Gaining Weight, But Getting Thinner?

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supercellbaebe

supercellbaebe

Joined
Jan 23, 2011
Messages
167
Yes, this is the problem I always have! I have apparently gained 1.2kg in weight, but in terms of celebrating, I don't feel I can, since I look, physically like I'm losing weight.
My arms are thinner, my legs look like cocktail sticks and my ribs are all visible. But my tummy looks like I'm six months pregnant! :depressed:

What the heck is going on?
Does anyone else apparently gain weight but so obviously, physically are losing weight?
Why on earth would this happen? :confused:

I hate it when this happens, because I have been accused of "Water loading" before being weighed at the hospital. Why they think for one second I'd WANT to water load I have no idea, but this is doctors and nurses for you. If they can't see a reason, they just blame you! :mad:

AAAARRRRHHH!!!! BODY JUST BLOODY BEHAVE WILL YOU!!!

:grumpy:

(Excuse my outburst, but I am rather frustrated with this)
:sign0085:
 
Well than im not sure try to find a specialist id made all the difference in the world when i was first diagnosed.

Are you diagnosed with chrons?
 
Hi, no I haven't been diagnosed with anything to date, unfortunately I was incorrectly labeled with Anorexia Nervosa 11 years ago, and ever since then have been treated appallingly by the NHS and accused of lying about my symptoms.

The doctors are now willing to accept that I am NOT Anorexic and that there really is a problem, but they have no idea what to do help me. I've had basic gastro tests, which show nothing wrong with my colon, but I still get very ill when I eat.

I really am fed up of being ill, I'm 24 years old next Wednesday and I can't believe I am still ill, after all these years, I am pretty desperate to start living the life I should have been living for the past 11 years. I'm sorry I'm ranting now... I am pretty down in the dumps at the moment and this thing with my weight and body doing weird things is just the cherry on the cake really.

I wish I could get some kind of diagnosis, at least I'd know where I stand then. But with no tests being done by the NHS I really have no hope of finding out the real problem, at least in the near future.

xxx
 
I hope they find out whats wrong i wish i could help but i only understand my own disease.

I got diagnosed at 15 in 9th grade and my life hasn´t been what i imagined at 14 but with a good Dr that understands the problems can help alot i lead a pretty normal life i work even when i have flares and Workout 3-4 times a week and so on (I work with Computers Luckily)

For example the first "Dr´s" i had got me on Remicade but used the medecine completly wrong dosage and Schedueled it extremly wrong and so on basically i was being treated by idots and this is in Sweden a country with one of the best healthcare & healthcaresystems in the world.

EDIT: BTW what diets have you tried? Something that helps me get my apetite up is spicy food it does not need to be Crazy hot just a bit and it makes my Naussea go away & It makes me wanna eat more when i have flares.

If nothing legal helps i can only recommend weed which should be legal anyways and if you wanna do it legal take a trip down to Amsterdam for a weekend try it out it trust me it works.
 
Last edited:
Thank you for your lovely email!

Oh yes, I've heard Sweden has an excellent health care system. I've seen a lot about it on the TV recently, I think the English NHS is put to shame by the Swedish system. Wrong drug dosages though, gosh, that sounds pretty horrific! I suppose at the start its a bit of a trial and error situation, which meds suit you best and the dosages, but it still strikes me as incredible that doctors just automatically turn the drugs to control nearly all illnesses these days. I'm not a fan of medication, I have to be honest. I've seen it really hurt some of my friends, when they've experienced side effects, but if you can manage to get on one with no side effects that actually helps, that is fantastic. But I think it is usually a shot in the dark with meds isn't it?

I am so pleased you've managed to get your condition under control, it sounds like you do very well considering.
 
I don´t have that much control over it really but im very used to it after 11 years and my Dr reacts to flares fast.

Did you read the second part of my post have you ever tried any of my tips?
 
Oh yes, I did mean to mention in my last response actually. I have tried loads of elimination diets, to be honest it doesn't really matter what kind of food it is I eat, I always get the same horrid symptoms.

One week I ate nothing but just vegetables and even on that diet, it was the same as eating anything else. I've tried gluten free, dairy free, low carb, low sugar, low fat, low FODMAP diet, LOFFLEX diet etc... Hundreds of diets, its just my entire digestion, I think its just switched itself off completely.

