Labelling Crohn's as a "relapsing-remitting" disease

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NiceCupOfTea
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   Posted 6/8/2010 3:26 AM (GMT -7)   
I was thinking about this a few minutes ago and it was bugging me. From what I know of this disease, it doesn't seem to be the correct label. If the only remittances (remissions) come about through drugs or, perhaps, exclusionary diets, then how can Crohn's rightfully be called "relapsing-remitting"? Cancer is put into remission through drugs and surgery too, but I have never heard of cancer described as a relapsing-remitting disease.

I remember years ago I was baffled by the fact I was symptomatic and never had any periods of remission. My Crohn's was quite mild back then, so living with the symptoms wasn't a huge issue, but it still bothered me enough to ask the then IBD nurse overseeing my case about it. I got the usual brush aside of course - it was nothing serious, don't worry about it kind of thing.

The thing is, I don't think this is just 'mere' semantics. There's a vital difference between a disease which goes into remission spontaneously and a disease which doesn't go into remission unless it's treated - and nobody sees fit to mention this. Not the info leaflets, not the doctors/nurses who see you, not the medical websites. All anybody/anything ever talks about is how Crohn's is a chronic condition which goes through periods of flare-ups and periods of remissions.

Well, no. No it doesn't go through periods of remissions unless you induce the remissions through drugs, surgery or exclusionary diets.

Makes a difference.

NiceCupOfTea
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   Posted 6/8/2010 3:44 AM (GMT -7)   
And in other news, I came scarily close to almost swallowing 50mg of 6MP instead of 6mg of Entocort >_<. (I take the 6MP at night and the Entocort in the late morning.)

If anybody is interested in how I'm doing, it's a bit of a monitoring situation at the moment. My anaemia has got worse, but it's not clear if it's the 6MP causing it yet :-/

mdf34
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   Posted 6/8/2010 4:25 AM (GMT -7)   

I actually did mess up the my meds the other night although not as serious as that.  I took 2 prilosec about 8 hours apart when I wanted to take a bentyl.  Didn't realize til the next day when I realized my pills were all off in my pill minder.

If the disease can relapse on you whether you are taking maintenance meds or not, does that not keep it in this category?  If it came and went would it not then be just a chronic disease?


Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/8/2010 12:10 PM (GMT -7)   
My doctor has never referred to crohns as "relapsing-remitting" in the 25 years I've been seeing him.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 6/8/2010 12:27 PM (GMT -7)   
I have never heard of this term, but I believe that everyone, doctors and patients alike, seriously need to reconsider their perception and definition of remission.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
The surgeon said it is inoperable and so I start Remicade on May 7th.


beave
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Date Joined Mar 2007
Total Posts : 1091
   Posted 6/8/2010 12:46 PM (GMT -7)   
I've had several long-term remissions with no meds and no special diets. I say that not to gloat, but simply to point out that it does happen.

Homeboy
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Date Joined Dec 2005
Total Posts : 637
   Posted 6/8/2010 1:42 PM (GMT -7)   
It is possible, for the disease to subside, and go away for a time without medications.
 
I remember it happening alot when I was younger, I have not seen it do this in some time, as I am always these days on medications of some sort.

MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 6/8/2010 3:31 PM (GMT -7)   
Before I was officially diganosed I would flare and go into remission all the time.  It's possible without meds.


Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 6/8/2010 3:35 PM (GMT -7)   
I think I understand what you mean, NiceCupofTea. Apart from anything else, a number of us never / rarely achieve remission, or continue to have a lot of gut problems while in a pseudo-remission, often because we were once sick enough to have done our innards serious damage, and have never really recovered. I feel that there isn't sufficient acknowledgement of that in the educational literature.

It's often too soothing, and doesn't portray the reality of living with this illness, except for those who are lucky enough to have milder disease.

Ivy (getting off her soapbox)
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
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Date Joined Jan 2010
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   Posted 6/8/2010 7:04 PM (GMT -7)   
Urgh. I didn't think 9mg Entocort was doing anything, until I went down to 6mg a few days ago. First it kicked in; and now it's kicking out <_<.

Anyway, thread... >_>

"Relapsing-remitting" is a technical term, I think, but I've seen it used fairly often in print. For example, here. (See under "Symptoms") And even when that exact phrase isn't used, then Crohn's will still be described as a disease with periods of flare-ups and remissions.

