Remission - what to expect?

[drew_wymore]

I am on the last week of a 5 week course of prednisone and I am feeling the best I have in nearly a year. I do have some days where I either eat too much or find a food that doesn't agree with my gut and makes me nauseous but otherwise I'm feeling so much better. I am scared that once I stop taking the steroids that I'll re-flare.

So for those of you who have been treated and gone into remission, can I expect to remain at this feeling of feeling normal or will I have some pain or whatever? Is there any general "rule" of how long things will remain normal or is it different for everyone? Can I expect to be using maintenance drugs while in remission?

Thanks!

Drew-

 

[Kev]

Many years ago, pre diagnosis, I suffered from indeterminate inflamation of colon. I was eventually placed on a 45 day treatment of steroidal enemas. My GP at the time said it was hoped that 'shocking' the colon with these (apparently quite high in steroid content, delivered directly so to speak to the lower colon) would work. I went 10 years + symptom free. now, whether that was from the steroids, or just a cycle of this disease, I'm not qualified to say. I have since been on steroids again a number of times out of sheer necessity. I have not been blessed with a remission again. I hope your luck is much better

 

[soupdragon69]

Recently my GI wrote to my GP and said I was "in remission". I thought hang on a minute you told me I wasnt there yet and yet you now say I am to my GP!

I saw my GI again last week and asked him about it. He said they use a specific scale in relation to remission and it doesnt mean you have no problems - he told me it could mean I still have symptoms but on THEIR scale I was in remission!! CLEAR AS MUD TO YOU? ME TOO!!

So hey remission it seems is anyones guess ;-) However he said he would do a report for my employer as they are still creating merry H**L for me and he would clarify what he meant - so here's hoping eh?

 

[Kev]

What's next??? "Hey Widow, eeer, I mean Missus, your husband isn't really dead, his remission has just slipped a little!"

 

[soupdragon69]

ha ha ha ha ha ha EXACTLY Kev!

 

[Kev]

Speaking of widows, here's a true story. Hubby works the late shift, gets home in the middle of the night. Wife bakes a pie, leaves a big slice out for him. He starts in, accidently chokes, then apparently aspirated, blocking the windpipe. He dies. A tragic accident, no foul play, just one of those things. The insurance company says they won't honor his life policy with the nice accidental death rider. Why not? They tried to claim that he deliberately killed himself by eating too much/fast. According to them, it was suicide by food. The court disagreed.
First off, the policy had been in place for nearly 8 years, well past the 2 yr limit on suicide. second, the company's contention that this was suicide was drivel, and apparently an attempt to avoid paying benefits. The verdit. The widow got her money eventually. and the insurance company lost their license for 2 yrs. (just locally though).. The most insane part? Their motto at the time was "The good hands people"

 

[D Bergy]

This insurance company has a long record of attempting to cheat its policy holders.
In spite of how comforting their commercials make them sound.

It would be hard for anyone but this company to characterize eating pie as a way to take your own life.

The fact they sold them an AD&D rider with the policy to begin with tells how corrupt they are. Why does the manner of death make a difference in how much the value of the policy should be? It doesn't.

The AD&D riders are a rip off. Plain and simple.

Pie is good, unless you eat it too fast and choke. I will take my chances.

Dan Bergman

 

[Sojourn]

When I was first diagnosed and put on Prednisone I went into remission almost immediately. When I began to taper off the pred the symptoms came back with a vengeance and the Pentasa didn't do anything. Pentasa was supposed to be the maintenance drug.

 

[TheLazy1]

Compared to when I was first diagnosed I'm just seeing a reduction of symptoms as my remission.
As for pain, it happens to me several times daily and always involves a bowel movement which averages to about 5-8 per day.

I'm taking Asacol as my maintenance drug but I doubt it's doing anything, never know though - maybe it's keeping worse things at bay

Still, It'll be interesting to see if full remission comes around next time when I need to go on Prednisone.

 

[jobengals]

when i was first diagnosed, I was put on asacol. Went into remission on that in about 2 weeks. Felt great, and took everything for granted. Ate terribly, smoked cigarettes, drank, didn't take care of myself. And slipped into a depression. Four months into the asacol I flared up something wicked. Doc moved me to prednisone. Remission again, immediately. Tapered off the pred after 6 weeks, still in remission. I was in remission on asacol and azathioprine. Then i got stupid again, and stopped taking my azathioprine. Whether that was the reason or not, I flared up again after 3 months of staying pred free. After that, I've needed to take prednisone at least once a day for about 4-5 months until just recently when I got put on Humira. I'm finally feeling back to normal while staying pred free ... (damn i ramble on don't I)

basically the point of what i'm saying is everyone is different and is effected by the medication differently, and no one's body responds to crohn's the same way. I'd expect that you would need to stay on maintenance drugs while in remission, to increase the chances you'll stay in remission.

