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Posted 6/17/2010 3:03 AM (GMT 0)
I have been lurking here the past week or so, reading through some discussions.

I am newly diagnosed with Ulcerative Colitis (April 2010), my first symptom was blood in my poop, which I first assumed was a really stubborn hemmoroid, but it didn't go away, so I finally went to see my doctor and came back with this diagnosis.  I never wanted hemmoroids before, but I was certainly hoping that what it would be.  eyes     No such luck.  So I did canasa for about 10 days and got dizzy and nauseated.  So I stopped taking it, felt better, though still blood in poop, and at this point I am starting to develop more symptoms (more frequent poop, abdominal pains, etc.)

I have never ever been a person who goes to the doctor other than an annual exam.  I don't take any medication that I don't *have* to take.  I have spent almost every night browsing internet sites for info on alternative healing methods for Crohn's and Colitis.

I bought the book about the Specific Carbohydrate Diet "Breaking the Vicious Cycle" and read it, and it kinda makes sense to me so I am giving it a try.  I am also trying probiotics and a few other herbs/supplements (Boswellia, fish oil).

I am wondering if ANYONE out there has experienced a remission from symptoms totally drug free? (please, someone, say yes wink ) I am looking for some positive encouragement here.  Mostly I hear about people trying lots of different meds, and when one stops working, they get another, etc.  Not too many stories of people successfully getting rid of symptoms with no meds.

I also wonder if there are people out there who got a UC diagnosis, and when symptoms went away, they just never came back?  Is that at all ever possible, or does EVERYONE have flares periodically?  (I am guessing that if you never had a flare, you would have no reason to be there talking about it, but it's something I haven't yet heard of, so I'm still hopeful that it's maybe possible for some lucky few?  Hope springs eternal.)

Those are my questions for today.

Thanks!

Posted 6/17/2010 5:03 AM (GMT 0)
I was definitely in the same boat as you when I was dx'd (as far as RARELY seeing a doctor... I gave birth at home for crying out loud) and gave myself a solid month of SCD, no meds to see if I would improve.

However, I was MUCH sicker than you are describing right now so it did nothing for me and I ultimately gave in to the pills when I developed some intense shoulder joint pain. Plus I was too skinny at that point from the crazy amount of pooping. :p

Anyway... I think there are a few folks who may chime in regarding doing as much as you can without the meds. But don't let yourself get too sick.

So if you are not super sick and you're really set on trying it, then try it. Keep in mind that meds or herbs/supplements, probiotics, fish oils, FOOD etc etc all affect each of us differently. Some things that have helped many have actually caused me problems.

Keep a journal of what you're taking, what you're eating, how you're feeling, if you're seeing blood, if you're stressed, etc etc... whatever you feel is relevant to your body. I was really surprised at some of the food I eliminated (meaning, I wouldn't have thought it would be an irritant) and if I ever eat a little bit I always react.

can't remember if psylium husk fiber is okay for SCD but a lot of us have had great success with fiber supplements.
ground psylium husk is plain, no sugar or flavor, can be mixed in with tea or something and is found at a natural food store.

and yeah, I think all of us on here are of the persuasion that we all flare from time to time, that doesn't necessarily mean it never happens differently.
Posted 6/17/2010 5:18 AM (GMT 0)
I know exactly how you feel.

I was diagnosed when I was 17, given meds and took them for a while. What teenager wants to use enemas and suppositories?

I went off to college, no meds, had a pretty bad flare at 21. Didn't even see a Dr., just lost weight and luckily recovered. No insurance! I was in denial, too, I think.

Then my grandfather got colon cancer and that changed everything. I started taking Lialda regularly at 26, and ended up in a pretty bad flare even taking that consistently.

I always have mild symptoms, like blood, diarrhea. I think the hardest part of this disease is ACCEPTING that it is chronic. I wanted so badly to deny that it was a serious disease and I thought I could make it go away with diet and positive attitude. However, it doesn't really work that way.

I would recommend taking medicine. Find a GI who understands where you're coming from and who will give you treatment OPTIONS. I hate, hate, hate, taking pills. But I've really come to understand that it's part of the territory, and I want to do everything in my control to keep my UC as dormant as possible.