I have tried the spicy thing as well, I sometimes drink water with Cayenne pepper in it, but it doesn't really have much effect.

I do like the sound of weed, although, the thought of smoking it really would scare me, I guess it the whole drugs thing that scares me a little, because I know how addictive they are.

Thank you so much for your suggestions though, I am sorry I forgot to add this to my previous email, I did mean to! lol, my mind is somewhere else right now I think!

Much love, and big hugs
xxx
 
Hey Heidi

So sorry to hear you're down in the dumps and having a s**t time :(
Sending you lots of hugs :hug:

I know nothing about how to gain weight, I'm usually trying to lose it. I just wanted to chip in here to offer you a bit of support love :)

:rosette2:

Love

Paula
x
 
Oh Paula Thank you so much! That is lovely :) brought a great big smile to my face!

Lots of love and big hugs to you as well chick, I hope you're doing okay
xxx
 
Hey Heidi

I'm pretty much the same hunny, saw the GI today, MRI and Endoscopy to be done. In the meantime my steroids have been increased :( But I'm feeling positive, at least I'm moving forward :)
I hope you get sorted soon though love, are you pushing for further tests to be done?

Big hugs

Paula
x
 
I can see its frustrating for you to have to have more steroids, it must be really tough. I really hope they are beginning to improve your quality of life though, I've heard steroids can be miracle drugs in Crohns and if you get the ones that work for you, it can totally transform your life.

As for my tests, to be honest I have tried pushing to get more tests done, but have been met with brick walls. My GP is the most unhelpful and insensitive git I can possibly imagine. Just the other week he came out with a totally uncalled for remark, which showed me he's not interesting in helping me. He said "Get over it and eat, or you will die." I'm changing GPs. I've had enough of being treated like this.

I really hope my new GP will be more understanding and helpful, I dread to think what my medical notes say by now though and the new GP will just read them and probably make up their own mind before they've even met me.

On a happier note, I have discovered that my problems do seem to be stress related, I've heard that lot of IBD is related to stress. I'm hoping to find some answers soon, I'm very hopeful :) xxx
 
Aw Heidi, your GP sounds awful! Good for you for switching, I hope the new one is much more understanding and not a jerk like your current one sounds to be. And you're right about stress aggravating symptoms (as you know I'm undiagnosed too so I can't say for sure that stress aggravates my IBD, but it aggravates whatever I've got). When I'm stressed I feel much, much worse. I tend to be a worrier and I hold on to things, I've got to try to let some things go and be more easygoing (easier said than done!).

I hope you're somehow able to get more tests scheduled soon. I really feel for you and for everyone on here who's undiagnosed. It sucks and it's so frustrating! Yeah, it'd be bad to be told I have an IBD, but I think it's worse to not have a name and therefore not a solid plan of attack for the monster living in my guts. It's so unfair that it takes so long for us to get any answers, and that we have to deal with jerky awful doctors who don't seem to care that we're suffering. I really, really hope your new GP is able to help you to get a proper diagnosis and some real relief and treatment. Good luck sweetie. Keep us posted with how the new GP goes!
 
Hey Heidi

God your GP sounds like a right s**t!!! Good luck with the new GP hunny. Keep changing until you get the right one for you, you are well within your rights to do that.

Ahhh the dreaded stress ehh?!! Me too, that's what has kicked off my latest flare for sure. It's facinating what the body unconciously does to itself isn't it?!

Keep us posting on how you're getting along hunny.

Hugs to you

Paula
x
 
Yes, most of my GPs have been the same to be honest, this one was just a little more outspoken about his opinions than the others. :thumbdown:

Yes Kwud, the way the body seems to react to stress is profound, I think stress can kill people and it certainly ruins lives, it doesn't surprise me at all that you flare in times of stress. I really hope you can find some way of alleviating the stress and helping your symptoms to calm down. :hang:

Cat-a-tonic, I am very sorry to hear you are one the undiagnosed, yes it is a pretty miserable place to be, having to deal with whatever "this" is without the support of the medical profession. :mad:

Are you seeing anyone or having any tests done to try and establish your own diagnosis? How are you managing to cope? I find it is pretty horrendous, some days I just feel so lousy its unbelievable. But you keep going in the hope that one day you'll find the answers I guess! There are definitely a fare few of us that are members of the undiagnosed club aren't there?

