to be used as healing intestines as in crohns.

 

[emmaaaargh]

Thank you both for replying - and so fast, too!

Johnnysmom, I don't think we get Carnation Instant Breakfast over here but I did try something similar (can't remember its name right now - shows how bad my memory is!). I guess I will just have to cry cramming calories in - but it's so hard. My mum's trying to LOSE lots of weight right now, so if she has 1% fat milk and I need whole and my dad stays with semi-skimmed... well, sometimes I run out of whole and nobody remembers to buy any more.

I do take a chewy vitamin every so often and find that I feel better when I do. I WAS on iron, but I stopped it because I'd wake up sweating in severe pain in the night. The pain wouldn't go away until I'd pooped... which is VERY inconvenient when the iron has, in turn, constipated you. I think next time I'll ask for a liquid formulation myself, since my GI just said 'well, take a laxative' when I last expressed my discomfort with iron pills. My haemoglobin is quite low (in July it was 7), but then I've always been borderline anaemic anyway so nobody seems to fuss too much.

Feeling a bit more optimistic now. I've started to really get into cooking my own stuff now, which works out perfectly for everyone else in the house since Mum cooks her own seperate low-fat stuff and Dad no longer has to pester me to get me to choose what to eat! And we all eat at different times so the kitchen is free when we need it.

Just a shame I probably won't be able to keep it up when I go back to school. I never was one for sandwiches, and our school dinners aren't great either.

 

[Johnnysmom]

You are absolutely an amazing girl!!! I can't believe how mature and well spoken you are. Next time you are at your G.I. appointment make sure you discuss your symptoms and feelings to your Dr. There are some simple things that I think could make your life easier that they could suggest. My son is on a laxative and it is very easy to take. Just mix in water and no taste at all. He especially needed it while on the iron. It is a lot of work to get all those snacks in. I talked to the school nurse about my son getting an extra snack at school. Peanut butter and crackers are great, and ask them about whole milk too. Make sure you mention to your parents your anxiety about your health and weight loss. I am sure it is hard for your mum when she is trying to lose weight but it is so important to your health to get those extra calories.

Take care hun, and let us know how you are feeling. You are doing awesome!

 

[Danico85]

hi emma
just a wee message to say i hope your feeling better soon. and when i was at my worst i lost over 3 stones.
because i can eat what i want with my IBD (apart from apple skins and a few other things) the doctor told me the best way to put weight on is... wait for the obvious answers..... eat loads of takeaway food, bread and sugar... oh.. and cut down my excersise.. i thought he was kidding me on and was waiting for him to laugh or something, but he was deadly serious. So i followed his advice and within about 6 months i had put the 3 stones back on and im now back to 14.5 stones (im 6ft 2) so thats a pretty decent weight for my size. Infact im down as "overweight" on the scales lol
so i sugest (if you can) just eat lots of curries, nan bread, mcdonalds, burger king... you name it!

Nicky

 

[David]

Nicky, I don't think your doctor understands the difference between healthy weight gain with nutrient dense foods to ensure someone with a disease characterized by malabsorption and malnutrition is getting the nutrients they need and eating a ton of nutrient deficient food high in bad fats and huge calories to pack on the weight.

Any doctor that suggests Burger King and McDonald's and no exercise is a quack.

 

[Danico85]

Hi David

On a personal note, he sounded like a quack, infact he looks like a quack.

He couldnt have been more right!

My iron levels were as low as they could go, i had lost all my nutrients, zink, potassium... you name it i had lost it, i was walking about like a ghostly skeleton.

I did what he said, i ate lots of rubbish. I put on 3 stones in 6 months and all my nutreint levels couldnt have been higher.

So this quack was right.... for me ofcoarse.

I dont want to promote fatty foods, but emma wants to put on some weight and it worked for me so may work for her.

Nicky

 

[Price]

One thing you can do to get some extra calories is blend stuff. I've blended so many strange things (some I wouldn't advise, like oats and cashew nuts) but some things turn out really well. For example if you blend a banana in a pint of milk that's about 450 calories, and I don't know how much you actually need but having that as a.. snack I guess is a good start!

Other tips would be to watch for high fibre foods. The higher fibre the more full you'll feel. So if you eat something like a leek (if I remember right) you could feel full off something like 30 calories, it's crazy!

It's completely up to you, but if you want to make sure you put on weight you can use a site like myfitnesspal.com to calorie count. Just plan out say, a week of food. Weigh yourself at the start and at the end. If you didn't gain weight find an extra 100-200 calories. It's a lot of effort though and boring so

Good luck with gaining some weight and feeling better over all. Eggs, milk, nuts, pasta, all good choices.

 

[UnXmas]

I have a similar problem, and have done for years. I think in my case it's feeling too full to eat enough rather than malabsorption.