Just my $00.02.
Posted 6/17/2010 5:31 AM (GMT 0)
I'm med free. I use turmeric instead of mesalamines for maintenance. The medicines you are taking are very mild in comparison to some of the other medications that are prescribed for UC. It is much better to take them than to have your flare get worse and be prescribed some of the other kinds of medicines. Suppositories also treat the condition at the source. Many of the other medications are oral.
Posted 6/17/2010 6:09 AM (GMT 0)
Many of us use alternative therapies. I love SCD. I take fish oil, and tumeric and lots of vitamins. I really benefit from taking tons of probiotics also. I must say that when I was younger I didnt take my prescribed medicines as I should've and the colitis spread quite a bit. I love my alternative therapies but I will never make the mistake of not taking my prescribed medicines again. I dont want the colitis to spread any more than it has already. Be very careful and dont let your flare go too long without meds. Good luck to you.
Posted 6/17/2010 6:18 AM (GMT 0)

superyogloo said...
I always have mild symptoms, like blood, diarrhea. I think the hardest part of this disease is ACCEPTING that it is chronic. I wanted so badly to deny that it was a serious disease and I thought I could make it go away with diet and positive attitude. However, it doesn't really work that way.

I had been in denial about it too until recently when I flared almost as badly as I did when I was first diagnosed, well it was as bad but I knew better how to handle it. I did a lot of online research too and read a few books about it. I had read in one source that your first flare is almost certainly your worse, in 'majority' of cases, and that it will probably never get that bad again... They were wrong. I have learned a lot in the short time Ive been here, but then again Im at a place where Im ready to accept this is a chronic illness that I have to learn how to manage.

As someone already mentioned everyone's illness is unique to them. What are triggers (if there are any, sometimes my body just flares for what seems to be the fun of it!eyes), what foods to avoid, what meds work best. The only thing that seems to be a running theme in everyone Ive met with UC is the fact that the symptoms are simliar. What causes them, what helps them, whether it be food or meds, seems to vary from individual to individual. I find that so interesting.

I would suggest, at the very least, to keep a food journal. Get rest when you need it. You dont know which direction this disease is going to go with you. For some, Ive found it can just get worse and worse. For others, they seem to be able to manage it with meds, or diet. What scared me was the possible need for surgery in the future. Im happy to use some meds, the ones without the crazier side effects. Those ones, I will only take as a very last resort. But this is where I am with the illness. It took me a good five years to get here.
Posted 6/17/2010 6:54 AM (GMT 0)

Heidi33 said...
Many of us use alternative therapies. I love SCD. I take fish oil, and tumeric and lots of vitamins. I really benefit from taking tons of probiotics also. I must say that when I was younger I didnt take my prescribed medicines as I should've and the colitis spread quite a bit. I love my alternative therapies but I will never make the mistake of not taking my prescribed medicines again. I dont want the colitis to spread any more than it has already. Be very careful and dont let your flare go too long without meds. Good luck to you.

I suspect that me being very sloppy with the 5-ASA and not contacting the my GI until the flare-ups were really bad have made this disease worse than it had to be. Avoiding oral 5-ASA and be forced on 6mp/pred/biologics is not a good trade-off.
Posted 6/17/2010 10:35 AM (GMT 0)
Wow, thanks for all the great posts thus far.  I actually didn't expect to see so many other people out there who hate medication.  I have a local CCFA support group and have been to two meetings already, and when I talk about not wanting to take drugs, the other people in the room seem to think I'm crazy. 

I haven't had a big flare, my symptoms have been pretty mild, and I'm hoping to keep it that way.

Thanks again, and keep the info coming!  :)

Posted 6/17/2010 12:26 PM (GMT 0)
Welcome to the forum!
What I appreciate here is that so many folks "think out of the box"...... sometimes I think that if, well, if not a "cure" at least some reasonably successful treatments are developed, they're going to be developed right here in our HW forum!
You've received some great advice above. The best thing is to listen to your body (even when your mind sometimes says, "no, I'd rather this just go away!!) and - if the SCD is good for you, then - marvelous! If it isn't...... then don't force yourself to stick with it; there might be another path for you.
We all seem to be different - some are really helped by SCD and dietary changes, others by probiotics.... some just by standard meds.
If your inflammation is mostly at the bottom of the system, rectal meds would likely help you. Search on here and you'll find out a lot about them - including vitamin e enemas (which I have not tried but seem to help a lot of people.)
I am one, incidentally, whose first flare was my worst. I figure that's because I've been good at taking my meds and quick to step them up when I've flared.
Good luck, I hope SCD does it for you!
Posted 6/17/2010 1:14 PM (GMT 0)
I am allergic to mesalamine drugs so I am forced to go the natural route. I would even get nauseous with Canasa suppositories, just like you, but hopefully you aren't allergic to all 5-ASAs. If diet and nutrition can control my UC symptoms then the allergy to meds would be a blessing in disguise. But if later I am forced to taking stronger meds like Prednisone to get out of a flare then it would be curse. (I managed to escape my first major flare with antibiotics but that is another story).

Here is some information how some natural supplements can be just as effective as mesalamine to control UC:
http://www.ncbi.nlm.nih.gov/pubmed/11488449
http://www.ncbi.nlm.nih.gov/pubmed/10022641
http://www.umm.edu/altmed/articles/turmeric-000277.htm
http://www.ncbi.nlm.nih.gov/pubmed/18932276

It is also very important to keep a food diary to see which foods aggravate your symptoms. Even those who follow SCD or other diets faithfully find that some 'legal' foods give them problems and some 'illegal' foods are not so bad.

