How many ppl out there have gone without medication? Mild vs Severe? Relationships?

[Sea_Star]

How many people on here have never taken meds, or came off them, and for how long? What were the outcomes?

I'm thinking it's more frustrating having a "mild" case cuz you're always questioning the diagnosis and see meds as worse than....a stomach ache. I can't stand the thought of feeding my body poison, for some things which may never happen in the future...but apparently the inflammation "can" cause damage. This stresses me out so much worse than the actual illness. Not to mention I've never been on a date and when I was off the meds, I totally thought about how I would be able to, never having to tell a guy I was on meds!! But now, I'm scared I might have to go back on them...guys want healthy girls (sorry, emotional rant there)

I definitely understand those with more severe cases are looking for relief, but what about mild folk? What do you think?

 

[Orchid]

If you don't medicate "mild" can easily become "severe". Your inflammation means there is serious damage to the mucousal layers of the intestine, the part beyond the surface. It's like a cavity, if you ignore it it'll just keep rotting, and rotting, until what was a cavity is a rotten stump where a tooth used to be. Drugs aren't "poison", they serve well defined roles in protecting you from far worse consequences such as fistulas and blockages, or even serious surgery. Those horrible side effect lists? Most people won't experience half of them, and you hear about them so much because people who do fine on a drug don't feel as compelled to speak. You can be perfectly healthy again, once you go into a remission it's like you don't have Crohn's at all. You just take an extra pill in the morning (or evening) to help prevent it from coming again.

As someone else with "mild" Crohn's Disease I can see if I don't take medication it's just trading some short term comfort for horrific consequences in a few years.

 

[theOcean]

Agreed completely with Orchid. I also don't think you should feel the need to "hide" the fact that you take medication, especially with someone you're contemplating being in a relationship with.

I've been very open about my illness and my medications, and what I've encountered is that almost everyone at least knows someone who has this illness and understands why I need to take medication for it. If anything, it's made me feel like I have more of a community surrounding me, and my SO especially has been a huge support to me when I've been sick.

 

[Cross-stitch gal]

Over 14 years ago I went off my medications. But, at the time I was still taking sulfasalazine/azulfadine which was the first medication I was prescribed with. I did alright for a few months (don't really remember for sure how long).

But, I'd never do that now. Especially since I've just come off an ongoing flare that went on for 2 years. Basically for me it's better not messing with a good thing. I know that I've been married for over 14 years. But, it seems to me that those you date or are in a relationship with would rather have you healthy while on your meds rather than have you not feeling good without them.

I admit that it does get tiring having to explain whenever you take your medications around someone new. I still go through that at my work. I've been there long enough that most people understand and don't even notice anymore. But, if someone asks I just basically let them know that I have stomach issues and this is what helps keep me well. Sometimes that's all it'll take. Hang in there. :hug:

 

[ThanksP]

I once stopped meds for 2 years because I was feeling so good and got tired of taking so many pills. That eventually landed me in the hospital and on much stronger meds. I battled with a flare for two years after that. I've finally been in remission since 2011 and I faithfully get my 8 week Remicade infusion, even after moving to another country. I learned my lesson and will never do that again.

I don't hide my disease from people. But I tell them on a need to know basis. It's not because I'm embarrassed, etc. Only that I'm a private person and don't feel everyone needs to know my business. Plus, I don't like when I just meet someone and they tell me all their woes…so why would I do that to them?

 

[Absentminded]

My mum has UC and has not taken any medication for it since the early 1980s. She followed a very strict diet for a year which put her into remission and whilst she has minor flare ups now and then she just cleans out her diet and it goes away again.

Me on the other hand, I've tried and failed most meds going. I've been med free since my first surgery in nov 2012, although I've always been classed as having "severe, complex" Crohn's. My Gastro team are deciding what to do with me at the moment, as I've had 4 surgeries in 16 months, as although my recent scope was clear, it's unlikely to stay that way for too long.

I realise neither story is entirely what you wanted to hear. I've don't ok on no meds (my 2nd, 3rd and 4th surgeries were Crohn's related, but not due to inflammation) but I am anxious to get back on something just to keep me well.

 

[Lisa]

When I was a child and first diagnosed, the thought pattern by the doctors was to medicate until in remission, then go off meds until a flare occured. What happened over time was that the periods of remission laster shorter and shorter times while the severity of my diease progressed to where I eventually ended up with fistulizing disease. When I was in my early 20's I also didn't take the greatest care of myself, and would wait until the last minute to go to the doctor when I flared - which usually resulted in a trip straight to the hospital (direct admit) from my doctors' office.....he would also tell me that I never looked as sick as I really was - which is how I 'got away' with holding out that long and not having anyone really notice.

 

[wondering]

If you're debating stopping your meds, you should talk to your doctor. I've been considering it for awhile and recently brought it up with my doctor as I've overall done well for several years. While he said that he would prefer that I stay on my medications, he also said that if I feel really strongly about trying to come off that he would work with me to do it in a as safe a way as possible and figure out what we need to detect signs of recurrence early. I'm sure you wouldn't be the first patient to bring up stopping meds with your doctor.

