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does anyone settle for never being in remission?

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Ulcerative Colitis
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Posted 8/16/2009 3:34 PM (GMT 0)
last colonoscopy I had was april 2009 and showed severe ulcerative proctitis. I had a sigmoidoscopy this last thursday and it shows mild inflammation instead of severe now. My dr has taken me off of asacol because it does not work and he says theres no point in taking it if it has no effect. So now I am only using proctofoam and prednisone (been on it for 5 months). Since I am mildly inflammed now, my dr is weaning me off of prednisone slowly. I am still having trouble just being mildly inflammed. I can't see myself being in total remission just from using proctofoam which I was on when I was severely inflammed....prednisone is the only thing that was working to make my inflammation less.  Does anyone just settle with being inflammed instead of trying to go fully into remission? I still have left sided pain, bleeding, and urgency. I Feel my dr is just settling because teh inflammation went down so much.
Posted 8/16/2009 4:38 PM (GMT 0)
Seems to me, he is giving up also. In my experience, I had to be in 'remission' before going off of prednisone and even then I was on some type of maintenance drug which I can say the proctofoam is not. There are other maintenance drugs that your doctor should be trying.
Posted 8/16/2009 6:09 PM (GMT 0)
I never settled for mild inflammation. My GI and I worked like crazy for over a year trying to reach remission and I think we both knew I'd get there someday, whether it be by a medication or by surgery (which he said was my VERY VERY VERY last option). There were many times when I wanted to give up and just be sick but I'd come to my senses and realize I didn't want it to defeat me. As hard as it is, you've got to have faith in your GI and your body. If you feel like your GI is just 'settling' then maybe he/she isn't the doctor for you. Generally speaking I feel your GI should want you in remission and healthy just as much as you want it.
Posted 8/16/2009 6:47 PM (GMT 0)
I definitely wouldn't settle. There are a LOT of other drugs to try, and it sounds like you really need to get off the prednisone. You shouldn't be on it that long.
Posted 8/16/2009 7:24 PM (GMT 0)
I have tried ...Asacol, colazal, pentasa, canasa and proctofoam which all have not worked. I was on azathioprine but had a serum sickness reaction that landed me in the hospital for 2 days. I am definatly not settling....and my GI might not be either...but he said we were going to hold off on remicade because it went down to mild and get off of prednisone slowly which would leave me just with proctofoam...which i know is not a maintanence drug. I just cant see how if I still have mild inflammation on prednisone...how getting off of it won't put me back to severe inflammation.

Can any one suggest another drug to ask about in my next GI appt which is september 10th?? I really don't want to have to switch GI's again. This is my 2nd one....my first was plain awful....my current dr is very easy to talk to and I am very comfortable when talking to him about this stupid disease.

Thanks for the responses!
Posted 8/16/2009 7:41 PM (GMT 0)
I personally have settled for constant low-grade inflammation, with daily low-grade symptoms. However, my GI has been pushing surgery for the past year or more. I find it very weird that your doctor would settle for you still having inflammation- my GI & myself tried pretty much everything, med-wise. I had been on & off pred for the better part of 2 years, & was finally able to wean off by being on Remicade & Imuran, both at high doses. My doctor was willing to give all the meds a try, but like I said, he has been recommending surgery. As have all the others doctors/surgeons I've had consults with. I choose not to go that route at this time, so yeah, I myself am settling. At the moment- not sure how long I can maintain that, but we'll see, take it day by day, you know? But if my doctor thought it was ok to continue with the low-grade inflammation, I think I'd find a new one! Once it became clear that I wasn't getting off pred so easy, we went straight to Imuran, then to Remicade. Why don't you just tell your doctor that you're not willing to settle with things as they are, & that you want to give Remicade a try?
Posted 8/16/2009 11:50 PM (GMT 0)
     Ask your doctor about 6MP, but don't let him start you at a high dosage.  It takes about three months for it to "kick in" along with taking a low dose of prednisone.  I started on it about seven years ago and did have a remission period (no symptoms of Ulcerative proctitis at all) of a few years, but it didn't keep me in remission.  I have flares about once a year.  I was hospitalized in May of 08 for ten days and that flare lasted until the first of Nov.  I did enjoy a remission until this past May.  I sometimes think my diet contributed to this last flare.  We were vacationing and going to dinner with friends often.  A high fat diet is NOT GOOD and I did eat steak a few times and pizza.  These are foods I avoid eating when at home, so I should know better, so I am suffering for it now.  I am not a candidate for Remicade as I was exposed to the TB virus back in the 60's and Remicade could reactive the TB.

