Med med or not to med... that is the question

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Regular Member

Date Joined Aug 2003
Total Posts : 85
   Posted 3/16/2010 1:32 PM (GMT -7)   
Anyone out there go for a long time with no meds and had disasterous results? 
I have a strange version of CD.  I had a REALLY bad flare in 1994; blockage, 2 ruptured abscesses, then eventual resection surgery where they found a number of abscesses plus tissue that had healed on its own.  Since then, I have been primary symptom free for the most part.  Its the secondary symptoms that drive me crazy.  However, it seems that I'm having a flare now and looking back over the last 6 years it seems repetitive in March that I have problems (this being the 3rd time since 2004 that I felt I needed a GI).  So either somethings getting worse, or I'm getting old and stressed out. 
I hate side effects from meds and personally are against them in general.  As you all know, all GIs will ever tell you is: you need to be on meds
I will accept this only on my terms though and I can't seem to get a Doc to listen to me.  I am willing to take something occasionally... NOT 8-13 pills a day for the rest of my life.  Because of this I thought something like Remicaid would be good, but the side effects from that sound worse than anything I could possibly imagine.
I just feel like this whole propoganda that I need to be on meds forever is coming from pharmaceutical companies that want my money.  I do not make (nor will I ever make) enough money to buy drugs every month till I die. 
I will try something though for the sake of my family and 3 year old daughter because I want to stay healthy for her.  Can I do it without drugs every single day though???  I've done very well for the last 16 years... so....what's the problem?
Thanks for listening to my ramblings.  tongue  *staring at my month supply of Asacol that won't even fit into one bottle while listening to my tummy rumble*

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 3/16/2010 1:40 PM (GMT -7)   
I think it kinda depends on your "kind" of crohns.
It depends on how severe it is. You know your body.
I think you need to do whatever it takes to be there for your daughter (to be her advocate here) and if that means taking meds then that is what you need to do.
See what the alternatives are.
There are certainly other meds and other preperations of the med that you are currently on.

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/16/2010 2:43:43 PM (GMT-6)

Elite Member

Date Joined Jan 2010
Total Posts : 10096
   Posted 3/16/2010 2:01 PM (GMT -7)   
I've gone mostly drug-free for the last 11 years. Don't do special diets, probiotics, anything like that either. I couldn't tolerate any form of mesalazine, so the antinflammatories were out. Imuran and 6-MP did nothing, so the immunesuppressants are also out. Leaves only the biologics, which I don't yet know if I am prepared to try; depends on what tests show.

Nothing disastrous has happened to me. But then again, I have a slow-burning, simmering form of Crohn's, which never goes into remission but never goes into acute flare-ups either. My disease has progressed over time and got worse, but because it is so slow-burning nothing seriously bad has happened yet and perhaps never will.

Your case is a difficult one to call. If you weren't having symptoms I'd say leave it. But because you are, I'm more inclined to say give the meds a try. Have you had any tests yet? If not, I would think that's the first thing to arrange.

Regular Member

Date Joined Aug 2003
Total Posts : 85
   Posted 3/16/2010 2:46 PM (GMT -7)   
The only test I've had right now was a full blood panel that showed I had a high sed rate = inflamation. My last colonoscopy was in 2007 and showed active disease, but a pretty healthy gut otherwise, nice and pink, with only about 7 or so ulcers, mostly around my resection. I imagine it looks a little worse now.

My GI is planning for me to get a new colonoscopy probably in June or July.

Has anyone ever had a doc advocate that a CD paitent could take something PRN (as needed)?

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 3/16/2010 3:02 PM (GMT -7)   
Just the fact that you are worried enough to post here shows you probably should give something else a try. I know it is hard to be a guinea pig when you have a family but you have to try different things to find the comfort zone. Don't worry about side effects, usually when you hear about problems it is because a patient is having them rather then not.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Elite Member

Date Joined Jan 2010
Total Posts : 10096
   Posted 3/16/2010 3:18 PM (GMT -7)   
June/July is a long time to wait - ack well, I suppose returning symptoms + high sed rate is probably sufficient enough indication to begin a new treatment regime.

Not me. And can't really think of a drug which would fit that bill. The trouble with Crohn's is that most drugs take quite a long time to kick in, anything from a few days/weeks to a few months depending on drug type. And then when they do kick in, you usually need to stay on them long-term for the symptoms to be kept at bay. Crohn's is tricky to treat, no doubt about it.

