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never been in remission

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Posted 10/19/2011 3:03 PM (GMT -5)
is this normal? i am almost always bleeding or have mucus or some type of urgency...i think i once went a few months without any...i am going on three years with this disease...drs say i only have the moderate inflammation at the bottom half of my colon near my rectum...but in taking asacol hd and enemas i can't get into remission and not really interested in the more serious medicines and there side effects...anyone in a similar situation or any tips?
Posted 10/19/2011 3:23 PM (GMT -5)
mesalamine enemas? How often? I think you can get past the symptoms with really regular use of the enemas, like daily. I've seen some people on here who use them twice a day, or have an enema at night and a suppository in the morning.
Posted 10/19/2011 5:20 PM (GMT -5)
Looks like we're kinda in the same boat turnpkegates, I've never been in full remission with my crohn's and I'm either allergic or non-responsive to traditional oral RX (though rectal meds do help when needed) which is why I went the alternative route along with altering my diet as mentioned below in my sig....keeping in mind what works for some doesn't work for all unfortunately.

Good luck!
Posted 10/19/2011 5:51 PM (GMT -5)
yeah I was almost 10 years in a flare, no remission just different levels of hell. I truly didn't know that other people did better than I was doing, just kept going to the doctor(s) and trying different meds with little or no improvement.

Like you I decided not to go on the scarier drugs and had run out of meds to try. Thank God that the last time I tried diet modification something worked to slowly get better. Before diet mod. the enemas helped but not a lot, just took the edge off of hell so to speak.

Asacol never helped me either and took a big dose before quitting it. My inflammation on the c-scope never impressed my docs either. My symptoms however changed my life in a very bad way. Doctors only treat what they can see however and never seemed to take me seriously when I described symptoms, or maybe they have no answers so don't respond.

Tips? There are lots of people here using alternative treatments successfully. Diet, LDN, fecal transplant, antibiotic therapy are a few. There are also many popular supplements.

Best wishes. It's in your hands when traditional medicine can't give relief.
Posted 10/19/2011 5:54 PM (GMT -5)
me too, never really been in remission... yes, you could try any of the alternative therapies imagardener mentions. You can also look into surgery. My actual inflammation isn't too bad either, about 10 cm's on the left side. But those 10 cms sure make life miserable some days! I empathize. No tips, per se, but know that you are not alone in this frustrating, frightening place.
Posted 10/20/2011 12:10 AM (GMT -5)
I've been in a flare since being diagnosed almost two years ago. Meds help somewhat but it never fully goes away. The thing that helped me the most was fecal transplant. I did over 20 implants and while I was doing it all symptoms went away except for bleeding. I can never get the bleeding to go away. But as soon as I stopped doing the transplants my other symptoms came back too. It's not practical for me to do transplants nightly so I'm back on the meds and still flaring. I'm starting to accept the fact that I'll be in a flare the rest of my life. I hate having this disease.
Posted 10/20/2011 8:13 AM (GMT -5)
turnpkegates,

I understand your frustration, and discomfort.

Can you make a sig up, so we can see what you're on, diet, etc...

 i can't get into remission and not really interested in the more serious medicines and there side effects...anyone in a similar situation or any tips?

Are you on any diet, like perhaps SCD - specific carbohydrate diet?

How about LDN, low dose naltrexone - very effective and no side effects?

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

What do you think?

Posted 10/20/2011 8:33 PM (GMT -5)
The only two things that ever pulled me out of my state of constant flare since Dx were VSL 3 DS and LDN. Check them out.
Posted 10/20/2011 10:24 PM (GMT -5)
I flared for five years straight, from the time I was diagnosed until I started on Remicade. I did go through all the medications and the holistic treatments also, to no avail. I hope you can find something to help you.
Posted 10/21/2011 12:59 AM (GMT -5)
Opposite, I have one death-defying flare every 2 years, 3 total but I get the upper hand in 2-3 months then heal for months then eat almost anything for a year or more.
Posted 10/21/2011 5:37 PM (GMT -5)
I dealt with my UC holistically for 12 years, then landed in the hospital in April 2011 and almost died...Go figure it, Im now on 1600 mgs of asacol 3 times a day and headed into another flair. This flair seems less violent its been 6 weeks and very little blood or mucus. BM's 3 times a day and formed. I just cant seem to get into total remission. After the last flair, Im kinda freaking out with this one even though it hasn't been to bad so far. Hmm, This disease is making me nuts!...I also have disautonomia, between the two, they take turns kickin my butt.
Posted 10/21/2011 8:31 PM (GMT -5)
Godslyric,

So sorry to hear about your recent flares.

Have you given any thought to adding LDN - low dose naltrexone - to your other meds to see if it can get you inot remission?

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