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Some of us are off meds for awhile

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Crohn's Disease
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Posted 10/15/2008 12:19 PM (GMT 0)
Hi Was just sitting around thinking and was wandering about others that are not on meds. I have been med free for 6 months now and was wandering about others that are med free. How long have you been med free and are you having any problems?Do you feel better now then when on meds? Was it your GI that suggested you could go off them ? lol gail
Posted 10/15/2008 2:00 PM (GMT 0)
Gail, that's a good question. Through no other reason than my reaction to certain drugs, I've been drug free for about 2 months now,
and I have to admit I do feel better, but at the same time scared. I do feel the start of some returning symptoms, so I know this
respite will not last long. If I'm not allowed back onto my meds, i feel surgery will be my only treatment. BUT meanwhile I'm holding
my breath, but enjoying the break LOL.
Posted 10/15/2008 3:06 PM (GMT 0)
I was med-free for about six months after diagnosis, but using EN. I decided to go on Entocort because I was going on a ~2 week road trip where there would not be good hospitals and didn't want to take any risks. My GI said to take the Entocort and then taper to nothing. I'm on one pill/day now and will be done with the Entocort and med-free again in a week or so. It really messes with my head...difficulty concentrating, dizziness. Now that I'm tapering it's starting to get better.

The best I ever felt was when I was not taking any meds but on exclusive EN, after I had been on it for a few weeks I felt "normal" again. But I had to eat eventually. tongue

If I have to do meds again I want to try Xifaxan. It's not absorbed so should be pretty mild.
Posted 10/15/2008 6:30 PM (GMT 0)
Funny thing after having been med 'free' for several years and relying primarily on a low residue / SCD diet (used pred on a few occassions and tried, initially without success, 6mp), I'm now back on 6MP and actually feel I'm doing better than ever...two concerns I constantly grapple with are 1- how long can this last and 2- does anyone really know all the potential sideeffects from being on an immunosupressant long term...
Posted 10/15/2008 11:16 PM (GMT 0)
Hi Vicky What part of your bowels are problematic I see you have had 2 resections? I know what you mean by a break I felt a whole lot weird on pred. and I do find it worrisome some of the meds but I'am stable for now .As I get older I wander about the side effects and quality of life. Each of us are brave souls in handling our disease.

Eddie I am not sure what the long term effects are for 6mp.I do hope you are feeeling good though.

Illini So when you are reduced down are you then supposed to go med free? lol gail
Posted 10/15/2008 11:23 PM (GMT 0)
I went off all meds for a few months about a year and half ago. I was still only on Asacol, and just didn't feel like it was doing anything for me. I got sick and flared up a few months in. Went back on my Asacol. LOL I'd love to be med free, just don't think it's ever going to be a reality for me though. I think the disease can be doing damage in there that we aren't aware of until it's too late for some complications to go down.

I had no treatment for 10 years since I wasn't being properly diagnosed. Those were a sickly 10 years I can tell ya.

Posted 10/15/2008 11:57 PM (GMT 0)
Hi Jen The disease does damage to people on meds too. Glad the Asacol is working for you. lol gail
Posted 10/16/2008 12:08 AM (GMT 0)
I'm CD med free at the moment, but for the other arthritis, its meds galore.
I never noticed a difference taking Pentassa, that it helped between flares. Nor did it stop them. It DOES help DURING a flare though..


Matthew
Posted 10/16/2008 12:17 AM (GMT 0)
Hi Matthew How are you doing CD wise with no meds and if you don't mind me asking the reason your not on any. lol gail
Posted 10/16/2008 1:13 AM (GMT 0)
Went off my meds in mid-January, around about the time the SCD was working really well for me.
Posted 10/16/2008 1:14 AM (GMT 0)
Yep. So far my case is pretty mild in terms of symptoms. My last serious episode (fever/pain) was December '07. I did/do have narrowing near the TI, and my doc suggested that a round of Entocort could help put off an obstruction. The doc wanted me to taper the Entocort and then be drug-free, and we'll see what happens next. I'm hoping things will stay under control for a while. I will be seeing him again in December. Goal is to be healthy (and if possible drug free) so we can start a family. But ... If symptoms come back then we will have to re-evaluate. I will probably try exclusive EN again or more serious dietary restrictions before going on meds a second time.