     I mentioned asking about the 6MP but you have to have a blood test called Prometheus prior to starting the 6MP to see if your system can metabolyze it properly.  Why my GI doctor started me on it and didn't send me for the blood test until three months later will always be a mystery to me.  I was on 50 mgm but he increased my dosage to 100 mgm because of my flare.....however, the 100 mgm sent my white blood cell count plummeting to 1.4, which means my immune system just about crashed.  Now he took me off the drug completely for a few weeks to see if my white cell count will improve.   If you do go on 6MP, make sure your doctor sends you for frequent CBC's to make sure your white count doesn't drop like mine did.

Posted 8/17/2009 12:36 AM (GMT 0)
Hi Christine....I have already been on immuran and had a serum sickness reaction too it. (high fever of 104, fatigue, muscle stiffness etc) it ended me up in the hospital and had to have a spinal tap but once I got off the immuran I started to recover. So unfortunatly....6mp is not an option for me because my dr said it would probably give me the same reaction as the immuran but it could be worse the next time. I think I am going to discuss doing remicade even though my inflammation went down. I really do not want to flare back up to severe again...I had severe inflammation for a while and not willing to go back there. Since the ASA drugs aren't working for me and he wanted to hold off on the remicade I have a feeling I will be headed back to were I was before I started the prednisone.
Posted 8/17/2009 2:34 AM (GMT 0)
I'm meeting with a surgeon tomorrow to discuss that option. I am just sick of being sick, I am NOT willing to settle for low grade inflammation and symptoms. I have been on Remicade for two years, and while it has helped me a great deal, I still have urgency at times, lack of energy ... my husband describes it as my "spark" being gone.

I was on Prednisone for two years, having gotten steroid dependent it was a long haul weaning off of it, thank goodness for Remicade. I must say my low point was about two winters ago, when I got severely anemic. After that low point I decided to go ahead with the Remicade and it helped for awhile, but now I am having infusions every six weeks (vs eight) and between the fourth and fifth weeks my symptoms return and it's a rough week or two until my next infusion.

I wasn't ready to hear about surgery until a few months ago, so you need to come around to that decision on your own, but if you research the boards (also check out these boards: http://j-pouch.org/groupee/forums) you'll see that the majority of people post-surgery say their only regret is not having done it sooner.

Give Remicade a try, it's generally well-tolerated and not nearly as scary as you think it is. I was terrified during discussions with my GI and looking up the side effects, but the worse ones are rather rare. I haven't been sick since I started the infusions, although I have noticed I am very slow to heal -- I chalk that up more to the fact that my body is still constantly fighting the low level of inflammation I have been left with.

Don't settle for not feeling well. You may be okay with that for a period of time, but it is no way to live.

Meesh
Posted 8/17/2009 3:55 AM (GMT 0)

Meesh said...
Iif you research the boards (also check out these boards: http://j-pouch.org/groupee/forums) you'll see that the majority of people post-surgery say their only regret is not having done it sooner.

I agree.
Posted 8/17/2009 4:01 AM (GMT 0)
Since you have u.proctitus, I'm wondering why your gastro didn't have you try cortenemas or Cortifoam (10% steroid as opposed to 1% for Proctofoam). The topical rectal med used in combo with oral drug(s) seems to help a lot of members here. Not every UCer gets the same result from meds, but you won't know for sure 'til you try it yourself. Best wishes! / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 8/17/2009 6:18 AM (GMT 0)
Hello all, new member. I have been recently diagnosed as (probably) UC (still ruling out Crohns). I read your question and you asked for some suggestions. First, I noticed you crossed off asacol as not working. Two questions, were you taking it by mouth or by enema? Since your mentioned proctitis I would think it was taken by enema. There is some literature out there that suggests switching to a by mouth dose might help. Also, was the dose pushed to 2.4 grams/day? I am on Lialda which I started 3 weeks ago, so far not much relief for me but I started entocort this week as well. I have pancolitis (I win!!! tongue ) so everything is by mouth for me.

This whole being a patient with a disease like this instead of taking care of patients with diseases like this is NOT fun....Lol. I am hopeful I will push this into remission soon. Good luck on your end...ha ha (sorry, it 2:15am into my 12 hour shift....)