@beave - It's all right, I didn't take it as gloating. I actually find it cheering if anything. It's good to hear that the disease does go away spontaneously in some people. But I have to say, my experience has been the exact opposite. From the day the diarrhoea started (I can pinpoint it almost to the day as well; it was a few days after Christmas), I have never had remission. Also, I had a normal gut before the diarrhoea started: no Crohn's-like symptoms which came and went in the years preceding it.

@ivy - I couldn't agree more. I think classifying Crohn's as a relapsing-remitting disease doesn't cover all the possible patterns of attack, which seem to vary enormously between folks. For example, one person can go from remission to being in hospital in one day. While another (me skull) has less acute bouts but is never in remission. That's simplifying it greatly, but my brain is getting too tired to think for much longer.

At any rate, this aspect of Crohn's seems to be ignored by the medical profession. But to me, from where I'm standing after 10 years of disease and a lot of reading of other people's experiences, it seems that Crohn's is as often a progressive disease as it is a relapsing-remitting one. I wish somebody had explained this to me a decade ago. I might very well have ignored it and ended up in exactly the same boat that I am today. But I'd have been less surprised.

*sees time* Can't believe how long it took to write this post; my brain is in serious slow-motion today =/

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/8/2010 9:44 PM (GMT -7)   


At any rate, this aspect of Crohn's seems to be ignored by the medical profession. But to me, from where I'm standing after 10 years of disease and a lot of reading of other people's experiences, it seems that Crohn's is as often a progressive disease as it is a relapsing-remitting one. I wish somebody had explained this to me a decade ago. I might very well have ignored it and ended up in exactly the same boat that I am today. But I'd have been less surprised.


*Applause*

Well said, NiceCupofTea!!!

The thing is, that this *is* important. It affects whether social support services are available for people with Crohn's, or permanent disability payments (down here, usually not, because there is an assuption that we will go into remission eventually). It affects treatment. It affects funding into research, and social awareness, and all sorts of other things too.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 6/8/2010 10:58 PM (GMT -7)   
Yes Nicecup I too have had remissions before I was diagnosed 3 at least. You are very correct though to think of crohns as a progressive disease that is my experience as well. The remissions chronologically are shorter each time and the disease gets worse after each remission. My first remission was probably around 6 or 7 years, the last, 5 months and that was in 2003. The disease initialy was controlled without any drugs and since 2003 is barely controlled at all. That's definately progressive in my mind.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 6/9/2010 12:10 AM (GMT -7)   
At any rate, this aspect of Crohn's seems to be ignored by the medical profession. But to me, from where I'm standing after 10 years of disease and a lot of reading of other people's experiences, it seems that Crohn's is as often a progressive disease as it is a relapsing-remitting one. I wish somebody had explained this to me a decade ago. I might very well have ignored it and ended up in exactly the same boat that I am today. But I'd have been less surprised.
 
Oh, now I see where you were going.  Thanks for the definition, I was not sure I was understanding it properly earlier.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 6/9/2010 6:59 AM (GMT -7)   
I completely agree with you Nicecupoftea. It may have helped my claim for disability pension, but I was denied as I'm on a clinical trial, so they said they'd reassess me in 6 months. How am I supposed to support myself and 3 children if I'm too ill to work?
Diagnosed with Crohn's April 2009 after suffering for over 20 years.
 
Current meds: 6mp, Salofalk granules, somac, Vendolizumab clinical trial, mobic and panadol osteo.
 
Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/9/2010 7:50 AM (GMT -7)   
I had a nearly 20 year remission without meds. But I am sorry I would never do it again. All that time I thought I was free from Crohns and its symptoms, the Crohns was still in there doing its damage. Yeah I made it nearly 20 years without meds, but after needing emergency surgery because of not taking meds and taking forever to get my disease back under control, I will never be without these meds again. Its gonna be progressive if its not treated. Since my emergency surgery in 2002 my Crohns while it may have reached a remission, it still is much worse now than it was. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8544
   Posted 6/10/2010 8:31 AM (GMT -7)   
@ivy - Thanks for the applause! I wasn't even thinking that deeply into it, but you are right. Reclassifying Crohn's as a chronic disease which often gets worse with time would surely have a knock-on effect on funding, entitlement to disability, etc. That's food for thought right there.

