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Hello

 

Has any one with crohns and a jpouch been able to keep off long term drugs? I've been strict scd (that's specific carbohydrate diet) for 1 year and I'm weaning off Budesonide (steroid) after 9 months on it and I feel awful. I know I need something other than diet, on a holistic approach, but don't know know how to go about doing that on Medicade. I take

Vit D supplements. My Dr is concerned that won't be able to control my condition without Remicade and end up with an ostomy again. . I am concerned about being on Remicade for the rest of my life. Am I deluding myself? I have a hard time with SCD  because my poo is never formed with no colon  so I can't pinpoint problematic foods easily. But my gut is acting up and I'm concerned.

Can anyone give me advice on experience? Anything?

Thanks

~Amanda

 

*UC- 2/2011
*perforation and colectomy- 7/2011
*j pouch- 5/2013
*crohns- 2/2014

*SCD- 3/10/14

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Is the scd diet helping at all? I think I read about a poucher on here with chrons who is currently doing the paleo diet med free. I think it really just comes to to for whatever reason some people control uc or chrons through diet, some need drugs and others need the biologics or surgery and you never really know until you explore all the options.

 

I don't have chrons but I eat paleo with rice as I feel it's more pouch friendly personally And stools are usually mostly formed.

I think the Paleo diet is the way to go.  It's not an accident that studies show IBD rates are highest in the developed countries that eat a diet high in processed foods, and IBD rates are lowest in the countries that essentially eat a diet of whole foods.  There are a lot of similarities between therapeutic diets like the Paleo, Atkins, South Beach, SCD, FODMAP and UMASS IBD diet, in that they all reduce certain carbs and sugars, but Paleo emphasizes elimination of processed foods on the premise that processed foods are crap.  And the premise is correct.  That being said, I have found that diets like these have helped my condition, noticeably on scope results, but are NOT curative, and must be supplemented with IBD meds (ideally in lower amounts than if you were eating indiscriminately).

 

We here in the USA have allowed large corporations, like the newly merged "Kraft Heinz", to bombard us with food products filled with chemicals and preservatives and fillers.  Next time you go shopping at the local supermarket look at the ingredients of all the items before you throw them in the shopping carriage.  They are filled with assorted junk and crap.  Especially diet sodas- people drink them on the notion that they are healthy but nothing could be further from the truth.  These large companies have brainwashed much of the American public with clever marketing of their products, but the bottom line is that they are selling crap and you have a right, and I would posit an obligation, to your body in general and your bowels in particular, to say NO to the crap.  

Last edited by CTBarrister

These diets may be worth a try, on the off chance they will help you, but most folks with Crohn's Disease get no benefit from them, and they are a significant effort. Crohn's varies a lot - one person can suffer continuously while another can go for decades with no problems at all. It seems like you're treating stool consistency as an important indicator of how you're doing, but I'd recommend ignoring stool consistency unless it's extreme. As you point out, a *healthy* J-pouch has a significant effect on stool consistency (it will generally be a bit loose). If I were in your position and feeling crappy I'd try the Remicade (heck, I did try Remicade years ago). If I were in your position and feeling okay, I'd let it be.

 

Significant carb reduction does help some (not all!) people with pouchitis issues, but CD is rather different from pouchitis. I have some issues with the fabricated beliefs about paleo and SCD, but both tend to reduce carbs and (perhaps as a result) help some people. I like the science behind a low FODMAPs diet better, but there's no reason to believe that will help CD much, either.

 

It's almost certainly true that Americans tend to eat too much processed food, but it's also unhelpful to lump all such processing together as though it's the same. Some processing is quite valuable, and some is pretty questionable. Furthermore, a J-pouch isn't exactly a natural environment, so some J-pouchers choose to process their foods because it seems to help them. A juicer or Vitamix isn't exactly paleolithic.

Last edited by Scott F

I think that believing that you can control autoimmune disease by diet alone is setting yourself up for failure. I see no harm in experimenting withvarious diet approaches to improve function and even reduce inflammation. But, the nature of IBD is unpredictable remission and relapse. When you put all your faith in a diet, you are likely to assume you did something wrong, or "not strict enough," instead of knowing that relapse happens no matter how good you are in your diet maintenance.

 

I see no harm in trying to cull the best of both worlds, diet and medical management. Personally, I fear untreated IBD more than any side effect of a drug that yet to happen. But, I also agree that constant use of antibiotics can lead to disaster if you don't stay alert.

 

Jan

Thanks for all your responses everyone.

 

The trouble is not so much the diet itself. Through it, I have discovered many problematic foods. I like to eat scd because I believe in scd. And I feel better doing so. I don't run for the bathroom and strain all day long. I can go a couple hours before I need to poo most days, without straining unless I'm flaring. I do poop 10+times/day and many of those at night no matter what I do. I haven't eaten hardly any processed foods since becoming ill, and none in over a year now. Before I was loosely following scd and I only progressed from UC to CD.

 

I only felt something was wrong inside 3-4 months before I was diagnosed UC. After that it was just over 4 months before my colon perforated. Now I still feel like something is not right inside, I've hit a wall of frustrations thinking about the diet and having it not work miracles, and I do not want to jump on a medicine that I have to take forever. After all, I've felt way worse, how necessary is it? My GI says he'll drop me as a patient if I don't get on meds- that he's "enabling" me to get sick. As CT mentioned, diet doesn't cure the disease it controls it, so it is said. 

I feel like an infusion would mask my problems; that I won't feel what foods are causing problems and damaging my gut. Now, when I eat and have D, I know what food causes that reaction (as long as i'm keeping track with a food journal, which is hard to do as a busy single mom.) Right now it seems my guts are acting up- feeling uneasy, gurgling sounds, and overall lack of energy, real bad.  I've also noted that coffee makes my tummy uneasy (was a daily drinker for years and years and weaning now.) and also my stomach and hormones rage with pms, something that is new as of lately. I'm only 32. My son is 5.

 

I was in severe crisis in 2011, almost lost my life to this mess, and recovering from the blow in 2012 all the way up to currently. I feel my brain power dwindling as I struggle with this daily battle. My heart aches reading this blog, feeling all your pain and frustrations as I can relate on a level that is other worldly. What doesn't kill us makes us stronger right! Only feeling so weak that I can't catch up to my expectations .

 

Thank you all for living and sharing. Any commentary is welcomed. Keep on truckin.

-Amanda

 
*UC- 2/2011
*perforation and colectomy- 7/2011
*j pouch- 5/2013
*crohns- 2/2014

*SCD- 3/10/14

 

 

 

Thank you, Jan. Voice of reason I can be so damn stubborn. I am on a chat group for diet and they have other means of medicating, like LDN. My doc won't write me a script as he's not confident in its ability to help with my disease. The problem with LDN and SCD is there's not enough studies on them to give them any credit in the western world of pill popping big pharma and surgeries.

Who can you trust ??

 

-Amanda

*UC- 2/2011

*perforation and colectomy- 7/2011
*j pouch- 5/2013
*crohns- 2/2014

*SCD- 3/10/14

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