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dudewhrsmybike
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 12/5/2007 4:36 PM (GMT -7)   
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!

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 12/5/2007 5:51 PM (GMT -7)   
Hmmm.... I could not imagine NOT being on any medications for the colitis. That is very scary and from what I've experienced and learned on this forum; most take medications, watch their diet and keep their stress levels down and also take nontraditional supplements like probiotics, omega-3's and other things.

Please call your GI and talk with him/her about how you felt after not taking the meds and maybe they can prescribe something different that will help and work towards remission.
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 12/5/2007 6:05 PM (GMT -7)   
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?
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


dudewhrsmybike
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 12/5/2007 9:29 PM (GMT -7)   
I'm beginning to take Probiotic Acidophilus

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 12/5/2007 10:05 PM (GMT -7)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/6/2007 5:09 AM (GMT -7)   
Hi and welcome to Healingwell :) Severin makes a very good point - our bodies can not heal on it's own. How can a body heal when it's constantly attacking itself right? Definately please call your doctor to find the right regimine for you. You have to realize that this is not going to go away. You are, unfortunately, going to have this the rest of your life. How you deal with it is another matter. We have a handful of people on here that have success with diet regimines, but they are strict diets. Plus, we have some on here that believe their Uc is fungal related and use anti-fungals to help heal them. So as you can see, we have a wide variety of people who try a wide variety of things. Do you know where your Uc is in your colon?


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~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio, Colocort**Unable to tolerate Asacol, Rowasa or Canasa** 
~Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)~
~Secondary Reynauds Syndrome - '04 - Norvasc~
~Fibromyalgia - '06~
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/6/2007 7:48 AM (GMT -7)   
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!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/6/2007 7:56 AM (GMT -7)   

Hi and welcome, Gary,

If Asacol made you worse, it could definitely be a no-no. Though I have found myself so far to be violently intolerant (makes my UC much worse) to all the 5ASA drugs, many people seem to do horrible on one but tolerate others just fine (eg colazol instead of asacol, for example).

I am not sure I agree with those who say that you must be on meds, especially if one can't tolerate 5ASAs, since, besides %ASAs, the meds seem to have such serious side effect potentials. But it's too early to conclude that. However, I had my very strongest (pretty much total, normal life, no symptoms) remission when I was off *all* meds. Lasted around 9 years. I did however need meds, basically pred, to get into that remission (took me 2-1/2 years to get off the pred that time).

The best approach I think is to research and consider all meds but also do the same for non-med approaches such as probiotics, diet etc. which do seem to induce remissions in some (I know many insist that if there isn't a multi-million dollar, peer-reviewed double-blind study supporting it then it is impossible, but my view is that this simply means you need to use more grains or even "bags" of salt when you assess it, taking into account that some things are cheap and easy and rather safe to experiment with on ones own), and at the very least can dampen symptoms significantly, combining with the effects of meds.



Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering on and off ever since
10 20 17.5 15 12.5 10 mg 8 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 

Post Edited (Probiotic) : 12/6/2007 7:58:55 AM (GMT-7)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 12/6/2007 8:19 AM (GMT -7)   
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.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/6/2007 8:31 AM (GMT -7)   
A lot of people have problems with Asacol, but are able to take other ASA drugs. I switched from Asacol to the older azulfadine/sulfasalazine and have had good results with it. The ASAs are the lesser of many evils when it comes to IBD drugs and they have very little risk of serious long-term side effects. It's really in your best interest to find one that works for you to help you obtain remission. There's nothing that says you have to stay on it indefinitely, if you're able to use other non-pharmaceutical methods to stay healthy. ASAs can be used in conjunction with alternative methods. It doesn't have to be an either/or deal.
 
If you're interested in exploring non-traditional methods of treating and healing UC, I strongly recommend you check out Listen to Your Gut by Jini Patel Thompson. The new revision, a huge volume with CD, is by far the most comprehensive book out there. It covers natural supplements, body work, lifestyle changes and dietary recommendations to address various aspects of UC and has levels, so that as you heal, the diets and suggested supplements are less restrictive. There's a supportive forum and an online shop to purchase suggested supplements, if you can't find them locally. You'll find it to be much more detailed and complete than Klein's book which - unless it changed recently - is really only about implementing a specific diet - raw food - which can be very difficult with a compromised digestion.
 
Here's a link, if you're interested:
 
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/6/2007 9:03 AM (GMT -7)   
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..
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering on and off ever since
10 20 17.5 15 12.5 10 mg 8 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/6/2007 12:04 PM (GMT -7)   
Hello Gary,

Correct me if I'm wrong, but from your original post it seems that you have a negative impression of medications and a general resistance towards using them. I would urge you to lose this irrational phobia or resentment of medication as quickly as possible. Medications are more often than not crucial for sufferers of UC. Follow the advice of your gastroenterologist if he or she prescribes madications to you.

Reagrding Patel's book, I haven't read it but based on her website I must say I am a HUGE skeptic.

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.
Currently hoping that Remicade (infliximab) will be the answers I've been looking for over the past two years! I've used Asacol (mesalamine), Imuran (azathioprine), prednisone, and Salofalk (mesalamine) enemas. Currently I'm using prednisone, Asacol, and Imuran while awaiting my first Remicade infusion.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/6/2007 12:48 PM (GMT -7)   
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.

Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine. Off the pred and doing well.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Post Edited (princesa) : 12/6/2007 1:03:04 PM (GMT-7)


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 12/6/2007 1:21 PM (GMT -7)   
Dudewhrsmybike,

Allow me to take this opportunity to welcome you to HealingWell, my advice would be to constantly liaise with your medical team, I am in a pretty decent state (UC) at the moment although it took a considerable amount of time to get the right meds for me, if you don't take the meds you need in my opinion you are damaging yourself, but hey you are 20 years old and you certainly didn't come here for me to lecture you :-) But seriously give considerable consideration and get as much info as you can from your docs so you can make an educated decision on whether or not to take the meds, whatever you decide to do we will be right here for you whenever you need us.

Probiotic and Princesa, the purpose of this thread is for Dudewhrsmybike to ask advice and for support if you 2 wish to bicker with each other about a book this is not the place to do it so I suggest you either email each other to continue your disagreement or let it drop, the purpose of HW forums is to offer personal mutual support, thank you for your co-operation.

Take care.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
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Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/6/2007 1:21 PM (GMT -7)   
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)


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 12/6/2007 1:31 PM (GMT -7)   
One other thing, UC does suck but in time you will learn how to cope with it, just hang in there you will get through the rollercoaster and never be afraid to ask for advice or help.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
 http://www.healingwell.com/donate/

 

 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 12/6/2007 4:37 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.
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