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11-10-2014, 07:56 AM   #1
WarrenVex
 
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Confused

I'm currently on 75mg of Imuran and 10mg Steroids and tapering down zero steroids in 2 weeks. I'm feeling like I'm in remission. Now my parents want the get me off all this medication and try diet and vitimans recommended from a Doctor who uses natural therapy (vitimans and special diet). I've also had allergy test and it shows I'm allergic to milk, So I've gone off this. I'm concerned I'm doing the wrong thing. This natural doctor charges through the roof and I'm sceptical. I'm only 14 and my parents say Imuran is poison and I need to at least try and go off it, as I can always go back on it. I'm worried it won't work as well if I do go back on it if I do have a flare up. Is there anyone out there in long term remission with no medication? I must admit, the side affects of Imuran do terrify me.
11-10-2014, 09:50 AM   #2
Clash
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There are a few people that have posted their kids experience with diet. None that I know of that have reached remission. There are some adults that have posted their experience using diets and other means beyond meds that have had some success. But Crohns disease tends to be more aggressive in children or follows a more aggressive course than in adults so that should be taken into consideration.
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11-20-2014, 06:25 AM   #3
Cross-stitch gal
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Have you talked to other teens who might have experience with diet? Talking to some people your age could help some too. If you haven't checked out our Teens Only Support Group, now might not be a bad time to do so. Here's the link to help you.

http://www.crohnsforum.com/forumdisplay.php?f=67
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11-20-2014, 11:36 AM   #4
SarahBear
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Hi, WarrenVex!

Like Cross-stitch, I'm also wondering if you've explored the forum a little and talked to others your age or in the same situation?

Are you still seeing the doctor who put you on Imuran, or has your care been transferred completely to the new doctor? Why are your parents so strongly opposed to Imuran?

You're very wise to be asking questions about your care. Are your parents taking your concerns and wishes into consideration?
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11-20-2014, 10:27 PM   #5
WarrenVex
 
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Hi, we are seeing 2 doctors. I'm currently on 10mg steroids and 75mg Imuran. Steroids will be Nil in 2 weeks. I'm super worried about using Imuran long term. The doctor I go to that uses natural minerals and vitamans says it is 'poison'.
11-20-2014, 11:37 PM   #6
Cross-stitch gal
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The thing with imuran is that your regular GI will keep a watch on you constantly while you're on it. If there's ever any problem, you'll get pulled off it. At one point, I was on azathioprine and I had my bloods checked every few weeks.

I'm not saying that natural minerals and vitamins aren't the way to go. But , I am saying that if you find something that works for you I'd look at sticking with it.
11-20-2014, 11:45 PM   #7
WarrenVex
 
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That's my concern. Imuran is working well. I feel like I'm in remission. Although coming of the steroids totally will be another test. Problem is that I'm doing both Doctor option at the same time, so I don't really know which one is working. My parents want me to try and come of Imuran in s few months time and see how it goes.
11-20-2014, 11:57 PM   #8
Cross-stitch gal
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I see. The steriods are the ones I'd be concerned more of getting off of at the moment. Honestly, they're worse than the Imuran. Best thing is to take one thing at a time. Get all the way off the steriods first and see how you're feeling with just the Imuran. Then, take things from there. If the Imuran doesn't seem to be working, then that's a different story.
11-21-2014, 01:04 AM   #9
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I agree steriods are worse to come off. They are the real reason you get your disease under control , so it is terrifying to come off. The side effects from the steriods (prednisone for me) were horrible. If something is working I wouldn't mess with it. Maybe the next time your in a flare your parents can go the natural way? Why fix something if it's not broke? If your meds are working keep with it. Being on medications like it was stated before you are monitored routinely for problems.
Stress is horrible for this disease, try to stay calm and don't get to obsessed with all the issues that come with this.
11-21-2014, 02:25 AM   #10
WarrenVex
 
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Can you tell me the side affects you had? I think my head has puffed up since taking them.
11-21-2014, 10:47 AM   #11
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The puffy cheeks are a very common side effect and will likely start to go away soon.

