Crohn's/Ulcerative colitis question

[kel]

How about instead of listening to Dr. Notarealdoctor up there, find a well-respected gastro and get their opinion?

What opinion did I ask for? I have a GI, thank you (and he encourages me to always keep lifting).

[Zach Passman]

I was diagnosed w/Crohn's in 1990, at age 14. None (none) of the doctors I've had since then have ever (ever) given thoughtful consideration to nutrition's role in inflammation of the bowel. Review of my diet was always "You're not eating anything spicy or fried, right?"
After reading umpteen blogs and online resources--most not recognized as legitimate sources of medical information--I stopped eating wheat and other foods containing gluten. Low and behold, my symptoms improved hugely.
I no longer take mercaptopurine, an immunomodulator I used for 17 years. It was a wonderful drug to help me reduce and then eliminate prednisone, but it is also a potent and toxic medication.
Point of this story: Give your nutrition a really hard look. After never believing I could be "healthy," for many years now I've been in pretty good shape. Despite multiple highly-regarded GI and PCP docs' best attempts at improving my disease.
I managed a respectable string of powerlifting totals for 8 years with active disease--so there is no reason that you should be unable to make yourself bigger and stronger, despite the inherent challenges in doing so while sick. Assuming you can stay out of the hospital, you can help yourself to get better.
Please feel free to email me if you are interested in talking about this in greater detail.
zpassman at yahoo dot com

[sunetdanne]

How about instead of listening to Dr. Notarealdoctor up there, find a well-respected gastro and get their opinion?

So this is what I get for being helpful.

Apparently it seems that the view of healthy care in the US and in Europe is not the same.

Firstly I have done all the bowel investigations:

Colonoscopy + biopsy

Endoscope + biopsy


The doctors could not explain why I have IBS and all the investigations came back “negative” neither could tey explain my symptoms neither could they explain my wife’s UC.

One highly educated bowel specialist told me the following. "We doctors can only treat the body like a bike, we can see if something is missing and try to fix it with a reference to what we think is correct, how the bike feels to ride this is something out of our hands. He also told me that just because we can’t prove what causes IBS/UC/Chrons does not mean that you can’t evaluate the influence of your diet. We recommend this to people when they come back to a moderate degree of sickness level.

The reason why most doctors tell that there is no link between food and UC/Chrons is because "the disease" is in relapse. So they state that you are just feeling better since your disease is now in a "calmer mood".

Don’t forget the following. When you take salazoporin, asacol, remicade etc. you are fighting your own body. Why do you think you get worse eventually and need to increase the amount of drugs that you use? Relapse = F [drugs used* time of use]

You are fighting with your own body instead of letting it heal itself. You should find out what it is that is making damage to your systems.

Tell me the number of persons that has not removed there bowels after years of drug use.


PS: I am not a doctor I’m "just" an M.Sc M.E

[DV]

So this is what I get for being helpful.

Thing is, though, these diseases are incredibly individual in their manifestation, as you've noticed yourself. So while boiled rice water and stuff might work for you, it seems like a bunch of hippie-crap to me. You recommended oats (albeit a specific kind) - I react to oats. I chug milk like there is no tomorrow with great results - alot of people find dairy to be the worst thing imaginable for their condition.

Once again the OP needs to get a GREAT (as in the best you can possibly find) doc specializing in this stuff, then research (guided by the doc at first, if he is any good), and finally use trial and error with nutrition, training, restitution, stress and so on and so forth. And take Zach's (and other experienced guys) example and keep on lifting and eating. It'll only improve your health (as it does in everyone else).

Good luck. Having an IBS sucks, hopefully yours isnt one of the bad cases.

[Bahadur]

I have been having IBS as long as I remember and my wife "got" UC for 4 years ago, my IBS became worse last year but is fine now when I am off milk and using UltraClear Sustain,

And by the way skip the glutamine preps put the direct into the trash can they will just make you bowl a lot worse.

Best regards
Daniel

While I'm not a GI-doc, I am a physician and just want to point out that there maybe some confusion.

