Diagnosed a month ago, now having a flare up. What to do?

[JessesMom]

@Leah, I haven't had the testing done yet. My boyfriend and I just got our first place back in October and we just can shell out that kind of money right now. I really wish I could get the testing done so that I knew what to avoid so my bowels could heal.
On whether or not the medicine is helping ... my D has slowed down and yesterday I have a movement that was almost normal. But over the last few days I have been having stomach aches on and off all day long, they come in waves through out the day and its exhausting. I don't know if its just really bad trapped gas (so embarrassing) as that seems to be the only thing that will relieve it... or if its something that I ate. The only change I've made that sticks in my mind is that I had stopped my probiotic and I'm not sure if that could be the problem or not.

Also I wanted to ask how long someone can be on the Entocort? My GI has me on it for 3 months and I'm almost done with the first month of that. But from what I've read people on this site have been on it for longer and I feel like that would benefit me the most and give my bowels time to heal.
Thanks again for the continued support

[Leah]

I was on Entocort for 6 months, but not at the highest dose. I stayed on 9mg for about a month and when I was only going once a day and pretty norman, I started to wean down the dose. I was on 6mg. a day for another two months before I titrated down again. once I was on one pill a day, I really could see what I was reacting to. I was on that dose for another 2 months. The last month was slowly decreasing the dose until I was off of it.

I have to say though that if you don't radically change your diet, you will probably relapse when you get off the drugs. The test didn't work for me, so I had to do it the hard way. I did a major elimination diet. I went GF, DF, and later SF. On top of that I took out all night shades ( potato, tomato, pepper), all beans and legumes, coffee, tea, and raw fruits and veggies. I know it sounds awful, but the time that you are taking the meds is the time to heal and you can't heal unless you take the foods out that are causing the inflammation. So I basically ate meats, eggs, cooked veggies, canned peaches, apple sauce, rice, rice cakes with almond butter, corn tortillas, and chex cereal with almond milk.

Since I have healed for almost a year now, I have been able to add back in many of the foods I first eliminated. I am still GF, DF, SF and will probably stay that way.

We all have our own journey with this disease, but if you can't afford the test right now, then you must seriously think of changing your diet. It can be done :)

Good luck
Leah

[Gabes-Apg]

You dont need the test results to be able to heal and be well

I figured out my main triggers and got pretty good MC management in 6-9 months (no meds after about 2 months never had entocort)
based on the wealth of knowledge here ditched gluten, lactose, salad, fruit, fibre, nuts etc
started on rice and chicken and went on from there.
was working full time, and travelling for work.

Even with the test results, the same amount of work, dedication, tenacity, patience, mental acceptance etc etc has to be applied to your life to heal and be well.

yep - it is frustrating, overwhelming, disapointing at first that there is no easy way or short cut. Once you stop looking (?hoping) for the easy way/short cut, magic happens

[tex]

Once you stop looking (?hoping) for the easy way/short cut, magic happens

Words of wisdom, for sure.

Tex

[mcnomore]

I didn't know xantham gum causes D, what do you recommend instead in bread? Thanks

[ldubois7]

Tex and Gabes are right! It took quite awhile for me to get it through my head that I had to drastically change what I was eating. Even though I ate very well, I was reacting to my regular foods...chicken. rice, oats, almonds, corn etc.! I am grain free right now to try to heal my leaky gut.

After Enterolab testing, then a few months later, MRT testing, I think I finally have a handle on what was holding me back. My meals are very basic and simple and I am finally starting to feel better after almost a year of MC.

Stick with this forum...the advice is priceless!

[tex]

mcnomore,

Most baked goods will work OK just by leaving out the gum. Bread, however, is a much more difficult problem. Recipes that use tapioca flour should stick together better, but that may not be a complete solution, and some of us can't tolerate tapioca.

Maybe someone who has found a way around this problem will see your post and respond. I no longer eat bread, so I've never explored a solution to this dilemma.

Tex

[DebE13]

My vote is for Silk almond milk too. I use the chocolate almond milk a the creamer to my coffee. Be aware of soy if you still feel run down. I was drinking about two gallons of soy milk a week thinking I was being healthy but my Enterolab tests showed I react to soy. Maybe you are tolerant to soy but it could be a problem.

I found it was easier to keep my family's diet the same and concentrate on my health and diet alone. Making two separate meals is not easy but you may be more stressed if you have to look at unhappy faces at dinner time because they're stuck eating your foods. If they are cooperative, that's a different story. I have a hard time serving processed foods now because I feel like I'm contributing to poor health. Transitions can be hard but gradual changes in the whole family's diet is doable.