How did you get to a true remission?

Susan451 - "The book is called Inflammatory Bowel Disease, The Essential Guide to Controlling Crohn's Disease, Colitis and Other IBDs. Author is Professor John Hunter." How old was this book??? The title itself contains so much mis-information that I had to ask.

Imuran got me to full remission, I spent years avoiding it, but I'm very glad I took the plunge.

stereofidelic89 said...

I can tell my UC is driven by stressors in my life. I needed to shut out all of the negative thoughts and existing opinions I had on myself and my life to move forward. The mind is a powerful thing, but I was listening to too much negativity and needed to learn to shut it out and follow my faith.

stereofidelic89,

If you don’t mind me asking, could you please let me know how you managed to remove negative thoughts? This may be one of problems for me along with anxiety and stress.

If you have already answered above question already in any other thread(s), could you please point me to those?

Appreciate your response.

Fruitgirl: I'm not sure which pred comment you are talking about but it probably had something to do with me estimating that 90% of people can't ever get off the pred and stay in remission. Even though I did kind of make up that percentage up I still stand by it. I'm really glad you are in the 10% but from what I have seen of visitors to this site and my past experience with an autoimmune disease and pred, almost nobody goes into remission and gets totally off the pred. All of these people have to continue taking pred at some dose for a very long time or if they get off it completely they soon suffer a relapse and have to get right back on it. Prednisone often does more damage to your body than UC does if you have to continually take it.

Having said all of that, the reason I started this thread was to see how many people actually went into remission due to pred (or something else), without having to be on it for a long time. I am seriously considering giving pred a one time shot for about a month, like you did. I would be ok with that and using Asacol for the rest of my life to stay in remission. I just refuse to take pred for months or years, even if it is just 5mgs per day. I would give it the one time shot for that month and then be off it. If it didn't put me into a remission similar to yours I would never do it again. I am also very much against the immunosuppressents and the biologics as they also have nasty side effects and long term problems. Many times they give you all that and don't even work, of if they do, they won't work the next time you need them.

Soystud, I personally do not think the severity of someones disease is an issue. I was diagnosed with severe and have gotten it under control in less than a year, my uncle had it severe, more so than me and was on Remicade, put in the hospital on IV's, etc... he's a big guy, and he's been in 100% remission for 3 years now. He looked to God fully, and got off of his medicine.

RayOfHope said...

stereofidelic89 said...

I can tell my UC is driven by stressors in my life. I needed to shut out all of the negative thoughts and existing opinions I had on myself and my life to move forward. The mind is a powerful thing, but I was listening to too much negativity and needed to learn to shut it out and follow my faith.

stereofidelic89,

If you don’t mind me asking, could you please let me know how you managed to remove negative thoughts? This may be one of problems for me along with anxiety and stress.

If you have already answered above question already in any other thread(s), could you please point me to those?

Appreciate your response.

Hey RayOfHope,

Keeping a positive state of mind is tough enough for anyone, but for us, and me personally it was something I had to work to overcome. All of these negative thoughts that came after hearing negativity constantly from doctors or reading it on my disease itself, consumed my mind and left me achy.

I had to shut all of this out, and for me personally this meant changing my frame of mind, from being stressed or consumed by my own point of view all of the time, and just let it go and keep doing the positive things I was doing, so to get better. So i tried to I keep busy, because staying home all of the time in my safety net allowed for these negative thoughts to continue. I went out with friends, volunteered, got involved, went shopping, treated myself to nice things when I could...

Most importantly, this disease made me realize that I needed to be a bit more appreciative of my life, and my environment and how blessed I was and am. I started doing things to help others more, listen and learn more and go out of my way, and it made me see that my situation wasn't any worse off next to others I helped/was surrounded in my life. Because even though I was broken physically, I improved mentally, and restored my strength and faith, listened to my heart and learned to quiet the mind when I needed to.