By the way, probiotics are a MUST. Whether or not you are going to avoid meds you should take probiotics every day, since they do not remain in your digestive system for more than a few days.
Posted 6/17/2010 2:04 PM (GMT 0)
Regarding your original post, my husband is one who has only had one flareup, when he was diagnosed, just over 15 years ago. He still takes a maintenance dose of sulfasalazine (2 pills/day) and 1 mg folic acid. He has yearly colonoscopies and there is no inflammation and the GI says, "if I didn't know you have ulcerative colitis, I wouldn't be able to tell by looking at your colon, it shows no signs of inflammation or UC." So yes, it is possible to have a total remission from symptoms, but in his case, not drug free. My daughter on the other hand, has tried every med--ASA's, immunosuppressants, biologics--supplement, alternative therapies, SCD, gluten-free diet, and with the exception of five days when she started asacol, and the first 6 weeks of remicade, she has been flaring for a solid 2 1/2 years. She is scheduled for surgery next month. :(
Scary, yes, but we are out of options and her life has deteriorated to the point where she is weak from losing too much weight and only leaves our house to go to the doctor.
Posted 6/17/2010 2:10 PM (GMT 0)
UC is a disease of denial. Most of us, at times, like to pretend it doesn't exist and that it isn't chronic. As everyone has said, there are many ways to manage the disease. As you look at the alternative options just remember that research has shown that keeping inflammation at bay is key to reducing your risk for colon cancer. Not to scare you but UCers are at a higher risk for CC and it's thought that chronic inflammation leads to cell changes. The reason why maintenance meds are prescribed is that they keep the inflammation down. Good luck on your journey!

Sue
Posted 6/17/2010 5:09 PM (GMT 0)

Unfornutately, this disease has a mind of it's own.

Posted 6/17/2010 5:55 PM (GMT 0)
I would say that the crazy people are the ones that want to take UC drugs. LOL

I do take 5 ASA drugs because they are fairly safe, insurance pays half or more and they are 3 times better than nothing. Do they work really great? No. Only 70% or so remain in remission for a year and far less than that get into remission using them. But I did. Very expensive too.

I wish that more studies were being done on diet, less expensive treatments(like probiotics) and combining drugs with diet/natural treatments. Both mutaflor and VSL#3 have clinical studies showing that they work as well as 5 ASAs in some circumstances. By taking all three, am I wasting my money or improving my odds? I would sure like to know.
Posted 6/17/2010 6:07 PM (GMT 0)
I did, for 3 years. Probiotics were enough to maintain remission (although I did need drugs to get it into remission). I went against my doc's orders, dropped the mesalamine he wanted me on for the rest of my life, and ate lots of yogurt.  It worked great for 3 years.

Then I got pregnant, had a MASSIVE flare that almost killed me after my son was born, and now I have half a CVS pharmacy in my bathroom.

I should have stayed on the meds. I really, truly almost died, and what I've gone through for the last year is NOT worth it to avoid taking a couple pills a day.  The ASA drugs aren't bad at all.  If you skip them and flare massively, you could be looking at my laundry list or surgery.

Posted 6/17/2010 7:02 PM (GMT 0)
hi ya. I am on no medication at the moment. I know though that if i go off the diet I will end up on them. That is what I have to live with there is no other option. If you choose to do the diet you must stay on the diet for the rest of your life. All the healers like people like David Klien, Paul Nison stay on the diet. So thats it. I suggest that you reduce the sugar and see what happnes to your body. omit all sugars so then you know what is causing the illness. for me I have chosen this path so i am not breaking it. Good luck in what ever you choose.
Posted 6/17/2010 7:06 PM (GMT 0)
oh sorry i didnt put my bms. I go once a day no blood or mucus. :) today it felt great to do a poo. I remember it being so painful.
Posted 6/18/2010 2:13 AM (GMT 0)

Hello,

    I had UC for 14 years. For about half that time I took Pentasa until I got allergic to it. As a last resort I tried Psyllium. After a couple weeks it took effect and worked as well as the Pentasa had.

   Psyllium husks alone won't work. I had to use the ground whole seeds which I ground myself. I screened out most of the husks because they didn't grind well in my grain mill. I tried buying the pre-ground seeds and they worked as long as they had some of the husk in the powder. I could tell because the husk is darker colored. Without the darker flecks in the powder it didn't work.

   You should be able to buy the pre-ground seeds and husks seperately and mix in about 10% husks with the seed.

