Newbie. I have hope.

Well I thought I'd introduce myself.  Names Gary I'm 20 years young.  I've been suffering from UC for about a year.  A couple months ago I got a colonoscopy and the doc said I had UC.  I was prescribed asacol.  It took the meds and THOUGHT I was healed.  When I ran out of the asacol I got some more 2 days later....well not taking it for 2 days seemed to turn things around on me.....When I started taking it again I started feeling all the symptoms from the Asacol.  NOT good!  So after a couple days or so I stopped.  *uck medicene.  I prefer to stay away from it for the rest of my life!  The body was designed to HEAL itself!!! 

 

I need advice on a good diet to go on that has worked for y'all.

 

I'm reading "self-healing colitis and chron's" by David Klein

 

I really hope that the book and/or this website can be useful tools for my healing process.

 

UC sucks and it is STEALING my life from me!!! HELP!

Just wanted to say hi and welcome! We have a good # of members that use homeopathic remedies. Hopefully they will post soon. Do you take an probiotics?

G'day there. Welcome to the UC club.

Ok well, my advice is this, cuz I used to think as you do and it landed me in hospital. The body is intended to heal itself, the problem with UC is that the body can't heal itself faster then our immune system is damaging it. Thats why the meds are required.

Medication is pretty much a nescessity for UC, as diet (in nearly all cases) can not be used to get you back in remission as diet does not directly affect the UC, only the extent of the symptoms you experience.

You will probably find that things like soft drink, coffee, deep fried foods and red meat are all good triggers. At least they are for me, especially soft drinks!

Do not self medicate. It takes a very long time and a lot of trial and error to work out if the symptoms you are experiencing are from the medication, something you ate, a bug you've picked up or a flare of the UC itself. Especially with the medications, stopping it for a few days and then starting again usually exacibates the symptoms for me for about 3 to 14 days.

With regarad to medications, it can take a great deal of time and effort from you and your GI to find the best combination for you. Read on the net about all the standard meds and understand how they all work. I don't "like" medication, but if I have to take it, I want to know what the hell its doing to me.

And my final bit of advice. NEVER, EVER let the UC get too far out of control. Thats the mistake I made and I have suffered nearly 2 years for that mistake. The longer you let UC go, the further out of control it gets, the harder it is to reign it back in.

Oh, and if you don't trust your GI - find another one.

This is just my take, but if you want to live the best quality of life you can, my advice is to do a lot of research on the net and understand what UC is and what its doing to you.

All the best

Disclaimer: This is not a "you have to do this", its just my view on UC and the lessons I've learnt the very hard way over the past few years. I was 16 when diagnosed initially and 27 now, so I've been at it a while hehe.

Hey Dude,

I did not take my meds when I felt fine and am just coming out of the worst flare I have ever had. I think it's best to be on as little meds as possible but you do need meds. I'd suggest talking w/your Doc about your symptoms. I wish I could take asacol again, the next step meds are not as pretty, though I had my problems w/asacol and the 5ASA's. Maybe you could slowly start taking them???

Hope you are better soon!

Hi gary, welcome.

Alternative therapies have worked for some. You may want to look into the SCD diet and definitely try the probiotics. I have tried so many different things but none worked for me. This doesn't mean it won't work for you though. I've been dealing with UC for ten years and have found that the meds make me feel the best.

I did have a long remission without meds though...about 5 years. Unfortuneatly because i stopped my meds my UC went from moderate left sided to severe pancolitis. All the Gi's agree this was becuase i stopped my meds. Now I am suffering for it. I have been in this flare for over a year and am steroid dependent. It looks as though the Imuran may not be working either. The meds all suck. But the disease sucks more.

If you choose to stop all meds please look into surgery. If something happens and you end up in the hospital worse off than you are now (I hope this doesn't happen to you, but it has happened to many of us) You will be prepared if they start pushing you towards somehting you aren't ready for. Know your options even if you don't want to use them at the moment.

Have you thought about acupuncture or an herbalist? may be something to look into.

Good luck! Keep us updated on anything you feel is working for you.

