No treatment

[KenK]

I've tried many treatments, none really did much for me, except Prednisone,
which you can't/shouldn't take indefinitely.

For a few months now, I've not taken anything but multivitamin, calcium with
vitamin D, and folic acid. My condition doesn't seem to be changing.

Anyone else doing nothing?

 

[imisspopcorn]

Hi KenK
Some others are doing alternative treatments like Low dose Naltrexone. Search the treatment threads if you want info on it. I have been on pretty much every treatment. Are you having symptoms???

 

[Mazen]

Have you tried Remicade? This is what they are trying me next........

 

[KenK]

Perhaps I didn't make myself clear... I'm looking to see if anyone else out there
is getting along with no treatment without seeming to get worse.

Actually, this last week, I seem to be better than I'd been for several weeks
previous.

Yes, I am having symptoms, if I was in remission I'd have no concerns.

I've been offered Remicade, I declined.

 

[kasper87]

Ive had this condition 9 years.

i have been on every treatment for crohn's disease and remicade is all i have left and been on it for awile though it doesnt ever last as long and now they have doubled my dose.

To make a long story short, I probably wouldnt have osteoporisis at age 22.
Id probably be in remission if i woulda accepted Remicade 3-4 years ago.

I declined because i feared it. Silly me did humira and cimzia b4 it.

 

[shazamataz]

Hi Ken, I expect that SOME people can get by without treatment after any flare is sorted out. But I don't really KNOW this. There are a lot of natural treatments you can try and some people swear by them. I am going down that route myself as you can see in my sig, but cannot claim much experience yet as I am still tapering the pred - though I haven;t fkared while tapering which is what often happens!
I am thinking that if you want to go with no medical treatment that is okay, your choice, but I would continue getting checked out (blood tests for inflammation ec) in case things are going on that you don;t know about.
My doc has agreed for me to try no meds after the pred and has given me a form to get blood tested every month to monitor if any inflammation comes back so I can get right on it.

 

[Donna B]

KenK,
I've done almost every treatment(only infliximab to try) but my mother was diagnosed 19 years ago when her intestine perforated.
Since then she's had one further operation, when things are really unbearable she will take a two week course of pred, she's done so maybe 8 times in 19 years but otherwise has never taken any meds, she's a thousand times better than me!!:lol2:
She was never seen by gastro so never offered meds, at her first ever appointment they wanted her to start 6mp to prevent things getting worse but after seeing how ill it made me and considering how well she's coped over the years she refused it.
I suppose the moral of the story is it depends how bad your illness is...............
:yoshijumpjoy:

 

[D Bergy]

I do not like to take medications. I will avoid most of them unless I cannot find a suitable alternative treatment. I take one every day. Low Dose Naltrexone. I take aspirin on occasion when I have a bad head ache. I take Sudafed when my Hay fever acts up. I have probably cured the Hay fever so I will no longer need the Sudafed. That is the extent of my drug use.

In the case of Crohn's, once you have it, you will always have it unless you have a way to cure it. No one has been able to do that in the strict term of cure, but even while in remission, the disease is slowly doing its work. I think it is wise to treat it, if you can do it without nasty side effects.

I would quit treating if I thought I cured the disease. I have been experimenting and trying to do just that. Realistically, it is unlikely, but not impossible that I will be able to do that.

Until I do, or don't, I will take Low Dose Naltrexone. It does not have any long term side effects. It protects me from other autoimmune diseases that often appear with Crohn's, and it prevents Cancer. Heck, even if I cure my Crohn's, I probably will take it for all of those other benefits.

It is the one drug in the world of drugs, I do not mind taking.

Dan

 

[FEELING MUCH BETTER]

I didn't take anything with active Crohns for the first 10 years and ended up having to have surgery. I got so used to the symptoms I just incorporated them into my life, so I really didn't think I was getting worse until a good doctor did some routine tests (I always made sure I got my regular colonoscopy - but I read my chart once and they used the word "non-compliant" A LOT). The inflammation will eventually lead to necrotic tissue which you have no option but surgery. I learned my lesson the hard way, so I advise you to rethink some kind of medication.

 

[Jennjenn]

I tried over a year ago to go without medicines....I got so afraid after all my surgeries and took a few things after and was in a lot less pain but still had some issues. After I thought I would try to go without some medicine for a bit and see how I would do. I thought the meds were very strong and harsh on the body as far as side effects. I did not last long. I started to get worse and worse after 9 months I was back in the hospital for a week with very active crohns.....a week after I got out I then developed a partial blockage. another almost 2 weeks in the hosptal..I felt like I was going to die from that pain I was in and for how high the fevers were going.....while in the hospital my doctor said that it is not possible for me to not be on some sort of maintenance meds.....I will never go without some form of medication again....I am currently on Remicade which they just had to increase the dosage for the last infusion....