IBS as an abbreviation can be used to signify 2 separate conditions in the lay-press or amongst lay-folk:
Irritable Bowel Syndrome
or
Inflammatory Bowel Sydrome (or really IBD, as its abbreviated by clinicians as its referring to Inflammatory Bowel Disease such as Crohn's or UC).

The 2 conditions are miles apart.

[sunetdanne]

Thing is, though, these diseases are incredibly individual in their manifestation, as you've noticed yourself. So while boiled rice water and stuff might work for you, it seems like a bunch of hippie-crap to me. You recommended oats (albeit a specific kind) - I react to oats. I chug milk like there is no tomorrow with great results - alot of people find dairy to be the worst thing imaginable for their condition.

Once again the OP needs to get a GREAT (as in the best you can possibly find) doc specializing in this stuff, then research (guided by the doc at first, if he is any good), and finally use trial and error with nutrition, training, restitution, stress and so on and so forth. And take Zach's (and other experienced guys) example and keep on lifting and eating. It'll only improve your health (as it does in everyone else).

Good luck. Having an IBS sucks, hopefully yours isnt one of the bad cases.

Hi rice soup is no "hippy crap" its a diet that gives your bowel a rest from heavy/bad food.

IBS( Yes I have Irritable Bowel Syndrome).

I started to have IBS problem when I was 10 years. We(Family+Doc) assumed that it was milk allergy(tests came back negative, but bowel became better without milk so my doctor told me to keep that diet).

So my IBS was bad when I was smaller. Average for about 10 years(could use lactose free products even if the test show that I am not allergic to lactose) and now last year blossomed up and was really bad last year. (I had to cut back on everything, no milk products, no grains etc).

Currently I am on UltraClear Sustain and off milk and drink the rice soup when I get any IBS sign(If I have been sloppy with the diet)

Regards
Daniel

[pfw]

Diagnosed with Crohn's in 2003. Ate the pills for years until 2009 when I had various epiphanies, leading me to attempt dietary intervention. Still in remission despite not taking a pill since November 2009. For disease cred, I as 6'3" and 137lbs when diagnosed and the diagnosis was confirmed (multiple times) by biopsy.

Mainstream gastros deny the diet connection in IBS and IBD because they lack a proven model for how diet might influence the disease, and because it's easier to push pills than any other treatment modality. This leads to an unfortunate feedback loop in which they tell all their patients that diet is largely irrelevant, thus creating a huge population of people on drugs who attempt no dietary intervention. The result, of course, is that there is never any significantly large clinical successes with diet, so mainstream interest in a diet related hypothesis when it comes to Crohn's, UC or run of the mill IBS remains null. You can draw parallels to any disputed field in medicine: there is a mainstream position which by virtue of it's wide acceptance crowds out alternative hypotheses. See saturated fat -> heart disease for an analog. It doesn't help that there is no accepted explanation for how Crohn's/UC start; until a strong root cause model arises, mainstream gastros are going to remain pill-pushers and surgeons.

This is not to say that there are no diet hypotheses, merely that we're still waiting on the Kuhnian paradigm shift that allows them to be considered seriously. For now, it's far easier to get your average American to eat a bunch of horse-pills every day than it is to get them to reliably intervene in their own diet. I've had three gastros now: the first two would barely look at me and would just ask if I was taking whatever the pill of the day was, the last (hilariously) claimed that the pills I was taking hadn't been proven to be effective in treating Crohn's anyway and if diet worked, hell, give it a shot. He's a good gastro. The other two sucked. I might as well just have forged prescriptions.

