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Posted 10/30/2007 5:27 AM (GMT 0)
Yeah, I've been off my Asacol for 3 weeks. This means I'm taking no medication for my UC and can barely tell a difference. I have ingested thousands of dollars of Asacol and am discovering its not doing much. Perhaps I currently just don't have a "flare" and will need the meds later.

I find it really difficult to classify myself as having a "flare" or being in remission. These things seem way to ambiguous to me and I can never categorize where I'm at. I'm hoping to find some more info about this on these forums.
Posted 10/30/2007 6:05 AM (GMT 0)
Hi Harpo,

Just wanted to tell you good luck, i did the same thing and it made my mild uc turn to pancolitis. I wish you the best!!! :)
Posted 10/30/2007 8:28 AM (GMT 0)
Personally I think too many GI's are lumping us into this catagory of UC. Makes things easier for them to go on prescribing this that and every other thing, then send us packing. I have to trust myself and know myself.

I was at a point where I felt I had control of my UC. Then my sister died suddenly. I had to travel to be with family. Within a month, I've lost most of my hair, boughts of d and constipation, pain fatigue and over all BLAH. I go to the bathroom and there's just too much blood.

I'm so disgusted with this diagnosis, treatment of symptoms and GI's. I really want to give up on them all. My GI won't even acknowledge the majority of my symptoms as being a part of UC.

Frustrating to say the least :(
Posted 10/30/2007 12:42 PM (GMT 0)

happydays said...
Hi Harpo,

Just wanted to tell you good luck, i did the same thing and it made my mild uc turn to pancolitis. I wish you the best!!! :)

So what did you do?
Posted 10/30/2007 2:06 PM (GMT 0)
If only it were so simple.

I wish you great good luck, Harpo! We'd all be overjoyed if this illness would take its leave of us as instantly and completely as it originally visited itself upon us and life could go back to the way it was before.

So other than probiotics, are you doing anything at all to treat your disease?

Mitz, who for over 20 years has dealt with chronic depression and takes meds for that every day, too, and has found that banging my head against the wall or willing that illness to disappear for ten years didn't work, and that accepting the chronic nature of that illness and treating it was the best course. Doing the same for UC has caused me to be able to compartmentalize those parts of my life, at least to some degree, and have a more or less "normal" life after I take my meds each morning. Have found that to be the most workable solution to my chronic, life-long conditions.
Posted 10/30/2007 3:02 PM (GMT 0)
Omg... you guys

If you are having severe to moderate colitis, Why are u getting off meds? These meds HElp you.. If you didn't already realize the naturopathic ways can only help so much.. and are ONLY beneficiary for people who are in remission straight up. you are going to make urself worse, if u dont see results in a few days u just give up? trust me dont, have patience

i have reaaaaaaaalllllly bad severe case right now

im on 16 pills of salofalk, and 4mg of rectal salofalk one bottle daily. My stomach hurts aLLLL the time I am depressive but I wont be stupid enough to get OFF of the meds just to take a darn leaf or piece of grass cuz its not medicine

cmon now.

 

Posted 10/30/2007 3:46 PM (GMT 0)
Ashna :)

I have to disagree somewhat, the natural route does not only work for mild case, especially when talking about probiotics, since research has shown that it has brought many UCers out of a flare and for other showing some improvements with their symptoms...not to mention there are some of us that are either allergic or non-responsive to traditional oral RX and have no choice but to go the natural route...

That said, in my opinion I think those who are on maintenance drugs and are doing well with them should probably stay on them and add things like probiotics and fibre supplements and/or bee propolis (and any other natural anti-inflammatories) to their regime to possibly improve things that much more...but I'd never suggest anyone give up their oral RX and switch to the natural route only if their RX is helping them.

:)
Posted 10/30/2007 3:54 PM (GMT 0)

PB4 I concur with you statements. For me, RX med's helped me at the beginning, but I was treating both ends and the medication wore me out in every way. Physically and mentally and spiritually. I have thought about taking up asacol again, but the headaches, the body aches, nausau and the tiredness it was always there. I remember a few times where my knees felt like someone smashed them repeatedly with a hammer, I couldn't walk.

You have to find what works best for you and you can only be the judge of it.

I've been off meds for 30 days. No urgency like I was having, no accidents. I drive my truck without thinking of a bathroom. I can make it to the next rest stop if I have to. This is huge for me compared to what I was use to. I am thinking about taking a ibuprofen just to see if it helps.

Posted 10/30/2007 6:48 PM (GMT 0)

AshnaG said...
Omg... you guys


If you are having severe to moderate colitis, Why are u getting off meds? These meds HElp you.. If you didn't already realize the naturopathic ways can only help so much.. and are ONLY beneficiary for people who are in remission straight up. you are going to make urself worse, if u dont see results in a few days u just give up? trust me dont, have patience



i have reaaaaaaaalllllly bad severe case right now

im on 16 pills of salofalk, and 4mg of rectal salofalk one bottle daily. My stomach hurts aLLLL the time I am depressive but I wont be stupid enough to get OFF of the meds just to take a darn leaf or piece of grass cuz its not medicine



cmon now.

Sounds like the meds aren't working at all for you... Can it get any worse?
Posted 10/30/2007 6:49 PM (GMT 0)

MitzMN said...
If only it were so simple.

I wish you great good luck, Harpo! We'd all be overjoyed if this illness would take its leave of us as instantly and completely as it originally visited itself upon us and life could go back to the way it was before.

So other than probiotics, are you doing anything at all to treat your disease?

