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Hard time coming out of flare...NATURAL REMEDIES!

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Ulcerative Colitis
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Posted 2/21/2013 2:50 AM (GMT 0)
Hi everyone!

I was diagnosed with Ulcerative proctitis about a year ago. It was pretty bad before I was diagnosed...I had lost about 7 pounds (I am 5'2" and was down to 113 when I'm normally 120.) Then, I started on canassa and it was AMAZING. Literally, saw a difference in a week. Well after a few weeks of that, I started taking it less and have been in a mild flare ever since...for probably the past 7 months or so. My movements are RELATIVELY normal..but I have urges and then it just ends up being muscus or blood. :( upsetting. I was put on Lialda, which I think is starting to make my hair fall out...and I didn't see too much improvement with that.

I was wondering if you guys had any suggestions. I'm really into the natural stuff and was thinking about starting a ginger thing. I LOVE ginger too! So I literally could eat it all day! Also, I bought some aloe juice and have been drinking that...but I heard mixed reviews on that one. Is it possible that my UP has spread and that is why the canassa isn't as helpful anymore?

I'm really new to this stuff and my family is helpful, but doesn't really understand. Plus I'm 1000 miles away from my doctor because I am at college. I am functioning, but I don't want this to get worse! Anyone have experiences with enemas being helpful? Would love to avoid corticosteroids if possible! I also work out and really do try to eat healthy! and I recently cut out red meat completely from diet.

Thanks so much and good luck to all of ya'll! turn
Posted 2/21/2013 3:18 AM (GMT 0)
There's lots of different things you can try that are 'more natural'. Whether or not they will work for your individual circumstance is another story. All you can do is experiment.

Probiotics, specifically VSL#3, seem to be really helpful for a lot of people. It's been clinically studied and shown to bring on remission. Of course you have to take a fairly high dose and keep taking it for a long time. Another really 'good' probiotic is Mutaflor, however you can't get that one shipped to the US.

If you are in the states, it seems to be that you can get your doctor to prescribe this probiotic in a double strength and subsequently get your insurance to pay for it.In Canada you it's not available in the Double strength form. For me at four packets a day, it's costing $240/month.

I also think it's a good idea to give a gluten free diet a try.

There's a lot of other stuff you can try too which you can see in people's signatures. I'm sure everyone will pipe in with something.

Good Luck, I hope the natural stuff works for you.
Posted 2/21/2013 3:29 AM (GMT 0)
Welcome btb

Canasa is a good treatment but you might also try mesalamine enemas overnight and use the Canasa during the day since you still have problems.

Some people here have had luck with taking supplements but not me. What worked for me and others is to find out what foods cause our guts to have bad reactions (sometimes 24 hrs later) and remove those foods/drinks. Some are on a permanent "out" list and other foods can be re-introduced later when remission is achieved.

Removing gluten and dairy are the two biggies that seem to give the biggest benefits. But not everyone is the same and many of us have other foods/drinks that are also problems. Keeping a food journal will show you the pattern that you don't notice until you look back over a week or 2 and connect what you eat with how you feel.

You have to find out what makes your gut happy or unhappy. Doctors don't think diet has anything to do with UC but they are wrong. What they know is Rx meds. It's up to you to fill in the blanks and stay healthy.

Ginger is good but don't go overboard with it. Veggie juices are good too. But as I said my remission came from removing things from my diet rather than adding new things.

Good luck.

add: yes I'm a total believer in probiotics being beneficial. I guess they are a supplement ha :-)
Posted 2/21/2013 3:35 AM (GMT 0)
thanks for all your help guys!!! I really appreciate it. You are right about finding the right foods, it's just hard with my college student budget. It's hard to know what they put in the dining hall food. lol I don't even think I want to know sometimes! :-P Not to mention I'm sure the alcohol intake isn't the best idea.

I did forget to mention that I had been on align for a little while, and it made me feel good, but not total remission. I just started again two days ago. Just wondering if probiotics are okay long term!

and thanks again! :)
Posted 2/21/2013 4:43 AM (GMT 0)
btbcurls,
I'm new to this forum and It's so nice to hear about someone in college dealing with UC! From my past two years experience in college eating (I now have my own kitchen and apartment, thank god), the dining hall food is not good! grosss and bad for the UC. It's really hard being in college and changing your whole lifestyle when everyone around you eats whatever and does whatever they want. It's also hard on a budget and with limited resources. My doctor is also hours away. The lack of sleep and stress i'm sure doesn't help either lol.

I'm currently in a pretty bad flare and am trying to figure out some natural remedies to help as well, because I don't want to have to take prednisone :( which has been the only thing in the past to help

21 yo
dx: april 2011
flares: 6 mo before diagnosis, august 2011-april 2012, and currently
rx: lialda, tumeric (for joint pain), b-12, daily vitamin, modified diet slightly
Posted 2/21/2013 4:50 AM (GMT 0)
hi lauren thx for posting! i'm also 21 ! It is definitely hard but I was just talking to my roommate about going gluten-free. I'm really willing to try anything at this point but my advice, given my own personal experience, definitely do not taper/stop meds, even if you are feeling well w/o the docs permission. I wish I had never cut back on my canasa a year ago. :(. I am deathly afraid of having to take prednisone one day. Hopefully I can avoid that, and you too! And all of us really lol But yes definitely finding ways to be less stressed is important, as is sleep. I hope you find some natural remedies that help! I am definitely going to try some things.

I hope you feel better and if anything helps, please let me know!
Posted 2/21/2013 5:00 AM (GMT 0)
Another natural remedy of sorts that is so easy to forget about is stress management. Both of you in college mentioned stress.

I try to take an epsom salts bath a couple of times a week. I also add a few drops of lavender oil.

Inexpensive and effective!
Posted 2/21/2013 12:42 PM (GMT 0)
btb and lauren,

Welcome to the forum both of you.

Sorry you have to be a part of this terrible club.

You've been given some good advice already.

There are lots of things IMO you can do to get a handle on your symptoms:

 - l-glutamine powder for diarrhea (taken on empty stomach), and long term for colonic repair

 - slippery elm powder to coat digestive tract

 - ensure your vitamin d3 levels are good

 - probiotics - good quality ones

 - diet modification (as in gluten and dairy free)

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 2/21/2013 1:09 PM (GMT 0)
It's not a "natural" remedy, but have you tried mesalamine enemas in conjunciton with the oral mesalamine (Lialda)? I think that since you had good initial success with canasa, that combo might work really well. Or perhaps instead of Lialda you could try Colazal.

I'd also try a higher-quality probiotic, since you noticed some improvement with Align.
Posted 2/21/2013 2:38 PM (GMT 0)
hey BTB curls,

I was diaganosed the same as you but now its spread to UC confused   im just coming out of a flare needed predisolone for 8 weeks to calm down my inflammation which is basically 8 tabs a day first week 7 a day for the next week etc all the way down to one a day, personally they work wonders for me i feel as if i havent got UC at all. anyway sorry natural remedies, try wheat grass powder i have a shot in the morning mix a table spoon with water (ill warn you tastes horrid) wash it down with OJ or something straight after and you will be fine. If you look into it the health benefits are huge apparently its good for Colitis, what it does is oxygenates the blood which doesnt allow bacteria to grow in the body so hopefullly kills all the nasty UC germs in the intestines and colon.

Hope this helps.

Tom

Posted 2/21/2013 2:46 PM (GMT 0)
In terms of natural treatments, both Boswellia and Curcumin are powerful anti-inflammatories, there is research to back both of them in the tratment of UC. I personally have found them very helpful, I rely on those instead of the rx meds.
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