If diarrhoea is your main, or most troublesome symptom, you could always consider Immodium, Questran (needs to be prescribed), etc. Those really can be taken on a "as needed" basis and do definitely help some people. Others go down the probiotics, diet and supplements route, but that requires a bigger commitment than taking several pills a day, in my opinion... Still, it's certainly more natural.

Sorry I can't be of more help :-/

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 3/16/2010 3:37 PM (GMT -7)   
I self diagnosed at the age of 13, but when I went to the doctor I was treated like I was a bit crazy. I knew what I was looking at because my mom had CD and I had been living with the disease for my entire life. I was told I was lactose intolerant, so I stopped drinking milk and made other dietary changes. I basically self treated for the next 10 years, but when I look back on those 10 years I know the disease wasn't under control, it was just simmering away. When I had my next major flare it landed me in the hospital for weeks with fissures and fistulas and I had a one year old at home, the hospital was the last place I wanted to be. It took 3 resections and 10 more years to undo the damage that the first unmedicated 10 years had done. Just because you can function and have mild symptoms doesn't mean your disease has forgotten you. I will NEVER go without maintenance medication again. This is a chronic incurable disease, but one that we can have a full life with, if we take care of ourselves. That one year old is now 22 and I have enjoyed every aspect of her life because I have taken care of myself by taking care of my Crohn's. Stepping off my soapbox now. :-)

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 3/17/2010 12:25 AM (GMT -7)   
I look at Crohn's like a ticking time bomb, that can be slowly doing damage in there, not always with our knowledge. I've heard from enough people who said they were doing fine for years, without meds, and suddenly got very ill. Some needing emergency surgery. So yeah I stay on my meds. I went undiagnosed for many years myself, and was only on Immodium and Questran. I finally got diagnosed in the hospital after a major flare, that left me bleeding really badly. So I'm completely for staying on something to keep the inflammation from stirring in there. I've been on Asacol for years now, and tolerate it very well. It's worth it if it can help prevent something major from happening.
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 3/17/2010 5:20 AM (GMT -7)   
oh yea..if your looking for someone to attest that going off all meds will be diasterous i can certainly attest to that...basically this was a combination of the meds not working and the complications resulting from crohns. I have everything removed now so I can also attest to not being on meds if you have all bowel surgically removed (rectum , colon and parts of small). The conclusion is that the incontinence resulting from the disease and complications like fistulas and perhaps not having meds is solved by having an illeostomy i have not been on meds since illeostomy which is going on many years now. That is not to say crohns is completely gone. I cannot attest for all meds as the destruction occurred over time but before some of the stronger meds were even tried. I got to the remicade but it was too little too late sort of thing. This is the issue with crohns... if you are at the point of incontinence and you find a decent surgeon then going in a bag is better than not making it to the bathroom. Theres a difference certainly, between not listening to doc to take meds and going off them because they dont work...but you need to be aware that the latter half of that...that there is a surgeon willing and able to put you back together. You really dont want your record to show that the patient decided to not take meds rather that you took them and found them not to be effective, if thats the case. I understand your point of the quantity (dose) of meds, as example pentasa, but in my case they were utterly irritable to my bowel and I felt worse especially since they made me more incontinent not less, who knows why. (presenting my scientific assessment of a particular med to a qualified doc will probably be a waste of time). So the problem is that you might lose your bowels to complications if you go off meds. So having some idea of what the med is supposed to be doing is helpful. As "your own terms" is not really part of the equation you see.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/17/2010 6:13 AM (GMT -7)   
Oh goodness, those slaves to western medicine, how naive they are to be funding those pharmaceutical companies. Sorry, but I have heard this so many times and almost everytime the response has been the same. The person either needing emergency surgery or becoming extremely ill and unable to get their disease back under control with any of the available medications.

I once enjoyed a nearly 20 year remission, med free. Would I do it again, HECK NO!! Why?? Because while I had been busy getting on with my life, Crohns was still in there doing its damage on a microscopic level without me even knowing it. I had years where I had inflammation occur then heal repeatedly all unbeknownst to me, until I was completely obstructed and one day woke up in the worst pain of my life. That ended with an emergency resection that was quite painful and traumatic to me. Then I had a GI (now fired) tell me, oh since you have had a resection you no longer need meds, so I didn't take them again. What happened??? Only 3 years later I had to have another resection.

I now take my meds religiously and after battling for years of fighting to get my disease back under control, I can say I am now in remission again. Hope you remember you do have a chronic and incurable disease and just like someone who has diabetes, you must treat your disease at all times.

Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jan 2005
Total Posts : 1831
   Posted 3/17/2010 7:33 AM (GMT -7)   
I was off meds for years because a GI told me there was nothing wrong with me! Um yeah, maybe I should send him my latest scope & surgery reports. And when I started flaring again, I think I was in denial "I can handle this" "I'll just take immodium for the D" . Then the weight loss kicked in & DH kicked me in the backside! That was about 5 years ago, been on some sort of med ever since. Right now, it's old school with Sulfasalazine and Nexium for the GERD. But in between I've been on everything from Remicade to Imuran, both gave me issues so had to stop.

Best advice, you need to get your head around this and look at the long term. IMHO.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 3/17/2010 8:07 AM (GMT -7)   
Hi I have had two resections in 30yrs the first one was 16 years ago (I had been on meds beforehand )had a right hemicolectomy after this surgery i bounced back within weeks. I then got the attitude that i didn't need meds again because i was so well and felt like i would be popping pills for something that wasn't there.
I went for 15 years in remmision with no symptoms, but in sept 08 had a bad flare with awful consequences, had to have 4 small srictures removed from the small bowel, a fistula came through my stomach and I ended up with a temporary stoma I was devestated and really regretful for not taking meds I still feel very guilty for putting my family through all this, when it could of been avoided or may not of turned out as bad as it was if i had taken meds. I urge you to seriously think about the concequences of what could happen not only to you but also what you will be putting your family through good luck hopefully there isa med that will agree with you. Bev x smilewinkgrin
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."

What A Life
Regular Member

Date Joined Mar 2010
Total Posts : 116
   Posted 3/17/2010 12:29 PM (GMT -7)   
I see most of us have all tried going without meds for quite a long amount of time because you "felt okay." However; for those of you that did this; were you still getting scoped at least once every year or two?

Regular Member

Date Joined Jan 2010
Total Posts : 265
   Posted 3/17/2010 1:31 PM (GMT -7)   
I would say it's bidding against the odds.
Without meds, you will almost certainly get problems. Severe ones.
With them, you may still have problems. Usually less severe ones (I still got a ressection while on meds, but NOT emergency). Counting the side effects.
Or you can try these diets (SCD or Makers or ...) and see... many ppl are lucky with them. 
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron (sort of remission, not sure at all)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/17/2010 1:34 PM (GMT -7)   
I agree with Djin, I have been safely maintained on Asacol for about 5 years now. I will still have issues once in awhile, but they are no where as bad as they were without meds.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 3/17/2010 2:44 PM (GMT -7)   
I am new to crohns so I cannot give you the advise of someone who had been battling it forever however I had slow simmering symptoms over 8 years before being diagnosed. Some cramping, multiple BM and occasional flares that consisted of pain like I have never felt all night long, vomiting, and cold sweats to be followed by diarrhea in the morning when everything would resolve. Had about 6 of these. My GP at the time still chalked it up to IBS because if it was crohns I would be in his words 'much sicker'. well come to find out it was crohns. I feel that I was so lucky that when I did finally see a GI for unresolved intestinal pain that there was not major damage done to my colon. Other than the inflammation the GI said it looked really good. I am extremly lucky that I have a mild case of it and it was not doing that much damage. I would strongly urge anyone to take meds for this. I am also a firm believe in holistic medication along with the med but I am a believer in traditional medicine.

New Member

Date Joined Mar 2010
Total Posts : 12
   Posted 3/17/2010 3:10 PM (GMT -7)   
I have always been on some kind of meds - the last 10 years remecaid every 8 weeks. I had a few flares (nothing major) mostly due to stress (family deaths) But overall the infusions worked for me- when I was scoped (which I am once a year) the last 3 years I have been told it looks clean as a whistle and if dr did not know I had cd- he would never see it. BUT - it was the remecaid for 10 years and 6-8 infusions a year that did it. Now I am starting Cimzia instead of remecaid mostly for the convenience of giving it to myself and not sitting in a chair for 5-hours taking a day off of work for both me and my husband. If you cant afford remecaid- there is a program called remistart that helps pay for your infusions. The same for cimzia. My copay would be 50 a month but Cimplicity is paying for the home health nurse to come to my house to show me how to administer it to me and dispose of the needles and they are paying my copay for the first year. After that you just have to reapply each year. I am not quite sure of the purpose of qualifications as I have insurance and our household has good incomes so not quite sure about that. (Nothing in small print or anything from drug company recusing them from any harm that may be caused from the drug) Had my lawyer look over everything. My point is maintenance is important and I have been in remission for 10 years now feel great exercise and live a normal life and I TOO wanted NOT to cont on meds until I posted to this forum a few weeks back and was strongly urged to cont on maintenance drugs - I listed to my crohns friends here first as we all know what we have been through (we walk the walk and talk the talk) something doctors cannot do- unless they to live with crohns...