Personally, I had a fairly bad reaction to Prednisone but that isn't normal. You shouldn't have any long-term effects unless you were to take it for a very long period of time. Short tapers of a steroid are much safer than allowing the disease to run rampant. As is long-term use of Imuran.

Like Cross-stitch said, your doctor should be monitoring you regularly to check for any complications caused by the Imuran. If any are found, the medication would be stopped at the time, before lasting damage is done. Simple as that.

I'm a little worried about treading on your parents' toes here, though. They certainly have a right to have a say in your care, more so than any of us have. I can only tell you what I would do in your situation (or in your parents' situation, if it were my child affected).

I would go off the steroids as directed and stay on the Imuran. I would begin a food journal (if you haven't already), and be as detailed as possible. This allows you to more accurately pinpoint anything causing symptoms (it can be nothing at all, or something as little as a spice, so the journal really helps). I'd certainly hear out the holistic doctor, and perhaps ask for their assistance in creating a diet tailored to my needs. Having an idea of what, if any, foods aggravate your symptoms before creating a diet would be useful. Throughout this, though, I would stay on the Imuran. If in a year or two, all is still well and I simply would feel more comfortable stopping the Imuran, I would stay on the diet while following a GI's instructions for quitting the medication.

Although, honestly, I'd personally prefer to a see a doctor who doesn't blatantly refer to proven medications as "poison." That's a little ignorant and short-sighted. The symptoms and complications of improperly or untreated Crohn's are much more serious than the side effects and complications you might have from the medications used to treat it.

Either way, I'm confident that everything will be fine as long as you stay under the care of an actual gastroenterologist and keep them well-informed. I hope everyone will keep what you want in mind as they make these decisions.

Last edited by SarahBear; 11-21-2014 at 12:47 PM.
11-21-2014, 12:19 PM   #12
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I agree that as long as you remain under your GI for monitoring then your choices of treatment can be tracked and graded as to efficacy.

I also agree that the doc calling the mainstream meds poison is a bit shortsided and selfish as statements like that serve a main purpose of swaying patients to his beliefs.

As a parent of a child with IBD, I am aware of the fact that Crohn's disease in children tends to be more aggressive and/or progressive. Due to our personal experience I'm also aware that, no matter the treatment this disease can at times be aggressive to the point of permanent damage and lead to surgery.

So, in whatever treatment chosen I would go forward with the knowledge that regular monitoring by a GI is an imperative. Also, regardless of treatment route the ability to give up a med, diet etc if it shows little to know efficacy after a trial run is important in order to find the treatment that is going to best work for your disease presentation.
11-22-2014, 12:30 AM   #13
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I have been on prednisone several times and the last stint was, well let's say longer than one should be taking it. I was very moody, I'm talking one minute completely fine then a sad commercial would come on and I would just ball for 10 min, or I would get so angry. dumbest reason. Very puffy, hungry all the time, never could sleep on a good night I got 4 hours total sleep. Very shaky, needed a lot of reassurance from doctors , my family. Then there is coming off.... This is why I need the tramadol for pain . My pain is so deep around my shoulders and collar bone, back pain. Joints and bones are damaged thanks to the roids.

I am NOT trying to discourage you in anyway here. Everyone is different with this disease. I have had this for a long time now ( 10 years almost). You will find humor in this disease too, yes it's hard, but better days are coming!
11-23-2014, 01:52 PM   #14
UnXmas
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It was unprofessional of the natural doctor to tell you medications are "poison". The conventional medicines used to treat Crohn's do often cause horrible side effects, and some carry serious risks, but by referring to any of them as poison is intentionally trying to scare you away from something that could be necessary to keep you healthy.

