Trying EN for the Crohns...and now got C...and good news too :)

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Illini
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Date Joined Dec 2007
Total Posts : 298
   Posted 2/12/2008 10:10 PM (GMT -7)   
As a bit of background, I was dx with Crohn's in the TI in January. D has not been an issue. I eat a high fiber diet plus I've been dependent on fiber supplements (Fiber Choice) for the last 8 months or so to stay "regular."
 
After getting permission from the doc and talking with a nutritionist, I started EN. The nutritionist suggested I go on a diet with fiber, so I chose Nutren 1.5 with Fiber. I eased into it over a few days and have been having that and water exclusively since Saturday. I'm not finding it hard, and temptation to cheat is not an issue, I've actually gone out to lunch and dinner with my husband and friends and brought my can along. cool
 
BM's were normal Saturday and Sunday. I'm now really constipated--totally blocked up, it's never been this bad. I bought Dulcolax. I'm freaking out a little because this has never happened to me before. I really need to get this under control... I want to make the EN work... and I am traveling in 10 days.
 
I stopped taking my fiber pills once I got on the diet. So now I guess I need to go back on them? Or should I switch formulas--maybe to one without fiber in case that's the problem? I'm confused because I never thought that constipation would be an issue on a liquid diet...from what I read the opposite would happen (D), which is part of why I stopped taking the pills.
 
I also bought flax oil and I'm going to try mixing it with the formula, I read that it could help with C, and the Omega-3 shouldn't hurt. Any other advice? Thanks all.


 

Post Edited (Illini) : 2/13/2008 11:52:21 AM (GMT-7)


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/13/2008 3:28 AM (GMT -7)   
Hi, You probable have to much fiber in your diet. My Gi doctor told me to stay away from to much fiber. and also to drink alot of water.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 2/13/2008 9:10 AM (GMT -7)   

My GI told me something *similar* to Teddybearweiser's doc, but different enough to be worth stating... He said to stay away from *INsoluble* fiber. Like whole grains. But that *Soluble* fiber was a great help to anyone with IBS, CD, or UC. Psyllium, and cellulose are soluble fibers. If you put it in a glass with water, and it turns into a gel in a few minutes, it's soluble. It has also helped me with my CD more than any drug (except yucky prednisone) so far.

But INsoluble fiber is the devil.


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/13/2008 9:30 AM (GMT -7)   
Thank you for clarifying that. I need to check the formula, I think it has soluble and insoluble, but the Fiber Choice pills are Inulin--soluble. I'm wondering if insufficient water is part of it, although I do drink a lot I had not tried diluting the stuff so this morning I did a 1:1 dilution in cold water. It made it easier to drink too, so I'll keep with it. What psyllium product do you use--metamucil? Thanks!


 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/13/2008 9:48 AM (GMT -7)   
What is EN?

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 2/13/2008 10:09 AM (GMT -7)   
Yup, just plain old orange Metamucil. On bad days, six heaping tablespoons. Good days, three. Dosage is assuming the sugar sweetened variety. If you have the sugar free, you'd need to cut it in half for the same amount of psyllium.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/13/2008 11:48 AM (GMT -7)   

Crohnsdaddy... Do you take the metamucil before/after meals or just throughout the day? I've been taking the fiber pills with meals but I wasn't sure it's that's correct.

 
EN is enteral nutrition, a.k.a. nutrition from a can  :-) Writer, on this forum, is an expert. For now I'm trying to stay drug-free to give my liver a break.
 
I read about EN in journal articles written by doctors from Australia, UK/Europe, and Japan . It can induce remission (although it's not as effective as steriods) and mucosal healing. Most of the data is for elemental/predigested formulas but I'm trying a polymeric formula, Nutren from Nestle, first since the cost is a lot lower.  Why they work isn't well understood, but these formulas are able to decrease intestinal permeability similar to some of the new classes of drugs (e.g. Teduglutide, hydroxylase inhibitors) currently under investigation for Crohn's.
 
My plan is to do this exclusively for 3 months, but I need to find a way to stay "regular" if it's going to work out. This of course is barring no change in how I feel... Right now my Crohn's symptoms are mild and my bloodwork is improving. The one GI doc I have seen so far did not object too much to my trying this strategy, though he had never heard of it and pooh-poohed it entirely. A few on HW have done this but there are more on the Dragonpack forum.
 
Good news! Today I heard back about my blood tests--last was in December when I spiked fever. ESR is down from 57 to 38, and CRP is down to 0.7 from 19. My red blood cells are still small, not sure what that means. Folate, B12, and iron normal, and liver enzymes OK  yeah
 
Since I don't really have much in terms of symptoms, the GI doc said the only way to monitor me is by testing CRP, which apparently is now normal. I'm not sure I believe it--I don't trust the health center 100% since they have messed up before and given me someone else's results. I plan on re-testing in one or two months, depending on how things go.

 


 

Post Edited (Illini) : 2/13/2008 11:51:34 AM (GMT-7)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/13/2008 12:13 PM (GMT -7)   
I've been having great success with taking Prodiem (Canada) it's similar to metamucil...I take one every night before bed with alot of water and have had nothing but benefits...my GI told me to take it daily for the rest of my life.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 2/13/2008 12:52 PM (GMT -7)   
Illini,
 
Yah for the better bloodwork! Regarding being blocked up, one very common cause of constipation in people who are using enteral nutrition is not drinking enough liquids. Many people need two or three glasses of water a day (or more) in addition to the liquid in the formula itself. So you might just try drinking a little more water before changing anything else.
 