I wish I could explain it better, but the best way to say it is that I had to quiet my mind when necessary and not allow of the negativity in, so I could focus on what I wanted to do, and what I felt. :)

Soystud: I just don't see hardly anyone else on this site, or in my past autoimmune experience, who has gone into remission with pred and got off of it completely. I'm not saying it doesn't happen. I know it does. I'm just saying that for every 100 people on this site who have been on pred, about 90 of them have not been able to achieve remission while getting completely off of the pred and not having to have to go back on it due to a relapse. Maybe I'm not adding up the numbers correctly but it seems like post after post after post after post are from people who have been on pred a long time and went right back into a flare before even getting totally off of the med or having a flare come right back soon after dropping the pred. I know there are plenty here where prednisone works but very, very few who are able to completely get off of it and stay in remission without it. If prednisone put a lot of people into remission and were able to get off of it completely there would be a lot less posting on this site. It's a constant battle for most, but not all. I definetly agree with you that the severity of the disease has a lot to do with it.

Post Edited (garylouisville) : 9/11/2012 7:04:04 PM (GMT-6)

To each his own i'd say, I've definitely surpassed my goals of improving my diseased state in a short period of time, thanks to changing my frame of mind.

And if only prednisone really worked like that. When I was on the stuff, I felt dead anyway, but I got the hang of it, and maintained a balance for a while, until realizing that this couldn't be forever. =/ But that would be a terrible thing at the same time, to have a synthetic hormone take control of your body, after the drug -just to make disease disappear. This is where the adrenal glands come into play.

What I finally realized after a few months on the stuff was that I had hit a dead end, more than 8mg didn't make me any better or worse, and thats when I decided to adjust my diet, add some supplements, and wholla! I realize this doesn't work for everyone. But that's why its important to plan for the next step while you're on the prednisone, just in case. =/

Why are you ignoring my post about Imuran?
I achieved full remission, lowered the dose, changed my diet and exercise routine and am in great health after a terrible ordeal in the hospital.

Fruitgirl:

I respectfully disagree with your assumption that the people on this site are just the unlucky ones who have trouble managing their UC. UC is an autoimmune disease, meaning it has no known cause and no known cure (this includes all treatments, including prednisone (except for that fact that most literature specifically states that surgery is the only cure)). All of the literature states that it is a chronic life long condition with periods of active disease and periods of remission. I'm certainly glad that you and a handful of others attained remission from pred and were able to get off of it completely but I have never found anything which states that prednisone is a "cure" for UC. Now I realize that you didn't use the word "cure" but that's kind of what we are talking about here. If your UC is gone due to a medication that you no longer take, you are in effect "cured", at least temporarily anyway. If you look at the Healing Well home page it is not only obvious that UC'rs seem to be a dime a dozen but that there are a whole lot of other autoimmune diseases where people have chronic life long problems. That's the nature of autoimmune diseases, they are chronic and most people rarely find a treatment that will put them into a treatment free remission. Are there people who attained a med free remission who no longer visit here? Of course there are but there are also tens of thousands, if not hundreds of thousands, who have chronic problems that have never found this site for one reason or another. I'm actually considering giving prednisone a one time short shot. It would be worth it if it can do to me what it did for you and a few others but I realize those odds are small. Pred really isn't that bad if you get on and off it short term but when you take it for long periods, even at small doses, it usually does more harm than good.

As far as the enemas go you do have me confused with someone else. You and I had talked about it before though. I have never done them yet and am trying to keep an open mind for my next trip to the doc at the end of Decemeber. You kind of had talked me into them before but then afterwards I saw a whole lot of posting on here from people with a wide range of complaints regarding enemas. Since I'm not really doing so bad compared to most of the people here I would refuse to do the nightly enemas unless there was a very high chance of 100% success in doing them. My only problem right now is urgency and about 6-8 BM's per day. Other than that I have zero symptoms. If I'm going to do an enema every night they darn well better make me a completely normal person during the day. I mean like 1-2 BM's per day with no urgency, basically putting me into an actual remission. If they can't make me a normal person during the day then I don't see the point of putting myself through nightly enemas since I don't have any of the major problems that most UC'rs do.

garylouisville said...
Soystud: I just don't see hardly anyone else on this site, or in my past autoimmune experience, who has gone into remission with pred and got off of it completely. I'm not saying it doesn't happen. I know it does. I'm just saying that for every 100 people on this site who have been on pred, about 90 of them have not been able to achieve remission while getting completely off of the pred and not having to have to go back on it due to a relapse. Maybe I'm not adding up the numbers correctly but it seems like post after post after post after post are from people who have been on pred a long time and went right back into a flare before even getting totally off of the med or having a flare come right back soon after dropping the pred. I know there are plenty here where prednisone works but very, very few who are able to completely get off of it and stay in remission without it. If prednisone put a lot of people into remission and were able to get off of it completely there would be a lot less posting on this site. It's a constant battle for most, but not all. I definetly agree with you that the severity of the disease has a lot to do with it.

