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How long have you gone without remission?

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Ulcerative Colitis
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Posted 2/15/2009 2:35 AM (GMT 0)
I have been in a terrible flare now since October, after having a wonderful summer of remission. Meds aren't helping, and the enemas won't stay in.

I have no problem keeping the suppositories in, but I know the enemas are better for me.

Can you tell me what's the longest you have gone with no remission at all?

Hubby wants to plan for summer vacations but I won't dare not knowing if I can go or not. As it stands now, I am lucky to be able to go out to dinner 1/2 mile away, let alone travel out of state.

Also is it odd, that my stool is not loose at all, but rather hard and small, but lots of blood?

 

Posted 2/15/2009 2:53 AM (GMT 0)
I flared with no remission for two years.
Posted 2/15/2009 3:06 AM (GMT 0)

Diagnosed last June and flaring every since - tried about all and now on Prednisone.  Just have to find what works for you I think - we are all so different and the extent of your UC.

ElalineNY

Posted 2/15/2009 3:10 AM (GMT 0)
Five years.
Posted 2/15/2009 3:51 AM (GMT 0)
I've been flaring since I was diagnosed in 07. I have been better at times and much worse at times but I have consistently seen blood and mucus. Some days I go 2x, others I go 15x.
Posted 2/15/2009 4:00 AM (GMT 0)
2 months on and 2 off for the last year or so...getting really tired of this.
Posted 2/15/2009 4:05 AM (GMT 0)
about 5 years now. Tried salofalk, prednisone, cortisone, vsl-3, natural stuff, remicade and humira.

Nothing has worked so far.

Oh, and the prednisone led to me getting pancreatitis for a few months to boot.

Still fighting though...trying to avoid surgery....
Posted 2/15/2009 4:05 AM (GMT 0)
Like Judy, I have also been flaring for 5 years.
Posted 2/15/2009 5:11 AM (GMT 0)

 

I've been flaring since diagnosis, two years ago. But the longest that I was flaring badly was probably about 3 months. The rest of the time, it has been very mild with limited symptoms. Sorry to hear you're having trouble getting out of this flare.

Have you checked with your doctor about maybe changing your meds or adding something to your current mix? What are you taking right now? If you're on Asacol, you can take up to 12/day. You could also ask about using Cortifoam, a steroid enema. Since it's foam, it may be easier to hold in than the liquid enemas.

I've had the hard, small BMs with lots of blood before too.

Posted 2/15/2009 7:00 AM (GMT 0)
I was diagnosed in Jan 08, but had the symptoms since Aug of 07 and still havn't gone into a remission. I can't even remember what it feels like to go to the bathroom normally. I just bought some probiotics today, maybe they will help? I am now taking Lialda, canasa, and starting the cortifoam also.
Posted 2/15/2009 9:45 AM (GMT 0)
I didn't know I had Colitis with my first flare. It lasted six months. I should have known that something was seriously wrong. However, I didn't want to see a GI, because I didn't have insurance at the time. The doctor at the clinic said I had hemorrhoids and no one in my family ever had an IBD; so I hoped it was just hemorrhoids. I started eating healthier, and hoped the bleeding would go away on its own, which it did.

It was a year later when I got my second flare. This flare was really bad. It too lasted six months. I was stuck on Prednisone, got desperate, and tried fecal transplantation. Thankfully, the fecal transplantation put me immediately into remission.

It was two years later, after having been on antibiotics for a bladder infection, that I got my third flare. This last flare latest three months. Probiotics and diet gradually reduced the flare until I went into remission. I had to experiment a bit during those three months. Now that I know what helps me, I'm hoping to stay in remission. I'll do fecal transplantation if I get another flare.
Posted 2/15/2009 2:04 PM (GMT 0)
     Seven months last year.
Posted 2/15/2009 3:13 PM (GMT 0)
oh jeez, how about flaring in various degrees since diagnosis, in '02. Lame!!!! The last "remission" I remember was during my first course of pred, which pretty much ground to a halt as soon as I got off the pred. So it wasn't really a true remission, in my mind.

