Guys, what if we just don't take meds?

Hello!

Ohk, so again, a really basic question.

What if Chronians, atleast those with the mild or moderate form of the disease, didn't take meds, or more specifically, didn't take steroids and mesalamines and stuff? What if we just took, say vitamins, iron etc orally and anti-diarrheals?
Won't this be a better choice?

I know I'm being stupid, but I'm really annoyed with the fact that our meds are rupturing are system, and thpugh prolonging our life, supposedly, are making it much much difficult for us to live it due to the long term side-effects we have to face. Not to mention the cost that goes into all this.

I mean, I was basically fine till a year ago, and after all this heavy medication, my health hasn't improved, it's just gotten worse! Not to mention the side-effects that the meds have started throwing back at me

I had to vent, sorry I'm so frickin frustrated!

Won't this be a better choice?

Probably no, because the the things you listed - antidiarrhoeals, vitamins etc. - do nothing to touch the underlying inflammation, whereas the meds sometimes do. The emphasis is on "sometimes". Meds do not work for everybody all of the time. They may work well at first and then stop working, or they may only work partially or not at all.

The goal of medication is to control inflammation. It's a worthy goal, I could only wish it worked better for more people in practice.

In a nutshell: I completely and utterly feel your frustration. The ones with severe disease are less likely to respond thoroughly to meds and the ones with milder disease would very likely be in remission anyway, like my brother. In my case, I wasn't on any medication for the first 5 years (couldn't tolerate the mesalamines), but it seems that according to this study early azathioprine therapy would have made no difference anyhow.

Early Azathioprine Therapy Is No More Effective Than Placebo for Newly Diagnosed Crohn's Disease

I can't read up too much on this stuff anymore. I find it far too discouraging. Basically, if you get Crohn's your best chance of avoiding the complications of Crohn's disease (strictures, fistulas, etc.) is to have a mild phenotype. Our current meds make very little difference to the disease's long-term course. Severe Crohn's sucks donkey balls, and there's still very little apart from surgery which can be done about it. Biologics are the best medication we have for now, and if you're lucky you can get a good few years out of a single biologic with few side-effects: I stress, if you're lucky. I was not and many people aren't.

Edit: Bullz, I just want to say, as much as I sympathise with you and feel your frustration and annoyance, you should not just ignore Crohn's disease either. Have regular checkups and make sure the doctor explains everything to you, so that you know what is going on with your disease. And try new meds; if a med hasn't done anything by 6 months it never will, so you can safely give up on that med and go to a different one. Despite my discouraging words earlier, you just have to try: most people get into remission sooner or later, whether it's via meds, diets, or nothing at all. There are a few folks on the UC and Crohn's boards who I privately thought would never see remisison without surgery, but who are now doing quite well.

Post Edited (NiceCupOfTea) : 6/4/2014 1:12:50 PM (GMT-6)

If you have mild disease, you can opt to be regularly monitored for the disease worsening through blood tests, colonoscopies, imaging and fecal calprotectin. For Crohn's in the small intestine the 5-ASA's (the most mild medication) are shown to be no better than placebo. I do think there is a role for the 5-ASA's for those with colonic disease for control of symptoms and prevention of colon cancer. If your disease is more advanced then I believe that you need the immunosuppressives. At age 17 you have many years to live with the disease. Crohn's is a progressive disease---for some of us, it advances slowly and for others it is more aggressive. The current thinking is to treat younger folks with the bigger guns medication right away to try to slow the progression of the disease. about 75% of people with Crohn's need surgery within 10 years of being diagnosed. Some people respond very well to the biologics and immunosuppressives and it may prevent or delay you losing your intestines later on. Your signature says you are on "probiotane." Do you mean Prednisone...steroids? If so, you should not be on them long term. If you were my child, I would want you to be on medication. If the Pentasa and Entocort are not working for you, then I think you might consider biologics. I suggest that you read more about all the treatments and maybe get a second opinion if you are not happy with your doctor. Good info can be found at the Crohn's website at www.ccfa.org. Good luck...I agree it is a frustrating disease, and I'm sorry you had it since age 11.

