Question

I was diagnosed with crohns disease 21 years ago. During this time I have been able to manage my condition fairly well. I have recently had a flair up that hospitalized me for a week and put me back on prednisone.

I am trying to avoid the maintance medications and control things with diet. I'm interested to know more about wheat and gluten intollerances.

Can anyone recommend a good resource for this that doesn't involve outlandish "cure" claims?

I have been in remission for over 6 years without medication and I'm hoping that I will be able to do it again. I respond very quickly to steroids which is good. I know that at some point I may become resistant to them and need other drugs to help maintain a remission. Until that happens, I will continue to control it without drugs.

I limit the amount of wheat I eat now simply because I don't feel well when I eat alot of it. I stick to fresh fruit and veg and lean protein. Yogurt is my friend :)

I was on Sulfazine for a period of time back in the 90's and it made me much worse. For some reason I can't tolerate those types of meds. (They come out the same way they go in) I do take Calcium with vit D and flax seed oil.

Thank you for your comments, I appreciate the feedback.

I have no illusions that this disease is controllable 100% of the time. It is such an "individual" condition that it seems everyone learns what works for them. My Gastro follows me very closely and I go for regular checkups and have a colonoscopy every 18 months or so.

My younger brother has it as well and we by no means can eat the same things. I find stress is a huge trigger for me. I believe that's what brought on this latest flair. Things are back under control now and hopefully, I'll be able to maintain this for another few years. I realize that most of what happens is out of our control, I just do the best I can and make sure, with the help of my Dr. that nothing serious develops or sneaks up on me.

I have tried several of the 5-ASA's but I have a terrible reaction to all of them. I will be off the steroids soon and am keeping my fingers crossed :)

Sorry you're in another flare up and had to be hospitalized.

There are other medications besides 5-asas. Maybe a quick course of antibiotics will help too, or if the flare is not under control in a few weeks, you might want to look at adding in a med like azathioprine.

The main issue is, if you have inflammation, you'll need to get it under control, or your intestines will become damaged and scarred, which cause a host of other problems. What does your GI advise?

I find probiotics and herbal teas are helpful for symptoms too. So far, the best one for me is Garden of Life Primal Defense.

I think you are doing exactly what works for you. I think mananging for 21 years on diet and supplements is awesome and inspirational. There is another post on this forum that revolved around this same topic and this is what I wrote and think it is appropriate to post it here also.
"I disagree with those that say this disease cannot be managed unless you are on medication. Each person is different and what happened to one doesn't mean it will happen to another. Medications bring side effects and those side effects can be worse than the disease itself. I am prime example of that. I was given Prednisone which caused Avascular Necrosis to both knee joints (which either leads to complete joint failure or major surgeries) and due to the AVN I started another medication that caused my crohn's to spread from my sigmid colon to throughout my colon, small intestines, duedenum and stomach in a matter of 2 months time. Due to the rapid spread of disease, my medication was changed to Apriso which caused me to get Pancreatitis the very next day after only taking one half the prescribed dose. So, as you can see, there are serious risks with medications and in fact, I will never forget what the Hospital Dr told me when I was in the hospital, he said that medication is nothing more than controlled poisoning of the body. I am not saying that medication is not called for but I am saying that if you can control your disease with diet and supplements, that is what I would try first and work from there. "

I wish you the very best!

Clardner, you wrote: "My Gastro follows me very closely and I go for regular checkups and have a colonoscopy every 18 months or so."

And yet, you ended up in the hospital. Was it stress that got you there? Did the disease sneak up on you this time or did whatever stressful situation you were suffering prevent you from getting the right care? You mentioned that your 21 years since diagnosis you've kept things under "pretty good" control with diet and supplements. Personally, I think you would do better with meds, but we're all just our own experiments with no control group.

While I understand that everyone is an individual and not a statistic, I am pretty sure that if large population studies show that maintenance medications are helpful (and they do) I am going to take them. Like gumby, perhaps I'm lucky to have insurance to cover most of the cost and that's not an option for you. And maybe when you were on sulfazine that was not the right med for you. Only you know the answer. But maybe also you, like the rest of us here at one point or another, took a long trip on the river denial and the pleasure cruise is over. That sounds really cynical, and I don't mean it to, but I do want to encourage you to try and do a real honest evaluation of the last 21 years since your diagnosis and try to see if your Crohn's was really so well controlled, or maybe just fulminating quietly, causing damage all along.

I take it my post went down like the proverbial lead balloon.

Ah whatever. I don't know why I even bother trying to help people some days. All they ever hear is what they want to hear, so fine. You can control your Crohn's with diet alone; meds are really, really bad for you, which is why doctors prescribe them. And so on, and so forth.

This forum doesn't need pissy attitudes, it needs encouragement and support. Being close minded doesn't help anybody. Many of us have years of experiance with our disease and when researchers don't even know enough about IBD, it's very arrogant for someone to think they know it all and that their way is the only way. There are many forms of bullying and no one here needs that.

pmedic, your reply is right on spot!

Oh god, it's pb4.

pb4, you got utterly pissy at me a few weeks ago on the UC board, saying I should be banned, when I hadn't said a single word to or about you. You've been posting your diet and supplements for years and I haven't ever said one negative word about it - nor has anybody else on the Crohn's board that I've seen. I know that traditional meds don't work for you, and I think you've done well to reduce your symptoms as much as you have done. I wouldn't suggest meds to you because it would - given your history - be a waste of time for you. Plus you're an old hand at having Crohn's disease and don't need my advice on dealing with this crappy disease.

The only people I tell to get on the meds are newbies.

Yeah, I wasn't being 100% serious.

If none of the 5-ASAs work, you could go the next step up to an immunesuppressant like 6MP or Imuran. But if you are in remission most of the time I doubt it's worth it. Your GI sounds like he is doing a good job of monitoring your disease.

That's hardly bossing you about, I would say.

And ever since you caused the melodrama on the CD forum when Admin decided to "clean house" with your post to the whole board about what was going on, I had no respect for how you handle things in general, then or ever since then.

pb4 said...
At the UC forum, you were continuing your relentlessness about "everyone should be on meds" mumbo jumbo and that's when I jumped in to defend others that don't or cannot do meds...you're a straight up bully IMO.

"Relentlessness" on the UC forum, sure. By posting in a single thread (which I hadn't made).

I don't think you or pmedic actually read my posts. I think you just see my name and decide in advance what I'm saying - without actually reading what I'm saying. That's the only way you two can come up with some of the things you have said about me. By the way, it's interesting that the only two people who have both shown mild signs of bullying tactics against me are accusing me of being the bully.

Likewise, you both seem to have a very convenient blind eye to anything negative said about meds or surgery. Funny that. Or not really. Just humans being humans.

pb4 said...
And ever since you caused the melodrama on the CD forum when Admin decided to "clean house" with your post to the whole board about what was going on, I had no respect for how you handle things in general, then or ever since then.

Just noticed this, so my apologies for 3rd post in a row.

No idea what this is about, so you'll have to enlighten me. Only thing I can think of is the Ivy and Nanners demodding furore. If it's that, I already told you, that was nothing to do with me. I wasn't even there at the time; I only found out about it a few days after it had happened. Hard to believe it is that, but I can't think of anything else.