Sawyer, I'm a little concerned that the Entocort and Pentasa isn't going to be enough. Entocort? It's ok. I'm guessing your doctor tries to use Entocort to knock down the inflammation and put you in clinical remission. Then he's trying to utilize the Pentasa to keep you there. It's an extremely conservative approach and frankly, not one I'm a fan of. I say that because the data on Mesalamine (the active ingredient in Pentasa) in Crohn's disease is just plain not very good.
There's a Cochrane review of it here you can read that showcases as much.
In my opinion, with your current treatment regimen, you're going to continue through cycles of symptoms and less symptoms because your inflammation never really goes away. Over time, that chronic inflammation will lead to scarring of your intestines and strictures. And that's when the real trouble begins
Based upon the pain meds you're on, I'm guessing you're already heading in that direction and that needs to be reversed pronto.
I personally would bring up the idea of utilizing some of the stronger medications with your doctor. In addition, I would look to throw the entire sink at your Crohn's. Some ideas:
- Western Medicine - A stronger treatment regimen than you're currently on.
- Dietary changes -
Improve your n3-n6 fatty acid ratio,
Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot
and we now have a juicing subforum located here.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and
adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a big fan of
Low Dose Naltrexone. Two studies in adults and one in children have had great results (see the stuck thread when following that link) and there are very few side effects. It's also not very expensive.
Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great.
Studies have actually shown that massage can reduce inflammation.
Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able -
a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in
vitamin B12,
vitamin D, and
magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is pretty useless and I strongly suggest you eat foods high in magnesium or discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our
diet/fitness/supplements forum for ideas. I'm personally a big fan of
tumeric (curcumin) and strongly suggest utilizing it if your doctor is ok with it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.
Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
All my best to you.