Sorry to have offended you NCOT. I didn't think you considered your disease "mild" or "moderate."

Well...I can only go by my personal experience for me...I tried a long medication vacation (about two years).  I felt so much worse by the end of those two years and so much better when I got back to taking my maintenance meds daily. Granted I was always a mild to moderate crohnnie and although mesalamine is shown to have no better effect...it seemed to have something for me.

I opt for as limited meds as possible as a middle ground....and hope that I don't need to change that as my activities of daily life are like an "average" person.

I didn't take my disease seriously and I certainly didn't take my meds as I was supposed too. Those decisions just about cost me my life. I now have a permanent ostomy and have to have another surgery this fall.

Take this disease seriously and take your meds.

This really is a lousy disease! I know I read everything in sight, and tried to make the best decisions I could. My disease was considered "mild" and no one suggested biologics. So I took Pentasa, hoping it would help, while clearly knowing the research that said it doesn't help more than placebo. I took a risk, I guess and I was maybe wrong since I needed surgery, or maybe not wrong since I didn't have to have side effects from biologics.
Tried lactose free and gluten free. Lactose free helps, gluten free made no difference. Not motivated enough for SCD...maybe I'm completely wrong.
All we can do is make our best educated guess and then spin the dice.
BUT...we have to stop blaming ourselves or each other. We got stuck with a chronic, progressive, incurable disease...at least for now. Just rambling, don't mind me.

Awww, Bullz, you're not being stupid. You're understandably frustrated with a disease that is a real challenge. Like people on this thread have said, all we can do is try to find decent doctors, do some research ourselves, create what systems of support we can, try out treatments, and hope it all helps. It really stinks that there is no clear path through this rotten illness! Best wishes to you.

Wow! 14 replies! This is the highest for me! Lol!
Ohk, 1st ill rant and then reply individually

Why I'm frustrated and mad is that I planned (and very seriously) of becoming a doc for the past 2 years and I basically had to give it up. My disease was at its peak during the deciding 3 hours of my exam.
Yeah, I had a maddening headache, stomachache AND lower spine ache during the MBBS exam. Not to mention the mild pain in my right arm and shoulder. Naturally, I sucked in my entrance exam, and now I will have to get over it.

I was really really serious and took my meds properly in the early months. But lately, when my situation kept getting worse, I would turn a bit rebel and miss one round in a day, thinking, what's the worst that can happen?! (i know that's really stupid)

I've become very moody, rude, irritated, cold and like to stay alone. I cry really easily now (was never a cry baby).

It sucks that everytime I stand up, I feel vulnerable, weak, and feel like I would faint if someone gave me 1 boxing punch! And to think I played outdoor sport for 2-3 hours everyday until 2 years ago!

My studies have dipped and dipped for 2 years, but still, with a newfound hope, I studied meticulously for 2 nd a half months, eating healthy food, NO junk, taking all my meds, and doing everything I could heath wise cuz I knew I was capable enough of being in with a chance. But Lo! I failed! because I couldn't sit through the exam properly. You know, I can have patience with one pain at a time, I've become used to it now, but all together was very heartbreaking. I saw it all go away in those 3 hours.

My problem is, where I study, I don't think we have a good gastroenterologist there. My parents live in the gulf, so I can get good treatment and meds here. But I come once every 6 months. I thought of going to college here itself, but its so very expensive! And I don't want my dad to be overburdened. My health costs are already high and there's a long way to go before I can earn for mysef.
(It's not like I'm doctor-less for 6 months. I go to a homopathic doc whenever I have an issue and usually it works. But I've noticed that it isn't of much help when im really stressed out..)

I'm frustrated cuz I know these meds are harming me too, cuz I think a student should be able to give an exam, and s/he should have a right to be stressed during it without killing the stomach or head

Hi Bullz,
I suggest that you go the the US Crohn's website at www.ccfa.org and read about all the different treatment medication and options. Watch a few webcasts and read about the medications. It will explain biologics in depth along with a lot of other useful info. BTW, being a "veteran member" just means that we've been around an post a lot...doesn't qualify us particularly as any more expert than anyone else, but your reaction did make me smile! Good luck with everything.