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Appetite problems

Hi All,

Just wondering if anyone else out there has ongoing problems with their appetite?

A very quick background on my goings on! I was diagnosed with severe Crohn's colitis last June, had been pretty sick since last January....initially had a 4 month course of prednisone when diagnosed, tried and failed azathioprine and was started on Humira. I felt quite good on the humira for maybe 4 months, had good energy and a good appetite, even put on a little of the weight I'd lost. The humira stopped working around December last year and I became very sick again, back on prednisone in January this year and was given the option of doing a clinical trial for stem cell therapy which I took....I've had some improvement with the stem cells, have managed to come off the steroids in July which has been great but it hasn't quite got me into remission so will probably be starting inflixamab in the near future.

So my problem at the moment is low appetite and weight loss, I've lost 25 kg this year, about 33kg in total since January last year, much of this time I've been on steroids.
I just have little to no appetite, eating is such a chore....have ensure supplements but I really struggle with them, really dont like them. I try to make the most of what I do eat and make it as calorific as I can....but if there's one thing I've learnt thru all of this it's that it's very hard to make yourself eat when you just dont feel like it. I dont necessarily want to put on weight, I'm actually at a good weight for my height now (I was a chubster!) but I do want to stop losing it, it's quite scarey when it's so uncontrollable.
My doc has booked me for a gastroscopy in a couple of weeks to make sure there's no Crohn's or ulcers in my stomach, I'm going to see a dietician to get help with my diet....just dont know how she will help with the appetite issue though.

Anyone out there have any words of wisdom?
 
subconsciously, you do NOT want to gain weight (which is good for your health long term). However, understand it is WHAT you eat that will be most important for your nutrition. Things you may be eating may also be making you feel "icky" and thus promoting the lack of desire to eat. Maintain your weight, if it is a good weight for your size an then keep ideas of foods that work that add calories to you and you can tolerate, for when you begni losing weight. Hopefully new tests may shed some light on what is happening; if something more. Remember, even months off meds there may be a residual effect (i.e., no desire to eat...particularly after steroids...antibiotics, etc). I would highly recommend some good probiotics, which will help get your stomach back in balance with good bacteria and may help solve the problem of appetite. May need to stay on them..take them appro. 1/2 hour prior to meals. Good luck!
 
I have wondered about a subconcious element but I have had steroids in the past for asthma and experienced that overwhelming need to eat everything in sight!
Been very different with the Crohn's, I'm just not interested in food at all which is so out of the ordinary for me...I hate it it's really not a nice feeling at all :(
 
I have this problem - and on steroids too. I'm underweight not because I don't digest nutrients/calories, but because I just feel so stuffed and bloated after I eat anything. I've forgotten what hungry feels like. It makes it near impossible to eat enough. I have delayed gastric emptying. The gastroscopy sounds like a good idea because you may find a specific cause (besides IBD) of your appetite loss. Do you feel nauseous or just full?

There are some meds that can help with nausea. Domperidone makes your stomach empty a bit quicker too, but it stopped working for me.

I just try and eat little and often (don't stuff yourself in one go, it's usually worse than grazing on snacks). I have just got some liquid supplements too. These are good because they provide vitamins so I don't have to fill up on lots of fruit and veg, which are low calorie. Foods high in calories which take up less volume in your stomach are best - as long as they're easy to digest. I find sugary foods and carbs less filling than fatty, stodgy food. And I don't exercise much, just walking and non-strenuous stuff to avoid burning off too many calories. I'm doing all this but still struggling to gain. I've had no appetite for years.
 
I am so glad to read this. I have no appetite and eat enough to survive. I get really hungry and try to eat and then it is like it makes me nauseated. I know it is in my head so I try to eat as often as I can. It has gotten to where I am only eating really bland food. I have told this to my doctor and he just looks at me like I'm crazy. I am so glad I found this site.
 
Try some medicinal marijuana doesn't make you stoned but my appetite is crazy atm all i wanna do is eat and eat like a pig i did I'm surprised how well it works
 
Location
Glasgow
I have the opposite problem. I cant stop eating. i feel like im always hungry. I have IBD and its never made me loose my appetite. Im not fat but im not thin either. I would love to drop a jean size. So if anyone has any tips.. im all ears? lol :)
 
hey

i have no appetite but force myself to eat. If i dont i will have even less energy. You are not alone.

As most of you i found on steriods i would eat everything in sight and put on a lot of weight.

hope u feel better soon xXx
 
@ Unxmas, yes little and often is the way to go for sure, I'm definitly a grazer. I dont feel full or nauseated when I eat I just cant seem to eat very much my body just physically doesnt want it....No appetite for years? Do you still lose weight or have you plateaued? I thought I wuld eventually plateau but almost a year in and still losing on average 500gms a week

@hthopmson631- My doc hasnt paid much attention to my weight loss either until now, I guess weight loss is a normal oart of Crohn's but it's just been going on too long now, he's finally sitting up and taking notice!

