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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Ok, here goes nothing..


05-13-2012, 12:24 PM   #1
PaulPhoenix
 
Join Date: Jul 2011
Location: Wiltshire, England, United Kingdom
Ok, here goes nothing..

Ok, so after having a full 12 weeks of remission on just Aza, my old friend is back. Or at least I think it is. Watery, exploding D that just appeared one day. Maybe it was the stress of buying a new house or maybe it's just a bout of gastroenteritis?!?!

Anyway, I have a stock of Elemental 028, the Prof Hunter book and the desire not to have to go back on steroids for a while!!

So, I've been swapping it in over the last couple of days and today is the first where I've. It eaten anything! Still got watery D about ten times a day but the taste of the banana, orange and pineapple shakes isn't so bad.

So we'll see. I will call the hospital tomorrow and get told off for starting before they're sure it's Crohns back. Hopefully they'll put me back in touch with the Dieticians.

I will post updates as stuff happens. I'm dreading the green poo people talk about.....
05-13-2012, 01:47 PM   #2
FruitLoop
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Location: Crewe, United Kingdom
I admire your ability to do such a plan!

I have a garage full of Elemental and Modulen and every night i decide i will go solely liquid intake from "tomorrow" - never do though!

Green poo? Never had that!!

You may well be my inspiration - ive been flaring for 18 months since my last surgery and i know that giving up food would help but as i have 3 kids i am constantly around food in some way (buying it, meal planning, cooking etc) so i find it so so hard to not eat any of that!
05-14-2012, 12:29 AM   #3
PaulPhoenix
 
Join Date: Jul 2011
Location: Wiltshire, England, United Kingdom
Thanks for the reply!

I've got a similar home situation. My wife *loves* food - there's always plans for it, buying it etc. Our baby's constantly talking about it too!

Last night I sat opposite her with my banana shake and watched her eat a big Chinese. Spring rolls, chilli chicken, etc. I thought I'd hate it. Funny thing was - I didn't seem to care. Thought I would, but just didn't.

Why not just try a single day? See if you can make it through, and then go from there. It could put you in remission too, you'll save money and 18 months is a long time to be flaring!

P

Ps. Still not seen the green poo ;-)
05-16-2012, 09:33 PM   #4
Tesscorm
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Location: Ontario

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My son was diagnosed last May (at 16 years old) - his treatment was EN (being a very picky eater! he chose to ingest the formula through NG tube overnight). He did the six weeks with no food (really admire that he found the willpower to get through that!!!) and his maintenance has been 1/2 the dose, 5 nights per week. So far, it seems to have put him into 'remission' - tests (done in October) still showed some smaller patches of lingering inflammation, however, rarely any symptoms and no drugs other than Nexium. After the six weeks, he gradually returned to his regular diet (minus seeds, nuts, popcorn and fruit/veg skins).

Also, what helped him (and, this seems to vary according to the GI) was that he was allowed clear fluids - broth, jello, freezies, clear (no fibre) juice, 7-up, Ginger ale during the six week period. He took broth to have at lunch with friends and I arranged for the school to stock some freezies for him. Dinner, again broth But, at least, it was a semblance of food.

Good luck to both of you!!! I can't imagine how much willpower it takes to follow through on this diet but I certainly admire all those than can do it!!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-16-2012, 10:58 PM   #5
anyone
 
Join Date: Apr 2012
Location: Oregon
How do you guys get elemental? It was about the only thing I could tolerate in the hospital. I asked about getting some for home and they said it was too expensive. Now, I'm having a hard time eating anything and even water is making me hurt.
05-17-2012, 01:26 AM   #6
PaulPhoenix
 
Join Date: Jul 2011
Location: Wiltshire, England, United Kingdom
Anyone: in the uk you need to convince your GI to allow you to try it!

I'm still going! Breath is from hell and still lots of D but hanging in there. I was concerned because some people say it only works for small bowel. As far as I can tell it can get all flavours of Crohns into remission but those with colon involvement may relapse earlier.
05-17-2012, 08:18 AM   #7
Tesscorm
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Anyone,

We get ours from the drug store in our hospital (and the hospital's specialty food store also sells it).

You can purchase it directly from Nestle (link below) and someone also told me it is sold through Kijiji.

As far as the cost, it is fairly expensive but some insurance plans will cover it (you may need a prescription). Unfortunately, mine doesn't, however, a local medical assistance agency is covering the cost temporarily (not sure for how long but they have for a year now ).

Keep in mind that GIs in the U.S. don't seem to use EN as a treatment as commonly as it is used in other countries - not sure if it's an issue of patient compliancy, the cost, etc.??? You may have to push your GI a bit if you need a prescription to have the cost covered by insurance.

http://www.nestlenutritionstore.com/

Good luck
05-17-2012, 08:21 AM   #8
Tesscorm
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Paul - just FYI, when my son did the exclusive EN, he had D for the entire time (no urgency issues, just the D) but we were told to expect this by our dietitien. Apparently, liquid in = liquid out. However, although we were told this would happen, I have heard of many others who did not have this reaction to the EN diet.

05-17-2012, 01:57 PM   #9
PaulPhoenix
 
Join Date: Jul 2011
Location: Wiltshire, England, United Kingdom
Tesscorm: thanks for the info. I'll see what my dietician makes of it next week. I did read somewhere that not diluting enough or drinking enough water can suck water into the gut and cause it too. I was told to drink plenty and, to be honest, haven't been drinking much on top of the drinks - there's soo much liquid!!!
05-17-2012, 02:18 PM   #10
Tesscorm
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Hey Paul,

My son was taking in 2000 ml per night (3000 calories) during the exclusive period; his maintenance now is 1000 ml/night, 5 nights per week. Just as a reference point for you, he is 5'10" and was just under 130lbs when he started - reached and stabilized at 155-160 lbs.

As for other liquids, he did have lots of other fluids during the day as he was allowed clear fluids... but, not sure at all how 'much' he actually took in during the day.

Not sure how you feel about this but, learning and using the NG tube has been very easy for my son (takes only seconds to do) and, as it's done overnight, making sure he got enough of the shakes during the day was never a problem.

Sending you lots of luck!
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