New to the forum

[vnct]

New to the forum - looking for a meal replacement powder

hi, i'm new to the forum. i'm male, age 43 in chicago. i've had ulcerative colitis for about 25 years (age 18 to 43).

i was instructed by several doctors to have surgery, but chose not to. instead, i've been on prednisone near perpetually for the last 25 years with absolutely no surgeries. i've had internal bleeding for at least 12,000 visible instances over the last 25 years. there are 9125 days in 25 years. this means that i have visibly bled about 1.3 times on average per day for the last 25 years, although visible bleeding has fluctuated from 0 times to 5 times a day.

my bodyweight has fluctuated between 110 and 220, and is currently at 190 on prednisone. my natural healthy bodyweight at 5'6" would be 150, if i didn't take prednisone. my digestive tract is distended to at least double the size, which makes my stomach look unnaturally fat like a starving child in africa, but it is actually blood/water inflammation. i have a full home gym in my condo living room, but i'm often unable to use it when i get physically weakened by my ulcerative colitis.

after 18 years of abdominal torture, i've made my colon virtually immune to pain by super-heating the left side of my torso in very hot water in the bathtub. after about 50 15-minute sessions, the heat from the bathtub water began to penetrate the organs within the left side of my torso to develop pain immunity. i had also coupled this with ingesting very hot pure water (hot like coffee) to aid in super-heating the organs within the torso. this means that i feel virtually no pain, even if i bleed profusely. my brain produces natural pain killers so that i have not needed pain killers for the last 7 years. i am virtually pain free without pain killers, despite being very ill. however, i still get fatigued.

i'm looking for a meal replacement shake/powder for ulcerative colitis, but don't know yet where to find the best one at the most economical price. i want to get off of the prednisone permanently by using a meal replacement shake/powder, if possible.

 

[Angrybird]

Hello and welcome to the forum

Just confirm the Pred had been your only med all of this time? What dosage have you been on? Have you been on any type of calcium supplement whilst on this and have the docs ever arranged any tests to confirm it is not effecting your bone density? The continued bleeding indicates to me that it has not fully been keeping the tum settled so when was the last time any scopes were done to check on how things look inside?

I have been on a couple of liquid shakes previously and the one I found the nicest was Modulen - have you looked into this one yet? Another option would perhaps be enteral nutrition. We will also have further info on this in our diet and sups forum: http://www.crohnsforum.com/forumdisplay.php?f=17.

AB
xx

 

[vnct]

Hello and welcome to the forum

thanks for having me.

Just confirm the Pred had been your only med all of this time?

i've used other meds in the past, but nothing worked sufficiently.

What dosage have you been on?

up to 50 mg per day.

Have you been on any type of calcium supplement whilst on this and have the docs ever arranged any tests to confirm it is not effecting your bone density?

i often drink about a 1/2 gallon of skim milk per day. no bone density tests have been done.

The continued bleeding indicates to me that it has not fully been keeping the tum settled so when was the last time any scopes were done to check on how things look inside?

i last had a colonoscopy done about 10 years ago.

I have been on a couple of liquid shakes previously and the one I found the nicest was Modulen - have you looked into this one yet? Another option would perhaps be enteral nutrition. We will also have further info on this in our diet and sups forum:.

AB
xx

where might i purchase these items? i can't find them anywhere on the internet for purchase.

 

[David]

Hi vnct,

Wow. I'd definitely get in to have your bones evaluated and, if you are indeed planning to come off the prednisone, do it under VERY CLOSE supervision of a doctor. I say this because your adrenals must have no idea what to do at this point.

What AngryBird was referring to was Elemental or Enteral nutrition. These are clinically proven to help improve symptoms of IBD and sometimes even induce remission. We have a forum dedicated to it located here. It can be as simple as going to Walmart and buying Boost or Ensure though there are more advanced formulations out there as well. My suggestion would be to go to the doctor to discuss this, your bones, and if you do plan to come off the pred, the best way to do it.

All my best to you.

 

[vnct]

Hi vnct,

Wow. I'd definitely get in to have your bones evaluated and, if you are indeed planning to come off the prednisone, do it under VERY CLOSE supervision of a doctor. I say this because your adrenals must have no idea what to do at this point.

technically, the prednisone is cycled in such a way to avoid absolute dependency. this is done by using multiple short 'bursts' coupled with lower dosages. in other words, my body is dependent on lower dosages but not higher dosages. i only take higher dosages for short periods of time, in short 'bursts'. before dependency on the higher dosages can be developed, the higher dosages are routinely subtracted. the proper usage of 'bursts' circumvents dependency/immunity. dosages will fluctuate daily between minimum and maximum dosages. i'm dependent on minimum dosages but not maximum dosages.

having been on prednisone for so many years, my dosages are tapered daily, with daily alterations, up or down. i will even take as many as 5 or 10 'micro' dosages per day, according to need, although not exceeding a total of 50 mg per day. i wouldn't recommend this, of course, to someone who is not familiar with prednisone.

What AngryBird was referring to was Elemental or Enteral nutrition. These are clinically proven to help improve symptoms of IBD and sometimes even induce remission. We have. It can be as simple as going to Walmart and buying Boost or Ensure though there are more advanced formulations out there as well. My suggestion would be to go to the doctor to discuss this, your bones, and if you do plan to come off the pred, the best way to do it.

All my best to you.

yes, thank you. i'm aware that i can purchase the ensure or boost, but i'm trying to find the most cost efficient meal replacements available. i assume that this can only be done through the internet. thus far, however, i've only found muscle building or weight loss powders through the internet.