Posted 2/15/2009 3:49 PM (GMT 0)

Eva Lou - if the prednisone got you into remission - why did you go off it.  I started it two weeks ago about and would take it at the lowest dose to keep in remission if possible.  Just wondering!

ElaineNY

Posted 2/15/2009 5:45 PM (GMT 0)
Because you can't stay on it forever- I've done 3 courses- the first time it helped tremendously, it took about 6 months to taper off completely. I was ok for maybe a month before flaring badly again- 2nd course, helped somewhat, got horrible side effects & took another 6 months to taper off. Did ok for about 3-4 weeks, got very ill & wound up hospitalized for a bunch of UC related stuff, which kick-started another flare. Did pred yet again, it did basically nothing for UC & I had all the awful side effects. When I was finally able to taper off completely that time, another 5-6 monthsd, I said "Never again!". I haven't flared badly in quite a while, not bad enough to be bed-ridden or anything, but I still have very active UC symptoms. I think you'll be singing a different tune if you become steroid-dependent- it sucks! For me, I was dependent on pred for a long time, Remicade helped me get off it, & while the effects of the Remicade have sort of lightened up, I won't take pred again unless I'm extremely ill, & then in IV form only. Which would basically get me well enough for surgery- prednisone is NOT a maintenance drug, even in small doses.

Posted 2/15/2009 5:49 PM (GMT 0)

Ok - taking your word for it.  I do know several people who have COPD (my husband has that) on a forum that take small doses for maintenance so they can breathe and do ok.  Good to know and I know my doctor does not want me on it for long - not sure his plan for maintenance but he mentioned 6MP or another like it.  I am 68 - steroid dependence does not worry me but side effects do. I feel so good taking it after almost a year of bleeding, getting very ill from mesalamines and enemas, etc.  Hate to think of it it turning against me.  I would NEVER consider surgery unless life threatening - I would have to live with the DD.

Thanks for your info.

ElaineNY

Posted 2/15/2009 6:06 PM (GMT 0)
I don't know if your husband uses inhaled steroids, but my daughter does on a daily basis. Of course I freaked out about it, after having dealt with pred myself, but her doctor reassured me that you would have to take inhaled steroids for about 50,000 years every day to equal the amount of steroid that gets into your body taking a systemic steroid for about a month. When pred works it's really really good- I actually recommend it to people on here! Hopefully, one course is all it'll take. It's the repeated courses & dependency that really cause problems.

Posted 2/15/2009 6:12 PM (GMT 0)

Yes, my husband has to take Advair andhe has lung cancer - that steroid keeps him breathing but there are many with COPD who use prednisone in small doses - like 5 to 10 mg. for years to help breathing - usually in severe cases, of course.  I am just not sure I understand the "dependency" and what that means.  If it works - dependency is ok - if not - forget it!  I am dependent on Xanax for anxiety but I need it so don't mind taking it and having to take it to calm me down.  I only use the recommended doseage but it has saved me a LOT of bad moments!

ElaineNY

Posted 2/15/2009 10:32 PM (GMT 0)
5th dose of Remicade last week, and I think we are out of a flare! First time since last Jan when dagnosed.
This disease is not for wimps.
Posted 2/16/2009 12:06 AM (GMT 0)

No, this disease if not for wimps!  SO very happy I did not have it younger on.  Your daughter will do fine with your support - TLC is good medicine!

ElaineNY

Posted 2/16/2009 2:24 AM (GMT 0)
been on pentasa enemas for about seven or eight months. Trying to get off of them, but it's not so easy. If I can get back to where I was two years, ago I'll consider it remission. But I get confused as to what remission is because with some people, as this disease grows worse, remission standards change. They have for me several times. I guess I have technically been in a flare up for about eight months now.
Posted 2/16/2009 7:41 PM (GMT 0)
I was diagnosed in October 08 but my flare probably started in September. I've never been in remission. What's that like??
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