Crohn's colitis- any relief?

Has your doctor suggested surgery - a colectomy?

Sounds like you may have reached the end of that rope, unfortunately.

Perhaps someone else will have something to share but that is a very long list of things you've tried.

Exclusive enteral nutrition isn't usually recommended for colitis but it worked very well for my son, whose CD was severe in both the small and large intestine. He had perianal disease and inflammation in the rectum and sigmoid bad enough he was bleeding.

If you haven't considered that option you might look into it. For my son, it wasn't a permanent fix but it has been very helpful to some other kids I know of who use it to treat flares as a supplement to maintenance meds.

Best wishes,

Patricia

Have you tried Bee Propolis or LDN? Cimzia? Remicaid?  I have been fighting my crohn's colitis with major bleeding issues for the last several years and I am like you, I am fighting to keep my colon in the hopes that there will be a cure one day. Humira worked for me for about a year and Cimzia for the last 2 years combined with Lialda.  I started bleeding again recently so I started taking the bee propolis and my bleeding stopped overnight. I take 500mg two times per day. I was having 10-20 bm per day with blood and now I have 1 with little to no blood. It is cheap when I order from Puritans Pride and I have no side effects. I have also heard good things about LDN although I have never tried it yet. If you decide to go that route, you can order it from India at alldaychemist without a prescription. I believe there are natural products that help with this disease and I am experimenting to find the perfect mix to keep this dd at bay. I just ordered Colostrum as I read some good things about this also. Good Luck to you!!!

Post Edited (pmedic) : 2/14/2011 6:29:20 PM (GMT-7)

Thank you all so much for your advice and suggestions. I've never really been "part of a community" and sharing this with you and knowing you are out there listening really does make a difference, especially during a particularly difficult time. (ok,ok, enough sap, I'll stop now)

Rlsnights- have not tried enternal nutrition, but sounds like a possibility. I'm glad it is helping your son - my symptoms and complications have been very similar to what you are describing, at least in the sigmoid and rect. area. I've had all the perianal complications as well. "Fortunately" it has been limited to the sigmoid and rectal locations since I was initially diagnosed many years ago. I'm so sorry to hear he has to deal with this at such a young age.

Notsosicklygirl- I was on an ustekinumab trial a couple years ago and I happened to have a very bad reaction ( I believe it was referred to as syrum sickness), so no luck there. I was on remicade about 10 years ago and that was an absolute miracle drug for about a year and a half until I needed to increase the dose and eventually became immune to the therapy. Humira was unsuccessful, so my Dr. and I don't think there is a very good chance I'd respond well to another biological. Cimzia is still out there as an untried option should we attempt to defy the odds anyway.

PMedic - bee propolis? Your response sounds incredible and that's a new one to me. What's the theory on how it works? Would be interested in hearing more on that and other alternative meds people have responded to. As far as the others, haven't tried Ldn or cimzia (see above) but remicade was great while it lasted.

Mogulz- From what I have read, Bee Propolis acts as a strong antimicrobial. Bee's never get sick because they surround themselves with this stuff and rub against the hive to coat themselves since a sick bee could destroy the whole hive. Anyway, I found out about it from another member here and it helped me with bleeding. I still take my other meds with it and so far I cant get off of them yet. I still have some cd symptoms if I don't take the BP on schedule so I am searching to find another supplement to add to the mix.

Thanks pmedic. Will definitely be doing some research into the bee propolis. Please let me know if you find anything interesting and I'll do the same.

Becoming undone- thanks for the info....glad to hear you responded to the cimzia despite failing the other biologics. Gives me hope that there is one more tool in the toolbox I can try. I completely understand your reference to the "new normal," and am glad you've at least made it made it to that plateau; I would be perfectly satisfied with getting the disease into a "manageable" condition too. My goal is to be in a physical state stable enough that I don't spent the better part of my day concerned about where I am, my proximity to restrooms, how to discretely excuse myself from important meetings, phone calls and conversations all while trying to maintain a professional, copasetic veneer at work, and be a strong father and husband at home. It's exhausting! Good luck to you and hang in there. Thanks again for your insight and advice...and for listening

Hey fellow crohn's colitis sufferers...I'm the queen of bee propolis and have been taking it daily now for gosh about 7 or so yrs now, my GI told me to continue with it since it does help "me" and since I'm either allergic or non-responsive to traditional oral RX used for crohn's I had no choice but to put my skeptisism aside and give the natural route/diet change a try (see my sig).

I've been suffering with no full remission with my crohn's for the last 20 yrs as of this yr actually, granted I'm still not in total remission but I'm certainly better than I was before the natural route and diet change I took on about 6-7 yrs ago now.

My biggest complaint to date is still having frequency (tends to be approx 5X/day on average) and holding it in, but as far as the rest, no D, no mucuos, no blood way less frequency compared to a good (or bad actually) 30+ times/day.

It's worth googling bee propolis, just be sure you're not allergic to bees, pregnant, breast feeding.


Take care! and check out my sig, since afterall it generally takes a combo of things in order to find some relief, and everyone is different, what works for some doesn't work for all and often different combinations work for different ppl but one thing is for sure, a good probiotic and fibre supplements both daily and indefinitely (flaring or not) are a must according to my GI (a renouned researcher for crohn's and colitis in Canada, Dr. Remo Pannacioni)

Thanks for letting me know about the Bee Propolis Pb4. I have been taking it since we had that last conversation and I am doing well on it! My bleeding did stop overnight! Thank you again!!!!

Oops, one more addition, according to my GI the reason it's safe (as long as you're not allergic to bees) is because it's 100% non-toxic, it doesn't build up in your system which is why he also recommended I continue with it indefinitely!

Do you still use the Puritans Pride brand? Buy 2 get 3 free? I just made another order from there because the prices are so reasonable!!

Stripey- Maybe you misunderstood us, Bee Propolis is not a probiotic. Google it and you can read plenty about it. It has worked wonders for me and Pb4!

Yes pmedic, still using the puritans pride online brand.

Hey stripey, yeah I've heard of some ppl having similar issues as you with probiotics, it can be tough and expensive but trying different brands and taking them different ways (example, most suggest first thing in the am on an empty stomach) maybe instead try with food or play around with it like take it every other day, try giving your system extra time to adjust, I don't know, just a few thoughts, the research has shown quite a benefit for those with IBD, but as I've said millions of times what works for some doesn't work for all.

good luck!

Started bee propolis 500 mg today and will increase to 2x daily tomorrow....stay tuned!

Talked to GI as well. Since being 2.5 weeks on pred (40, 30, 30 mg) and minimal improvement, his recommendation is to increase dose to 45 mg for 2-3 wks and taper down to try to get it stable and let MTX maintain.

Not real keen on upping prednisone and getting the moon face, jitters, and acne, so hope the bee goo works quickly