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I was told that meds were for life.  This is so hard for me to accept and I am one of those people rarely takes any type of medication unless necessary. I would love to stop if I am in remission...has anyone gone off meds while in remission for UC?   

 Reply posted for spuds22.

I think this is a very difficult question to answer.  Too much depends on the information you are given by your doctors (or can find on the internet), the way the disease affects you personally, your lifestyle, etc. 

I went med free for 6 years (I am currently having a flare that started in Nov. 2009).  I was put on Pentasa and Entocort and was told to seriously consider starting Humira or Remicade. 

If I could go back and re-live the last 6 years, I would not change anything.  I would not take meds for maintenance, and I would again refuse surgery.  Some may say I could have gone longer before my next flare but I had 6 years of "freedom" from having to remember to take pills everyday, from trying to figure out how I was going to pay for all the meds and doctors appointments to monitor side effects, and the side effects themselves.  At times I could almost forget I even had Crohns. 

I wont recommend other people stop taking meds without talking to their doctors and making informed decisions, but I do feel it is possible to have periods free of medications.  I think the important thing to remember is that until a cure is found, we are fighting a lifelong disease that cant be predicted.   

 

 Reply posted for malgal.

I have tried tapering off my meds before, I've had UC for 12years, One thing that I want to stress that I wish I would have known sooner, Is that even if your symptoms are gone and your technically in remission the disease(inflammation) can still be present in your body. Believe me I know..last year I was in remission and my last colonoscopy was great, so I started to taper off the meds... I didn't understand the disease could affect other organs, and the inflammation migrated from my intestinal tract to my joints. I am still symptom free in the intestinal tract, but have extreme joint pain and inflammation.. which can be a complication of the UC. My immune system is now attacking my joints instead of the intestinal tract. It's called an extraintestinal manifestion, its arthritis, which is much worse than the UC itself.. all the joints are affected and hurt. most GI doctors don't know how to treat it. It's like having the flu with the body aches EVERYDAY..my joints swell and actually pop out of place.     PLEASE DON'T STOP YOUR MEDS... I'm only 35 and am seriously considering quitting my teaching job,which I love because the pain is so  bad especially in the winter...this is a life long disease..

 Reply posted for spuds22.

I have had UC since 1998, I stopped taking my meds when I was trying to get pregnant. I was off of the Asacol and Imuran for a year before and during the pregnancy. Immediately after I had my son, I flared, which I was told was due to hormonal changes. I have tapered off the Asacol before and was in  remission, then I started with the inflammation migrating to the joints. Asacol is a lieftime deal...I do however drink green tea daily and obviously watch my diet which helps decrease the amount of pills...and I am using Humira

pill poppers 4 life vs. the flare-ups...

 Reply posted for spuds22.

I have UC and recently went to my doctor.  I asked him this same question.  I am on Canasa (rectal suppositories) and Asacol.  He told me that I could eventually wean myself off the medication.  He told me if my symptoms are gone I could logically stop taking the meds,  not because I ran out but because I did not need them.  He said to just keep them on my shelf and begin taking them again if needed.  I have yet to rid myself of symptoms but I am looking forward to someday just letting them sit on my shelf and not using them.  It is definitely a question to ask your doctor as everyone is so different, but I based on what my doctor told me it is a possibility.  Good luck!

 Reply posted for spuds22.

2 yrs after my crohn's diagnosis I went into remission and the doctors said if you go 3 yrs without a flare there is a 50% chance you won't ever have another one.  I was on maintenence doses and flared about 2 1/1 yrs into my remission.  I have been on full meds every day ever since.  Azasan (2 per day), Pentasa (8 per day), and Remicade (every 6 weeks) for over 10 yrs.  Until they find a cure or the meds stop working I have no intention of stopping.  If you are having financial trouble paying for you prescrptions- check with your GI doc about getting free samples or contact the RX manufacturer directly- they can usually get your meds for free or at a great discount.  Also- be wary of the generic forms of meds- I was on Azathioprine intially and then my doc switched me to Azasan because there were some reactions to impurities found in the imported generic of azathioprine.

 Reply posted for spuds22.

I was diagnosed in May, 2009 with CD. I am 58. The doctor started me on 4 Apriso a day and I am down to 2 a day. I have very few symptoms and am often tempted to go off entirely. However, my husband is a diabetic and I am the first one to tell him he has to take his medication every day or he will get really sick. So how can I tell him that and not take my own meds? After reading some of the stories on this site, it seems that more people have trouble after stopping the medications than those who just continue to take them.

 Reply posted for spuds22.

I have tried a few times to wein off the drugs.  I just cant get there.  I have been able to reduce my meds with a no processed foods, no dairy, no gluten, no added sugar, low carb diet.

Through blood and hair analysis testing I found out I am also dealing with heavy metals.  Mercury and Aluminium.  I believe I have removed all sources and about to try Heavy Metal Chelating.  Once the heavy metals are removed I'll  try to get off the drugs again.

 Reply posted for spuds22.

Meh... well, I take my meds whenever I feel like am having a flare again. Because if I take them everyday I think I build a tolerance to them and they don't work as well, and they are expensive. Most of the time am off meds, I live my life normally, I may get a flare 1 month out of the year and take some meds. I usually have my UC under control though.