Posted 8/17/2009 12:14 PM (GMT 0)
Hello lovemyboys09,  

 Have you tried the vitamin E enemas or adding the vitamin E into to applicator with your rectal meds that you are currently using?  For me the vitamin always speeds up the healing and it stops the bleeding quickly?  I use 4 capsules  nightly mixed it with the hycort or cortifoam and retain it until morning, plus I always use a 5th capsule to coat the applicator end.  You can use the vitamin E straight mixed with warm water it works well.

Posted 8/17/2009 12:37 PM (GMT 0)

I would not settle for anything short of total remission. I was diagnosed in May of 2003, and have never been in total remission. I was forced to settle for low inflammation simply due to the fact that I was never going into total remission, and then after enough time on the different drugs, they would stop working. Remicade stopped after approximately 10 months, Humira after 4 months. Been on prednisone, on and off again, for 6+ years. Never being able to fully go into remission has left me feeling sick almost every day, at least once during the day, not having much of a social life, and overall pretty miserable.

Point of the story, you want to feel healthy, and not sick. In my opinion, don't settle for low inflammation.

Posted 8/17/2009 12:50 PM (GMT 0)
25% of the population have mild inflammation with no symptoms and on no drugs as they dont even know they have IBD. Should they also go on drugs? surely you need to treat symptoms and not camera images?
Posted 8/17/2009 3:25 PM (GMT 0)
FLicuRN, you should use rectal meds even though you have pancolitis. I also have pancolitis, and didn't start to notice much improvement in my symptoms until I added mesalamine enema to my Asacol (I recently switched to Apriso for convenience of once-daily dosing). LOTS of studies show that patients who use enemas in addition to oral meds stay in remission for longer periods of time. A lot of docs speculate that the oral meds don't always reach the end of the colon successfully.
Posted 8/17/2009 3:47 PM (GMT 0)
Thanks for all of your responses. I will definately give vitamin E a chance...never even thought of that.

FLicuRN....I was taking asacol by mouth....12 pills a day which is the maximum dose you can be on. I have also tried pentasa and canasa. I have not tried cortifoam...maybe I will have to ask my dr about using a higher steroid rectal med.

 

Posted 8/17/2009 5:48 PM (GMT 0)
I did for more than 20 years. Nothing worked to kick it into remission completely. I managed, but it was hard.

Then I took my cat to a homeopathic vet, who recommended a naturopathic doc, who inspired me to do some research, which led me here and to my GI to ask about Remicade. I'm in remission for the first time ever, still adjusting to it!
Posted 8/17/2009 6:25 PM (GMT 0)
Its great to hear that you are in remission Peety. I am hoping to be in remission someday....its been 2 years now. we were discussing remicade but he wanted to do a flex sig to look at the information and because it had gone from severe to mild he wants to now hold off on it and taper pred like I said. I think when I go in next time I will definately tell him im not going to settle with just bleeding and stomach pain forever....tapered down to 10 mg pred about 5 days ago and already have more stomach pain then I had before.
Posted 8/17/2009 7:27 PM (GMT 0)
Don't settle for not being in remission.

I have had ulcerative proctitis since 1983 (26 years) and have been in a bad flare since end of Jan, 2009.  Had been using the same GI since the beginning.  He has not been able to get this flare under control and I decided to go to a naturopathic nutritionist - what a mistake!  I kept losing lots of weight which is something I can't afford.  Finally got in to see a new GI and what a difference.  My old dr had me on the wrong dosage of meds (prednisone) and for the wrong pd of time.  Also should have hospitalized me at one point but didn't.  Within 2 days w/ the new dr. I am so much better I don't know what to do.

Bottom line - don't give up and always get a 2nd opinion! 

Posted 8/17/2009 9:59 PM (GMT 0)
Take charge, and Trust Your Instincts!
Posted 8/18/2009 4:52 PM (GMT 0)
I've never in the entire 18 yrs of having this disease (crohn's colitis) have been in 100% full remission, for me it may be due to some complications I've had with my perianal disease (linked directly to crohn's) but I'm sure there are plenty that have never found full remission, afterall not everyone responds completely to their meds either, not all alter their diets/lifestyle because they don't believe that it has any affect or at least enough of one (personal choice, I'm not judging) but for what ever reasons I'm sure plenty of others have yet to find full remission as well.

:)
Posted 8/18/2009 5:08 PM (GMT 0)
Have you tried Imuran yet? Maybe give that a shot. I've been on it a few years its worked well for me. I still have flare ups but no blood in the time I've been on it.
Maybe ask about it with your GI
Good Luck
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