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Crohn's Disease
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Posted 4/3/2014 2:43 AM (GMT 0)
My GI dr is quite natural treatment minded, and is fine with it if I decide not to go on any medications, treating my CD only with dietary changes and natural supps.

However, I know that I have some strictures in there and my surgeon feels it would be insane not to go on some medicines to maintain my remission.

GI thinks if I do decide to do meds, Imuran would be the way to go. The thinking is that even though I've done Humira, I've been off it for several months now, so lets save the "big gun" in case we need it. Lets try the minimal amount of medication that's going to give the most benefit. He is totally leaving it up to me if I want to go back on meds.

Most of the posts on here about Imuran seem to be pretty positive experiences as far as side effects go--but frankly, the idea of just staying off meds as long as possible is appealing. Prior to my abscess and surgery in September, I was unmedicated too and did relatively well. I know and understand a lot more about my illness now than I did then.

I'm feeling great now. I would hate for any side effects (even relatively minor ones in the grand scheme) make me feel worse.

Just kind of spitballing here....trying to decide. Thoughts welcome!
Posted 4/3/2014 3:31 AM (GMT 0)
A few months ago I might have told you I'd go the no meds route and really stick to your diet. However.... A few months ago I was doing great. I was Coming up on a 2 year anniversary of remission and on no Crohns meds. Then in less than 4 months my colon went from mild inflammation to looking like a bomb went off in it. My diet didn't change. I did experience a stressful family situation, but not one that should have caused ulcerations that looked like bullet holes in my intestines. It came out of nowhere and I am trying to climb out of the hole. My GI said it was so bad he was recommending surgery, but I went with Stelara instead.

So... I think it's risky to be on nothing at all unless you are willing to pay the price if a flare hits you hard and fast. I hope that what happened to me will never happen to you, but this disease is so unpredictable that I would say it's better to be safe than sorry.

Probably not what you wanted to hear, but my two cents nonetheless. I wish you much health!
Posted 4/3/2014 2:41 PM (GMT 0)
I agree w Stef. I was in denial for some time when I was younger- and, of course, invincible- and boy was it sucky when it all caught up because I "didn't need" maintenance drugs. Long story short- I would never not want the surgery I ended up having, because life is SO much better, but the suffering it took to get to that point (all or in part because I refused to take the drugs I was prescribed and thought I would "experiment" with alternative treatments) could have been lessened. TBH, I don't feel like popping a couple pills daily is that big a deal when it means the potential avoidance of A LOT of pain and suffering. My $.02.
Posted 4/3/2014 3:01 PM (GMT 0)
You should feel very thankfull that you have a GI who is conservative in his approach.  I would give anything to find a GI like that.  All the GIs I have seen, wanted to turn off my immune system with humira o remicad or 6mp.  I would give anything to find a GI who work with me on the diet approach. 

When I was diagnosed in 2007,  I had two massive rectal fistulas and was diagnosed with CD in the colon and a little in the illium.  My GI wanted me to go the remicad route, but I decided not to turn off my immune system, and I went on the SCD diet and the only drug I took was pentassa. 

After 7 months of fanatical dedication to the SCD diet, both fistulas were gone as were all my other symptoms like white mucus and blood in my bms.  I have been 100% symptom free since 2007 and I still follow the SCD diet and I still take pentassa.  Maybe I don't need the drugs, but pentassa is such a mild drug without any bad side effects, so I still take 1000mg , 3 times a day.  The diet approach has worked execllent in my case, but also, I didn't have a lot of previous damage in my intestines like you seem to have.    

Post Edited (NY-Sooner) : 4/3/2014 9:08:08 AM (GMT-6)

Posted 4/3/2014 4:41 PM (GMT 0)
I would just like to say that taking a biologic like remicade or Humira does not "turn off" your immune system. Having taken a biologic since 1999 I feel I am qualified to make that kind of a disclaimer. Sure, those meds have the potential to lower your resistance, but your immune system does not "turn off". I have taught in public schools and my own kids are in school and bring home germs all the time and i have not gotten anynsicker than i think the average person would. I wash my hands and get some kind of bug (sinus infection or whatever) about once a year. that doesnt seem outrageous to me.

I have also done the SCD and I'm shocked (and pleased) that NY-Sooner's fistulae healed by virtue of diet only, but that to me is an absolute fluke and great stroke of luck, understanding what I understand about fistulae.

Not trying to be pushy as it is good for us to all share our experiences, but I don't want you to be scared off by someone's extreme view on meds when so very many people have had so much success and healing.
Posted 4/3/2014 5:30 PM (GMT 0)
I am also in the camp of people who thought they could go without maintenance treatment once they felt better (twice) and things went pretty great for awhile. I needed immodium maybe once a week--yes, I realize that's not remission compared to your average person, but still--but I got off everything else for two years. With this disease, however, nothing lasts forever. It may be a month, a year, or 10 years, but we know scientifically that the disease will return, and maintenance drugs can help prevent blips and reduce symptoms. Diet and supplements can too.

Now that I'm two years into my worst flare and taking 10 medications for various ailments, there are a lot of things I'd go back and change, but hindsight is 20/20...or at least 20/30. :)
Posted 4/3/2014 6:07 PM (GMT 0)
I am very much a minimalist when it comes to meds - I am a big one for start with the least impactful and work up from there.  I did end up with a GI that lived by the "top-down" theory and it just did not fit for me.  I do follow my diet...what I have found over 20 years that works for me....it just isn;t always enough to handle mini-flares and flare ups.

I will say though that I can not feel comfortable going med free.  I did a "medication vacation" some years ago.  Although my maintenance med is considered by many to do nothing, I noticed a large difference without it.  I also notice that in my current flare, the days I miss my meds (I am terribly forgetful or just in denial who knows) I suffer more.  I am a firm believer though in maintenance meds to slow advances in the ongoing/changing course of the disease 

Posted 4/4/2014 6:26 PM (GMT 0)
I had been on many meds for many years, and many times usually 2-3 different medications. My ultimate goal was minimizing the amount of medicines I would need. I am on Tysabri right now (a biologic) that has allowed me to wean off of prednisone... which I was having issues flaring everytime I tried to go lower than 20 mg. This is the only medicine I am on that is doing an alright job at controlling my disease. I am on stronger doses of vitamins (such as B12, D, calcium, zinc) to help so I don't feel ill... and next week, am getting iron infusions as my body hasn't recovered on that front since my surgery. I also follow what agrees with my stomach in terms of food.

I think ultimately, don't be afraid of the medicines. I could fret a bunch about what I am on if I concentrate on the potential side effects. I also do what I can to minimize the potential of me getting those type of effects from the medicine. While some (key word: some) may not need medicines if they have a calm enough disease, many others do because I have always felt with this disease, you can head into a tailspin pretty quick and it may take a lot more to recover, and may even need surgery.

 

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