Does anyone else NOT take medicine?

[KWalker]

Exactly like it says, is there anyone on here that does NOT take medicine for their crohns? If so, how long? What do you do in exchange? (Diet, etc) Do you notice any differences? etc. I would like to stay away from the people commenting saying how important it is to be taking medicine and leave this for the people who aren't taking any.

Right now, I'm not taking medicine. I've been medication free for about 1.5 years now. The last medicine I was on was Methotrexate injections every week. I feel awesome! I still have diarahea all the time, and I get the occasional stomach ache but it just comes and goes within the minute (like a little wave) and then I'm fine again. I maintain a pretty healthy diet with lots of veggies and greens, lots of fish, chicken, etc. There's nothing I really stay away from either as far as food, and I do enjoy a "Double Double w/Milk" to get my morning started everyday.

I have a colonoscopy on March 29 to see how I really look inside, and I'm really hoping I can stay medicine free for now.

 

[Manzyb]

I have occasionally been known to go off all medications. At first I always feel great, but then it ends up biting me in the ass!! Both those few months when I hadn't take any meds, I did feel really great... until I started feeling really bad!

Hey, if you're feeling great and do not have to take meds. Then why do it? I, unfortunately, cannot go for very long without medication, because I get very very ill without it.

 

[KWalker]

Did you recently change your username? I remember seeing your picture but I don't remember them with that name lol.

Although I'm sure lots of people would argue it, I completely agree that why go on medication if you don't have too. It sucks that you get very ill when you go off meds but I bet it's nice to not have to take them eh? lol

I think that's the reason why I stopped taking my medicine (at the time Methotrexate injections) was because I did them myself and I would miss a day so I would say "I'll just do it tomorrow" then tomorrow never came and it turned into "I can go until next week without it" and eventually it just got to the point where I couldn't keep stopping and starting back up again so here I am lol.

I do worry that after my scope they'll try to put me on medicine but I also wonder if because of all the Remicade/Humira, etc I've been on that it could have really paid off and the struggle was worth it..

 

[Manzyb]

I didn't! This has always been my username! hehe

I haven't gone off meds in a long time. The last time I did it was like 4 years ago and I ended up in a scary situation. Before that though, it was always a huge relief!! I didn't really think about what wuold happen tomorrow, was just thankful that I wasn't taking medicine! I think it was sord of a rebillious thing on my part when i would do it. I was young. I was 15 when diagnosed and didn't want to accept it all.


Seriously though, if you are doing well and feeling well, then I just don't see the point! I hope they don't find anything with your scope and won't have to take anything. If its all clear then maybe you'll be able to continue med free for a long long time and be healthy!

 

[archie]

Hi I'm med free since my ileocecal resection in nov 2010. Prior to surgery I was on pentasa and pred following an abscess and perforation but the tissue was fibrosed so although the pred made me feel better it wouldn't fix the problem. I had a scope 6 months ago which showed a couple of ulcers at sx site but no active crohns. I had my bloods taken last week and all normal even b12. I don't however refuse meds and I wouldn't advocate anyone else go med free but I just don't need them at the mo. If anything changes then yes I'll take them but both my GI, my surgeon (and me) are happy to try this route.

 

[KWalker]

Manzy- Interesting lol. I definately remember the picture of your daughter (?) in your signature and then the picture of you in your avatar, but the name didn't ring a bell lol. Oops!

Archie- That's awesome. I wouldn't advise against medicine either for people that need it, but like you said if you're working without it, why not.

 

[Lisa]

I used to go on and off medication when I was a child - would be on meds, go into remission then the doctors would take me off meds...until my next flare, then back on again.....one thing that happened though was the time between flares became less and less - from a couple years to a year and down to just months.....

Now, if I could, I would- but being on Remicade and knowing that it WORKS for me - I don't want to risk going off it and having a flare, then not being able to go back on again.....especially since I had fistualizing disease...

 

[Catherine]

I personally know one boy aged about (15 years) very mild Crohn's who is on medication for 3 months every year. He has had no flare at all.

Catherine

 

[DanHerefordshire]

I dont take any medication... well iv prob done about 4 months of steroids in the last ten years have been hospitalised for one week 3 times in ten years..they werent fun i maintain mine with diet/food and making drinks with all my nutrition in.. i can eat apox 70% of food and evan drink jack daniels.. i do get flairs from time to time tho

Im considering taking maintance meds in the near future though to avoid any further trouble and espicially as its got me in the dudoneum i really should not risk any further flairs..

 

[KWalker]

That's awesome! Three times in 10 years isn't bad at all. I think it's safe to say we all have days where we feel like crap but if you can handle it without medicine, then why not?

Do your doctors want you to take medicine or did they say it's okay to go without?