@grandpato2 - That sucks. I see from your sig that you have had Crohn's for a very long time (40 years. Eep!) Have you tried any biologics other than Remicade? It's bad news when the meds fail, but I do hope that things will get better for you all the same.

@mdf34 - It's okay :p

@Claudine - I honestly don't know =/ I think IBD should be taken more seriously in diability claims, but as the situation currently stands no country seems inclined to take it on board. In the UK, claim you are an alcoholic or a drug addict and you'll get given all sorts. But suffer from an actual disease and you may not get any help. Is there anything 'below' disability benefit you can claim, as it were? I didn't even bother going for DLA (Disability Living Allowance) with my Crohn's, as I didn't (and still don't) think I would have a hope in hell of getting it. Instead, I'm on the more general income support, which covers sickness, depression, and many other things. Obviously, that's specific to the UK only. And in my case, depression plays the bigger part of my claim, to be honest. It's what the doctor who re-assesses my claim every 1-2 years seems to take the most interest in. It's a bit annoying to have fatigue, diarrhoea, etc. brushed aside as though they were nothing, but not a lot I can do...

@Nanners - Well, 20 years isn't a bad stretch, but to have it end in emergency surgery must have been very unpleasant. Particularly if the day before you were feeling just fine :-/

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8544
   Posted 6/10/2010 8:35 AM (GMT -7)   
And now, I'm off to the doctor's surgery to pick up my 6MP. I reckon there's about a 75% chance they'll have it in - not the most competent place on earth, this one... <_<

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 6/10/2010 3:26 PM (GMT -7)   

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8544
   Posted 6/10/2010 5:34 PM (GMT -7)   
I got it :p :)

spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 6/10/2010 6:46 PM (GMT -7)   
Nanners, did your GI ever order any blood tests (CRP, SED) to keep an eye on inflammation levels, or colonoscopies, etc.? If not, I hope you fired him/her. I know a couple people who don't take meds, but their docs are adamant about having a colonocopy every 3 years or so. One had a remission of 20+ years, but her last colonscopy showed a return of some inflammation.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/11/2010 11:30 AM (GMT -7)   
Spooky would you believe I had NO tests or GI visits during that time? Dumb I realize now, but I think that is common when you are diagnosed young and think you are invincible:( Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 6/11/2010 3:51 PM (GMT -7)   
NiceCup, my GI says that the disease is controlled as best as it can be that Humera wouldn't help any more. And she's supposed to be well respected in her field, I wonder. CLAUDINE, make sure your Dr. includes depression as a diagnosis when your re-assesed, assuming your being treated for it. When my family Dr and another specialist were filling out the forms I was suprised both of them mentioned quite clearly about my depression. When I asked why, they both told me it was often the deciding factor in granting a claim.


Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/11/2010 4:26 PM (GMT -7)   
Grandpato, I'm a little suspect over your GI basically saying you're as healthy as you're going to get. I had a GI who once commented that my 10.0 hemoglobin was "good, for you". I was a bit offended that he felt no need to try to improve my situation. So I went to a hematologist that was horrified at my numbers, and gave me an iron infusion. I had a good 2 years of normal hemoglobin and ferritin numbers, and now get infusions whenever I need them. I don't like it when doctors just accept someone's situation, and don't try everything they can to improve it.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 6/11/2010 4:28 PM (GMT -7)   

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8544
   Posted 6/11/2010 7:29 PM (GMT -7)   
I agree with spooky. I do think it's a bit suspect. Judging from posts on here, it's pretty common for people to move onto another biologic if one fails. If I was in your shoes, I would certainly at least want to give Humira a try. I do also find it incredibly frustrating at how doctors aren't concerned with a patient's quality of life. I know they aren't miracle workers and if the drugs fail, they're limited in what they can do. But it would be nice to feel they were doing their utmost, or at the least concerned about you, and I don't very often get that feeling. The system itself really doesn't help and contributes to the general air of benign indifference. Most doctors I speak to are usually pleasant people; you just don't get nearly enough time to build up a patient-doctor relationship with them. They don't know you that well (I feel mildly grateful to be recognised!) and I suppose don't get too invested in your case.

Bleurgh. Sorry for any rambling. Tired. I'm off to bed now. @Claudine - If you come back to check this thread I second what Grandpato said about depression. If you are depressed at all, definitely mention it.
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