Meds or no Meds, also duration of Meds

TheIllness

New Member

Joined : Feb 2010

Posts : 10

Posted 2/10/2010 1:23 AM (GMT 0)

Sorry in advance for the long post but I've never actually been able to discuss this all with people who will understand and whose opinions actually stem from personal experience.

I have a GI apt on Monday and am starting to think about medication options...In the past I have been reluctant to take traditional western meds since they seem to be long term and that scares me. I have only been on them once, during a pretty severe flare (2007) I went to a GI here in Milan who is supposed to be a leading expert on UC and he put me on oral cortisone and mesalazine and some mesalazine enemas. The cortisone took down the flare pretty quickly but the side effects were a lot to deal with. I was on it for 2 months and as soon as I tapered the mesalazine did nothing to maintain my "remission". This coupled with the fact that the GI had TERRIBLE bed-side manner really put me off the idea of conventional treatment. I basically stopped taking the mesalazine and did my usual diet watching etc and the flare went away on it's own after a while, which is what usually happens.

The next few flares (2008-2009) I was treated by a GI in California who is convinced that UC is caused by parasites. I did in fact test positive for cryptosporidium and took some extremely intense and high doses of antibiotics and was sicker than I have EVER been in my entire life. I mean pain and fever and D and trouble breathing sleeping eating moving anything you name it. But after the treatment course I was in remission for another year. Then I had another flare, another bought of antibiotics, another remission. The problem is that I did not test actually test positive to any parasites the 2nd time around (the results where inconclusive) and although the treatment "worked" I can't help but think it was somehow coincidental since here I am not even a year later with another flare. According to the GI's theory, if my UC was truly caused by parasites they would be eradicated and I would be permanently better. So...

I started flaring in December during a very emotionally stressful time. I know some people think that stress can trigger flares, I'm not sure whether I believe that 100% but I definitely notice that stress worsens things for me. Anyways, I have been trying to get things under control on my own and I am starting to feel a bit better from supplements and diet but I am still experiencing blood and D...Given my past experiences I am wary of doctors and I am reluctant to put my health into someone else's hands, just like everything else in my life i want total control!

But my family is getting worried and made me an appointment, so off I go.

I guess my questions are: How many of you swear by your meds? Have you noticed a huge difference since getting on them? How about side effects? What are everyone's thoughts on duration of treatment? Do you listen to your GI when they say "for the rest of your life?" Is the GI's opinion gospel?

Thanks for reading and thanks for your opinions!

suebear

Veteran Member

Joined : Feb 2006

Posts : 5698

Posted 2/10/2010 2:47 AM (GMT 0)

UC is a chronic life long disease that will have periods of flares followed by periods of remission. It is not a disease that you get into remission and then stop treating altogether, at least that is not recommended. Research shows that the best way to stay in remission is to stay on maintenance medications for life.

There are a host of alternative treatments out there but unfortunately they don't work for everybody. If you have the time to experiment, try them. But I caution you to stay away from any treatment that claims to "cure" colitis or that costs a lot of money. Lots of people out there prey on those of us who are sick and don't feel bad about taking our money. The only permanent cure for UC is surgery.

Stress never caused my flares nor did food. However both stress and some foods made me uncomfortable while flaring. I had a good 10 years of remission followed by the floor dropping out and then lived another 2.5 years in a flare. I opted for surgery when my medical options ran out and it was the best decision I ever made. Since you have pancolitis and are at a much higher risk for surgery down the road, I would carefully weigh all your decisions and ask yourself what you are willing to do to compromise or to improve your health to avoid surgery.

Sue

fruitgirl

Veteran Member

Joined : Feb 2009

Posts : 7164

Posted 2/10/2010 3:40 AM (GMT 0)

Well, I've been in remission since May (which to me means no symptoms and not on pred), and I've been w/o symptoms since shortly after starting a course of pred in mid-March. Now, I know that's not all that long in the grand scheme of things, but I haven't even had a blip in my remission.

I fully believe that western meds lessen the severity of UC flares and increase the time between flares. Will I still flare, even when on maintenance meds? Yes. But, like I said, I believe the meds I'm on will keep them from being so severe and will give me longer stretches of remission.

I personally will never go off of meds, unless they all quit working and I have surgery.

summerstorm

Veteran Member

Joined : Aug 2006

Posts : 6575

Posted 2/10/2010 3:50 AM (GMT 0)

i think that for some meds work wonders and keep them in remission for years. For some they dont work well at all.
And of course you have to weigh the risks of the meds themselves, the possible sideeffects, some minor, some not so minor.
There are herbal and natural treatments, diets all kinds of other things, and those work for some people too, but again arent without side effects.
I took immuran for 5 years i think, with it sort of working, i was able to function but still sick most of the time, and two or three flares that ended up in the hospital. in the last three years i added asacol and went off the imuran which worked ok for a while. then that stopped working, so i went on remicad, 6mp and stayed on the asacol which was perfect for a few months, then stopped workign compeltley. And of course i was on and off pred for the whole 8 years. i was also on immodium most of that time to control things so i coudl go out, and stayed on phenogren because the immuran made me so nasueas. to me, those meds werent worth it, i shoudl have just gone ahead with surgery, because they didnt help me enough, and the side effects were too much for me.

I did try this stuff at first, called, total leaky gut, its some kind of herbal thing, and it worked perfectly! but was like 160 dollars a bottle, which was less than a month worth, so that was out!

That said, its such a personal thing, lots of people find a med that works for them, with no problems and are fine for years, some go through lots of meds before they find one that works, and some never find anything that works.

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