Are we splitting hairs here gary? Yes have been on prednisone on and off again through out my 14 years of the disease but I have gone for YEARS between prednisone doses and of the people I know around here and from my doctor that is quite common. It's actually quite rare for me to do a prednisone taper (properly tapering) and then need to go right back on it. The only times I have gotten off and right back on is when the doctor wouldn't listen to me and made me taper too quickly but when I can properly taper over the course of 6 to 8 weeks I can be off it for years before I might need it again. As for side effects, I think it depends. From what I've read and from what my GI (who I like and trust) tells me the side effects of prednisone for me are FAR less than if I just let my disease flare constantly. The damage it does to my colon, along with the other side effects of weight loss and not absorbing my food for proper nutrition are far worse for me and my body than the potential side effects of prednisone for me, so I disagree that taking prednisone is automatically worse for you than just dealing with the disease.

What is this thing called remission? hehe, one day....

Fruitgirl: If I were in your shoes I would do exactly what you are doing. I actually encourage you to not let good health get the best of you in the future and cut back on what has been a great success, opening up a crack in the door for a relapse. Please stick with it. As I mentioned before, I have been considering taking a short month or two stint of prednisone along with my Asacol and alternative things, continuing with them after the pred taper - as you have done. If the pred doesn't do it for me then I would still taper completely off as this would be a one chance thing only. I am not a professional but I actually have been around the medical field for decades and have had decades of personal experience in dealing with two autoimmune diseases, with a lot of that involving prednisone knowledge. With my first autoimmune disease I took prednisone dosages that would put you in shock (40mgs is nothing!). I have seen first hand the results of people who have taken prednisone for years and years and it has devastated their bodies and given them all sorts of things, such as diabetes and all kinds of bone related problems, not to mention all of the health conditions which come from turning a 150 pound person into a 250 pound person. My condition is good enough that I don't seriously consider surgery at this point but I must say that if someone is having uncontrollable symptoms and the only options are long term use of prednisone, immunosuppressants such a Immuran, or the biologics, these patients are way better off doing the surgery than doing these things long term as they will do more damage to you long term. My gastroenterologist comes highly recommended from several different sources and he hasn't even mentioned prednisone to me. From the knowledge I have already and his not mentioning prednisone at all (he hinted the next oral medication step after Asacol would be Imuran) I just assumed he isn't a big believer in prednisone as he just skipped over it as an option.

Butte1: I'm glad prednisone also works on you and that you are able to get off of it completely and stay in remission for years. I wish most could say that but I just don't see much evidence of that myself. If I decide to try the pred I would do it exactly like you - 6-8 weeks and be off of it. If it didn't do the trick then that option goes into the trash can forever. I hope my post to fruitgirl helps you understand my feelings on long term prednisone use because I actually agree with you to some extent in that having really bad symptoms for years isn't good at all but being on pred for years does many bad things to you as well. Neither is a good option.

Soystud: I'm not looking for any guarantees. In fact, I think that is my point that there really are no guarantees with any of the treatments. It's autoimmune and the doctors themselves are very much in the dark as to what to do. They can't treat the cause because they don't know what the cause is so all they do is try to control the symptoms. In a way it is a life sentence but then in another way it doesn't have to be. I was in this same boat before for years with another autoimmune disease. The doctors were basically hopelessly lost and worthless. I had to gain knowledge myself in order to treat myself. It took me 9 years but in the end I beat my first autoimmune disease (so far, going on 13 years now)and it was me who did it, not the doctors. I'm trying hard to gain knowledge on my UC in order to put it into remission as all the doctors can do is act like used car mechanics and try this and try that until they finally hit on something that works. I can do that by myself (ok, I can't write prescriptions). My UC bums me out considerably but I must say that I am actually doing better than most and from what I have read here, many would probably love to trade places with me. Thanks for your well wishes. I wish everyone here the best at beating this horrible thing with whatever works best for them.

Post Edited (garylouisville) : 9/12/2012 7:56:53 PM (GMT-6)