Good luck sweetie, I really hope you are managing to attain some quality of life in spite of everything.

Big Hugs

xxx :hug:
 
Hello there,

Unfortunately I really do not know what to tell you or how I could help you, though I really wish I could. I gain weight, unlike most people on the board and would give you some of my lard if you ever need any to organize your body. Though when I had diarrhea, I was skinny everywhere but had a huge tummy that looked like how you described yours. My mother told me to think like how malnourished many Africans are, they are utterly skinny but have stomachs too!I really don't know, I hope you get better soon and hopefully find some answers. Best of wishes and many hugs to you!<3<3

kisses, Aya
 
Thank you Peace and Smile for your lovely message, I really appreciate your words of support! I wish I knew why my body was reacting like this, it seems I'm not alone in the "pregnant belly" syndrome. It is pretty damned uncomfortable! You are very right about the whole African Bloated tummys look, that is kind of what I look like at the moment.

I hope you feel well and are managing to keep your condition under control,
Take care chick,
Heidi xxx
 
Hello SuperCell! I'm sorry to hear that you are undiagnosed and having to deal with awful doctors, I'm in a similar situation and I can empathize! I hope you receive a diagnosis very soon! <3

Last year I lost about fifteen pounds but over time I have managed to gain it back. Last night I noticed I was looking thinner, and since I've been feeling so ill lately and not eating much I assumed I had last weight, but when I weighed myself I saw that I had actually gained three pounds! I also have the same problem with my stomach swelling up, sometimes I feel like I look preggers too but everywhere else I'm pretty thin.

Again, I'm sorry you are going through so much right now, if you ever want to rant we are here for you and we all hope you get some answers soon! :hug:
 
That's horrible, Heidi! That bloated belly sounds awful. I'm sorry that you are having such a tough time. I will pray that your doctors will find the answer to your condition. You shouldn't have to suffer like that, sweetie. Here's a hug for you.:hug:
 
Could you be malnourished?

Many C & UC sufferers are because we can’t absorb nutrients well.

Even if you don't have C or UC, you could easily be malnourished anyway. I have read that most obese people are malnourished and people with anorexia are malnourished. In fact, most of the population seems to be, due to our modern diets.

When I have lots of inflammation in my bowels, I also look like I am 9 months pregnant. As my arms and legs are thin but my tummy area is big.

And sometimes drugs and some supplements cause fluid retention. So it looks like you are gaining weight, but you are not really.

Are you doing any exercise? If not, you could be losing tone and think you are getting thinner.

No idea what is wrong with you to be honest, just throwing ideas around. Better get it checked out.
 
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supercellbaebe said:
Thank you Peace and Smile for your lovely message, I really appreciate your words of support! I wish I knew why my body was reacting like this, it seems I'm not alone in the "pregnant belly" syndrome. It is pretty damned uncomfortable! You are very right about the whole African Bloated tummys look, that is kind of what I look like at the moment.

I hope you feel well and are managing to keep your condition under control,
Take care chick,
Heidi xxx
Click to expand...

You are most welcome, I really do wish for the best and hope you can be cured swiftly as possible!Its dreadful such terrible things happen to such great people such as yourself!I understand what you mean, its a horrible feeling to have and to look, at that!
Thank you, I am not doing to well with my current infection, but thank you I am trying to tame it. My doctors exclaimed that I am a "walking medical mystery!" XD
Take care and hope you will get better! I will try to see if I can get some answers for you on this matter, I think it might help a lot of us. :) So far all I could find that its being malnourished. :/
Good luck!<3

kisses and hugs, Aya
 
Malnourished is something I most definitely am! I'm extremely underweight and I've been unable to eat a normal diet for an unimaginable amount of time, and even when I forced small amounts of food down my neck before, I suffered from malabsorption, so it was a futile effort. :yrolleyes:

rjeatlantic, I think its not likely I've gained weight. My mum arrived today after not having seen me for a few weeks, she was pretty shocked by how much weight I had "lost" its almost laughable that actually the number on the scales has gone up, yet I look so much thinner. My body does these very bizarre and pretty inexplicable things! I guess on this forum we are all in a similar boat aren't we?

