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Wednesday they want to put me on meds I am afraid of!!!

Hi,
I am a new member. I have had stomach issues since I was 17, and I am now 41. To give the full history, I was unable to digest food when i was born and in the hospital as a newborn. All cleared up and had no real problems until around 17- after a trip to Jamaica-stupidly drank water from a stream. I've told doctors about this. I was diagnosed with IBS and then Crohn's back in 95, then told that was not what I had. October 2011, after a colonoscopy, DR said I had Crohns ( in a letter). Then I received another letter saying it was just infection. Then, I was diagnosed with Crohn's last March- 7 ulcers in my colon and ileoccu....(sp?). The doctor wanted to put me on Humira. I felt like I had managed what was obviously Crohns for years on my own, and that this was a drastic measure. They then wanted to put me on Remicade then Imuran (sp?). I did a regimen of steroids, began exercising, eating right and juicing, no gluten and did better. I may have gone off the steroids too soon. Probably did a full 6 weeks on them from start to wein. However, this past january the flare ups started and they have come each month-with January and February accompanying the onset of my period. I have been taking Dr. Ohhirra's probiotic professional formula, colostrum, glutamine, ph drops in my water to alkaline as much as possible. The past 2 flare ups I took cipro to calm the infection which worked, for a month. This time, I went to the DR I saw another DR, and he would not give me any cipro. He wanted to put me on Asacol. He pretty much discounted me when he found out I had not taken the medicine.

So now, I feel beat. Like I have to go on this medicine and it scares me so much. I have read on here about LDN and others. I have a dr appointment wednesday with my DR and feel I need to discuss possible medicines and try to get it under control I can't live like this. I don't want to be on these meds for life. And I know they harm your body. It is counterintuitive to me to take meds to lower your immune system. It seems there should be an answer. I want to eat again! I have lost 45 pounds in the last year....although I needed to lose some:) But now, I do not need to lose anymore!


Any info, advice or help appreciated! I need to be prepared for an indepth discussion with my doctor on Wednesday.
Very weary of the medical professional- I question motives.
Thanks,
lori
 

afidz

Super Moderator
I know meds like Remicade and Humira are scary, and I understand why you wouldn't want to be on them. Crohn's is an autoimmune disease. Our immune systems do not recognize the cells in our digestive system and attack them like they would with a cold or something. Drugs like Humira and Remicade can help protect your digestive system. Going with out meds can be very harmful to your body. Crohn's can be doing a lot of damage with out you feeling any symptoms whatsoever, and a lot of times, the damage can't be reversed once its discovered because it went to long. Self medicating can be very dangerous as well. Doctors know what they are doing when they prescribe these meds, and how they are supposed to be taken needs to be followed to a tee.(I am not sure if you were self medicating, you didn't say, I just wanted to add that in)
There are some people that have been able to manage their disease with extreme diet change, but I don't know very much about that aspect of it. KWalker as had success with the SCD, so maybe talk to him about his experience with it and see if its something you would be interested in. Gianni has ( I believe) managed his disease with juicing, but I understand that Juicing can be expensive, but that might be an option for you as well.
It is important to understand that although those diets helped those indviduals, they don't work for everyone.
I hope that what ever you decide to do works out for you and you can start to feel better.
 

KWalker

Moderator
As I continue my education I continue to learn more and more about the pharmaceutical industry that many people are unaware of, but also makes me hesitant to trust a lot of doctors. I know before I even start to post this that people will disagree with me, and that's what I expect as people only know what they're doctors tell them.

Doctors will never tell you the diet can work because a. They don't know anything about diet because its out of their practice, and b. They most certainly get incentives for every prescription they write, whether people want to admit it or not. I know first hand about this as well after my doctor told me he refused to see me if I didn't take Imuran. Pharmaceutical companies persuade doctors with incentives such as lunches, funding, etc and therefore doctors are going to inadvertantly continue to favor those drug companies.


Now, a lot of medicine isn't nearly as effective as many people are led to believe. Of course there are laws that are designed to make sure companies remain ethical during testing, there are so many loopholes it's unreal.

For example, did you know that a lot of companies (instead of using a placebo) will compare their new drug with a drug already on the market. There are essentially no rules for this so drug companies are obviously going to pick the shittiest drug currently available to compare too so their new drug seems better. Not only that, there are no laws that state was size of sample pharmaceutical companies use to compare too. This means that they can not only use the shittiest drug, they can also alter prescription size so the patient either doesn't get a proper dose, or they raise the dose specifically so the patient has side effects. When you compare that to your new drug, its going to make yours look so much better. I could go on forever with things that make the pharmaceutical industry.

