Who is responsible for treating your Crohn's Disease?

[mikeyarmo]

Everyone has their own ideas and opinions of what works and what doesn't work when trying to treat Crohn's Disease. While some people are happy with the advice and treatment they receive from their doctor, others may try to find better results through their own personal trial and error with different products and treatments or through the help of a naturopath. Of course some people find that a combination of all or some of these things is best for them.

Please let us all know what you are doing to treat your Crohn's.

I personally was working solely with my doctor until early this year. Since then I have seen a nutritionist who has recommened some dietary changes. I also was taking a variety of different supplements from a health food store (everything from magnesium and fish oil to products like Primal Defence and Intestinew). Now that I have recently had surgery I do not know exactly what direction I am going to head in next to try and ensure Crohn's Disease does not affect my life any further.

 

[Casper]

I just go to the doctor every so often to see if any changes need to be made with my medications. Things have been staying the same for quite a while now, which I am happy with. I do not have any side effects from the medication, so I am more than happy to keep taking them. The status quo is working for me.

 

[danielle]

Just my opinion...

I think you are responsible for your own actions as it pertains to your health. Being aware of your symptoms, reactions to what you eat, proper nutrition and exercise, etc; but, your doctor is responsible for monitoring your reactions to the pharmaceuticals prescribed to you and to ensure you are on the right track and offer any new information that may be beneficial to you.

 

[ReeRee]

I work very closely with my family doctor, my gastroenterologist, my nurse practioner, my herbalist, my dietitian (did i spell that right?), my 2 surgeons, and my gynocologist.

Funny story time.....

One of my surgeons name is, and I'm really serious here, Dr. Weed. I asked him once if he knew Dr. Feelgood. He did my last surgery while wearing a tye-dyed surgeons cap with Papa Roach stitched on the front of it. I love this man!

I swear it's the truth..lol.

 

[Kossy]

I think you are responsible for your own actions as it pertains to your health. Being aware of your symptoms, reactions to what you eat, proper nutrition and exercise, etc; but, your doctor is responsible for monitoring your reactions to the pharmaceuticals prescribed to you and to ensure you are on the right track and offer any new information that may be beneficial to you.

I couldn't have said it any better.

 

[Kate]

Well I think its improtant to find a balance between meds and other so i take the meds im told and use natural methouds with it to help reduce the amount of meds i need to take in the long run. I also try to reduce the outside factors where possible to help keep me in remission

 

[marcia]

I see my GI on a monthly basis (sometimes more) and I use my general practioner for most common problems (she is in frequent contact with my GI). I make sure that I keep a constant food diary and stay on top of my vitamins and medications.

Marcia

 

[cookey]

I was lucky enough to find one of the top GI doctors in my city. He was always by my side, holding my hand at times..assuring me that I would live a normal life with Crohns. You know how they say, some doctors have a bad bed side manner, well not Dr. Sakur...one of the best around, I recommended him to my Uncle and Cousin, who also suffer from Crohns. They love him, and we absolutely need more Doctors like this man. I really think if it hadn't been for him, I would have lost it. Many GI's before him, just didn't have the compassion like he did.

 

[Tami Lynn]

I think you are responsible for your own actions as it pertains to your health. Being aware of your symptoms, reactions to what you eat, proper nutrition and exercise, etc; but, your doctor is responsible for monitoring your reactions to the pharmaceuticals prescribed to you and to ensure you are on the right track and offer any new information that may be beneficial to you.

I agree 110% with the above statement!


I believe it is important to have professional guidance whenever possible. A good doctor will come up with an individualized treatment plan that is custom-designed for his/her patient (IMO).

I have been on many prescription medications over the past 21 years and personally feel that most pharmaceutical medications are basically evil. Let me explain: some of them do help with symptoms, and for that I am greatful...BUT none of them have ever been proven to get to the source or underlying cause of the symptoms they are treating (i.e. the root of the problem). They have never cured any ailment and SOME of them have terrible side-effects, can cause allergic reactions that leave people worse off than they were when they started, and can even prove fatal in rare instances - Drugs are Bandaids!

We don't know everything, anymore than the doctors do (even though they are less likely to admit that). I say learn ALL you can and get good help whenever you can!

I have a GI doctor, but he doesn't have the final say so in what happens to me or the treatments I will receive - I do! I hire him for his knowledge in the medical field, experience, and guidance, and in return, I expect him to listen to MY thoughts and feelings where MY health is concerned (as well as respect my knowledge of my own body and personal decisions).

I think that we are the ones who are ultimately responsible for finding out what works best for us (i.e. foods, medications, nutritional supplements, stress reduction techniques, etc...)

Although I am not afraid of confrontation when it's called for, I generally avoid the things that I know will cause stress in my life.

What Works For Me: First and foremost having faith in God (for His goodness, guidance, and direction). I also attempt to get plenty of rest, drink lots of pure water and exercise like I should (I need some improvements in the exercise department). I take probiotics, digestive enzymes, glyconutritionals, anti-oxidants, vitamin/mineral supplements, eat fairly healthy, and avoid overdoing it on the "naughty foods." I generally try to stay away from anything that has been remotely suggested to aggravate IBD (drinking pasturized cows milk, drinking alchohol, smoking, stress, etc...). Basically...use the wisdom and common sense God gave me.

I've been virtually symptom-free from CD for the past 6 years (aside from the occasional and annoying bowel obstruction as a result of post-surgical adhesions). I currently take no prescription drugs whatsoever (aside from monthly B-12 injections). I am not opposed to trying new things, if I feel that they might help.