Hi Princesa,

So you fnd Patel's book pretty comprehensive then? I looked at amazon.com hoping to find a cheap paperback edition and see that her older book is there and very expensive too, but nothing new- i.e. she apparently sells it exclusively through her website now. Of course, I plunk down much more than the price of her book every week on my pig whipworm eggs (TSO), but I find her sales site a bit infomercialish, i.e. a bit of a turnoff.

However, if her book has alot of beef, i.e. alot of well-referenced research etc., I am certainly interested. Before plunking down the money, I was just wondering if you think the book is of value to someone, like me, who has already done lots of research (and self-experimentation), has binders full of research on mainstream and alternative treatments, etc..

Robert.K said...

Let's take this quote from her website: "These diseases are merely points along a continuum of worsening gut health, as it goes from localized to more systemic. So the continuum looks like this: IBS-----Diverticulitis-----Colitis-----Crohn's". This statement in and of itself illustrates an ignorance on her behalf of the mechanisms of these afflictions. They are not on a continuum. They are different illnesses, although with similarities. She is also not a health professional.

There is also a mention on Patel's website that her book is listed on the Crohn's and Colitis Foundation website of several countries, including the American (ccfa.org). To me, she seems to be implying endorsement. It's important to note, however, that the CCFA website explicitly states, "CCFA does not make any representation or endorsement of any books below."

I could go on and on, but I'll pass on Patel's far-below expert opinion. If I feel like researching, I'll stick with scientific journals and not some nobody peddling a miracle.

She never claimed to be a health professional. In fact, she has disclaimers all over the place. She is, however, an actual Crohn's sufferer who's been "in the trenches" so to speak. She's done plenty of research and testing personally and has achieved great results. Others she successfully helped begged her to write a book. She's simply sharing information. And the material in her book references multiple doctors, IBD studies and other healthcare professionals.

I tend to agree with her take on digestive diseases being a continuum, regardless of what the established medical community says. I suffered for years with IBS before I was "upgraded" to UC. The medical community gave me anti-spasmodics and anti-anxiety meds to treat the IBS which did precisely nothing to identify and treat the cause. As a result, my gut health further deteriorated until I was given the UC tag. Even now, after years of having UC, there are still things my doctors can't explain. Why do I have pain and bowel wall thickening on the right side when my UC was originally confined to the left side only? There is a lot allopathic docs still don't know about IBD, although they'll try to diagnose and tack a name on each of us. It's not a simple disease and there's not going to be a simple answer to treat it. Please don't denigrate an author and/or book until you've read the material personally. Again, this doesn't have to be an either/or approach. Allopathic and alternative medicine both have positive things to offer.

Probiotic said...
Before plunking down the money, I was just wondering if you think the book is of value to someone, like me, who has already done lots of research (and self-experimentation), has binders full of research on mainstream and alternative treatments, etc..

I have the first edition of her book and would be happy to send it to you. After reading it, you'd be in a better position to decide about purchasing the updated edition. Please email me if you're interested.

Robert K, please take a look at the forum rules in particular rule No. 17. which states the following:  No irrelevant or off-topic posts. Posts which are not relevant to the forum topic may be deleted at the moderator's discretion.

Post Edited By Moderator (Dansky) : 12/6/2007 1:20:55 PM (GMT-7)

Just adding my 2 cents...changing my diet/lifestyle was the only thing that helped me get off all meds and get rid of my UC symptoms. So far...so good :) I don't recommend doing such a thing without your doctors supervision, however. Some drugs made me feel much worse when I took them, so I always told my doctor to try me on something else. For me, Rowasa was a gift from heaven at the time. I need to make a daily conscious choice of what I eat to stay well. For me, I eliminate all yeast foods and limit sugar, grains and dairy. I eat lots of any meats/poultry/fish/eggs, any veggies (except corn products-a grain), and most fruits. I treat myself from time to time with dessert. I don't feel underprivileged at all, not when I feel so much better now. Don't give up. If you want to try something different, like a diet change, go for it. You'll never know until you try, I guess, and you don't need to invest any money in any special potions or drugs. It's just good wholesome food.