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Am I ever gonna get well? I am tired of taking medicine.

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Crohn's Disease
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Posted 8/22/2007 12:55 PM (GMT 0)
Will this ever get better??? I started tapering last month and that did not work out so well. So on 8/10 my GI put me back up to 20mg of Pred and 50mg of Azathioprine and told me to start tapering again at 1 week. I started that on 8/18 and by the next day I could feel the pains creeping back so by 8/20 I went back up to 20mg Pred. (I have a trip this weekend and I don't want to hurt) Anyway, starting last night again, the pain is back. It feels as though there is an active alien in my guts, sometimes it is just uncomfortable and making a lot of noise and other times it hurts pretty bad. Not near as bad as it was before starting the pred. but still very uncomfortable. I don't like taking all of these meds. I really am a more natural healing kind of person. I exercise, take supplements and eat pretty decent most of the time. I just want to be better. What I want to know, is what should I expect out of a true "remission"? And, what is my next option after these current meds don't work???? Should I be requesting something else??? I go in for blood work on 9/4 and a doctors apt. 9/11, should I just wait it out or call him? I just want to be well. I would also like to not be bloated and making awful noises all of the time, it is quite embarrassing! eyes
Posted 8/22/2007 1:09 PM (GMT 0)
You are on the beginer meds, so it is going to take some time. It takes awhile for them to build up in the system. At one point in time I was on 250 mg of azathioprine and 80 mg of pred a day. I was throwing up so much (3-5 times a day) and had such a fast trasition time that oral meds did not work for me (pooping about 30-35 times a day). I tried remicade didn't work for me, in fact gave me lupus. But I got methotrexate by shot and after about 3 months I felt better!!!!!!!!!!!!!!!!! It took me two years and many med changes.
Posted 8/22/2007 6:00 PM (GMT 0)
I was told by my doctor I will be on meds the rest of my life.  I pretty much have been since diagnosis.  Now I am on Remicade and they UPPED my other drugs?!
Posted 8/22/2007 6:59 PM (GMT 0)
50mg of azathioprine is a low dose and probably not enough to be effective.  Typically your dose will be somewhere around your body weight (eg, a person weighing 150lbs would take 150mgs).  And it takes a couple of months to really start helping.

Your dose of prednisone is also relatively low.  Prednisone usually works pretty quickly, like within a few days to a couple of weeks, but many people start with 40 to 60 mgs of prednisone per day.

You may need a somewhat higher dose of each med, and then a more gradual taper of the prednisone once the azathioprine has had time to start working.

Posted 8/22/2007 7:42 PM (GMT 0)
Hi I agree with the above your doseage is low and the Dr. probably needs time to see if you are doing ok on those doseages.I know the noisy thing I gurgle too but I do not let it bother me because there is nothing I can do still working my way into the meds. so I understand how you feel. Even though we would not like to take the meds it does seem to help. lol gail
Posted 8/23/2007 1:52 AM (GMT 0)
Ok, just to bring the rest of my story in to play..... I actually started on 40mg of Prednisone and tapered down to 5mg however, the pains came back at around 20mg. so that is why he put me back at 20mg when he started me on the azathioprine. I just started on the azathioprine on the 10th. I also take sulfasalazin and have been taking that since May (I think). I guess I should not really complain. My only problem is the pain, I don't have D or C problems nor have I had any nausea in a long time. I just have a hard time going through my normal day with that pain. It is such a pain. HAHA! Thanks for all of your comments though. I did basically just start treatment, it is just that I have been ill for more than 3 years so it feels like I should be better by now.
Posted 8/23/2007 2:14 AM (GMT 0)
I was on prednisone for 16 months. I was like you, I would get down to 20mg and the pain would start up again. After quite a few med changes and dosage changes, we have the right combination. I still am not in full remission, but I haven't had to be hospitalized for pain or a flare since December 2006. Hang in there, once you have enough meds built up in your system, you should start feeling better.

Debbie
Posted 8/23/2007 1:38 PM (GMT 0)
According to the American Journal of Gastroentrology people average about 7 years of being sick before they are dx.

Yes you will always be on meds.

Posted 8/23/2007 1:52 PM (GMT 0)
If you are interested in natural healing methods, you should look into the Specific Carbohydrate Diet. It has a pretty good track record for folks with Crohn's. If you respond well, you may be able to reduce meds successfully.
Posted 8/23/2007 2:09 PM (GMT 0)
But the SCD has also caused almost fatal GI bleeds.  So please just be careful.
Posted 8/23/2007 2:16 PM (GMT 0)
well, I decided to post a new topic to find out more about the scd. I am currently in the process of reading about it and it just sounds so restrictive and then all of the fresh fruits and veggies sound painful. Maybe just a modified scd would do? Who knows, I will have to do more research.
Posted 8/23/2007 2:25 PM (GMT 0)

MMMNAVY said...
But the SCD has also caused almost fatal GI bleeds. 

