started with budenofalk (like entocort)

Julie · Post by **Julie** » Fri Aug 31, 2012 12:35 pm

Hi everybody,

My name is Julie and I have LC. I get flares every month and I've had this for 12 years. I was diagnosed with this last year. At least my symptoms have a name now. I've started with a treatment after Entocort 9 mg a day. It's called Budenofalk (also 9 mg a day).

My doctor said I needed to take 3 pills a day (9 mg) for 3 weeks and then go to 2 pills a day for 3 weeks.

The thing is, I still have these horrible flares. I can't eat and I can hardly drink water then. I've been hospitalised twice in 6 months. I'm currently on Budenofalk 9 mg a day. My question is: How long did it take for you to have less flares? I also changed my diet completly. It really is hard to live like this. I still have so many questions. My family, my boss and boyfriend are getting tired of it.

Am I going to get better or am I going to stay like this forever? I'm kind of desperate at this point. I am so afraid to lose my job and even more afraid to lose my boyfriend. He loves me a lot but we can't do many things (going out to a restaurant, long walks are difficult because my energy level is so low, ...)

LC is kind of rare for women of my age (22 years old). I don't know anyone who has this disease. I am so greatfull to find you here. It makes me feel more normal. Thank god I am not the only one.

Julie

Christine. · Post by **Christine.** » Fri Aug 31, 2012 5:06 pm

Julie
My heart goes out to you. 12 years is a terribly long time to suffer without answers. You must have been 10 years old when this all started. Please know that you are in the right place here. My LC is under control without meds but I am sure others here will confirm that you are on the right medicine to get your flares under control. You mentioned that you have changed your diet. Are you gluten free? Most all of us are. How about dairy or soy? I'm sure that you have found that high fiber is BAD when you are in a flare. Please look at the section for newbies. You can become dehydrated. I'm sure others here will chime in.

Christine

Post by **tex** » Fri Aug 31, 2012 6:01 pm

Hi Julie,

Welcome to the group. When the genes that predispose to LC (or any form of microscopic colitis) are triggered, the genes that predispose to certain food sensitivities are also usually triggered. Even though we test negative to the classic celiac tests, most of us are extremely sensitive to gluten (the same protein that causes celiac disease), and casein (the primary protein in all dairy products), and about half of us are sensitive to soy and most other legumes.

Budesonide will suppress the symptoms for many of us, but unless we change our diet, soon aftrer we stop using it we tend to relapse. For some of us, we have to change our diet even while taking it, or it will not control our symptoms, because the food sensitivities generate additional inflammation faster than the corticosteroid can suppress it.

Some of us here don't take any drugs, we just change our diet to prevent any symptoms from developing. A few of us have been in remission for about 10 years by diet changes alone (no medications). Some of the more severe cases have to continue to take low doses of budesonide in addition to changing their diet in order to control their symptoms. (A low maintenance dose is 3mg per day, or every other day, or every third day, etc.).

Incidentally, our youngest member was two and a half years old when she was diagnosed. She is probably about six now, and the last I heard, she was doing fine, much to the surprise of her team of doctors who wanted to prescribe budesonide for her. Fortunately her mother believed us rather than her doctors, and changed her diet. She healed very quickly.

Again, welcome aboard, and please feel free to ask anything.

Tex

ant · Post by **ant** » Sat Sep 01, 2012 1:21 am

Dear Julie,

Welcome from Hong Kong.

Yes, (if you do not have any adverse reactions to it) you are on the right medicine. I found it (plus a GF, DF, SF, NF, EF diet) calmed my gut down after about three weeks, but it took about 6 months before I could begin to get a life back (we are all different and hopefully you will get better quicker). I only tapered down from entocort very slowly (with ups and downs in terms of BMs), over more than a year before going down to 6mg.

As far as boyfriend is concerned it is difficult to advise. If you can, do not talk too much about your problems (do that with us) and be as cheerful as you can, given the circumstances.

Going out to bars, parties and restaurants is a challenge, but not impossible. I tell people I am celiac which most people have heard of. I get round some of the social issues by drinking white wine, vodka, gin & tonic or cider (no complicated alcohol drinks and no beer). Here is a story: I once was in a restaurants and some guests challenged me to a beer drinking contest. I challenged them back, by pouring myself a shot glass of pure olive oil and drinking it down in one. (They did not dare do the same, but I got respect).

Also, most bars will have olives (because used for cocktails) which I substitute for the usual snacks. I think you may find cured or smoked ham or fish available at restaurants (unfortunately the fast food restaurants are not so easy).

If you keep reading here you will find tips on food, travel and of course ways to get better. As the label under the logo says "You will get your life back"..... Odds are that if you follow the diet and take the entocort you should being going for long walk within a couple of months. Even if it takes longer you will eventually.

Best wishes in your journey to remission, ant

Julie · Post by **Julie** » Sat Sep 01, 2012 7:18 am

Hi everybody,

Thank you for all your replies. It gives me hope to read that you all feel better. Thank you for all the advise, I've been looking up things I can eat. This is an amazing website.

Thank you again.

Julie