Mitz, who for over 20 years has dealt with chronic depression and takes meds for that every day, too, and has found that banging my head against the wall or willing that illness to disappear for ten years didn't work, and that accepting the chronic nature of that illness and treating it was the best course. Doing the same for UC has caused me to be able to compartmentalize those parts of my life, at least to some degree, and have a more or less "normal" life after I take my meds each morning. Have found that to be the most workable solution to my chronic, life-long conditions.


I dont have a disease... I have some inflammation.
Posted 10/30/2007 7:27 PM (GMT 0)
Harpo I am loving your attitude.... and you are 100% correct about the inflammation thing.
Posted 10/30/2007 7:57 PM (GMT 0)
London Red what are doing about your hemmroids? I just ordered  some oils by Forces of Nature that says it shirks them completely.

Posted 10/30/2007 8:00 PM (GMT 0)
Anyone seen this?

http://www.colitis-crohns.com
Posted 10/31/2007 12:23 AM (GMT 0)
Hey, if that works for you, Harpo,
knock yourself out!

Mitz
Posted 10/31/2007 2:05 AM (GMT 0)

I went back to the doctors about 8 monthes later & i was sicker then ever & it spread through my whole colon. So now they say i can't have surgery (to cut out the bad part) unless i try mp6 & remicad. And i've been on pred. for 3 treatmeants, starting at 60mg. & 11-7 i've got to go back for a check-up (fun). So i'm over it but i've got to take meds or have a bag. & i'm not ready for that, i'm only 29. So if you know of any good doctors in N.E. ~~ N.C. let me know. But i wish you the best, just be careful. :-)

Posted 10/31/2007 2:43 AM (GMT 0)
Masscs! I thought I was the only one who got sick with pro-biotics! All the docs think I'm nuts, but I've tried it 3 times, and eating the yogurt I make with no sugar or lactose, and it always makes me sick!

Miracles....I hear you on how expensive all this crap is. *sigh*
Posted 10/31/2007 2:49 AM (GMT 0)
I lived in denial for almost two years, believing this disease would go away like a bad dream. I hope your luck is much better than mine, Harpo.

Good luck to you!
Posted 10/31/2007 1:54 PM (GMT 0)
Harpo, do you take a ibuprofen every day?

Posted 10/31/2007 5:17 PM (GMT 0)

therearemiracles said...
Harpo, do you take a ibuprofen every day?

No.. Only if I feel I really need it.. I wouldn't follow my lead on this... really.. I am a unique case, I dont test positive for any of the markers for Uc or crones.. I smoked, been on accutane, drank well water.. I've done all kinds of stuff that could have done who knows what..
Posted 10/31/2007 5:32 PM (GMT 0)
Harpo...were you checked for microscopic colitis?

I use aspirin with my doc's OK...I think some of us have no problems with some meds/preparations..where others are catastrophic. Definitely a "crap" shoot.

q ;-)
Posted 10/31/2007 5:32 PM (GMT 0)
Harpo, let me ask one more thing. Did you have a colonoscopy? Did they see ulcers?
Posted 10/31/2007 5:39 PM (GMT 0)

[Oxman] said...
Yeah, I've been off my Asacol for 3 weeks. This means I'm taking no medication for my UC and can barely tell a difference. I have ingested thousands of dollars of Asacol and am discovering its not doing much.

Some people don't respond well to Asacol but do well on the older drug Azulfadine/Sulfasalazine. Have you tried any other maintenance meds besides Asacol?

AshnaG said...

If you are having severe to moderate colitis, Why are u getting off meds? These meds HElp you.. If you didn't already realize the naturopathic ways can only help so much.. and are ONLY beneficiary for people who are in remission straight up.  

In my experience, it's not that cut and dried. Sometimes meds help; sometimes they don't. Sometimes one med will make someone more ill, while another one works much better, as mentioned above. Several natural supplements - probiotics, anti-inflammatory omega-3s - have been proven helpful to get flares under control. Dietary manipulation can also play a key role. These things are supportive and can be used in conjunction with pharmaceuticals. An elemental liquid diet has been proven to be as effective as prednisone for stopping a flare. There are many approaches out there. Educate yourself and don't blindly take any doctor's word as gospel.

Posted 10/31/2007 7:18 PM (GMT 0)
Therearemiracles,

What supplements are you taking from Standard Process? I went to a Chiropractor who recommended Standard Process supplements. SuperEFF is one of them. There are 2 more that I can't think of right now

Posted 10/31/2007 7:29 PM (GMT 0)

Mine are

Gastrax for coating the colon

Collinsonia root for my hemmroids,

A-F Beta food for cleansing the gall bladder for my gas, bloating and indigestion

A-C Cataplex

Here's the main thing I take 4 times a day, two drops in 3 oz of water

Citricidal for bacteria, funal, viral infection.

The dosages have changed like now I take 2 gastrax breakfast, lunch dinner, it's a cleanser and helps with digestion in the upper tract

3 collinsonia root and breakfast and dinner

5 A-F Beta Food Breakfast and Dinner

3 A-C cataplex at Breakfast, Lunch and Dinner

I started out with these same supplements, but different dosages.

Every day I'm seeing progress. I still have diarreah but the urgency is not there. I have formed stools every once in a great while.

Posted 10/31/2007 7:54 PM (GMT 0)
Ibuprofen is a very bad idea for someone with uc.  Trust me...I knew that I shouldn't take anti-imflammatories with the uc, but stupid me didn't think ibuprofen was an anti inflammatory.  I thought I was safe as along as I stayed away from advil and aleve.  The ibuprofen worked well for my arthritis (which I was lucky to get along with the uc) but after a good year of taking the ibuprofen, my uc went from being just lower left sided to being 3/4 involved.  And now I am having one hell of a time getting back into the remission that I enjoyed for over 8 years before I started taking the ibuprofen.  Stick to the tylenol.................

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