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Crohn's Disease
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Posted 9/20/2007 8:51 AM (GMT -8)
confused  HI I JUST HAD A MEDICAL TODAY BY A DISABILITY LIVING ALLOWANCE DOC AND I HAVE LOST A LOT OF MUSCLE TONE IN BOTH MY ARMS AND LEGS HAS ANYONE ELSE EXPERIENCED THIS WITH CROHNS DISEASE?
Posted 9/20/2007 9:09 AM (GMT -8)
Probably due to the medication you are on. Cortisone is a muscle wasting drug I believe. Can you start a workout program?
Posted 9/20/2007 10:45 AM (GMT -8)
hi dizzy

         workout lol im been lying on my sofa for over 3 weeks i get a great workout going to the loo about 20 x a day lol would that qualify as a workout lol.

seriously dizzy i dont have the energy for a workout as i suffer from asthma as well and with not being able to eat for over 3 weeks im suffering from malnutrition again i was over 112 ibs a month ago now im down to 98 ibs again guess ill have to go kiddie shopping again lol hmmmmmmm crohns has got its advantages and disadvantages (smile).when my energy returns and im not so lethargic and tired all the time ill enjoy my workout retail shopping yeah

Posted 9/20/2007 11:35 AM (GMT -8)
You can exercise while layin gon your couch.....get some 1 or 2 pound weights, and use them for your arms and legs while you lay on the couch.
Posted 9/20/2007 12:01 PM (GMT -8)
ive been doing that its all i can do until i can start to gain some weight again its not until uve been diagnosed with a chronic disease u start to realise the full impact it has on your life and how it affects your family and friends i was so active before i was diagnosed 2004 as the saying goes

"life is not a rehersal"
Posted 9/20/2007 1:23 PM (GMT -8)
When you suffer from Chronic malutrition and having muscle wasting like that things start to get really serious. Your body is eating up muscle, your heart is a muscle too. What are they doing to help you in this area? meds? TPN? or has your condition stabalized and your in recovery mode. If so, just gentle walking at first, I guess try to keep moving until you feel stronger to increase your activity, make sure you get some Protein in your diet, quite a few on the member recomend Yoga also.
Take care and I hope you feel better soon.
Tess
Posted 9/20/2007 1:37 PM (GMT -8)
hi tess
at the moment im in recovery mode i had chronic diahorea for 3 weeks i was given codeine phosphate to control the diahorrea last saturday i had to call in the doctor again i had swollen glands for the 2nd time in 4 months im in the supplement drinks for now so i can build my energy back up again with my immune system being low and the antiobiotics ive been on i have not been able to have my methotrexate due to the antibiotics given my partners een taking care of me even though hes 3 hrs away from where i live how he tolerates me ill never know (smile)tomorrows another day on the mend now hopefully still feel lethargic and tired though but ive been down this road before many times now just one of the many hurdles to get by (sighssssssssssssssssss)
Posted 9/20/2007 1:50 PM (GMT -8)
I was skin and bone in hospital so they sent in this young guy who was a Physiotherapist and he drew these little stick people on a piece of paper lifting their legs up one at a time etc. It was funny, I guess drawing wasn't one of his strongest subjects at school.
I was so pathetic and weak, and on TPN, I began to get a bed sore on my tail bone, these two nurses came on duty one day, turned me onto my side, took a look at it and proceeded to rub some ointment into it telling me in no uncertain terms that no-one was getting a bed sore on their shift. I was like this little limp rag doll, talk about pathetic, this nurse worked part time at the hospital and was also a district nurse so she called on me also when I finally came home. Jenny was wonderful and so caring.
To tell you the truth I've had more sensible advise from Nurses than most of the Doctors, we have a friend whose an intensive care nurse he said I'd probably put the weight back on but gradually.
Look after yourself and I hope you begin to feel a little stronger with each passing day.
Tess
Posted 9/20/2007 2:14 PM (GMT -8)
yes I have,I all ways worked out and I walked at least five miles a week as well.But when I got really sick I had to stop because I just did not have it in me to keep up with it.
Posted 9/20/2007 2:19 PM (GMT -8)
:-)  ty tess i truly appreciate that got the mind of a 40 year old and the body of a stick insect!!!!!!!!!!!! sad .

during the month of august i weighed 112 thats the heaviest ive ever been in my life now im 98 again i cant afford to lose anymore weight ill be falling down a drain lol i knew you had weight loss but this is ridiculous who need SLIM FAST when uve got crohns disease its falls off naturally unfortunately sad