I still do use EN in addition to meals and will continue to. Right now Peptamen. But it tastes awful so I will probably go back to Nutren. I also use probiotics and a few other supplements.
Posted 10/16/2008 5:29 AM (GMT 0)

gachrons said...
Hi Jen The disease does damage to people on meds too. Glad the Asacol is working for you. lol gail

That's true. I found for me there was a lot more damage from all those years of no treatment though. I seem to better with some treatment going. Asacol isn't a cure all by any means, I had to go on prednisone for a flare this year afterall. I can't imagine what I'd be like now if I just let the flare continue on, and not taking the prednisone to put me back in remission!

I just wonder about when people say they are doing great without meds, what is really brewing inside that they will find out about down the road.

But then again I can't do any of these crazy diets, where you have to make EVERYTHING by hand that goes in your mouth, and cut out all bread products ect... Much too strict and time consuming for someone that doesn't have energy to spare! lol

Posted 10/16/2008 5:29 AM (GMT 0)
Because I'm either allergic or non-responsive to traditional oral RX I guess I can say I've always been med free (not including the millions of times I've had to use rectal meds that is). For the most part I did horribly, more severe flares than moderate, but since starting my regime of naturals and altering my along with adding regular exercise I feel more like a mild-moderate level which is a heck of a lot better than what I ever was before.

:)
Posted 10/16/2008 5:52 AM (GMT 0)
Hey Gail. I went off my meds when I was 4 weeks pregnant with my daughter. At the time I wasn't aware that I was pregnant. I was mysteriously feeling well, but then my boobs started hurting LOL. That kind of gave it away. When I found out my doctor suggested taking my meds again just in case. I told her no way. I wasn't going to jeopardize my unborn child taking drugs that had no research to back it up for pregnancy. So I found out I was pregnant July 2007 and was forced into taking 6mp in November because the pain was unbearable. I was eating all sorts of things because I didn't want to limit my baby. All the wrong things if you know what I mean. I took 6mp for a month and couldn't stand how it made me feel. I was so fatigued on top of being pregnant. To my doctors warnings I quit the drug. I was so flared up I got blood clots in my lungs and had to go on meds(anoxeperin) for 6 months from January 08 to July 08. In July my doctors convinced me to start taking 6mp again in combination with prednisone(I dread it), which I did but it didn't last long and I quit taking it. I know 6mp takes 6 weeks to get into your system, but I sure couldn't handle the side effects. Since then I still haven't taken anything, and don't feel the greatest for it, but I don't feel like sleeping ALL the time either. I will start methotrexate at the end of this month and hopefully it will work. I haven't tried a new drug in over 6 yrs and am anxious, but looking forward to a possible chance for remission. In my opinion, drug free has made me happier and less worisome, but not for the healthier that's for sure. Well Gail sorry for such a long post, just thought I'd drop a line........ or 12 LOL. :)
Posted 10/16/2008 11:02 AM (GMT 0)
Hi Jen I know for me I had a CT scan to see what was brewing and it came back good. I know if there were problems then the med thing is there.I also keep a eye on blood so got some basis covered. I don't want to stress over things that are not happening and I am thinking that when meds are needed they might be more productive in working if I haven't been exposed to them for months or years prior to using them .I feel for now my decision has been a good one for me and I realize that in the future I might need some med help but intend to enjoy the now.If I was not good with CD problems I would be seeking more help . lol gail
Posted 10/16/2008 1:49 PM (GMT 0)
Since my resection was in December 2006 i've hardly taken any meds. For more than a year after the surgery i was meds-free and then went on Pentasa for about 2-3 months. Came of it and tried it again recently for a week or so but it made my D worse so i stopped it. So at the moment i'm not taking anything but starting to be scared. I think i'm flaring but i'm not sure. In my last colonoscopy a few months back the inflammation was coming back.

So right i don't know what to do. Do i wait til my next colonoscopy in March or call up my Dr. ask him to put me on something that doesn't causes D...