   Be careful not to breath much of the Psyllium dust because it's easier to become allergic to it that way. I eventually became allergic just when I got rid of the UC. I dodged a bullet there.

   It turned out the UC was caused by Lyme disease which I had all those years, and longer.  When I got rid of the Lyme, the UC went away. What a relief that was.

  Good luck to you. I know how horrible UC can be.

Posted 6/18/2010 6:11 AM (GMT 0)

zucchini said...
Wow, thanks for all the great posts thus far. I actually didn't expect to see so many other people out there who hate medication. I have a local CCFA support group and have been to two meetings already, and when I talk about not wanting to take drugs, the other people in the room seem to think I'm crazy.


I haven't had a big flare, my symptoms have been pretty mild, and I'm hoping to keep it that way.



Thanks again, and keep the info coming! :)

It's because many of the drugs used to treat UC are really bad for the body and don't treat the cause of the disease. If there were a good drug that worked and didn't harm the body, then I would happily take it.
Posted 6/18/2010 1:13 PM (GMT 0)
     You asked if anyone's UC symptoms just went away on its own.  I know two people who were diagnosed with UC, took meds for a few months and their symptoms went away.  They went off the meds and their UC  never came back.    It has been over ten years for both  of them.  They are the lucky ones.  One woman swears by taking flaxseed oil capsules.  I tried them, but they didn't do anything for me mad .
Posted 6/18/2010 1:15 PM (GMT 0)
Yes, and I know 2 women who have had UC for 25 years each and one has still never had another flare and another one ended up having surgery due to a massive flare. This all plays into the unpredictability of the disease.

Sue
Posted 6/19/2010 2:22 AM (GMT 0)
Thanks again, very interesting food for thought.

I'm definitely sticking with the SCD diet for now, just got 2 grain-free cookbooks in the mail today that make me feel a lot better about sticking with it (photos look sooo yummy!)

I am glad to hear of a few folks who had a flare, were diagnosed, and then haven't had any problems again in a long time. Very good news. Good for them. Encouraging to me.

I've always thought of myself as super healthy. I work hard to be healthy. And then one day, there's blood in my poop. Ack! Now I have an incurable chronic digestive disease. Totally rotten. I am lucky though. My family has been totally supportive, even my kids are liking the SCD foods I've made thus far, and my symptoms were relatively mild (and at the moment seem to be almost gone after 1 week on SCD).

So, thanks again, everyone.

Peace :)
Posted 6/19/2010 3:02 AM (GMT 0)
 Mine started out like yours and I hate to say it but it took several months for all the symptoms to appear. Now I always have D and urgency several times a day.
Posted 6/19/2010 9:40 AM (GMT 0)
First of all, thanks for this thread and hey, I have got a good news for you.

My mom was diagnosed with UC in 1993 after family physician failed to diagnose it for 3 years. Her whole colon was inflammed and surgery was the decision. She decided to give a try to meds. One course of pred from 60mg and 2 years of Sulfasalazine. She could not afford sulfasalazine then so she stopped after 2 years without medical advice. Since then she is medication and flare free. Touch wood, it remains like this till her last day. I am also hoping to see such day.

Her GI told her, stress is the reason, reduce it. My parents managed to pull it down and she was fine. Sounds difficult to believe but its true. She hasn't done colonoscopy as she doesn't want to know how it looks in there. She doesn't have any symptoms and she is happy.

@ Babeinthewoods,
Thanks for those reference. I am interested in alternative therapies but none of the publications I checked so far give me confidence to start one (and I don't want to go to Remicade so soon)

@ sundued,
How much curcumin do you take every day and in what form?
Posted 6/19/2010 1:09 PM (GMT 0)
zucchini
the question you are asking will be almost impossible to answer correctly without a LONG scientific study (over 10 years) tracking people who got a definitive diagnosis of UC through a colonoscopy. I doubt it has been done.

On this forum are people with active UC and you want to hear from people who had a UC diagnosis and got better never taking drugs again. They aren't here. You will only hear about them as in "I knew someone who...". Not exactly scientific.

These studies SHOULD be funded by either our national government or through the private UC organization. But the people who have the money and highest interest are drug companies who fund studies on their new drugs. That's the way it is.

Thank goodness for this forum. We get to hear from people on their way to getting better before they drop off, drop out and live a normal life. I am getting there but who will remember when I'm gone. I should be gone now but it's freakin' hot outside (I live in Florida) and I spend more time on the internet than I should :-)

I'm not allowed to say I'm cured--just in remission, but I'm 95% there. Even the doctor in "Life Without Bread" says "Once colitis always colitis".

You aren't wrong to want to hear from people who once had UC and live life without drugs. Just realize that everyone is different and you need to listen to your body and find your own path to remission. Those who have gone before will leave a trail of almond flour crumbs behind to show the way....

:-)
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