I guess I kind of agree with the doctor who says to eat junk/not exercise. When your weight is a really serious issue it can become the biggest imediate threat to your health, in which case if you find junk food easier to eat because if something tastes good it may go down easier, and is more likely to be calorie-dense, it may be a good idea to eat some unhealthy foods. And if you're seriously underweight like emma (and I currently am too - and it is terrifying when you simply can't stop losing), exercising is not a good idea. Well, some movement is good, but if you're desperately underweight you do not want to give your heart a workout!

When my illness was misdiagnosed as anorexia and I was consequently treated for anorexia, the treatment for anorexic girls (almost always it's females) included major restrictions on exercise - sometimes bedrest - and a balanced diet but one that included high calorie sugary and fatty foods, as well as healthy foods and supplements. The sort of body mass index this thread's starter is talking about really is different from just being a little underweight or temporarily losing weight during a flare when you know you can put it back on again soon.

Sometimes you just can't gain on healthy foods, which tend to have fewer calories for the same volume of food and may not be so easy to digest as refined foods, for example. If you need to gain weight and you can do it with all natural, healthy fats, then it makes sense to eat that way. But if trying to do that means you end up not being able to gain because the diet you're attempting isn't appetising enough to you, or it's too filling, or is harder to digest then you have to put the immediate need to gain weight ahead of the longer term benefits of sticking to healthy foods.

 

[craiglaurasam]

I'm sorry for what you are going through. I've been there myself. Have you thought of pouring the Ensure or whatever else in a glass and flavoring it with things you like and can tolerate like perhaps vanilla extract or sugar until it tastes good? I agree with Johnnysmom that Carnation Instant Breakfast is really good maybe you can find it online if they don't have some near you.

 

[hannah-rose]

Would a compromise be nutricious foods like vegetables and meat but in high calorie sauces, like cream sauces? Chicken tikka masala (oh so delicious) is really high in calories but if it's got chicken and vegetables in then at least you're getting the nutrients too. Same as lots of cheese which is high fat but has calcium and protein.

I'm sure you could find a balance between food that is nutritious and also high in calories/fat so will help you gain weight.

I hope you feel better soon, and on a side note if you're not happy with your doctor/nurse I would recommend switching, I did and it's much better now and I'm a lot happier.

 

[xSophiexx]

Hi Emma youve got lots of advice above about the weight so im going to say something about your GI .. seeing as you hate him so much and hes clearly making you come out of appts miserable can you not be referred elsewhere?!! also i see you live in Kent .. me too! well on the border of Kent and SE London .. where about are you?? hope u start to feel better x

 

[Danico85]

UnXmas - You are spot on. People were quick to jump down my throat when i said to emma that the best thing you should do is dont excersise and eat junk food.. and lots of it! There are no "nutricious" ways to put on weight quickly. I tried and failed and i know others who failed aswell.

I put on 3 stones in 6 months by eating junk food and not exercising. I dont promote this if your of a healthy weight, but to pile pounds its the quickest way!

Nicky

 

[David]

Nicky, I wasn't jumping down your throat, I was jumping down your doctor's I know you're just trying to help and that's really cool of you.

I have no doubt that eating burger king, McDonald's, breads, sugar, and other junk food while not exercising will pack on the pounds. But that doesn't mean you're no longer experiencing malabsorption and malnutrition and subsequently not getting the essential vitamins, minerals, and other nutrients that people with Crohn's disease are so often deficient in. It's another band-aid on an arterial wound. Instead of working to find the inflammation or other issue that is leading to the malabsorption/weight loss and properly managing it and working with a great nutritionist to ensure a healthy diet that can lead to weight gain, the easy way out is taken. It's like taking tons of pain killers if you have a lot of inflammation that is causing pain. Sure, you might feel better, but the underlying issue isn't being managed and you're going to experience a host of additional detrimental side effects over the short, medium, and long term because of that treatment.

 

[Danico85]

Hi David
I know all of which your saying is right, i just seen that emma is now going through what i did a few years ago and i was genuinly worried that i was going to just keep loosing weight and becoming a bag of bones.
When my doc told me to do what he did, i genuinly thought he was joking, but he wasnt. and i had nothing to loose (literally), so i gave it a bash. i ate probably 2 takeaways a day. stopped going to the gym. still ate fruit and veg and still took multivitamins. and i seen the weight pile back on and i couldnt have been happier. at the same time i was going through a steady spell with my bowels so that obviousley helped.

As soon as i reached my 15 stone "usual weight" i started eating normally again and ive not had any weight issues since. If anything im probably a couple of pounds over weight.

It wouldnt hurt emma to give it a bash. It worked for me

Nicky