Posted 10/16/2008 3:33 PM (GMT 0)
I've been med free for one month so far to breastfeed. It was my call, but not discouraged by my GI. I was in remission and now notice a few minor symptoms. I'm not sure it was the best choice for my health, but I'm more concerned for my daughter.

hj
Posted 10/16/2008 5:03 PM (GMT 0)
Gail-I was diagnosed in Nov. 2007. I had severe rectal crohns as well as some spots in the colon. I had reactions to Asacol, Imuran, then finally tried Humira in January. It cleared everything up within 6 weeks-then my white blood count dropped to low andi had to come off. Been off since May of 2008. I had a colonoscopy last week and everything has healed up and I'm doing fine. I am going to stay off meds for awhile and try SCD just to stay safe. My WBC will not come back up so still worried about that.
Posted 10/16/2008 5:51 PM (GMT 0)

gachrons said...
Hi Jen I know for me I had a CT scan to see what was brewing and it came back good. I know if there were problems then the med thing is there.I also keep a eye on blood so got some basis covered. I don't want to stress over things that are not happening and I am thinking that when meds are needed they might be more productive in working if I haven't been exposed to them for months or years prior to using them .I feel for now my decision has been a good one for me and I realize that in the future I might need some med help but intend to enjoy the now.If I was not good with CD problems I would be seeking more help . lol gail

Everyone is different, and so is their disease! So I know I'd never say any one way of treating this is the only right way. So I for sure wish you luck and many YEARS of remission, without meds!

I don't have ct-scans unless I'm in the ER it seems. For me they've always been normal, even with a bad flare. Strange, I'm sure that's partly why it took so long to find my Crohn's. But that's why I worry about what is quietly (even on meds I do!) going on in there, that isn't causing symptoms yet.

Posted 10/16/2008 7:12 PM (GMT 0)
Jen77 I have to say I agree with you on this. I once enjoyed a 20 year remission completely med free. But that ended abruptly with an emergency resection. Because as I was living life and really forgetting for the about my Crohns, it was in there slowly ticking away and continuing to do its damage. I only take Asacol to maintain my Crohns and thats good for ME. I personally believe that everyone should be on some kind of maintainence med, but thats just my opinion. You never know what damage is going on in there. I too just had a CT and it came back normal, but I don't put my complete trust in these tests. I have seen too many people have normal tests and blood tests and still they end up getting/being sicker than a dog. JMHO
Posted 10/16/2008 7:33 PM (GMT 0)
Nanners + Jen, I agree with you guys on the maintenance meds. I'm crossing my fingers that the damage being done in 6 mos w/o meds won't be irreversible. I'm sure there is inflammation going on that I don't feel. Like you guys I've already been burned by damage stealthly done (the resulting stricture is irreversible short of surgery). The choices this disease forces us to make can be really difficult.

hj
Posted 10/16/2008 7:57 PM (GMT 0)
Hi Some of you are on the little guns but I cain;t take them .I also know that in the beginning I have been threw a rough go of it .I don't take lightly any decision I have made years of bowel trouble has taught me that and now things are better with them I know when I'am sick but the side effects can be self defeating so only when I feel I need them is my approach for now. As you feel you need them so you will take them and I'll be the first one to offer support as you all know. lol gail
Posted 10/16/2008 8:22 PM (GMT 0)
After many years of being med-free, I think I'm also beginning to agree that the disease can be active even when we are in the so called remissions... I'm coming off a flare earlier this year and have now decided to get serious about maintenance therapy.  Like Nanners I can be fine for years and then in the ER all of a sudden.. Now on 125  mgs of 6MP, I'm amazed at how normal my BMs are and how I can eat things I previously avoided.  I don't know how long this will last but it certainly tells me there's more to Crohn's that meets the eye...
Posted 10/16/2008 9:10 PM (GMT 0)
HI Well as I say put all your faith in meds and you might not have any eyes to go on with. I too beleaved in meds and came close to loosing my life. Nanners also stated that she was med free for 20 years. She also said she had forgotten all about her crohn's . Glad your feeling better Eddie so where is your crohn's located? lol gail
Posted 10/17/2008 12:26 AM (GMT 0)
Hi Gachrons,
My CD is in the terminal ileum and, after two resections, all of my flare-ups are at anastomosis site. My med free years, no surprise, followed the surgeries.
Throughout my med free years, however, my GI warned me that sooner or later the disease would return... and boy was he right!
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