Posted 9/20/2007 2:26 PM (GMT -8)
When I came out after my big op I was on prescription Ensure Plus for well over a year to try and build me up. Ian would pick the trays of it up from the Chemist each month and the Chemist would comment we usually get people getting products to loose weight not put it on.
Posted 9/20/2007 2:37 PM (GMT -8)
tess us women are never happy about our figures my dietician prescribed both the clinutren and the fortisips but i had to be taken off them as they kept making me sick i am now on kandishakes which dont taste quite so bad so ill continue with them.
wheres arnie whren you need him lol ive only been able to eat soups and desserts lately so hopefully ill start to regain the weight once i begin to eat solids a again been through this hurdle so many times if only i had a remote control so that i could press fast forward (smile)everytime i go through this stage
Posted 9/20/2007 5:04 PM (GMT -8)
Hi Glad your getting some liquid nutrition into you and your getting some soups and stuff I liked them because they tasted good. I used to walk around the table for exercise I started with a few and just did more in a few days. I loved french toast too so that helped with the protien. So what are you doing to put in time? Glad your able to join us on here. Keep up getting better and let us know how your doing. lol gail
Posted 9/21/2007 5:39 AM (GMT -8)

angelang40 said...
hi dizzy

         workout lol im been lying on my sofa for over 3 weeks i get a great workout going to the loo about 20 x a day lol would that qualify as a workout lol.

seriously dizzy i dont have the energy for a workout as i suffer from asthma as well and with not being able to eat for over 3 weeks im suffering from malnutrition again i was over 112 ibs a month ago now im down to 98 ibs again guess ill have to go kiddie shopping again lol hmmmmmmm crohns has got its advantages and disadvantages (smile).when my energy returns and im not so lethargic and tired all the time ill enjoy my workout retail shopping yeah

 Hi, sorry I didn't realize how underweight you were.  How quickly I forget, but when I was 40lbs underweight all I did was sleep. No energy to do anything.  It's hard to maintain muscle when you are eating below maintence.  about going to the loo 20X a day, I think that would be considered cardio---not what you want lol.  Take care.

Are you able to handle protein shakes or smoothies?  Do you take fish oil?

Posted 9/21/2007 6:29 AM (GMT -8)
hi dizzy :-)

         i take vitamin b12 and iron and cod liver oil i just feel so lethargic ive really got to start putting on weight a stick insect probably weighs more than me right now (HA HA)at least ive still got my sense of humour vital for a cronnie :-) .i have not been out the door in weeks i just dont have the energythis is the worst ive ever felt in a long time unfortunately!!!!!! my daughters coming over tomorrow im sure she will brighten up my day :-) .

got the period from help so that does n ot help any either they usually last over a week and are quite painful oh how i hate being a womannnnnnnnnnnnnnnnnn lol sad

LIFES A JOURNEY YOU NEVER KNOW WHAT LIES AHEAD

IN MY NEXT LIFE IM COMING BACK AS A MAN DONALD TRUMP THE 2ND LOL

Posted 9/21/2007 7:03 AM (GMT -8)
 

 I'm surprised you still get your period.  Mine stopped for almost a year once I took myself of the pill. (too tired for sex) No period, no underarm or leg hair growth...I saved a pile on tampons and razors. lol.  Enjoy your daughter's visit.

Posted 9/21/2007 7:27 AM (GMT -8)
i wish i never even thought of getting the gear box out never know what pains what lol period or the crohns enjoy your weekend dizzy (smile)
Posted 9/22/2007 1:17 PM (GMT -8)
This is a very unscientific answer, but there were 4 things that occurred prior to my Crohn's diagnosis. (1) I noticed loss of muscle (mass, not tone) in my arms and torso, maybe a bit in my legs (2) dark circles, sunken eyes (3) mucus in my stool and (4) aches and pains. I haven't discussed or had the loss of muscle analyzed in any way, thus the unscientific answer part.

Since I was not exercising as much due to the aches and pains, was breastfeeding (have been for 2 years now) and had just been pregnant, I found it difficult to chalk up any of the symptoms other than the mucus in my stool to anything independent of the pregnancy/childbirth/breastfeeding cycle. Especially since I'd never been pregnant before and had nothing to compare it to.

My hunch is that I was suffering from malabsorption and that contributed both to the dark circles under my eyes and loss of muscle mass. Though I wasn't exercising as much, caring for a child requires the equivalent of an upper body workout every day and I wouldn't expect to look scrawny. I also found it hard to keep weight on, but this was attributed in my mind to breastfeeding.
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