Announcement Module

Forum changes

In the next few days we'll be switching to new forum software which is much more stable and will eliminate the problems we've had over the last few months. Once we've switched to the new software every member will need to reset their password. You can still use your current username. You'll need to click on the "forgot password" link and follow the simple instructions to reset your password. Please make sure your email address is up to date in your account now. Remember, you don't need to do anything yet, carry on using the forums as normal, and it will be obvious when the switch has gone through and you need to reset.
See more
See less

Feeding tube?

Page Title Module
Move Remove Collapse
Conversation Detail Module
  • Filter
  • Time
  • Show
Clear All
new posts

  • Feeding tube?


    In a few weeks I have to get back to my rheumy. Now I am quite a bit underweight (I've been on bmi 12-14 for a few years now) and I heard I could get a feeding tube even if I feel fine and my blood work is fine too. I really don't want that, is that true? I know it is unhealthy but I have been this weight for a while and I eat fine, too.

    My rheumy hasn't put me on a scale by the way, but she has seen me in my underwear doing a physical examination, and she didn't mention a feeding tube... but the thought of it just freaks me out.

  • #2
    Hi 7th and welcome :bigsmile:

    I am sure that if your BMI is 12 -14 you need some help to get it up. You may think yr eating fine but if yr female and that thin something's not right!! I would briing the subject up nxt chance you get


    • #3
      Hi 7th and welcome to the board.

      You say your blood work is fine and so I assume that you have had all of your nutritional numbers checked and your not lacking in anything???

      Maybe some protein shakes would help you, especially if your eating well and yet unable to gain weight.

      I have had a feeding tube in the past and it is not fun but as long as my nutritional numbers come back ok in my blood work then we do not discuss any feeding tubes.

      I am also very thin so your not alone. I hope you get this sorted out.


      • #4
        Obviously there is great concern about you being so underweight, and understandably so. There are all sorts of reasons for being seriously underweight which should normally be thoroughly investigated. There are also serious health implications especially if the person already has a chronic condition. Undereating is usually suspected in the first place and has to be eliminated as a possible cause and a dietician would normally be brought in.

        It will have to be demonstrated that you really are eating 'fine' which is usually done by stepping up calorific intake, eating more of foodstuffs that would normally put on weight and eating more often. You should be getting professional medical help with this. If you then don't put on weight other causes need investigating such as malabsorption for some reason.
        I suggest you start by keeping a list of exactly what you are eating.

        Your best plan is to cooperate fully with the efforts that are being made to increase your weight to healthy levels and to participate actively and willingly in any investigations. It will have to be proved that you are indeed perfectly healthy but I think the burden of proof would have to go both ways. I can't imagine anywhere where forced feeding could be justified legally unless those responsible for your well being can prove that it is medically essential.

        Your rheumatologist apparently isn't involved in your general care but really she should be. Weighing the patient and noting their physical state is a routine part of a proper check up. The fact that she hasn't made any comment proves nothing.

        All the best


        • #5
          A feeding tube sounds a bit drastic I agree.
          In your place I would want to know if I really was fine since chronic malnutritian (sorry that sounds a little strong but surely thats what is suspected if a tube is considered,) can lead to rickets and/or poor bone density, lack of periods and other hormone imbalances and difficulty in conceiving. You could loose teeth and hair and much more.

          I would suggest you ask for a dietetic referral and as Clare states, keep a true food diary.
          Good kuck

          BTW the doc should check for any medical reason for the condition. For example a school friend of mine was undersized and very skinny but with a large distended tummy. Turns out she was ceoliac and her shape changed incredibly with the correct diet.


          • #6
            My son, who was born weighing 1# 14 oz, had at feeding tube from 18 months till 4 years old. He also has spastic quad CP and muscular dystrophy. Today at 14 he weighs around 97 pounds and is about 5'1" butting his BMI around 18 and his hieght and weight around the 4th percentile.
            I'm not looking at the feeding tube again because he eats like a teenager ( send money or food ) and he stays healthy, meaning that he has enough nutrition to fight off all the majority of the nasty bugs going around. He also has enough energy to learn. At the time he required the feeding tube , none of that was true. In fact just before he received the gtube his PT refused to do even passsive exercise on him because she was worried it would put him into cardiac arrest, since he had no fat reserves and he would be burning muscle reserves to do the most passive every day activities. As scary as his body looks today, he is in a good place.


            • #7
              Just so everyone understands how severe the weight loss is... this is 70-80 pounds for a woman 5'4" tall. Haven't calculated it in stones/cm but someone else can if they want to. So this is 40-50 pounds underweight... a BMI of 12-14 is severely underweight and that does carry significant health risks. Heart and liver damage usually occurs with this low of a weight for instance.

              If you are eating "Fine" then there is something seriously wrong with your intestinal tract. Most doctors would have you in the hospital, and do a full work up including upper and lower GI, in addition to numerous lab tests and scans unless it has already been determined that you have anorexia nervosa and that is why your weight is that low.

              Most people who do not have an eating disorder would want to get their weight back up; I have to question if you have an eating disorder & are resisting treatment for that more so than anything related to lupus. Good luck with everything & I hope you find yourself feeling better very soon in all ways with some treatment.


              • #8
                adding calories

                I agree with you Claire, that being severely under weight is dangerous.
                Like I said, my son's PT refused to do even passive ROM for fear of sending him into cardiac arrest. One of the major issues my son had was delayed gastric emptying. This will be TMI but what he ate on Monday was still there Wed.! To keep putting food in to him caused him to vomit. At the worst of times he was able to tolerate 1 ounce per hour through the gtube without throwing up. The gtube didn't put on weight for this exact reason. At age 4 when the gtube was removed he weighed around 30 pounds. So indeed the need to find out why such low weight is essential...but doctors are not very helpful. What I learned to do was to add calories with out adding bulk. Lots of butter and cream ( I could out do Paula Dean back then) works. There are also shakes called Scandi Shakes, that can pack the calories but not the bulk. It is bit expensive as well


                Alex also gained a lot of calories through Carnation Instant Breakfast made with whole milk. So there are lots of ways to add calories but the most important thing is to find out why there is a lack of weight gain
                Last edited by JoD; 07-24-2009, 10:15 PM.