Hope things improve quickly.

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 2/13/2008 12:59 PM (GMT -7)   
I use the powdered stuff. Never have had very good results with the pill variety. I dissolve three heaping tablespoons of Metamucil in about 8 ounces of water, stir it up, toss it back, then follow it with a 12 ounce glass of cold water. Once or twice per day.

One thing to remember about EN diets... they are very low residue. Definition of residue: poop. your body isn't processing as much mass, so you won't poop nearly as much. Just because you don't poop everyday on an EN diet doesn't mean anything is wrong at all. Now if you actually *feel* constipated, yeah, something's up that needs to be fixed. But it is perfectly normal to go several days without pooping on an EN diet. Although taking Metamucil daily will certainly change that. : )

Edit: i have read pro and con about taking soluble fiber supplements on an EN diet. The cons say that you are attempting to "rest" your GI tract. That means not making it process alot of stuff. By tossing soluble fiber at it, you are making it process a bunch of undigestible mass. Kinda moots the point of the EN diet. However, the pros say that since it is just soluble fiber, it's ok. My take: don't take the soluble fiber on an EN diet unless you actually feel constipated and need relief. But again, that's just *my opinion*.

Another edit: Soluble fiber supplements shouldn't be taken at the same time as any medications or vitamins. It has a tendency to interfere with the absorption of alot of different things. That being the case, if I were on an EN diet, I wouldn't down the fiber at the same time as a liquid meal. It may very well interfere with proper absorption of the nutrients in the drink. I'd save the Metamucil as a between meal "snack". : )

 


Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.

Post Edited (CrohnsDaddy) : 2/13/2008 1:13:57 PM (GMT-7)


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/13/2008 1:30 PM (GMT -7)   
Thanks all!
 
I would say this was probably the first time in my life that I was really, truly constipated... Ouch. 
 
I'm torn on whether I just need more fiber, or if the fiber in the formula is the problem, and I should just switch to the Nutren 1.5 without it. Should I? I'm guessing the smarter thing is to use the one without fiber and take Metamucil if needed.
 
I'm going down to Miami for a couple days to see my Grandfather again and I need to order something ASAP and have it sent there ...from what happened yesterday, I'm a little hesitant to order more of what I'm currently on.
 
I'll first try diluting the formula in water and drinking more water during the day. Now that I'm totally "empty" (took 2 pills per the instructions; probably only needed 1) it's like starting from scratch tongue We'll see what happens.


 

Post Edited (Illini) : 2/13/2008 1:33:48 PM (GMT-7)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/13/2008 8:37 PM (GMT -7)   
Illini said...
EN is enteral nutrition, a.k.a. nutrition from a can. Writer, on this forum, is an expert. For now I'm trying to stay drug-free to give my liver a break.

I read about EN in journal articles written by doctors from Australia, UK/Europe, and Japan . It can induce remission (although it's not as effective as steriods) and mucosal healing. Most of the data is for elemental/predigested formulas but I'm trying a polymeric formula, Nutren from Nestle, first since the cost is a lot lower. Why they work isn't well understood, but these formulas are able to decrease intestinal permeability similar to some of the new classes of drugs (e.g. Teduglutide, hydroxylase inhibitors) currently under investigation for Crohn's.


So this is news to me. I thought EN was just as effective in inducing remission as prednisone. Writer? Also, are results different for adults than kids?

Congrats Illini! Glad to hear everything seems to be improving! Have a great trip!
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 2/14/2008 6:55 AM (GMT -7)   
Illini,

Hope you find your grandfather feeling a bit stronger. I'm sure he will appreciate your visit.

EMom,

Yes, small studies in adults found that enteral nutrition and steroids were equal, but two considerably larger studies comparing enteral nutrition with a combination of sulfasalazine and steroids found that the regimen that included steroids was more effective (not that EN was ineffective, just didn't get as many people into remission as steroids). Is it really less effective in adults than in kids? Not really clear. The big adult studies were larger than any of those that compared steroids and enteral nutrition in kids, so probably offer a better idea of what happens when you try EN in an unselected population -- i.e., including not just those likely to be good responders such as recent-onset disease and ileal disease, but also those who might respond less well, such as those with Crohn's colitis or perianal disease.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/14/2008 7:17 AM (GMT -7)   
thanks, Writer!
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/15/2008 6:01 PM (GMT -7)   
I looked carefully at the Nutren can and it contains both soluble and insoluble fiber, so I decided I'm going to buy the formula without it. When I considered it, I already drink a lot of water (probably 2-3 liters a day), so I don't think even more is going to do much. My Mom already bought it in Miami so I'm set there, and I'm going to order more to send home tonight.
 
Unfortunately things with my grandfather are complicated. He was at a rehab facility receiving physical therapy 6 days a week. He did not fully regain his ability to communicate, and lately it seemed that he's been having problems with pain but he can't tell you where due to the communication problem (=torture that no one should go through). Finally yesterday he was taken to the ER, and essentially, the pain (probably mild--tylenol controlled it) triggers severe anxiety attacks. They did a CT while he was there that showed the brain lesions did shrink some but his mental state is not good right now and he barely eats anything. My family is in the process of arranging 24-hour home care.
 
My grandfather is/was "the" father figure in my life, and the leader of my relatively small family, so this  has been tough. While I'm there my aunt will by flying in as well. She plans on flying out every other weekend, but I'm hoping for one weekend a month with my work schedule and depending on how things progress.


 

Post Edited (Illini) : 2/15/2008 6:04:12 PM (GMT-7)

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