No Appetite only 34kg help

[georgina]

Hi I have been diaignosed with crohn's since i was 13, i had to leave school early because i was that ill for many years, i am now 26 and still with chronic crohns no appetite at all, i am forcing myself to eat a slice of toast in the morning, i am 5'3 in height and weigh 34kg in weight, my partner is at breaking point because my weight has dropped so much, i really do not know what to do, i have spoken to my doctors and they see themselves how much ive lost but all they do is eating plans and dont realise how serious this is, i feel and look like a walking skeleton, and i feel like im going to loss my partner soon, it has been like this for 6 years now, i feel like doctors in ireland think crohns is just a few toilet bothers thats it, all i keep hearing is it could be worse, ive been diaignosed with osteoporosis from all the weight loss and have pain constantly, if any one has similar affects please let me know thank you

 

[kllyeve]

Get some Boost or ensure, let it get really cold in the fridge and sip on that all day. It is chock full of vitamins. minerals, and protein. Or get on a enteral nutrition program from your doctor.

You have to get some nutrition into you. I know it may hurt to eat - I went through a year like that but the Boost helped me.

 

[georgina]

i have tried all of that too, its been 6 years of looking like a bag of bones and now i just cant do it no longer, ive tried everything i can think of. but thank you for reply

 

[georgina]

it is just constant running to the toilet aswell i dont no what it is, ive tried all tablets for it aswell

 

[rygon]

Could you please tell us what medicine you have taken already and anything else (diets tried, your symptoms etc) so we have a bit more to go on.

 

[sid]

If you have tried stuff like boosts and other supplement and still dont improve, then I think you have some absorption issue ( perhaps a little more than other crohn's patients)..Thus i would suggest you try the herbal route...introduce juice in your diet along with everything else that you eat ( no juice fasting)....take protein supplement or Glutamine after consultin your doctor) and I would strongly suggest taking wheat grass juice.

 

[kiny]

You should go on EN, and if it your weight doesn't go up ask for a hospital intravenous IV feeding through your neck, you won't have to eat but you will have to stay in the hospital for a few weeks. I did it when I first got crohn, there are worse things, 34kg is really low, I would be worried, make sure you take action.

You can also ask for a glucose IV to your hospital, it takes maybe an hour with an IV and you'll have a bunch of calories extra for the day, it's nothing, just ask your hospital.

I wouldn't worry about the why and how atm, doctors can tell you that, but I know when I was 36kg years ago, I fel like I was about to die at times, 34kg is really really low.

 

[xmdmom]

Hi Georgina,

I'm sorry you have had such a difficult time. Is there a big (tertiary care) hospital nearby that has a nutritional support team? I'd recommend a nutrition consult but not from any dietician-- it should be from a nutritionist who deals with enteral nutrition, supplements, tpn. I'm astonished your GI doctor doesn't realize how serious this is. It is very serious -- is there another GI doctor you could consult?

If you tell us more about your history (surgeries?), medications (past and current) and symptoms, people here may have some good ideas for you to investigate.

(((Hugs)))

Don't lose hope!
-xmdmom

 

[kiny]

what xmdmom said

I would really ask for people to support you, i.e. hospital, nutrition team. They all have glucose IV and can all provide you with intravenous feeding.

You can just increase your calories in the meantime by eating things that absorb easily, simple sugars, fructose and glucose and protein. You can get glucose from anything, any sugary soda, dextro tablets, honey, any form of candy, and protein powder is the easiest way to increase protein intake, and multivitamins for your micronutrients. Glucose intake will increase your energy and replenish glycogen storage, which will give you easy calories and energy. Using them together is best, it will lower insulin if you eat a lot of sugar, but simple sugars and protein powder is an easy way to get your calories until you get help.

 

[DustyKat]

Hey georgina,

Oh my...:hug:...my daughter was diagnosed at 14 and at her worst weighed 34kg. It was awful for her and heartbreaking to see. She had not gone through puberty at that point so was shorter at then. I dread to think how you must feel.

Oh and it could be worse? Really? What a bunch of :quack:

I too have the same questions hun...

Where is your Crohn's located?

Have you had any surgeries?

Can you get a second or third opinion?

To me, from a nutritional standpoint, EEN would be the best option for you at this point and via NG tube, starting out very slowly to allow your body to adjust. Failing that then TPN.

Hope to hear from you soon. :hug:

 

[georgina]

i have been on every tablet, steriods, treatments they can give me over here, humira, infiximab, pentasa etc. my spelling is terrible by the way,now they are lost, ive had the tube up my nose down into my belly 6 weeks at a time and have only got up to 38 kg and because u need rests from it my weight just falls off again, they have taken bit after bit of my bowel away, i have begged them to take the hole dam thing out but they wont do it, i feel like they just want me to drop and i know that my not be true, but when you keep begging for a soloution and nothing happens you get so down about it, ive tried over the years to make my partner understand but the poor thing is fed up feeding me through tubes and seeing me like this, and its not right on my kids. I am on no medication at all now after finishing the infliximab, just wish ireland was more up to date like the usa im that bad i have even wrote to them asking for help from someone in the usa, i feel like my hearts going to give up and i want to see my kids in life growing up not let them see me die. if i had the money id be away to america straight away for 2nd opinions but really cant afford it over here never mind that. there is only 2 gi's here and the 2 of them bounce of each other ones where i live the other is in dublin and both dont know their arse to their elbow!

 

[georgina]

ive tried every diet possible to help, exercised slowly to try help, my partner has left his job 3 years ago to look after me because i wasnt able to look after kids properly and thats a killer to me because i love been a hands on mum, they have taken bits from my colon and small bowel, appendix, one ovary ive been in surgery 12 times now beacuse wounds didnt heal and not stitching me properly,

 

[kiny]

I hope it works out for you. Please don't suggest to take more bowel from you, would not want to see you get in more issues. Maybe someone on the forum can find you a better GI, there are some from ireland here, or maybe the UK. Not sure how to help.

Don't give up, you seem to have a lovely partner.

 

[xmdmom]

The fact that the NG tube feeds brought your weight up 2 kg is good-- it means that your intestine can absorb nutrients. I don't understand why they said 6 weeks and then take a rest. Perhaps you need to start the NG tube feeds again. I know it's not fun, but it might be what you need to do to get stronger. When you are at this low weight it can affect all of your systems. Malnutrition may be the reason you've had so much difficulty healing after surgery.

Do you know these doctors listed here http://www.crohnsforum.com/doctor/eu/ie/?

Do you have an internist or can you find one who might advocate for you with the health system to get the care you need?

 

[hugh]

ive tried every diet possible to help,

have you tried paleo?
I'm serious, look into it - it changed my life

definitely with supervision though.

I kept loosing weight (down to 55kg) and only started healing and putting on weight once i stopped grain, sugar and veg oils.
Boost and **** like that are ok for some but it is sugar water and not as healthy as they would have you believe........
From a paleo or real food perspective they are poison and will keep you sick.
Corn, soy, sugar, lots and lots of sugar

 

[georgina]

I hope it works out for you. Please don't suggest to take more bowel from you, would not want to see you get in more issues. Maybe someone on the forum can find you a better GI, there are some from ireland here, or maybe the UK. Not sure how to help.

Don't give up, you seem to have a lovely partner.

thank you and yes for only been 28 years old he is great partner he has stuck through this 8 years now, when we met i was much much larger in size i was around 75kg normally well rounded should i say and to see me like this must be heart renching. from all of this tho he has gained all his health and fitness certificates to learn more for me to help me.