 

[DanHerefordshire]

to be fair my dr,s have never evan offered me any.. i think the resession is that bad here they prob have to try and hold back on perscriptions as much as possible...

i do have 1x liquid meal a day every morning that prob helps a lot as i get all my vitamins and nutriants out of it, its a 1 litre drink and i prob would not get any of them if i just had normal food 24/7

its only since reading this forum iv learnet about all the different drugs and what they do.. so if i end up in trouble any time soon i am going to ask about trying some of them and hopefully they will let me


i was just rading your first post again i do a lot the same fish and chicken are great eggs also and milk if you can tolerate it is great settles the stomach and cools down any inflamation all the tricks come from the diet i find.

i hope all goes well with your colonoscopy mine always shows slight inflamation and usually a couple of ulcers e.t.c... but it always seams to stay at that level 80% of the time

 

[Jennifer]

As long as you get checked out to make sure that you're ok inside where you can't see, even if your symptoms are minor, then by all means go without. I've gone without before and I had a partial blockage and then resection because of it.

My sister has been off meds for many years and does not get regular check ups. She has bouts of bleeding off and on along with pain, diarrhea and nausea from time to time. To me, that's no way to live. She also doesn't do anything about her diet, just eats whatever (I honestly don't think there's a huge connection between diet and Crohn's, just sharing info for those who do). Basically she's been in an untreated flare for about a decade or so now without any tests being done. She's also told me that she doesn't want to live a long life. Hopefully she changes her mind about that before its too late.

Not pushing meds or anything, that's just someone's story that I know personally. Her story is irresponsible and naive. Yours is not because you do actively see a specialist to make sure you're ok. The longer you can go without meds, the better, just take care and remember that even minor symptoms don't mean a minor condition.

 

[Andjela]

on and off

i had been off meds for about 6 years (no 5 ASA worked, I had no interested in anything "stronger") and throughout this time always in a state of a mild flare with serious anemia and constant bleeding. i figured it is ok to roll with the disease, and i delt with it with homeopathy, natural stuff and/or patience. then i got tired of being tired and trying to live with diminished energy (and i had an opportunity to take a lucrative short term extra job) so in october of last year I went on Lialda and felt great. in december developed acute intolerance syndrome to Mesalamine that send me into a flare and since then off of meds again.although i am very conservative with meds (obviously) i am begining to wonder how long i can go on like this. but then i think of the side effects i would have to deal with and think, "what is the difference between putting up with bleeding and putting up with side effects of say 6 MP or Remicade (my only two choices now)?"... on the fence about that.

if you are feeling great w/o meds keep up, but be ready to deal with discomforts. i think it is worth putting up with it for as long as you personally can.

 

[KWalker]

I agree. I think for me personally the biggest thing was when I was on some of the more dangerous drugs (Remicade) going through all that, but not feeling any better while on them. That, and worrying about more drugs effecting possible reproduction down the line and effecting my ability to have children later (even though I'm male, some do effect sperm). Its been a few years easily since my last scope so I am eagar to see how things look.

To be honest though, and I know this will sound stubborn but I don't know if I would go back on medicine right now unless the doctor told me it was an absolute must.

 

[Andjela]

you would know it

if it was an absolute necessity to be on meds, you would already know it. the sympoms would tell you.
my prediction is that you will show mild inflamation and will be able to continue to manage the illness the way you have been so far. at least that is what i hope will happen for you.
let us know how you make out with the scope

 

[KWalker]

Thanks. I'm hoping so, that would be the ideal. It sucks that it's still a month away but this was the earliest opening they had. I will definitely let you guys know how it went.

 

[CLynn]

I was off meds for 7 years, until just recently this fall. After my resection, I was able to go without, this is the longest I have gone without meds. My Crohn's wasn't active, and the specialist couldn't get me good enough statistical proof (aka high enough numbers in the stats) that taking Pentasa or Asacol during a remission would keep it in remission. The stats weren't high enough to justify the side effects I incur with the meds. I will always medicate when my Crohn's is active, however, after all these years of meds I fully realize that every medicine they give us causes other things to go wrong in our bodies, so unless there my Crohn's is active, or they can give me damn good stats to take a medicine, I am NOT going to.

 

[CLynn]

That's a very long time you made it without meds, Moogie! My Crohn's was so non stop the first 10 years, has just been more quiet the last few years.

 

[Miss Underestimated]

I went for years without any medication except Imodium - I was undiagnosed. Initially I was extremely sick - antibiotics seemed to help so whenever I started getting sick again, I did whatever I had to to get antibiotics. I knew there were some things I couldn't eat, but other than that I didn't use any special diet. I ate peas, popcorn, beets, you name it. Just no raw veggies, and very few raw fruits. Looking back, I was probably in remission most of the time.

That ended when they took me to the hospital in an ambulance, and I had surgery for a perforated colon. At that point I was diagnosed with Crohns. They did not put me on medication after the surgery - they said that people often go into full remission and stay there after a resection. Unfortunately, at the beginning of the 3rd year, they detected ulceration and inflammation in my large and small intestine. Now I am on medication.

 

[chrisnsteph1022]

I was med-free after getting my first flare under control for about 5 years. I had a routine scope that showed 'quiescent' Crohn's. Basically, it was there microscopically, but not causing any problems. I started taking Apriso. Unfortunately, that didn't stop a severe flare a year later. I'm now on Remicade, Lialda and Imuran and do not plan on stopping.