 

[Chester]

about asacol

Hello group,

Those of you on Asacol might be interested in this: My GI couldn't get a handle on my flare-up despite the basic treatments. I'd been on Asacol for many years as a maintenance drug, and he finally concluded that there's a binder in Asacol than can actually aggravate Crohn's. He took me off the Asacol and put me on a drug called Colazal. I'm now on that plus prednisone (5mg a day, down from 40) and I'm feeling much better now. I hope to be off the pred completely soon. I'm also on 100 mg. of azathioprine daily and hope to cut that down, too.

Ask your docs about the possible aggravating ingredient in Asacol.

Chet

 

[Kev]

Hmmm, just a hunch, but I wonder if the binder they use is lactose? Do you know if you're lactose intolerant, even just sensitive. L.I. can result in more diarrhea

 

[drew_wymore]

Well it sounds like I can expect a little of everything. I just came off a 4 week course of pred and I'm already feeling crappy again. Not so much my gut although I am having some pain there. It seems that I catch little colds and ear infections more frequently in the year or so that I've knowingly had crohns (I'm sure it was crohns pre-diagnosis) and I'm assuming since its an auto immune disorder thats why. I have my yearly physical with my GP tomorrow and I'm going to ask if he can put me on a couple months worth of Cipro or similar, would work dual duty since they can treat crohns with cipro as well .. as part of a larger treatment plan or so I read.

 

[Chester]

about asacol

Kev, doc didn't say anything about lactose, and I haven't been particularly lactose-intolerant. Don't really know what the connection is with the Asacol binder, but doc did say that it can sometimes aggravate Crohn's. Great, huh? A medicine that can make your condition worse. Who needs this?

Chet

 

[Kev]

Wellll, as for the lactose thing... it turns up in a lot of places where one wouldn't typically expect it.. for instance in margarine, in pills (both prescription and OTC), you name it. Now, and this is just a crazy old man's stupid wild assed guess, but say a person wasn't particularly susceptible to lactose.. tolerated it pretty good. But then, if that person were to take 6 - 8 pills a day that had lactose in it as a binder because it's readily available, widely used, and its usually harmless to 99.9% of the folks out there... and instead of it going thru the stomach, and getting partially digested/broken down, it traveled inside of a 'coated' pill designed to survive those nasty gastric acids, and arrived inside of the ileum pretty much intact, where it released the medicine AND the lactose... where it's theoretically possible (altho admittedly a strettttch of imagination) it gives the old G/I system a little too much concentrated lactose to deal with OK. Thats my untrained, unprofessional, not so funny ha ha take on the situation. I was taking brand name vitamins.. and my big 'D' would get worse after doing so... a thorough read of the label showed lactose as a binding agent. Bought me some cheap, no name generic vit's with no lactose, both same ingredients... AND voila.. my little post vitamin rushs to the W/C stopped. In researching my LDN, found other folks who HAD to find compounding pharmacies who 'didn't' use lactose to bind their pills. So, apparently, I'm not the only freak of nature who is sensitive to lactose in something as small as a freakin pill or capsule. It is, like I said, just a S.W.A.G., but it might be interesting to research to see if asacol does use lactose (or milk sugar) as a listed ingredient in their pills, etc..

 

[D Bergy]

Gluten is another substance found in lots of vitamins and some prescription medication.

My daughter has been burned by vitamins before. She has Celiac.

Dan Bergman

 

[Brando]

yeah i'm with you on the lactose Kev. even extremely small amounts will give me all sorts of problems. however i think it isn't the only sugar that complicates things. i find when i eat whole grains, green vegetables, and other foods that are considered "gassy" that it gives me problems too. my trick and it works well for me anyways is to take a dairy digestive supplement like a lactaid pill and beano before i eat anything. beano breaks down alot of complex carbs and the lactaid breaks down any lactose sugar that may been in something i eat. theory behind this is that people with crohn's have problems breaking down sugars because their intestines aren't making enough enzymes because they are in fact damaged. not sure if this is a cause of crohn's or a result but it makes alot of sense.

delving a little deeper all of these probiotics you hear about are really just supplementing bacteria that live in the intestine naturally but the thing about it is these bacteria naturally prodcue alot of these enzymes, including enzymes that break down lactose. maybe supplementing these bacteria is actually giving more enzyme production and that's why it helps alot of people? maybe it's all sugar related?? just my wild ass guess as you like to call it Kev

alot of people don't think this disease is diet related (my doctor included here). i, however, don't see how it can't be related since it is a digestive disease. it really doesn't make sense to me how it can't be somewhat food related especially since there are so many foods that tend to irritate the hell out of the bad spots. doing a little search on sugars adverse effects on the body turns up alot of things. it's definetly known to be a primary cause of type 2 diabetes. although i dont think it's the only thing i do believe it has alot to do with crohn's as well.