Now, I'm not saying people should avoid medicine because it is obviously very helpful. What I'm trying to say is that when your doctor tells you "take this, it will work" so you justify the negative side effects in hopes of having success with the drug, you're basically taking a chance because the medicine doesn't work for everybody. Itks a big trial and error with medicine. Some have no side effects but huge success, some have no success but have side effects.

I guess what I'm trying to say is to just try and educate yourself and don't feel like your doctor is a god because they know a lot less than they let you believe. And when you get a forum with a large number of people you're likely to get a lot of info passed on which is created by doctors that put a scare on people that if you don't take your medicine you'll pretty much die, and the people that will tell you the same, are often the people that are on medicine and only going by what their doctors said.

Now, a little background about me. I was diagnosed when I was 2 and I'm now 23. I've been on medicine for pretty much my whole life but I stopped all medicine in 2010 when I was having some side effects and not having much difference with crohns. I've had no major surgeries for crohns either. I started the SCD diet and followed it 100% and for the first time in my life, had a solid BM. Something no medicine has ever given me. I have since altered the diet so I follow it about 80% and I eat a few things that aren't on the diet and I take organic psyllium to offset the difference. I'm healthier than a lot of people that don't have crohns. I'm a full time university student, I have a full time job that I go to when I'm not busy with school, I live with my fiancee and we live a completely normal life.

Again, I'm not telling you to avoid medicine because I am in no way anti medicine, I just feel that (for milder cases) there are other alternatives. I, personally would only take the medicine if I was in much worse shape than I am in. Also, when dealing with heavy medication make sure you are with a doctor you trust and lilke. There's nothing worse than a shitty doctor, and when you're dealing with medicine like Remicade and Humira that you feel comfortable with the doctor that's going to hopefully keep an eye on you.

If you have any questions, feel free to post or send me a private message.
 
I am a doctor by training and I agree with a lot of what KWalker wrote. I hope your doctor will discuss options with you and tell you his/her take of the pros and cons of each. A second opinion may be useful too.

Sometimes doctors prescribe treatments in a knee jerk way --without thinking about all the options, or about which one might be most appropriate for an individual person. I have had doctors tell me that I needed test a or treatment b. When I asked them to explain why it was necessary or the only option, they backpedaled and sometimes said it wasn't necessary at all. The thing that shocked me was that in these cases, the doctors seemed to have given very little thought to their recommendations.
 

KWalker

Moderator
You're exactly right xmdmom. A lot of doctors get so used to prescribing medicine that they don't even know why they do it anymore, its just comfortable for them to stick with what they've been doing.

Also, doctors aren't scientists. They're more like marketers or sales professionals. Scientists do the research and then present their new product to the doctors who, in return present it to consumers (us). Medicine wasn't designed to help people. Sure that's a part of it but pharmaceutical companies just want your money. Think about it, researchers would be stupid to spend money on finding a cure. If people aren't sick, it only means the pharmaceutical industry isn't bringing in money. And that's why they have pictures of birds, trees, sunshine on their planphlets because that's what gets people to buy their mediicine when they believe their life could be the same after taking that pill/shot, etc.

And good for you for becoming a doctor xmdmom! Are you a licenced medical doctor or have a PhD in a related field?
 
I was a physician (ped. endocrinologist) but chose to change careers to teaching! It's a long story but I checked a box when I was 17 and was accepted to a 7 year college/medical program without really knowing what medicine was all about. And in the end, I really didn't like it.... Live and learn.
 

KWalker

Moderator
Oh wow, that's so awesome though! We don't really have fast programs over here to get a PhD so I have to do mine the long way. I have completed a Child and Youth Worker program through school but decided to continue on for further education so I am now studying Psychology and Child and Youth Studies with plans to drop CHYS and pick up Neuroscience. This is my 5th year in school and have awhile to go before I can get my PhD because in Ontario we have to do all this post graduate stuff rather than just one program like yourself.

I'm working towards clinical psychology so I can ideally open a private practice or work with addictions
 
That's a neat story KWalker, about looking to get into psychiatry, & open a private practice. Thought to mention, and you might already be aware of this, but of late a group of psychiatrists have begun to incorporate the SCD/Paleo diet into their practice. The few doing this have been referred to as Evolutionary Psyciatrists. Over the weekend I was just reading that a group of them held a conference out west not that long ago.