 

[afidz]

It is not suggested to be off of meds completely. Even if you are feeling well, there may be active inflammation doing damage to your intestines that you aren't aware of. By staying on meds, you can reduce the inflammation and reduce the damage that can be done by the inflammation.

 

[DJW]

Severe crohn's. Had a wonderful 20 years with NO meds.

I should add I was put in remission surgically and it was before the use of immunosuppressants and biological drugs. I have no intention of going off maintenance drugs.

 

[Axelfl3333]

Why would you want to stop the meds which are helping you?there not poison and anyone put off because you take regular medication isn't,t worth knowing!if you were diabetic would you be embarrassed by taking insulin?
I have mild to awful crohns your miles better off keeping it under control,that's my experience,don,t stop your meds without a serious chat with your consultant or clinic nurse you could be flirting with disaster.good luck all the best

 

[D Bergy]

I have used LDN, Azathioprine, and Lialda. None of them worked long term. I am not using any medication presently. Although I might try Lialda again since it basically is for inflammation and not to bad side effect wise. I am not going without treatment, but it is unconventional and I happen to have a lot experience with it.

Just because the conventional treatments did not work for me does not mean any one of them would not work for you. Any and all treatments have a degree of risk with them. The biggest risk is that they won't work for you.

Crohns can go into remission but it rarely disappears for good.

Good luck, whatever you decide.

Dan

 

[joeyme1]

I don't like taking medicines and dealing with the occasional side effects. But, I like that the medications provide me days/weeks/months of feeling healthy so I can give my best to the people I know and love. I went for years without medication when I was in my 20's. Although I never had any major problems, I think my quality of life would have been better if I had a great GI and good medicine during that time.

 

[SarahBear]

As afidz said, being off medication entirely can be dangerous as you don't know when you actually have active disease - it can be completely asymptomatic. And as Orchid said, mild can progress to severe without any warning - there is no mild or severe case.

That being said, I am not currently on medication and haven't been for about four and a half years. However, I'm a little bit of an unusual case. When I was eighteen, I moved out of my mother's house and lost my medical insurance. The drastic reduction in stress (from removing my mother from my life), coupled with the methotrexate I had been taking, put me into remission. Without insurance, I was unable to continue my medication for several years. When I regained insurance, I saw a GI who put me on Pentasa. It didn't work out as I can't swallow pills regularly (if they go down, they come back up) and my GI is uncomfortable putting me on a stronger, injectable medication since I stayed in remission for so long without it.

Honestly, I would feel more comfortable being on a maintenance medication. I do, however, see my GI's point of view. If I had more options medication-wise, I would certainly push to take one now.

 

[Axelfl3333]

Pentasa comes in granule form,have you tried that?i take the tablets and find them difficult as well,there just that big!i have tried the granules but went back to tablets,the taste was vile.all the best
P.s sorry that wasn't,t much of a promo for pentasa

 

[PsychoJane]

Every case is different. General consensus would say being on maintenance drug is the way to go in order to prevent progression of the disease.

I am think highly of the natural balance of a system therefore I have hard time taking medication knowing they are not strictly targetting the causes of my crohn and I have lived it, experiencing about all side effects listed on packaging (not quite but I know some people have had similar experience and can relate to that).

My crohn is severe, was at flare one, was at flare two. In between, its dormant, no signs of it that can be picture on less invasive screening test, calpro, blood test. I was put on medication at both these occasions which never lead me to remission or to gain a quality of life that I judge superior to what I am having during my no-med remission. Considering that and a variety of others specific clinical reasons, I made the decision to be med-free with my GI considering the profil I have. The Risks-Benefits is not the same for every one and this is an important part of making such a decision.

That being said, a very brief synthesis of my case would me: Flare - medication - failure to medication treatment- surgery - 10 years with no med - Flare - medication - failure to medication- surgery - med free for the past 2 years and counting (touch wood).

If medication had proven itself to bring benefit, I would take them for the sake of feeling safe the disease won't be coming back too fast... But for me, it unfortunately did not reach that point.

 

[SarahBear]

Pentasa comes in granule form,have you tried that?i take the tablets and find them difficult as well,there just that big!i have tried the granules but went back to tablets,the taste was vile.all the best
P.s sorry that wasn't,t much of a promo for pentasa

The granules are inside of the capsules if you open them up. There's just too many of them for that to work for me, especially considering how many pills you have to take at once. Trying to take it just made me miserable four times a day, so it wasn't worth it in any way.

 

[Orchid]

Ugh yes, I've had big old capsules of of balsalazide get caught in my throat so I understand where you're coming from Sarah. Ten solid minutes of just feeling like you're going to vomit and/choke to death at the same time is no fun.

 

[Darmora]

I was diagnosed with crohns in 1977 yes 40 years ago. I've been on every single medication they've come out with. I stopped taking meds from age 24 to 30 and then flared badly. I stopped again whe I got fed up with side effects for 2 years. I am very lucky I've only had 2 surgeries but heading to another. Started Humira 3 weeks ago to hopefully slow things down. I truly believe if I'd consistently stayed on maintenance drugs I wouldn't be in such a bad place right now. I stupidly believed I could do without. So, don't go drug free. I was always thought to be mild to moderate. Now I'm classed as severe.