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Crohn's Disease Forum » Ulcerative Colitis Forum » How to manage my UC (from Rome, Italy)


10-20-2013, 04:10 AM   #1
Aydmen
 
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How to manage my UC (from Rome, Italy)

Hi everyone!
I am so glad to have found this fourms, my UC is lately driving me nuts

I was diagnosed in 2009, and since then have been having flare ups on and off, and some heavenly time of remission. I was in the States for a couple of years, and everything seemed to be fine.
Now I am back in Rome, Italy, and I have been having a flare up since May. I am on meds (Salazyopirin, Colifoam and Topster, and cortisone) but honestly I would like suggestions on more natural remedies because I can't stand being on cortisone anymore -.-*

I would like to know if any of you found excercise or a specific sport to improve your condition? I walk a lot (1.5/2 hours per day), but I am having issues being outside (on buses and PT) especially in the mornings.

I also am into theatre, and various performances, and am getting anxious that my UC will give me issues when I'm on stage - I am seriously freaking out.
My doctor keeps on telling me that I have to put aside my illness from all the other stuff in my life, otherwise I stress too much, but I don't see how I can really follow that advice, when I'm afraid of not having a restroom around.

Thanks in advance for all your help, and sorry for the long post!
10-20-2013, 10:36 AM   #2
FrancisK7
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Hello Aydmen,

Welcome to CF!

Sorry to hear about your UC. We all know it can suck, but you've come to the right place for support!

There are some natural treatment options. I prefer the word treatment over remedies because we are not curing your UC. It's kind of a downer but I prefer to be realistic when it comes to dealing with my disease. Objectivity will protect you in the long run.

The cortisone is AWFUL and I will never go back on it again unless it's a life or death situation. This drug is nasty. I understand you want out and you do have some options.

Paleolithic diet

Paleo diet is all the craze right now among Hollywood starlets. People with IBD as well.

Simply put, It consists of eating only things a hunting-gathering civilization could have been eating, with some agriculture on the side. Fruits, veggies, nuts, some meat.

Removing dairy, grain and transformed products takes off a big stress on your digestive tract. The more complex (chemically speaking) or transformed your food is, the more energy your body needs to extend to digest and process it.

By removing that stress, some patients have seen tremendous improvements and even remission. If you choose that option you need to commit to it and it can be very hard for some. I suppose two factors will come into deciding if the paleo diet is right for you: how much you like food, and how desperate you are to improve your situation.

Cannabis
In the 90s an Israeli researcher called Dr Raphael Mechoulam discovered the molecule THC, a cannabinoid. The molecule, he said, was responsible for the high people felt when they smoked, vaporized or ingested marijuana.

The subsequent two decades were used to do more in-vitro research on cannabinoids in general. THC was the first to be discovered, but now we know of 40+, including CBN, CBG and the increasingly popular cannabidiol, CBD.

In the early 2000s neurologists successfully mapped the entire network of CB1 and CB2 receptors in the human body that interact with cannabinoids. Surprisingly they found these receptors everywhere, but huge concentrations in the brain and the intestine were observed.

In the late 2000s, multiple teams of researchers published results of in-vitro research on cannabinoids as well as limited human clinical trials. THC and CBD especially were found to possess very powerful anti-inflammatory properties. CBD was found to chemically modulate gut activity.

And in the past few years, more thorough double blind human clinical trials are happening. The results are coming in and so far, it seems pretty clear: cannabis is immensely helpful for IBD. It has induced remission in a number of patients in those trials.

Since you're in Europe access should be very easy. Last time I was in Italy it sure was. Spain has the best medical strains. Some of them have positive CBD:THC ratios so that you would not get high at all, but still get the healing and symptom mitigating properties.

Supplements

Omega-3 and the likes. A lot of people take a long list of supplements. Some have experimented for decades with them and will swear by a certain stack.

I don't know much about supplements but I'm sure others will pitch in!

The paleo diet, cannabis and supplements are the only three natural treatment options I can think of right now.

As for the practical problem, there's immodium, and there are adult diapers. You avoid eating greasy or fibrous food before performances, and take an immodium, to limit the chances of needing to go to the bathroom. If you're performing while you're flaring, you'll need to wear a diaper and have changes of underwear in your room ready for a quick change in-between scenes. That's the reality of IBD performers but it's doable.

Hope you feel better soon!
10-20-2013, 04:32 PM   #3
Aydmen
 
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Thank you very much for your advice!
I was wondering if cannabis could help out, and I was also wondering if I should be getting probiotics...
I will look them up, and see if I find something useful.

As for the performances, the situation is a bit complex...
I really hope I won't have to buy adult diapers
10-20-2013, 05:02 PM   #4
FrancisK7
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Cannabis will definitely help and probiotics may help as well. Try it out and see for yourself, probiotics aren't very expensive.

As for the performance, I imagine the situation is indeed complex, but by avoiding whole foods and loading up on immodium before performances, you can avoid emergency urges.
10-25-2013, 08:44 AM   #5
jwfoise
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I have taken a probiotic for several years and it has really helped keep my flares in check.
10-25-2013, 04:55 PM   #6
Aydmen
 
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Would you be so kind as to tell me which pribiotics? Is there a brand, or a specific kind of food?
Thank you!
10-28-2013, 12:59 PM   #7
jwfoise
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I take ReNew Life Ultimate Flora Senior Formula. It is the only one I've tried, so I can't compare to others. I had a conversation about probiotics with my GI before I tried them and together we decided it would be a good thing for me to try (I had read a bit of the scientific literature about them before). I tried it for a month and it seemed to help. I went off for a month, and things kind of returned to where they were, so I went back on and have taken it for years now.

Most of the research has been done on single strains, and that is not what is commercially available; what is available are mixes of different strains. This brand was recommended by a friend who has a different GI problem, so I decided to try it.

It is not a magic cure. But I do seem to have fewer flares than I used to, and the flares generally will last for days instead of weeks.

I don't do anything special about food - food isn't a significant trigger for me. Stress is my single biggest, semi-controllable trigger.
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