One of the more popular Evolutionary Psychiatrists is Emily Deans. She has a couple blogs where she writes about her work - one at Psychology today

http://www.psychologytoday.com/blog/evolutionary-psychiatry

&

Her private at:

http://evolutionarypsychiatry.blogspot.com/
 

KWalker

Moderator
Oh nice, thanks for sharing that! I've learned about evolutionary psychology in the past but wasn't aware they were interested in incorporating SCD/Paleo as well
 
Hey kayalo,

I agree with Kwalker that meds are not the solution for Crohn's. I see them as a piece of the overall puzzle. There are some (few) people who do great without meds and there are some people who do badly even with some combi treatment of biologics.

For me long term usage of aza is part of the puzzle. I tried to phase them out and didn't take any meds for two years and the result was inflammation, lost weigh and pain.

I am on aza again since 2010 and in combination with work out, vitamin therapy, battling my iron deficiency with iron supplements and finally an effective diet I basically got no symptoms at all these days.

Anyway, you are right that foremost you need to get your Crohn under control. Immunosuppressives can help, despite potential side effects. Before trying aza or 6mp, I would definitely not go for biologics. Having done research into LDN lately, I think it looks promising but unfortunately there just hasn't been any long term broad study with enough patients to make informed decisions about the effectiveness of LDN. Having said that, at my next GI appointment in May I will ask him about his view on LDN.
 
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Hello!

I am an ex-nurse. I learnt very early on in my job that if you want to know anything about medicines ask a pharmacist. They have far greater in-depth knowledge of drugs than doctors have. We were lucky enough on my ward to have a dedicated ward pharmacist who always accompanied to doctors on the ward round and I learnt loads just by listening in to what he said.

Here in the UK pharmacists are a hugely under-used resource, and they generally really appreciate people coming to them directly rather than assuming the doctor knows best. Obviously doctors have the experience of how each of their patients responds to a particular therapy, but the finer detail about side-effects, interactions and alternatives is also the pharmacist's speciality.

I am lucky enough to have a close friend who is a pharmacist, and she is equally interested in alternative therapies as well as conventional treatments, and I at least know that she has the knowledge behind which option she recommends.

Is there a local pharmacist that you could arrange to talk to about your concerns?
 
He wanted to put me on Asacol.
Hi kayalolo.

I've been on Asacol for years for my ulcerative colitis. It has been effective and I have had virtually no side effects from it. It is basically just a variant of aspirin, with a very thick coating, so it makes it through your stomach to your intestines. It acts to decrease inflammation.

I can't say if it will work for you or not. As others have said, make sure you discuss alternatives with your doctor and all the pros and cons. Good luck
 
Thank you so much for all your advice....to all of you. My doctor has now changed my dr. appointment to Thursday because my normal PA thinks I need to see the Dr. who did my colonoscopy. I asked them if I should start steroids because i still have some left from before, but they want to see me first. So i have been in pain since Monday, can't eat, and can't work. My cousin told me to use Castor Oil packs with heating pad. It really helps the pain. The deal is, if I don't eat, i don't have pain!

Thanks again to all, I will discuss the possiblilities with my doctor and hope he will listen to my concerns as well.

kayalolo
 
Hi kayalolo,

I agree that drugs can be scary - from the time of my diagnosis I had chosen to do the nutritional therapy (only drinking Boost (similar to Ensure) for 6 weeks) instead of taking prednisone. I also have tried quite a few of the "traditional" Crohn's meds and have had some bad side affects from them (or found that they didn't help), which makes me hesitant to try more. However, this past February I wound up in the hospital for 2 weeks due to a perforation/abscess in my small intestine and now am awaiting surgery in August. The question I ask myself now, is if I had stayed on one of the medications that I didn't think was working, maybe I wouldn't have ended up in the hospital. Maybe the medication wasn't helping me entirely (I would still have severe pain during flares) but, maybe it was preventing a worse situation (like the perforation).

Just something to keep in mind. Best of luck at the doctor's office!
 
So I went to Dr. It started really bad, but ended up being a good visit. I felt like he explained everything to me well and answered all mine and my husband's questions. I started the steroids today and he took blood to start me on imuran. I am nervous about this but feel much more educated about the actual risks. I will try it and see. He said he will check my blood every 2 weeks for the first couple of months.
Thank you to all who helped me with information and shared experiences!
 
agree with concern about imuran/remicade/humira group as doc wanted me to go on when I wasn't symptomatic and for a year at over 20k pounds a year, and documentation says you can become intolerant to it.

I'd already been intolerant to aza and mercap, so turned to diet, having already read about LOFFLEX, got in to see Prof Hunter in the UK and still well, since starting last august.

So agree with all the comments about diet above. Know of someone over 60 who's had it most of his life and he knows what food gives him problems and is fine...
 
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