@Ozboz- does the marijuana help any other symptoms? I smoke the real deal on occaision but it doesn't really help my appetite....it used to when I was healthy though!

@StaceyQ- I also force myself to eat, no fun huh? Who knew eating could be such a chore, used to be one of my favourite pastimes!
 

CrohnsChicago

Super Moderator
I just have little to no appetite, eating is such a chore....have ensure supplements but I really struggle with them, really dont like them. I try to make the most of what I do eat and make it as calorific as I can....but if there's one thing I've learnt thru all of this it's that it's very hard to make yourself eat when you just dont feel like it. I dont necessarily want to put on weight, I'm actually at a good weight for my height now (I was a chubster!) but I do want to stop losing it, it's quite scarey when it's so uncontrollable.
My doc has booked me for a gastroscopy in a couple of weeks to make sure there's no Crohn's or ulcers in my stomach, I'm going to see a dietician to get help with my diet....just dont know how she will help with the appetite issue though.

Anyone out there have any words of wisdom?
I agree, eating does seem to be a chore these days. And I have come to equate food with pain so often I am scared to eat, especially in public. I try to get my nutrients other ways with ensure/boost, juicing veggies mostly. Sometimes I have an urge to just eat and eat and eat because I have come to naturally forget to eat most of the day. (as it is this thread made me realize all I had to eat today was a cup of applesauce in the morning). I want to get healthy and start working out again but I need to get my diet right first so I don't harm myself physically. I would definitely consider juicing. BRAT diet is nice as well if you are finding your gut to be irritated. I find soft foods are easier to prepare and nicer to your gut (oatmeal, cream of wheat, mashed potatoes, baked sweet potatoes, guacamole...YUM! lol).

Just try out a few things and maybe set a reminder on your watch/phone to eat if you are a forgetful person like I have become.

Best of luck to you!
 
@ Unxmas, yes little and often is the way to go for sure, I'm definitly a grazer. I dont feel full or nauseated when I eat I just cant seem to eat very much my body just physically doesnt want it....No appetite for years? Do you still lose weight or have you plateaued? I thought I wuld eventually plateau but almost a year in and still losing on average 500gms a week

My weight fluctuates depending on my symptoms and how much effort I'm putting in to eating. Sometimes my weight gets so low so I put a load of effort into eating and gain some, then I get fed up of feeling stuffed and lose it again. Or I have surgery or a period where I'm more ill in some way and lose. Then I may get an incentive to gain (like in preparation for sugery) and put up with feeling stuffed again. I end up fluctuating between normal and very underweight. I'm like a yo-yo dieter in reverse. I can eat enough to gain, I just can't seem to keep enduring that amount of discomfort long term. :frown:

Since I'm sick even at a "healthy" weight, it's not like I have good health as a motivation either.

I've been told you should get used to eating larger quantities, but I've never found that to be true for me - even after months of gradually increasing the amounts of food I eat, I still feel just as stuffed! I think this will be something I just always have to work at. Maintaining seems as difficult as gaining - it's not like I reach a normal weight and then it gets easy, I find it's too difficult to keep it on.

Perhaps there's some medication out there that would make it easier. I've read there are surgeries they can do to help your stomach empty quicker. If I knew which doctor to talk to about something like that, I think I'd seriously consider it. I've also thought about tube feeding or IV feeding. A doctor suggeste tube feeding once but I didn't go through with it. I guess those would be options if it ever got to a point where I couldn't regain on my own.
 
@Ozboz- does the marijuana help any other symptoms? I smoke the real deal on occaision but it doesn't really help my appetite....it used to when I was healthy though!
You need a strain high in CBD (canabinoids) and not THC the stuff thhat makes you high as cbd gives you a body high and meant to help with inflamation and cuts down bm's MMJ is meant to be one of the best things for IBD I haven't got the right strain at the moment so I'm only smokind a small amount to help me eat and sleep here is a great site on CBD'S

http://cbdcrew.org/
 
I don't know your routine so sorry if none of this applies :)

Have you looked at how you approach food, as in do you dread when a mealtime approaches? Perhaps another way may be to ditch conventional eating so you are a bit more relaxed about it. Maybe one day you just have little snacks, another one meal and a snack, etc,take each day as it comes so you don't feel any extra pressure.

Try not to compare how much you are eating with what is "normal" but be pleased with yourself when you do manage to eat.

I know how poor appetite makes you feel lousy in more ways than one, it's just not right is it, not wanting to eat? And when you stop (or can't) you realise just how interesting and fulfilling food makes a day- and how it is everywhere you look on tv, the street, a magazine!

:voodoo:
 
yer it is horrible, if i wasnt fo rmy kids i dont think i would eat. To much of a chore and hate how i feel after.
x
 
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