I don't see how that's possible and I've never heard of any extreme adverse effects. Please give us your evidence supporting that statement.

ngwen: It is restrictive. When I was on it, I had a coworker say, "I don't see how you can eat like that." My response was, "If you had the choice of following a restrictive diet or becoming so ill you have to have your colon removed, which would you choose?"

People who are new to the diet and are suffering from acute flares have to be very careful with their food choices... things like raw veggies and fruit, nuts and even the almond flour can be more than a compromised digestion can handle. People who have been on the diet a while and have healed or are only experiencing mild symptoms can tolerate a wider variety of foods. And everyone has individual reactions to take into account. I have problems with dairy and was never able to tolerate the homemade yogurt so many others enjoy.

If you decide to try the diet, all veggies and fruit should be well-cooked and perhaps even blended or mashed. Nut butters are easier to digest than solid nuts. These types of tips are in the book.

Posted 8/23/2007 2:28 PM (GMT 0)
Personal experience. My main concern is the newbies are safe and don't get snake oil.  If it works for you then gravy.  I just wanted to caveat it with that is not all sunshine and roses.  eyes
Posted 8/23/2007 2:39 PM (GMT 0)
I like to take all suggestions into consideration and make my own choices because not everyone is the same soooooo not all treatments work for everyone. There is so much research out there that is done different it is hard to make a decision of which is the "right" research.

The book you are referring to is.........."Break the Vicious Cycle"??? I ordered it from my library and will get to reading it soon and maybe it will give me the information I need to put some more change in my new CD life.

Thanks for all of the info. If you have more, keep it coming!
Posted 8/23/2007 2:55 PM (GMT 0)
I never said it was "sunshine and roses," but I'm a firm believer dietary modifications can make all the difference in treating Crohn's and UC. If you'll reread my posts, you'll see I never made any claims of a miracle snake oil cure. It's a diet. No one's selling anything and no one is profiting from it. It works for some folks. It works extremely well for some. It doesn't work for others. But there's no harm in educating yourself on the options and having a careful trial.

I'm sorry if your experience was negative. In some ways, I didn't feel it worked completely for me either. But I don't let my personal experience keep me from at least making others aware of the option. I actually follow a modified version of the diet that's even more restrictive.

ngwen: Yes, BTVC is the book. It will explain everything better than the Web site. I've read and reread mine, highlighting the key points.

Posted 8/23/2007 3:25 PM (GMT 0)
I just want to caveat it with that it can be very dangerous.
Posted 8/23/2007 5:49 PM (GMT 0)
It would be helpful if you would share your experience so people could make an informed decision from fair and balanced input.

To the original poster, if for whatever reason you choose not to try the SCD, you may also want to look into Jini Patel Thompson's book "Listen to Your Gut." Jini is a Crohn's patient who has learned - through trial and error - to control her disease and maintain a state of good health. She discusses meds, supplements, bodywork, lifestyle modifications and she offers several suggested diets, depending on your symptoms. The diets become more permissive as symptoms abate. I've talked to her via email and she's just an awesome, supportive lady.

http://www.amazon.com/Listen-Your-Jini-Patel-Thompson/dp/0968542107/ref=pd_bbs_sr_1/105-8488397-9114864?ie=UTF8&s=books&qid=1187891307&sr=8-1
Posted 8/24/2007 2:14 PM (GMT 0)
princesa, I will look into that book as well. I love to read more about it so that I can try to see what will work for me.

To Everyone, thanks for the suggestions, it sure helps me feel like I still have some options other than meds. even if in the end meds are the only thing that work. I will keep my open mind and try to have a better outlook on the whole thing.
Posted 8/24/2007 2:21 PM (GMT 0)
ngwen, meds certainly have their place - particularly when you're experiencing active flares. But I encourage everyone to do the research. There's so much information out there and so many helpful supplements... as I see from your signature, you're aware. Another great informative book is Optimal Digestion. It's a huge book chocked full of information to help folks who suffer from all types of digestive complaints return to health. Out of all the digestive health books I have - and there are a bunch of 'em - it's probably my favorite and most inclusive.

http://www.amazon.com/Optimal-Digestion-Strategies-Achieving-Digestive/dp/0380804980/ref=pd_bbs_sr_2/105-8488397-9114864?ie=UTF8&s=books&qid=1187965241&sr=8-2
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