never been in remission

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

turnpkegates
Regular Member


Date Joined Jan 2009
Total Posts : 177
   Posted 10/19/2011 3:03 PM (GMT -6)   
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?

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 7508
   Posted 10/19/2011 3:23 PM (GMT -6)   
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.
*******************
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18012
   Posted 10/19/2011 5:20 PM (GMT -6)   
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!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3793
   Posted 10/19/2011 5:51 PM (GMT -6)   
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.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel, mesalamine enema as needed
Spinach & sunflower seeds daily, (1) VSL#3 nightly

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3137
   Posted 10/19/2011 5:54 PM (GMT -6)   
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.
diagnosed 2002
Asacol
Remicade-10mgs/kg- from 4/07 thru 1/10
Humira- 1/10- present
Imuran- 150mgs/day
homemade kefir

Luv2Jump
Regular Member


Date Joined Nov 2010
Total Posts : 123
   Posted 10/20/2011 12:10 AM (GMT -6)   
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.

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 10/20/2011 8:13 AM (GMT -6)   
 
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
 
What do you think?

Dx - UC 09/2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.SCD Diet of proteins,veggies,salads, fruits, & protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g,L-ArgEthylEster,chia seeds,VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance.Transdermal LDN is working! I feel great!

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 10/20/2011 8:33 PM (GMT -6)   
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.
UC DXed July 2006, after living in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in MX. Severe case. Have tried a page long list of medicines, diets and supplements.
Current daily regimen that is working well:
4 x VSL3 DS, 1-2tbsp psyllium seed powder, oral LDN, gluten/sugar free, limited dairy, beans (butyrate). Food journal helped a lot!

Judy2
Forum Moderator


Date Joined Mar 2003
Total Posts : 9497
   Posted 10/20/2011 10:24 PM (GMT -6)   
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.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. In remission since 2006 with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2507
   Posted 10/21/2011 12:59 AM (GMT -6)   
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.

jazzlyric
Regular Member


Date Joined Mar 2011
Total Posts : 105
   Posted 10/21/2011 5:37 PM (GMT -6)   
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.
I treated my UC holisticly for 12 years whith good results.
4-14-11 all hell broke out and I ended up with a full on sever flair for the first time. 15 to 25 BM's with blood a day, coupled with sever malnutrision.
Went from 165lbs to 127 in 6 weeks.
Preg 60mgs a week with a taper.
Asacol 4800 mgs a day.
Diazapam 3 Mgs for sleep.
Calcium for severe hand cramps.

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 10/21/2011 8:31 PM (GMT -6)   
 
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?

Dx - UC 09/2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.SCD Diet of proteins,veggies,salads, fruits, & protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g,L-ArgEthylEster,chia seeds,VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance.Transdermal LDN is working! I feel great!
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 30, 2014 10:47 AM (GMT -6)
There are a total of 2,255,361 posts in 250,865 threads.
View Active Threads


Who's Online
This forum has 157717 registered members. Please welcome our newest member, Lynne2681.
389 Guest(s), 20 Registered Member(s) are currently online.  Details
tooyoung4this, PDL17, chewman, hypoHashimoto, Utahgal, Dixie6, Backtolife, opugirl, Scaredy Cat, Admin, cccmama3000, Nina B, KatieBwithUC, lesweet1971, Old Mike, eat2bwell, AZYooper, teddydog, Myself 09, Manda30


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer