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

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 :-/

My doctor has never referred to crohns as "relapsing-remitting" in the 25 years I've been seeing him.

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.

Before I was officially diganosed I would flare and go into remission all the time.  It's possible without meds.

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 ) 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 =/

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.

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?

@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 :-/

Good luck...

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.

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.

Good point, Spooky.