 Reply posted for spuds22.

I was diagnosed with CD when I was 12 1/2 and had surgery at the age of 13. I am now 36 and have not been on meds since I had surgery. Two reasons: did not feel I needed them and family could not afford it back then. I don't have flair ups but do get diarrhea DAILY! I take generic Imodium everyday and have done so for years now. I am up to about 16 pills at one time to deal with the diarrhea due to stress and my eating habits. I am also tired all the time. I am in the process of changing my eating habits and beginning an exercise program to help with everything. As far as I am concerned, Rx meds are not always needed unless there are more than occasional flare ups. I will post my results of eating habits and exercise at a later time to see if things for me have changed. I hope some of this has helped answer your questions. 

 Reply posted for spuds22.

My daughter is a CD patient and I am with you when it came to hearing this life of meds.  So, once her system was cooled down and in remission, I was determined that all was well and we didn't need the meds any longer.  I told the dr my decision and stopped all meds.   Guess what, that was the wrong answer!   The disease wakened with a vengence!   It took twice as long to get the gut back under control.   I have since accepted the fact that along with a good / nutritional / organic diet, the meds will be part of her life (Until there is a cure).

Lizzies Mom

 Reply posted for spuds22.

I have Crohn's Disease and when I was a teenager..and didn't know better...I felt better and went of all meds.  Now I am flaring and I am having bad reactions to all meds.  I have just started Remicade and hopefully it will work.   My point here is that if I would have stayed on the meds I might not have developed a resistance to them.  I don't know how it is with UC but with CD, you are pretty much on meds forever.

 Reply posted for spuds22.

I have been pretty much off meds for 8 1/2 years after my surgery. My first doctor wanted me to stay on maintenance meds. However, I felt that the side effects were too risky for me to take them when I wasn't having problems. My new doctor supports my decision. I take an antibiotic every few months for bacterial overgrowth (due to surgery) and that is it. I still have diarrhea, constipation, and some pain, but because I am in remission, I can manage with OTC meds. The difference is that the problems I do have are minor enough no to affect my daily life. My main problem now is that I am tired all the time. I am taking vitamins and working out, which helps a little.

 Reply posted for spuds22.

Yes, I did stop all meds at one point. I was originally diagnosed with UC in 1989. It was a mild flare and I was on sulfasalazine and cortisone enemas for three years. I had moved and was having relatively few symptoms when my prescription for sulfasalazine ran out. I had no insurance or doctor since I'd just moved to a new state, so I just waited to see what would happen. (Not that smart, I know...) I ended up going for almost 15 years without meds, during which I only experienced very mild symptoms every so often. In fact, I basically forgot I had UC, if you can believe that. At least I started to think I no longer had it. However, two years ago, I had an extremely severe flare begin that took hospitalization and about a year-long recovery to get under control, and only stays under control now with Remicade treatments. I'm tempted to eventually go off the drug to see if I can get a similar remission to before, but I'm also very afraid of doing so.

 Reply posted for spuds22.

My husband was diagnosed with UC 13 years ago at the age of 46.  He was pretty sick but got better over a period of about 1 year with a short course of steroids and steroidal enemas and then went off those meds.   A few years later he was still feeling ok just some occasional diarrhea and his new doctor said to see a gastroenterologist. He went to the GI guy who for the first time told him this disease was horrible and that he had to be on meds for the rest of his life, he came home from that visit very depressed and started on asacol (even tho he wasn't really having symptoms).  He got very sick over the next couple of months, started having bloody stools and weight loss, depression and got pneumonia from debilitation.  I finally read the side effects of asacol more closely (I am a nurse) and saw that worsening of symptoms was a SE of asacol and we stopped them.  Within days he was much better.  He went to a naturopath, was on an elimination diet for a year and has never had another symptom.  He has been symptom free and healthy for over 10 years.   So yes it is possible and don't let any GI doctor tell you otherwise. 

 Reply posted for spuds22.

Hi!!! my  son has mild ibd since 3 yrs and was on pentasa for all the time. he has been in remission since 2 yrs and now we stopped the meds since past 3 mnths. Touch wood so far all is good. This was recommeneded by my GI . i too personally feel that if meds help some way then they also have some side effects.... rt now he eats yogurt which is natural probiotics.

Its good to share

simmi

 Reply posted for spuds22.

Maintenance meds are basically for life. I know a number of people who have achieved remission and have gone off the maintenance meds only to find that their next flare is much worse; staying on the meds keep the next flare from being so bad (unless one has a sensitivity or allergy to the medicine!) The maintenance meds are meant to keep the flares away.
I've been on 16 asacol a day for over 20 years. The way I look at it is that my body is lacking some chemical that is being supplied by the medication and that the medication brings me into a naturally balanced state.

 Reply posted for spuds22.

I am having that same problem.  I am on two meds, just switched from Liada to Apriso yesterday, and Rowasa.  Once the bleeding is  stopped, then I can get off one. The dr said I will need to take one med always.  Really hard to accept, as I am 57, and have never needed meds for anything.  So I am just taking it one day at a time.

  Good luck!

Just diagnosed 10/09