Diet frustrations

I love NCOT...when diet posts appear, she appears and brings the funny.

Mmm pie :3

" I do know that it takes different amount of time and usually alot of tweaking for it to work for most people."

It took me 8 months and tons of diet tweaking before I began to feel better, so I agree,

The actions we should all take should be focused on making us well. If diet is causing you stress and hurting not helping, it makes perfect sense to change the diet (including stopping SCD for example).
However I have to admit that If you can deal with it, of course it is more healthy to eat natural food. I just wish it was not so tough to do and that everyone us could do it
d

It's such a frustrating journey sometimes XD

The theroy of SCD is that it starves out the bad bugs and replaces the bad with good. That is why it takes so long and why it is often 2 steps forward one back. The weak ones die and starve and the stronger ones when threatened put up there signs "Hell no We won't go!" We call that the 30, 60, 90 and 1 year flare. It is a pain but 100% normal for the DIet.

It is also the reason for "fanatical complaiance". Giving the bad bugs even a few grains of stuff they thrive on sets healing back for as much as weeks.

I am not a scientist however I can tell you what I just said is correct from a SCD perspective. I do not know enough to defend or debate the above.

I was so sick of being sick, if they said eat "xxx" on a stick I would have tried it. I am so glad that someone told me what to eat to heal, and it worked for me,

I have been doing this for well over 2 years now and see doing it with fanatical compliance at least until this DD is cured. So for at least the next couple of weeks!

Dave

"taking a digestive enzyme to aid with digesting"
I know some folks who take these and they say it helps. In fact I am not sure I have heard of anyone where it does nto help at least a bit

"maybe a course of antibiotics tailored to those bugs could be taken."
If I am not mistaken there is a doc in Australia that was on the team that developed the protocol for ulcers (won a nobel prize) that is now working on Crohn's and his approach is antibiotics

"I'm no expert, nor a scientist, yet some of the things about the SCD do seem dubious"
I am not sure if you can relate to this, but I really do not care about the science. I am not a scientist also. If I wanted to be I would have studied it. It really does not interest me.
I know most do not feel this way but I am the kind of person where I just want someone to tell me what to eat to heal me. I decided I was going to try diet. I read all the books and for some reason decided SCD. Then I did it 100%. Once I decided I stopped thinking about the science and just worried about being compliant. Not sure if it even makes sense, but that is what I did.

"with SCD taking 8 months for you to work in the first place - you wouldn't want to rock the boat in any way."

You understand me 100%. The thought of going back to the hell of being sick everyday scares me straight! Some bread or what ever does not even tempt me if I think of being sick. I think I was like an addict. I hit bottom and would do anything to get out of it.
Dave

Oh Man, I can relate to this diet stress. To the point that my Doc told me to stay away from dieticians! So... diet may help, but stress is a main factor. Diet for stress (passion fruit?)?
WZ and NCOT, let's start a association of diet orfans.

For the first time in my life I'm considering a long medical licence to try to manage stress and make some life adjustments (on my responsabilities).

But I'm completely afraid to eat without severe restrictions...
So... more stress and internal conflicts.

Dave - I really admire you. Maybe, one day I'm going to follow your example. 8 months!

I've been in remission since 2004. (That doesn't mean that I don't have horrible symptoms, every single day--but it turns out that those are the permanent results of removal of my gallbladder, a foot of diseased terminal ileum, my ileocecal valve, and my appendix.) I owe a great deal of that to luck and medication (6MP in my case). But some of it may be that I've listened to my body, tuned out lots of contradictory "experts", and crafted my own diet, based on what felt good to me. I suggest that you do the same thing. Trust yourself to make your own choices, choices that work for you.

Since my diagnosis, I've worked hard to avoid those things that can irritate your digestive tract and encourage inflammation: no nuts, no seeds (or as few as I can manage--it's hard to avoid them altogether), no popcorn, no corn kernels, no fresh fruit without peeling it first, no alcohol, very little caffeine, few whole grains, not many raw veggies or fruits (despite occasional desperate cravings and binges--which always make me feel truly awful in the morning). I've continued my pre-CD tradition of not eating red meat or poultry (except once a year, when I sample the Thanksgiving turkey). I don't seem to be lactose intolerant, so I eat dairy, which seems to settle my stomach a little, as do carbohydrates. People will insist that you should avoid sugar--but I sometimes find that a small cookie or muffin also helps to settle my stomach, give me a little energy, and make me feel better. And yes, I've gotten through a few really rough patches with vanilla Ensure, too.

So tune everybody out, and give yourself permission to make your own decisions about what works for you. Diet is only one factor in trying to control this disease. There's also hereditary, environment, stressors and pressures of all kinds, meds, the quality of available medical care, and just plain luck. Unless you're binge-drinking or deliberately stuffing yourself with things that you know create pain and discomfort, any careful decisions that you make about what you eat will be the right ones for you.

I have played back and forth with my diet..In 2004 and for several years, I was such a mess that liquids & baby food were a main stable of my diet..I began to eat normally after predisone with a huge weight gain and bad ibs like symtoms so I went gluten free..I read on scd..It looked very restrictive, and I did not want to venture into making yoghurt..so I recently went into a flare, and I decided to get look at diet more seriously..My bowels are not badly inflammed to the point where I am baby food and liquid bound..I pray to God I do not get to that point ever again..I have all the extras flaring with bad ibs type symptoms..I saw a natural dietician which my husband objected to! I am trying to eat mostly fruit, veggies and upped my liquids as a start..I do miss being able to eat in my definition "normal"..

I still feel like, with me, it's more how much I eat than what I eat - although what I eat isn't meaningless, it's hard to think of any foods which blatantly obviously bother me head and shoulders above other foods. I play it safe with a few things: crunchy semi-raw vegetables, pulses, anything that's more than mildly spicy - and so on. But caffeine, whole grains, berries, etc. all seem okay with me.

I suffer more the longer food hangs about in my intestines. Pain and borborygmi start to build up. Am sure that's due to incomplete digestion of some foods, plus having a stricture doesn't help. I do get partial obstructions from time to time, or what feels like them at any rate. But no full obstructions since the last time I was in hospital.

@ivy - (if you see this >_>). How long did you have to abstain from wheat for to decide it was responsible for much of your bloating?