Questions about remission

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Ohana
Regular Member


Date Joined Aug 2007
Total Posts : 89
   Posted 11/20/2007 10:40 AM (GMT -7)   
So I am still confused about how you know if you are in remission of not. I was supposed to start Asacol but have held off because I am feeling better. My gut issues (D and C) have gotten much better, mucous is almost non-existent - only a mild bloating in my upper abdomen. I still have some arthritic pain, fatigue and blurry vision but those are much better as well. My other symptoms include infrequent sore mouth and small sores on my head.
 
Is remission judged by clinical blood tests or do you just "know" when you are in remission? In talking to a friend who has CD also, she says she is in remission but she also tells me of on and off symptoms of gut problems, fatigue and eye issues.
 
I'm not on any CD drugs right now and I'm afraid to start the Asacol since I'm afraid it may mess me up worse than I am right now.
Dx'd CD in August 2007 - 42-yr-old wife and mom
Allergic to Entocort and Prednisone / Not sure what's next
Currently on Aciphex, calcium and multi-vit; and Flovent (for asthma)


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 11/20/2007 1:42 PM (GMT -7)   
I would recommend trying the Asacol.  It usually doesn't have side affects and it will keep you in remission.   It's worth a try - it's nothing like prednisone or Entocort.
 
I don't know when you're in 'remission' either, other than you feel better sometimes and worse other times.   When I'm 'feeling better', I assume I'm in remission, although some of the side affects of Crohns never go away anymore for me (fatigue, joint pain, left sided pain, in particular).     I don't really trust the clinical tests to tell me I'm in remission because there have been several times when I've felt terrible, yet the tests (colonoscopy, barium Xrays or abdominal CT's) show nothing. 
 
Learn to listen to your body - it will tell you more than any doctor or test.  And take your meds...!  That's my advice, anyway.   Good luck!
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/20/2007 2:26 PM (GMT -7)   
unless you're allergic to 5-ASA meds, as I am, then you won't be able to take asacol or pentasa, ect...you should really talk to your doc about how you should continue (with or without meds).

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/20/2007 4:05 PM (GMT -7)   
IMHO the only true remission is absence of symptoms.

clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 11/20/2007 4:26 PM (GMT -7)   
Not exactly sure myself what a clinical definition of remission would be, but for me it is limited abdominal discomfort with days and nights that do not require the bathroom to be within 25 feet of me at all times. I began to experience this 'remission' after starting the prednisone, so I am not sure if the Pentasa(mesalamine similar to asacol I believe) is helping or not, but I have no side effects at my dose and am too scared to find out if stopping it will cause a flare-up. On the other hand, my mother-in-law had to stop asacol(prescribed for as yet undetermined IBD or IBS) because it gave her the big D worse than before she started it. It makes it difficult when one of the mesalamine side effects can be D.
Good luck to you
Bob
47 years old
Dx 3/07 Moderate Crohn's in terminal ileum-Probably had it for years earlier
Rx Prednisone initially for 8 weeks-40mg/day then tapered down to 0
    Currently on Pentasa-2000mg/day


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 11/20/2007 8:32 PM (GMT -7)   
I haven't gotten to "remission" since I was diagnosed a few months ago, but I sure HOPE that remission means the absence of all symptoms...like how I felt before I got sick in the first place, which was perfectly fine! Am I expecting too much????
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/20/2007 10:35 PM (GMT -7)   
I have NEVER been in a full remission my entire 17 yrs of this DD, and for the most part I was more on the moderate-severe side than mild which I've recently become but still not full remission....I can hardly remember what it's like to feel normal but I sure do miss it.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/20/2007 11:25 PM (GMT -7)   
Hi gumby, my daughter has no symptoms. Zero. Been on one pill of Entocort since May. She has a stricture but it isn't causing any trouble.
 