So anyway, you've got two options if you want to do something physically stressful like lifting heavy weights:

1) Take the pills, hope they work, eat whatever. You might be one of the lucky ones who this works for. You might not. You may not find out until you get a fun call from your gastro after a colonscopy claiming that you have a significant inflammatory polyp and might need a bowel resection. This event may inspire you to try something else, like it did for me, or you can opt for the shit-bag on your hip. Call this gamble #1

2) You can do the reading on the various diet hypotheses out there and try them. The one I tried is based on the work of Alan Ebringer, a researcher in the UK who discovered a possible link between the action of particular bacteria and Crohn's. There are many papers out there if you google. The idea is that you avoid eating starch, as some of it can escape into the distal small bowel or colon for fermentation, leading to bacterial proteins which mimic intestinal collagen, thus triggering the auto-immune response which typifies Crohn's. A more specific approach would be something based on FODMAPs, which boils down to "avoid hard to digest but fermentable carbs". Avoiding gluten and other typical colon irritants can help, both by avoiding the primary irritation and the increased gut permeability. In the end the diet hypotheses backed by some science (not bullshit like Maker's Diet or whatever) typically revolve around managing gut permeability and bacterial action. And it takes time. Six months is the usual minimum period before you get to a point where you feel great. Call this gamble #2

If you go with #1 you have the benefit of being able to, at least in theory, eat whatever, which obviously helps with the program. The con is that it's not actually treating your disease, merely managing it. If you go with #2, you have the benefit of potentially getting the disease under actual control (avoiding the root cause), preventing stress flares and actually healing your gut. The downside is that you need to be disciplined in diet, actually do your own research and commit to a long term lifestyle change. You can still do the program, but it will be harder. From my adventures around the internet over the past year and a half, it seems that there are a lot of people successfully managing their disease with diet, and a lot of people failing to stick to good diets and thus failing to manage their disease. Like anything else diet related, compliance is king.

All of this is to say that, at least from my perspective, the key to training with Crohn's is to figure out the Crohn's then train. If you can get your Crohn's into remission, you have removed a major impediment to your training, akin to healing a broken leg given the importance of eating/absorbing food to a program. Training with active or poorly managed Crohn's is like training with an injury: you might be able to swing it but you'll probably just screw yourself in the long term.

[brettd]

i never said anything in this thread about lifestlye because the OP didn't really ask and i was assuming he knew the ins and outs of his disease and he very well may. but since we're down this road here's some unsolicited input.

every person is different. i had to look at what i was eating and just regular life circumstances in general and heres what i got

i have two main triggers for colitis.

stress and diet(mainly milk and grains). everytime i get a gallon of milk with high hopes, about three days into it i start to get symptoms but for some reason ice cream is fine. i have to manage the shit out of stress. docs want me on anti anxiety medication to keep me from flaring but i dont want it. so i train and i do yoga.(yes yoga fuck you it works)

medication does not work for me. every one we have tried the side effects cause flares. it just is but im cool with that because managing my stress and taking l glutamine (yes ibs guy l glutamine) to keep my colon healthy and eating mostly paleo and cook with coconut oil and mix protien shakes with coconut milk, drink aloe vera juice works nice too etc.. and a ton of other things. these all help. but bottom line is everyone is different. just find out what helps you. and to agree with someone above ibs is nowhere near chrons/colitis. its just not the same as becoming anemic from bleeding out your ass or being on dilauded to manage pain so you can sleep because youve been up for 3 days in agony or living in fear of losing your colon/small intestine

this is all just to keep from flaring. IF i do flare the only thing that will stop it now is prednizone and i hate that shit so i take above steps to try and insure it doesnt happen

[sunetdanne]

i managing my stress and taking l glutamine (yes ibs guy l glutamine), bottom line is everyone is different. just find out what helps you. and to agree with someone above ibs is nowhere near chrons/colitis. its just not the same as becoming anemic from bleeding out your ass or being on dilauded to manage pain so you can sleep because youve been up for 3 days in agony or living in fear of losing your colon/small intestine

Glad that glutamine works for you, it sent my wife to the ER, she had to take remicade after that. My IBS and my Wife’s UC are not so different (stomach pain, and sleeping at the toilet chair). Except from the bleeding bowel that I never suffered from. I don’t call myself an expert. But I have experience from both IBS and IBD. My wife recovered when she changed her diet that was how I found out the link between food and bowel problems.