I hope this helps- remecaid saved me years of agony and pain and hopefully the new drug will continue...

My regards...

Regular Member

Date Joined Aug 2003
Total Posts : 85
   Posted 3/17/2010 3:59 PM (GMT -7)   
Okay, scientifically, the odds are against me; and knowing that I'm at least doing what is in my control to try to avoid something potentially awful, does make a lot more sense than to just sit back and hope for the best. 
Thanks everyone for your stories and advice. 
It really helps to know you all are out there succeeding at life despite this terrible disease.  You have all inspired me to look at meds as a helping hand up to freedom, rather than a symbol of never-ending bad health. 
I promise to do my best to take care of myself, that way, when one of you need the support, I will be in good enough shape to be here for you.  wink

Regular Member

Date Joined Sep 2009
Total Posts : 90
   Posted 3/17/2010 10:51 PM (GMT -7)   
there are a lot of replies on this post but I just had to say - "great topic" - Laura, I too feel this way lots as well.
I hate taking all the pills that I do. I actually don't take that many meds but I do take A LOT of vitamans and herbal supplements - which I have convinced myself they are better and I am pretty sure they are.

I hate going to the doctors just for that reason - many seem to want to just solve the problem with another drug. Sometimes I feel almost like a lab rat. :o\
Its "tuff" and in closing I just wanted to say I so HEAR you girl! Lets just DONATE in hopes for a cure!
What else can we do?
Oh .... well, I tend to pray lots while sitting on the toilet. Not sure if GOD can HEAR me but I try to remain HOPEFUL that someday he will.
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun

In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 3/18/2010 2:10 AM (GMT -7)   
Why would you gamble with your health like that by not following any doctor's advice? I know that there are some bad G.I. docs out there but the fact that you can't find one doctor to go along with you may be the first clue that you are not going in the right direction. I am as liberal thinking as you will find but honestly I have seen this scenerio so many times without one success story. Nobody likes to take all of the medication and the fact that you are not in remission should tell you that it is time to move up to a more aggressive medication. There is always damage being done when your disease is not being treated despite the fact that you may be feeling great and blood tests are good. The damage can be in the form of scar tissue, fistula, narrowing from inflammation, or a whole number of things that can suddenly throw you into a scenerio that will require surgery or hospitalization. If you do not believe that this disease can kill you if not treated, let me share with you the story of an uncle of mine that was not able to have treatment for his crohn's disease. He was a homeless individual that disappeared for a number of years due to mental issues but we would hear from him every 10 or so years. He would never accept help and thought that he did not need help with his disease until it was too late. He was in so much pain and could not afford insurance and would not come to us for help. His desperation led him to go into a walmart and intentionally get caught shoplifting so that he could get medical help in jail. By the time they started to help him it was too late and too much damage had occurred. He passed away 2 days after being jailed and the autopsy showed a severly perforated bowel and diseased G.I. tract from Crohn's disease.
We did not know that he had Crohn's disease due to the fact that he was never around and chose not to ask for help. He had mental issues that caused to to go to jail many times and during those times they would tell him that he needed to be on medication but he thought it was a conspiracy. We learned of his death shortly after I had been diagnosed and it was an eye opening moment for me to realize that you can die from this disease if you don't take care of yourself. It taught me to trust the doctors and people who have studied for years and make sure that I followed what they told me. If you do not have that same trust with your doctor, then you may need to find a new doctor. The fact that you have already had a bowel resection should tell you what happens when your disease is left untreated. Do not get anesthetized by the fact that you have not had any major problems for a few years. This is a recipe for disaster. You have to be your strongest advocate, but make sure that you love yourself enough to give yourself the best treatment out there. One last thing, I receive my remicade every 4 weeks and the biologics are not as bad as you may think. I would recommend them anyday and am surprised that you have been able to go this long with this disease without being on them. There are still side effects but realize that all of the side effects that you read here on on the web are not going to happen to you. For legal reasons they have to list every possible side effect or problem that anyone using the medication has ever had.
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