 

[LoobyLoo]

I went for about 3 years with no meds ( between children!) Then had a flare up so never stoped again. My problem is that when I am in remission I forget to take my meds...then flare. Hence moving to Mezavant then salofalk so that I only have to remember once a day. x .

 

[OliveBranch]

Interesting thread!
I think that if your disease is active, you need to be working on getting well in SOME way, and meds of some sort will almost definitely be necessary. There may be better ways of getting things under control through diet and supplements--but I am only at the beginning of my learning about such things, so I cannot attest to whether or not the disease can be controlled this way. But it cannot be good to allow the bowel to bleed and the body to become more inflamed and more malnourished while not doing anything to try to get it under control. FEELING MUCH BETTER--your warning about necrotic tissue and surgery seems very important to me.

When you're in remission, it may be a different picture... I was very lucky early on to have very long periods of complete remission (three years at a time), and even though I technically "had Crohn's" the whole time, I don't believe that there was any wear on my body from the disease. For much of that time I was either on no medication or just Asacol (which, in my opinion, is like nothing at all), and this was totally fine until the disease activated again.

 

[crazycanuck]

you have to be careful because as I found out for the past two years I have been on a drug which hasn't been treating a significant region of my Crohn's and it has gotten WORSE! Remember this is an autoimmune disease which means you have a white blood cell or group attacking your GI tract causing the inflamation/ulcers/strictures or whatever combination you have. If left untreated your disease will worsen and I speak from experience. I began getting fed up with Asacol becasue it was not doing anything and began to rarely take it. I actually found myself getting a bit better as you described. I decided to switch doctors and am now on Imuran and within 2 weeks it has helped a lot. I have had some side effects though which I will be discussing with my doc very soon. I wish you all the best and always consult your doc before making any major desicions because while we are all experienced with the disease by now I'm sure our docs learned much more in the many years spent in med school.

 

[pb4]

It's really tough when it comes to meds and CD...

I myself am either allergic or non-responsive to traditional meds used for IBD...Pred used to work great (short-lived of course) but even that no longer has any affect on my symptoms. Luckily when CD is affcting my rectom (proctitis) I am able to get relief at some point...so at least the rectal meds still work when needed for me.

I've had flaring CD for the entire 18 yrs of having CD...I went 11 yrs with no treatment (other than pred on occassion when I just couldn't take the severity anymore of the symptoms) and rectal meds as I mentioned above.

I never had any internal surgeries as a result and I'd say for the majority of my 18 yrs, my flares have been severe-moderate. My CD mainly affects my colon, on and off in the rectom.

About 7ish yrs ago I got to a point of flaring quite badly with no break and pred wasn't working anymore...in my desperation I tried the natural route and to my huge surprise found some relief...not full remission, still have major issues with urgency and with some frequency but it's soooo much better than it had been for a long time.

So as with everthing else, it varies from person to person, I was mostly severe yet didn't end up having any surgeries, perforations and such and that's almost 2 decades now of no RX.

Of course what works for some doesn't work for all and it's often a combination of things that work best compared to just taking one thing.

For anyone who's interested here's what I use;

Fibre supplements daily (as directed by my GI) and indefinitely
Bee propolis
Omegas 3-6-9
probiotics (a great one from Sangsters called ProBio TX-11 (Primadophius Reutier is another great one)
vitamins A and C-Calcium Ascorbate (easy on the gut)
vitamin B12 (which I use only because I was in the beginning stages of permanat nerve damage due to lack of B12 being absorbed via foods alone)

I've also altered my diet, I followed the many guidelines I'd seen on google and went by that...learning that fast-foods, processed foods/beverages, refined sugars, sugar alcohols (anything ending in "tol" sorbitol, malitol,ect) animal fats, caffeine can all exacerbate IBD symptoms.

I also exercise regularly.

Like I said, I'm not 100% but I'll take the average 5/day (sometimes more, especially during that "time of the month", but not often less than 5/day) over the 30+ times/day with tons of blood, mucus and bad enough lower back pains to put me in tears every time I was on the toilet....my major issues are still frequency (since average of 5/day isn't normal for me so it's not remission) and urgency (I cannot hold my bowels if my life depended on it and I have a super short time frame to get to a toilet in time)...even though my stools are formed (thanks to all the above listed of what I take daily and diet altering) I still cannot hold them in...that may largely be due to the serious issues I have with my perianal crohn's skin tags.

Be well everyone, and keep trying new things (one at a time so you know what helps and what doesn't) until you find what works, then stick with it, and don't give up hope, I almost did and it wasn't pretty.