But, groan...I guess that I have to amend my answer to saying that remission is the absence of symptoms confirmed by some procedure like a colonoscopy, CT, SBFT or maybe new MR imaging technology. 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/21/2007 6:24 AM (GMT -7)   
Hi So glad to hear you are feeling better . Would discuss the med thing with your Dr. though you want to stay feeling good and perhaps that will keep you there. Although I have heard of one person that lives around here who is med free. Sure is hard to know what to do. I hope you and your Dr. can decide what is best for you. lol gail

Zazucat
Regular Member


Date Joined Dec 2006
Total Posts : 177
   Posted 11/21/2007 9:35 AM (GMT -7)   
Yup, njmom is right. I consider myself to be in remission because I feel great- no symptoms at all except a little bit of right-sided pain once in awhile. But, since my colonoscopy showed inflammation, my doctor says I'm not in remission and I need even more drugs. Blech. I've been off Remicade and Pentasa for about 5 weeks now and I'm still feeling great. So who knows.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/21/2007 11:20 AM (GMT -7)   
I only take Asacol and it works great for me. Remission to me is when for the most part I feel pretty good. I go thru weeks or even months when I feel pretty good. But I do have bad bouts that last 3-4 days every so often. I just think that is part and parcel of having Crohns. I don;t think I will feel perfect everyday, but I am able to function well most days. My biggest daily complaint is alot of joint pain that I control with pain meds.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Olive J
Regular Member


Date Joined May 2007
Total Posts : 83
   Posted 11/21/2007 11:24 AM (GMT -7)   
Hi there.

I am in remission now for the last 2 years. Every 3 months my doc does some bloodtest to make sure that I am still in remision. The main indicator he uses is the CPI results. My CPI for the last 2 years was only 1, when I flare it is usually around 21 and the worst was 51. That was a realy bad flare. But Asacol is nice to take, I take it only when my girly thing happens and that is the only time I get a bit of the big D. Hope it helps.

Sherbear41466
Regular Member


Date Joined Jan 2005
Total Posts : 364
   Posted 11/21/2007 7:46 PM (GMT -7)   
Ohana,

I am currently on Asacol, and in January, my doctor told me I was in remission. I kind of thought I was. After 2 years of not being able to eat salads, I was finally able to tolerate them in small portions. The diarrhea subsided. I still have it occassionally, but before I would have to go as soon as the food hit my mouth. I'm able to work full time, and don't have to take a nap anymore after taking a shower. No more fevers, and constant pain on my side, and my hubby can finally put his arm around me in bed without excruciating pain. Doc calls it remission because some of the original symptoms have subsided, but I still have difficuties when I get stressed or some times if I eat something that I still can not tolerate.

I have a very low tolerance to medications. Tried Colozal, broke out in major hives and had to go to the ER. Tried Remicade, quit breathing 20 minutes into my 2nd treatment. The Asacol really seems to be working, no side effects that I have noticed.

I've only been in "remission" for less than a year. I'm not sure if we ever really get back to the way it used to be before Crohn's. But this is much better than it was. At least I don't have to plan trips to the shopping center, doctor's office, etc.. around the bathroom.


 ~Sherry

Post Edited (Sherbear41466) : 11/21/2007 7:52:51 PM (GMT-7)


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 11/22/2007 2:38 PM (GMT -7)   
Olive (or anyone else), what is CPI?
36 year old mother of a fabulous toddler. Major symptoms began after her birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere in my colon. Pill Cam, SBFT, CT Scan all normal. I think I may mainly have colitis.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman.

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal but in no way think I do not have more symptoms in my future.


Olive J
Regular Member


Date Joined May 2007
Total Posts : 83
   Posted 11/24/2007 10:13 AM (GMT -7)   
Hi Zoey, CPI is a name of a blood test they do in South Africa. It indicates the level of inflamation activity in your blood. It's a very good indicator for crohns. If you are between 13 and 21, you have a mild flare, but if it goes higher, you have more inflamation and your flare would be worse. Hope it helps.

LiLa
Regular Member


Date Joined Nov 2007
Total Posts : 106
   Posted 11/28/2007 1:41 PM (GMT -7)   
Hey there,

I had surgery to remove the terminal ileum in 99 and have been in remission since then. BUT, since being introduced to this forum only recently, i have started to question things more. I currently take Questran which keeps pain at bay. I notice if i ever miss a dose, the awful crohns pain comes back and its like a flashback to those days before surgery. Yet i still suffer with frequent diarrhea, not everyday but out of the blue i could feel that urge to go immediately after eating which used to happen all the time when things were really bad. I cannot figure out why it's happening if doctors say i'm in remission. So i am gonna speak to my GP about trying Asacol as i feel the crohns is slowly coming back to haunt me!! Maybe you should consider this also as the long term side affects seem to be minimal. And if it helps keep the crohns in remission it couldn't really be a bad thing.
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