What kind of test was used to diagnose you with a milk allergy? And what diet is the doctor recommending? I would be cautious about SarahBear's suggestion of a food journal, simply because I've found that trying to determine which food caused which symptom, whether your overall diet is affecting your symptoms as opposed to specific foods, or whether symptoms are even related to food at all, is extremely difficult.

Does your other doctor know about the treatments the natural doctor is recommending?

Vitamins and a special diet cannot replace conventional medicines for treating Crohn's. The doctor prescribing your medications should have weighed up the potential risks and benefits of the medications in relation to your particular case - the specifics of your disease at this time, test results, symptoms, your medical history, etc. He should also take into account your parents' views as well as your own. Have you told your doctor about your fears concerning medication? It may help to ask him why he thinks the medications he's recommended are necessary, what he believes the likeliness of side effects are in your case, and if there are alternatives. You could also ask your parents if they could have you referred to a different conventional doctor, to see if he/she has a different approach from your current one, if you think that might be helpful.

Last edited by UnXmas; 11-23-2014 at 02:37 PM.
11-24-2014, 01:47 AM   #15
WarrenVex
 
Join Date: Jul 2014
I had blood test to work out my food allergies. There is no diet reccomendations. Just herbs and minerals to take on a daily basis. The other doctor is not aware. We were going to tell him only when I come off the Imuran. The doctor knows of my fears and assured me I will come off them immediately if something shoes up in the blood test. I'm actually feeling better than ever. I'll be more confident after I'm off the steroids for a while with no flare ups. This is the second conventional doctor I've tried. The first was not professional. I'd turn up to appointments and he would not even have records of the medication I was on. He would ask me my current dosage. This made me feel scared. The new doctor is on the ball.
11-24-2014, 03:22 AM   #16
Cross-stitch gal
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Glad things are going well and hopefully they will continue for you! Thanks for keeping us updated.
11-24-2014, 03:48 AM   #17
WarrenVex
 
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Thanks for all the comments. I'm struggling to block this disease out of my head and have a normal life. The internet is good, however I think I read too much about Crohns on the net. I think the worst will happen to me. I do understand the severity that we all have is different.
11-24-2014, 05:06 AM   #18
Cross-stitch gal
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It'll take time. If I remember right, you've only been diagnosed recently. It takes awhile to digest all the info of realization of what you've got. There's nothing wrong with wanting to know what could happen to you. Once things start settling down you'll still be checking once awhile for info, just like I do.

Just remember whatever you see is only a possibility, not an absolute. If it helps any, I put together a hospital list along with a few necessities just in case of someday. Not that I expect to use it, but to be prepared. However, I've been diagnosed for over 18 years and have never had an overnight stay. I hope this helps with some of your fears.

In the meantime, I think you might find some comfort in the teens only part of the forum. Have you looked into it? I'm sure there's got to be a few in there going through the same things you are. Take care.

http://www.crohnsforum.com/forumdisplay.php?f=67
11-24-2014, 09:47 AM   #19
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Let me rephrase, then.

Try keeping a food journal if it isn't stressful for you. If it is, then obviously you shouldn't. However, most people do find it beneficial to determine what, if any, foods cause symptoms.
11-26-2014, 10:31 AM   #20
SdN
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Warren you're doing a great thing coming to this forum and asking for support.

I know your concerns regarding Imuran, I kind of thought the same thing when I took it briefly in 2011. Ultimately Imuran made me feel very very ill so I had to stop taking it. One thing you need to keep in mind when you have Crohn's or UC is that the disease itself is 'poison'. Your first priority should be to get this disease under control, everything else is secondary. I can't override the wishes of your parents of course or recommend any particular medical course of action but I can say the risks of the medications are typically far far less than the risks of the disease. If the disease is uncontrolled your chances for cancer go up as does the likelihood you'll need surgery, vitamin deficiency etc. So if the medication is working and it's been scientifically tested and verified as safe then you should think twice before letting your parents ignore the recommendations of your doctor. Best wishes to you!
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
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