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how long does it take to find the right treatment??

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Ulcerative Colitis
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Posted 6/22/2014 12:30 PM (GMT 0)
I have had UC for quite some time now, but I was only diagnosed around 4 months ago, it's very severe (I honestly can't remember the last time I had a solid poop). My doctor has tried about 6-7 different things now and they either make me more sick or don't make a difference at all!
I'm just wondering how long it took for any of you to find something that works for you? I feel like I've been switching medications forever trying to find something that works mad
Posted 6/22/2014 1:57 PM (GMT 0)
10 years !
Posted 6/22/2014 2:09 PM (GMT 0)
I was lucky and responded very well to Lialda and enemas. I was better within a few days.
Posted 6/22/2014 2:13 PM (GMT 0)
Had UC for almost 5 years and been in a constant flare ever since, so Im still searching. Though Im pretty sure Im an exception rather than a typical case. Im even onto the trial drugs now : p
Posted 6/22/2014 2:24 PM (GMT 0)
It's kind of like winning the lottery. Some win on their first ticket. Some don't really win for a long time. I've never reached remission once in my four years but I have been getting better and better and better to the point where I live an almost totally normal life now. Yesterday I went 23 hours without a BM at all. Many people would say that I am in remission but I have a pretty strict definition. If I'm not totally 100% normal then I'm not in remission.
Posted 6/22/2014 3:33 PM (GMT 0)
I've been doing the same treatment/maintenance (Asacol oral/salofalk retention enemas) for over 25 years, but it took a while for things to improve and have me taper the enemas. I did try getting off them, but that didn't last too long. It took 3 years for me to get the enema tapering/symptoms taper figured out.

My suggestion to emma.... when you post a question about meds, and that you tried different meds...please include which ones they were and why.

q
Posted 6/22/2014 3:50 PM (GMT 0)
5 years. Most people do get into remission much more quickly than that, however.
Posted 6/22/2014 4:34 PM (GMT 0)
It took me 10 years (had it 14 years) to stop being in denial that the meds were really not working. When my GI said my next step was biological meds I put my shoulder to the wheel and got very serious about giving diet modification one more final try.

I think I got lucky because something positive started to happen. Not overnight but enough good results to keep me trying. The last 2 years have been the best in the last 14.

You (and I) and about 1/3 of UC people do not respond to oral meds. No one knows why.
I strongly suggest you add a melamine enema every night and see if you get symptom improvement.

I stopped listening to doctors who said food has no impact on IBD. For me it does. I didn't ask for their permission I just started trying eliminating different foods to see what helped.

I also tried many, many supplements people mentioned here. Most gave bad results, some did nothing and a very few gave positive benefits.

The supplements that were good for me: VSL#3 probiotic, grape seed extract pills, wild oil of oregano gel caps, clay water, wormwood extract, reuterii "pearl" probiotic.

Good luck.
Posted 6/22/2014 9:59 PM (GMT 0)
That's a loaded question. I have had response to some medications very quickly and much slower with other medications. Finding what works for you also might be a combination of things, such as diet and 5ASAs. it's really hard to say what is going to work for who. I was lucky, I responded to Asacol right away and went from moderate inflammation to no inflammation very quickly. When Asacol stopped working effectively for me, I had a very hard time getting into remission. Luckily i waited it out and eventually got into remission with 6mp but i was getting prepared for the worst because i had been on it for about 5 months with very bad blood results and it was starting to look dismal. Right when I was about go go to biologics, I went into remission unexpectedly... now i am having mild symptoms and nothing seems to make them go away. It seems like some people respond to medications and others might never respond to anything. I've seen a few cases like that here on HW over the years. Some people never go past 5ASAs and they have great luck treating UC for years and years that method, then there are people like me who seem to have a great response but it's short-lived. It's so individual. I really hope you find something that works for you soon.
Posted 6/22/2014 10:16 PM (GMT 0)
I was incredibly fortunate, I was diagnosed at the end of Feb this year, and I think by the end of April I knew I was heading for remission, so I was just lucky really. What drugs have you tried? and what are you currently taking?
Posted 6/22/2014 11:09 PM (GMT 0)
Since you were only diagnosed 4 months ago....does that mean you have tried 6-7 different treatments in 4 months? That doesn't really seem like enough time to have tried that many treatments and given them all enough time to see if they would really work.

My own experience was that after my initial diagnosis, my doc prescribed some suppositories that put me into remission pretty quickly. That remission lasted about 4 and a half months or so, and then I found myself in a BAD flare. The few treatments we tried gave me no relief, and I got too sick too quickly to try any others before opting for surgery. One thing I have learned on this forum is that everyone's UC is different...from causes, to symptoms to how we find relief. I hope you get yours figured out quickly!
Posted 6/23/2014 1:50 AM (GMT 0)
Never :(
Posted 6/23/2014 1:47 PM (GMT 0)
I'm working on 4 years of nothing working (except Prednisone). Personally, I will not go another year feeling like this all the time. I'm trying my last medication soon and if I does not work, I'm getting surgery and moving on with life.
Posted 6/24/2014 8:37 AM (GMT 0)
I think it would be helpful if you could let us know what you have tried. 6/7 options in 4 months sounds like a lot and some meds take a while to kick in.

I went straight on pred when diagnosed over 3 years ago, whilst also on pentasa. I flared again within 6 months and back on the pred for 14 weeks. I wouldn't say I went into remission after that, I had no d but my mornings were bad and I still had a degree of urgency.

I went on to aza in march 2012 and also changed from pentasa to mezavant. I was in remission {no symptoms at all) from jan 2013 until only a few weeks ago. I've upped to nightly enemas and credit this with keeping everything in check and feel I have proctitis now.

Long story short, it's all about trial and error. And patience. Until the aza, I had convinced myself I was steroid dependent but this seems not to be the case.
Posted 6/24/2014 3:35 PM (GMT 0)
2 yrs and have not found it yet
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