Although I am without a doubt malnourished. The the elemental 028 diet is giving me a fair few nutrients now, more nutrition than I have been having for months. I don't think this is the cause of the abdominal distention.

I went to see a homeopath the other day, it was pretty fascinating! She told me I have fungal and gut flora imbalances, I'm wondering if this might have something to do with it? I do have Systemic Candida, but why it would just suddenly get worse and worse really rapidly over just a few weeks I don't know! The only change I've made to my diet is to add in more Elemental 028 drinks, I HAD to do this because before I was basically on a starvation diet. I'm still not having enough drinks though, I just feel so bloated and uncomfortable, I've been unable to add anymore. :(

Its a mind field, could be so many things...

Peace and smile, I am very sad to hear you are struggling with a nasty infection. That must be really horrible not knowing what it is! What has happened to try to establish what the infection is? Are your doctors gong to try to find out answers?

I really hope you chick, keep your chin up chuck and stay strong. You'll feel better one say soon and when you do it'll be better than you ever imagined possible, of that I have no doubts! Its true for all of us I believe. :hang:

Much love and big hugs to everyone!
:ghug:
xxx
 
You poor thing, I cannot believe how much trouble you are going through!I am so sorry!*hugs*
Sorry I am not familiar with the Elemental drinks, but have you tried maybe Ensure or Nutridrink?When I was malnourished and had absolutely no nutrients in my body because of the constant diarrhea, I had to drink three small boxes of Nutridrink a day to somehow gain back the factors I lacked. They are pretty tasty too, especially the chocolate and strawberry flavors!:)
As for the fungal imbalances and the Systematic Candida, those could be causing your problems too, which I am most definite you know!
I am going to my GI next week or the following probably and will ask her what kind of advise she can give for you, she is quite famous here, medical wise, and she is an angel, so hopefully she can help. Please do let me know if there is anything else I can ask her about for you.
Thank you for your concern, unfortunately its a nasty infection that occured after my surgery last October. Supposedly it is better, but it bleeds. Thank goodness its not my main inflammations, so I cannot even say it is a flare. My doctors are befuddled by it and do not know why its there. We have tried all sorts of treatments on it, but nothing seems to work, even the enemas that always helped don't do. Oh well! Thank you once again!
You keep strong and take care!I hope you get better soon!You need to eat!
Much hugs and love to you!<3<3

kisses, Aya
 
Hey Heidi, wanted to respond to your question of weight gain. I am in need of gaining weight and nutrition and finally found something that works for me: homemade shakes! I add a scoop of protein powder to fresh fruit and a scoop of icecream and that seems to work for me and I like it a ton better than those "awfully" sweet drinks and power bars. They only make me feel full and nauseaus. But, I love fruit and this way I can mix and blend any flavor that I like ... just a thought!
Hope you will feel better soon and find a doctor who actually cares.
 
Thank you so much everyone, what wonderful people there are on this forum :).

Peace and smile thank you a millions times for your support and your offer to ask your GI those things regarding me. I really really appreciate it.

Oh dear your infection sounds very perplexing, I have no idea about what could be causing that. You could ask to be referred to a dermatologist? There's a program on TV every Friday in England called "Embarrassing Bodies" on there you get a lot of people with perplexing conditions and I remember a man who was complaining of something similar to what you are experiencing. A dermatologist was able to diagnose and treat the problem.

Lostnut I really appreciate your advice! I am working hard to try and get off the Elemental diet at the moment, I don't actually think being on the diet is doing me any good to be honest. It just seems have have made me more bloated than ever. Maybe it is time to try something different.

Thank you so much everyone!
Big Hugs
xxx
 
You are a thousand times most welcome, I am glad I can help in some way!<3
As for my infection, its inside of my colon, like the last few cm of it, so I do not know how a dermatologist can help other than a GI, but thank you!:O
Get well soon!<3<3

kisses and hugs, Aya
 

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