Medicine side effects; managing Crohn's medicine-free

The treatment should not be worse than the disease, for sure. But let's be clear: active Crohn's is not a walk in the park. There are serious and potentially very significant health risks to leaving your Crohn's untreated.

I don't take azathioprine but many here do, and they can surely tell you how to manage some of the side effects. The long term risks of this med are another topic I know little about. But I will say that I take folic acid daily to help prevent some of the side effects of the meds I am on, and my hair and nails have been looking great.

Your DR should discuss potential side effects of any med s/he prescribes. You should also be asking these questions when you are discussing your treatment plan. The pharmacist also gave you an insert describing the medication and the side effects and you should have read that.

Thank you both for your replies! I agree that we tend to blame medicines and I think part of the reason I feel so frustrated is because none of the treatments I've tried so far have helped my symptoms. I guess I assumed since my disease is not very progressed yet (according to my doctor) that it would be easy to find a treatment that worked for me. This, coupled with the few unpleasant side effects I've had, has made me ready to give up on medication already. I'm definitely going to talk to my doctor and see if there's a medication I can take that potentially has less side effects for me and is also more effective.

In addition, I'm also thinking about trying something like the SCD diet. I don't have a very specific idea of which foods hurt me the most yet (besides fried, greasy/fast foods) so I thought maybe a strict, "clean" diet with no processed foods/sugar/very little dairy would be a good place to start. Not the most exciting diet in the world, but I'm willing to try it if it'll help my symptoms.

Thanks again to both of you for responding!

Hi Marma. While my mantra is the fewer meds the better I haven't been very lucky, and I'm sorry you haven't either.

I too started out on Pred and though my CD symptoms went away I developed crushing anxiety. I went up and down on Pred for 9 months, but I got off of it successfully.

One month after my diagnosis while attempting to taper Pred I was also put on Azathioprine. I remember reading about the increased cancer risk and being nervous. But the increased risk compared to the general population is still minor. What happened to me however was far worse, 8 days after starting I went into the hospital with Septic Shock, I was 2 days away from death according to one ER doc. I was convinced it was the med, but they never consulted with my GI, and the one I did end up seeing didn't want to stop the med. So I go home, back on the med, 3 days later I'm back with acute pancreatitis. My GI finally swooped in and said ok this med is bad, stopped the med and poof all better... but still on Pred.

A couple of months after all that I started Remicade, and it put me in remission and allowed me to get off the Pred. For now it is the only med I'm on for CD, though as of late it seems to lose its effectiveness earlier. It's been 3 years now and most of that time has been great.

As much as I'd love to go med free I don't think it's an option for me, even with all the diets and stuff out there. Personally I'm hopeful that advances in medicine will lead us to a point where the meds are not nearly as scary as they are now, yet just as powerful. I hold out hope for a cure within my lifetime, my GI said it was possible.

:)

I am going to be extremely blunt and I hope I don't come across as offensive, because that is not my intent at all.

Trying to manage your Crohn's without medication and only through diet is extremely foolish. Not that it might not work, because it has for some people, but for most people it does NOT work. Or it does not work indefinitely. Your symptoms may disappear for a time, but that does not mean your inflammation is all gone or that the disease is even in remission. It could be simmering in the background, doing damage you don't know about until you get an obstruction, a perforated bowel, or something worse.

@beave makes an EXCELLENT point. To be honest, you're overreacting a bit to the warnings for the meds. Think about it this way. Untreated Crohn's disease WILL eventually kill you. The meds MIGHT give you cancer (although it is actually fairly rare, as @beave pointed out). Which decision is best in the long run? Which will give you the better quality of life?

If you do decide to try with just diet, one of the best is the SCD, or Simple Carbohydrate Diet. There is a book to tell you how to live it called "Breaking the Vicious Cycle." Some people have had excellent success with it. But I think you'll find in the long run it has a lower permanent success rate than medication.

I'm no stranger to bad side effects from the meds; Imuran gave me pancreatitis so bad I was hospitalized several times and had a feeding tube for a month. My remicade infusions make me feel like I've been hit by truck for a few days every 6 weeks when I get them. But it's far better than the bloody diarrhea I was passing over 20 times a day coupled with the extreme pain, plus the abscesses and fistula I've gotten from flares.

Swelling and hair growth are pretty normal for prednisone. It stinks. Prednisone is actually FAR more dangerous than any of the maintenance meds when used long-term, and odds are you'll end up using it MUCH more frequently if you try to maintain just by diet because you'll end up flaring a lot. I was on prednisone for 10 months when first diagnosed because I was so severe, and I now have damaged eyesight, osteopenia (beginnning of osteoperosis), and other problems - and I'm only 27.

This is pretty long, I know, but I want you to be aware of the facts and not give in to the fear caused by some admittedly bad symptoms that *might* happen. Again, sorry if it seems blunt or harsh - that is not my intent at all. I just want to be very clear what could happen with your choice. Those who have been on the forum a while have seen people with your same opinion go through the cycle of just diet and then ending up extremely sick and almost dying from CD complications later. Most wish they'd just done the medication. Again, some ARE able to do it with just diet. But those are few and many end up really sick after a few years.

Trying a med-free approach made me very sick. Trying low-dose naltrexone (LDN) after that landed me in the hospital with abscesses and fistulas galore. I suffered a lot because I was either playing fast and loose with my meds or not taking them at all- what a stupid kid I was! Anyway, I will never do that again. I have been on 6mp for years and the benefits of being able to live my life drastically out-weigh the POTENTIAL side-effects. On the meds, I definitely benefit. I just wish my body would stop "getting used to" the biologics as there are no others to try after Simponi.

Also- Prednisone is the devil. It makes you feel amazing, but takes its nasty toll. When I'm on it, even for short bursts, it makes me a monster who cannot enjoy things. I had to do a two week spurt last year right before a vacation I had been planning for literally 3 years to Australia/NZ. I was in the middle of Auckland, NZ and I could not get the scowl off my face. Luckily I was able to recognize what was happening and push through it, but that was hard. When I'm on Pred long term, I eat like a maniac, get crazy fat, lose my hair, and get the mooniest of moon-face. Once you stop the pred, the weight will come off (slowly), your face will slim down, and your hair will come back (slowly). The goal of taking a med regularly is to avoid having to need the pred!

It doesn't sound like you've tried many meds. My advice is to keep trying until you find something that works. You have to research and be your own advocate and it sounds like you're trying to do that, which is good. However, you have to research effectively and be reasonable. CD is serious business- unfortunately, the meds to treat it are too. You have to be reasonable...I agree that your initial post feels like you're overreacting. It's definitely understandable though, this is not an easy disease. Healing Well is very helpful and everyone here is very knowledgable.