I don't understand REMISSIONS

does remission mean that there will be a time when I won't need to take any medication what so ever?

Not according to the medical community unless you have surgery and even then there are people post-surgery who need meds.

The only place you'll ever hear of people who don't take meds after being diagnosed with UC is either in the surgery forum and here from people who have managed to go med-free using diet, supplements or both.

My doctor says there are studies showing that people who take anti-inflammatories mesalamine meds have less colon cancer than those who don't.

I don't want to make you feel bad but life-long meds are part of UC and only a small percentage are med-free without surgery.

I understand about not wanting to use the enema forever. That may not be necessary. You may get the lower inflammation under control with enemas and then be able to take low impact meds like Balsalazide/Colazal which has few side effects (at least for me). Ask your doctor about what he/she sees as your long range plan at your next appointment. But don't stop the enemas in the meantime.

P.S. I also said no to immunosuppresive drugs and used diet modification to get my symptoms under control. It worked for me and no enemas used in a very long time now.

budenosoide is not a mesalasine - in europe is called budenofalk. it's a corticoid enema, developed in order to address more to our gut and with lesser side effects.

I'm wondering why she dien't put you on any mesalamine enemas rather than the steroid?

q

She never even mentioned 5-ASA medications and I don't know what they are really. She immediately put me of Prednisone and I've been taking steroids ever since. I will definitely talk to her about these 5-ASA medications when I see her next time. She did mention that her long-term goal was not to have me steroids because long-term steroid use can have horrible side effects in the future. Thanks quincy and BabeintheWoods for informing me on this. I will being this up during my next appointment! :D

I think accepting the fact that you may have to be on meds for the rest of your life is difficult for some people. To me, when you find that regiment that manages this thing, you feel good that you're doing your best to take care of your health. Relapsing and having to go back on pred is not worth the rest of the time being without meds.

One relapse cured me of thinking I didn't need to be on meds the rest of my life.

well i was in remission for 2 years! i didnt take any med...and trust me i tried them all and hate them...but im not sure what i did differently. i was a vegitarian..i did it fish though..and i didnt eat salad or cheese..ever....then i got married..so thats the problem...haha! but anyway..it did come and go...and now im trying to control it again..im not eating lettuce..im actually feeling better...i also eat some raw garlic everyday...just a bit...im honestly feeling better. its a relief!

Thanks for your replies, everyone! I really appreciate it. I just have a very negative mindset towards medications in general since I started experiencing the side effects of prednisone. I just don't want to deal with such side effects my whole life!

Gina..you don't have to be on pred...ever, for UC. Do the research and reading on 5ASA medications, oral and rectal.

You have UC...it's a forever disease. If you learn how to control it and learn how to treat flares early with meds that hopefully won't have long-term effects, then that's what you'll have to do.

Even many who are on certain diets, many of them are on meds.

No offense, but welcome to "life" as a non-perfect being. Education through experience, knowledge and proactive steps helps a lot.

As we age, we change...We can't control everything, especially inherited tendencies.

q

Gina, I remember I was on prednisone and in such despair over my disease. I'd call my family and cry, "I can't believe this is happening to me." Prednisone is horrible and will really turn you off to meds, but it does help get you into remission. It's up to the enemas, the orals and the suppositories (all mesalamine) or a steroid enema (for temporary use) to maintain your remission for as long as possible.

So you should add to your regiment, eventually switch the steroid enema to mesalamine enema. While you ARE doing great, you need to be off prednisone some time and feel normal to consider yourself in remission. I got off prednisone, dropped my maintenance meds to a lower dose and flared a month later and had to go back on pred. This was what my doctor ordered, so he declared me in remission way too soon.

Gina,

I totally hear your frustration. I was on prednisone the first time when I was pregnant and flaring, and I was a crazy person and I too hate it. Unfortunately, it does help. After my most recent flare, my GI doc put me on Entocort EC, which he said was a steroid for your colon and there were a lot less side effects. I'm curious, do you get the pred side effects with the steroid enema? Never been on one, just the regular enemas among other things, but I was thinking of asking my doc about them. I also am surprised your doc didn't even mention 5-ASA drugs, though I remember right when I was diagnosed, the doc I had then didn't mention them either and just put me on enemas. Enemas freaked the hell out of me, but later I went on prednisone and would be glad to do enemas to avoid that again. Hang in there. I am happy for you that you are feeling better and hopefully you stay that way.

Gina-I don't have a lot of time tonight (my husband has been out of town since Thursday and both my kids have been sick with a stomach bug and I am 7 months pregnant-needless to say, I am heading to bed soon), but I wanted to tell you that I understand.

When I was first diagnosed, I had a crappy GI who didn't know that much about the disease and did not explain it well to me. I had never had any health problems before this diagnosis. Heck, I never took anything more potent than advil or tylenol aside from having meds for c-sections! So the idea of having to be on meds forever was something I just had not considered feasible for *my* life. And thus, once I got into my first remission, I stopped taking the meds. And I didn't know that was a bad idea. But oh how it was. Taking a few pills a day is NOTHING compared to what I have been through since-and had I stayed on the maintenance drugs and gotten the info I needed about the disease, my UC may not have progressed to the point it has. So please do find out what meds you can effectively use for maintenance and stay on them unless and until you have some experience under your belt with this disease, and can figure out if there are any diet/supplement tricks that work for you. (and they do not work for everyone-you will find that the only thing we really have in common in terms of our health around here is that we all have a disease by the same name. But my UC and your UC are quite different in terms of what our triggers are, how bad our flares are, and what treatments work, etc)

Another thing I never thought I would ever do before this disease, and even immediately after, was regularly use rectal meds. But let me tell you, they can be a Godsend. They don't all work the same for all people-for example, steroid rectals make things worse for me, canasa works well and rowasa-5ASA enema-does not work for me. So again, you have to play around with what works and what doesn't for you-but they are worth using.

You will have to find a new normal. I have. I have had times in my life in these recent years when I felt badly for myself, and there is no doubt that I would love to not have this disease, but there are some things about my life that have really improved since I accepted that this is my new lot. I used to be a very very stressed out person. But stress is a big trigger for me, and I can't have it in my life like that anymore, so I have been forced into finding ways of keeping it away and handling it differently when it is unavoidable. Antibiotics are another trigger for me, so I have found preventative measures for staying healthy, and I am definitely in good health aside from the UC! Also, I am so much more vocal now about my health. I am my own advocate, whereas before I just blindly followed whatever the docs told me. I have found acupunture and some other alternative therapies that have had a huge impact in my overall quality of life. I am not happy I have UC, but my life on the whole is much happier now than it ever has been before because of the changes I have had to make because of the UC. But that doesn't mean it is easy to accept. You have a chronic illness now, and it will take time to process it all, come to terms with what that means in your life and find peace with it.

My biggest advice would be to not make any drastic changes with your meds and such before you do more research and find out more about the disease and various treatments of it. And this forum is an excellent place for information!!!

I know this is an old thread but I was searching and came up with this. So you are on Remicaide while you were expecting a baby? I didn' think you could do that? I'm a Mom of 2 who wants a 3rd. Cannot seem to hit remission after years of mostly quiet UC. Considiering 6mp but very scared of the next line of drugs. Allergic to mesalamine.