That's what I do.

 

[cagfire]

I totally agree with Tami Lynn!

I spent many years being the doctors guinea pig until I realised that the meds were not doing anything.

I became an informed patient and chose my own route in life. I manage my crohns with lifestyle and diet. I do have sever joint flare ups and I can always feel the inflammation attacking the bowel, but I have a great lady GI who I see when I feel the need, and she knows that if I make an appointment I have a genuine concern or need advice. I see my local doctor and keep them informed about my health and status and I get regular B12 injections. I stock up on pain killers for when I'm having a bad time.

I believe that the patient has the right to make their own decisions and that doctors should respect that.

I treat myself but I avail myself of the services of great medical professionals when I need to.

 

[Maggie-Muffin]

hello, I have a family doctor who I see every month, my GI when the need arises, my surgeon every year. now they want to add a dietian again to the list

~~~HUGS~~
ika:

 

[SoccerMom]

I have a GI & a family Dr. & GYN . Most of all I try to treat myself also. Love my GI though. The more the merrier!

 

[KCMike]

I haven't had any crohn's related symptoms since my surgery last october. My GI wanted me on Pentasa and iron supplements. I haven't been taking either one. My body will tell me when it's time to go on any meds. I will still stick to scheduled appointments with my GI.

 

[katiesue1506]

I actually lied when I answered (on accident) I've been using my meds, myself (to choose better foods), my GI, and a natural way of healing.

This will sound really weird... but my family is big into quantum touch... and so they've been trying to heal me with that. I dunno what I think about it yet. I have seen some improvements after they've "worked" on me... but I'm the type to write it off as a coincidence.

For a while I was also taking natural supplements.

 

[Cara Fusinato]

I am at 10 months since diagnosis . . . first treatment option was immediate surgery and immune suppressant. Shunned that. Second doc. suggested pentasa, entocort, and immune suppressant . . . then I decided to try mangosteen juice. So, alternative med. for me works REALLY REALLY well. If I have eaten badly (fruit/vege, too much fiber, or didn't chew well) I can sometimes feel a slight twinge where my narrowings are. Then I take entocort for a day or two and it stops and I go back to just juice. But, that's me personally. Recently I have added in Emergen-C vitamins about 2-3 packets a day and it works really well. Even better than just juice. So, my vote is combination but it's mostly me with doc. there for backup.

 

[Jeff D.]

I work on my own and with my GI to get myself better. Its not them who are suffering it is me so I need to care for myself and watch my actions.

 

[wwwchachi]

I am ultimately responsible for choosing to go to the doc, which doc, do i take his recommendations, etc. But I trust in the professionals to lead me the right way...and in my heart and the lord to help me decide whether or not to follow.
-Scott

 

[vickyoddsocks]

Me and my DotorS decide whats best, they no i am now experienced enough to be confident in help making my own decisions, but at the end of the day, im not a doctor, so i still need them! lol!

 

[Op.28/18]

I'm the only one responsible; I don't go to doctors anymore.

I was diagnosed several years ago; the doctors had no clue what they were doing. They put me on high doses of drugs, lied to me about side effects, denied side effects, refused to treat side effects--all in all, caused a great deal of needless harm; and they didn't even come close to putting my disease in remission.

The last time I saw my GI doctor, he wanted me to be hospitalized. But, because it was summer, he said he'd wait until my next appointment and then he'd want me hospitalized; an odd calculus: if I really needed to be hospitalized, why would the fact that it's summer figure into his decision? (I guess maybe he thought that since it was summer and school was out, he was being nice. But if he really thought I needed to be hospitalized, that really doesn't matter. He wasn't a very thoughtful person though...)

If I kept going to doctors, I'd probably be at least $100K in debt from hospital bills, my disease would still be active and severe, and I'd still be on drugs, causing even more damage to my body, lowering the overall quality of my life.

I've been much better off without doctors. I really regret going to a doctor in the first place. I'd be better off, much better off, if I never did. But I thought you could trust doctors. But the fact is, a lot of doctors simply don't care. They're in it for the money, and they know nothing's going to happen to them if they don't do their job--so why do it?

Plus, Crohn's isn't a glorious disease; other fields, I suspect, generally attract better doctors.

 

[Guest]

hi Op, and welcome to the forum

you say you don't go to doctors any more - how do you treat your symptoms? is it diet/supplements, or can you get hold of meds without prescription where you are?

 

[Op.28/18]

hi dingbat, thanks for the welcome.

diet is the main thing for me. i probably eat less than 20g of sugar/wk. i also eat a lot of bananas. i don't eat any red meat. i avoid dairy as much as possible, which sucks, because i love dairy.

i also take probiotics, which i get online.

 

[Guest]

it's quite amazing that you can keep the Crohns on an even keel without any traditional drugs, Op - and well done to you!

i have great faith in probiotics too - although i don't take them regularly. however, if ever i or my kids have had a course of antibiotics - we go on probiotics. really seems to help.

 

[butt-eze]

I have an amazing doctor that listen to my suggestions for my treatment and then goes from there. We are almost always on the same page and therefore I don't need to worry about any big surprises. When we recently decided to start Humira it was what I would have chosen for myself.
The great thing is that my doctor knows I'm well read on the subject of Crohn's.

 

[ladyB]

I do what the doc says plus I use supplements along with everything.