I have never had remission, not once what's up with that?

Never had remission at all? Just sucks, anyone got any suggestions on how to achieve it? One I thought with colazal I had a few dry farts, but not dry stool. I"m on asacol, thinking of switching....again. Is there any new drug to ask for?

Sorry I have no words of wisdom for you. I was in a flare for 6 straight years and was hanging on by a thread. I had surgery to be done with it for good. I hope you can finally achieve remission someday very soon. It wasn't in the cards for me.

And it was never my GI's fault. My UC was just totally resistant to all the meds....tried them all. I did just notice your signature. Nine asocol pills probably isn't going to do it for you if you have been flaring for that long. New doctor time I think.

Not trying to one-up you but I was 10 years with no remission. Like you I depended on GI's and Rx meds but finally came to the conclusion that I would have to be in charge of my UC when I was facing my final choices of either surgery or biological drugs.

For me it took 2 years of diet modification to achieve remission. Yes I still take meds because if it ain't broke don't fix it lol. These same meds did nothing for my UC after taking them a year so I know for sure that diet mod. is the reason for remission.

If you've only taken Asacol and Colazal then you have several more meds to try: First of all mesalamine enemas are #1 for #2 (a joke), then theres Lialda, Entocort (a "good" steroid), probiotics (VSL#3), 6mp, etc. It's something to ask your GI "What can I try next?", that's what they get paid for.

And when you run out of med options look on this forum for alternatives like: diet modification, fecal transplant, LDN, etc. Of course these can be done now or along with meds.

It's your colon and your life. Be proactive.

I really think you should try 6mp or imuran. I think the reason you haven't had remission is because you're unwilling to try other medicines. The only approaches you have tried (as far as I remember) are diet, supplements and antibiotics. I know you're also trying LDN and I hope you see some improvement with that but maybe it is time to try 6mp or Imuran, I don't know how you could go as long as you had without a dry fart :) I couldn't do it. What would you try in placement of Asacol? You've tried Colazal. Have you tried Apriso? it's a lower dose but it seems to work well for some people. You could try Lialda but it's so similar to Asacol, I am not sure if you would notice a difference. Are you using the mesalamine rectal meds? Steroid rectals? Oral entocort or pred?

ssarow said...
I just want to make sure I am getting this right that you have NEVER been in remission? Sort of angers me that your GI is not doing enough.

Why do you find that hard to believe? I have had this since 97' and never been in remission. Has nothing to do with the GI docs. Had a better last two years but not a remission.

It's not from a lack of trying meds. I have done everything under the sun along with sticking my childs feces and my wifes up the rear with enemas. Some people just have a more difficult form of UC that responds to very little. Mine only responds to remi, but I still start getting symptoms back at 5 weeks and if I don't do my fiber daily my urgency is bad.

My days are getting better and not as bad as when it all first started. I think LDN has helped (I can be around people who are sick with colds and I won't get it! Whereas every month I was having a cold then phenmonia!)

Just a few different probiotics I'm taking help. The Flora Balance I'm on now, helps. The Saccharomyces Boulardi MOS helped, dairy and gluten free helps.

 I feel like Dr-A we've done just about everything! I've had my fillings in my teeth removed, colonics, accupuncture as well as regular UC meds. I did a 12 weeks "special cocktail" of vitamin drip. I did 2 years of antibiotics for Lyme's disease. I did the Combo Antibiotic Therapy as well.

I think I will try a steriod enema next. Maybe this will bring a little relief.

 Thanks for everyone responding. This sure is a good forum to talk to other about UC and get support!

 Happy Easter a little early!

ssarow said...

quincy said...
ssarrow...you don't know the history of therearemiracles obviously. I see you from 2011 with ONLY 44 posts. You haven't been around a lot it seems to know what her doc has actually done. Maybe ask what meds have been used...???

Basically, it depends on what meds one wants to try from 5ASA to the megaimmunomeds, to worms to fecal implantation.

If one has other health issues, that can play hugely on what goes on with flares.

Otherwise...surgery.

Quality of life for functioning is certainly a determiner for me, but I wouldn't try all the meds that are available based on many side effects and probable non-longterm control.

q

Yes because post count and join date certainly make someone entitled to an opinion

Thats precisely what I asked if this is a bad flare for that long. I'm not sure about you guys but my GI is one of those that would be extremely concerned if I was flaring for that long. Heck even if I was flaring for a month.. Thats why I said that.

 

 

LOL...you need to have joined at least lets say 2005...and have a hard case of UC...then your opinion counts...if you're not suffering then you're small fry. lol ;)

Not trying to "compete" with others that have also had very long flares, I've never been in full remission either in the entire 21 yrs I've had IBD and I'm talking about the pooping aspect since I don't have any of the extraintestinal manfifestations like RA or osteo, (only a little issue with skin but it's liveable).

But my bowels have definitely been active with disease and symptoms the entire 21 yrs I've had it (granted I do have complications with my perianal crohn's skin tags) and I'm also intolerant to the oral RX used to treat IBD so that along with the perianal complications of my CD doesn't help....my CD is located (and has been the entire time) in my colon---aka--crohn's colitis for those that aren't familiar with my history.

I agree that my GI would be very very concerned if I had not had a remission in 7 years. I was not in remission until I started Imuran. For me remission is normal - no symptoms.