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

JessesMom · Post by **JessesMom** » Sun Jan 06, 2013 10:40 am

Hi all, I'm new to this board but have joined to find support and helpful information.
My names Tiffany and I'm 21. I got diagnosed with lymphocytic colitis about a month ago after having a colonoscopy. For the first month I was controlling my symptoms with only Cholestyramine (I know this doesn't cure the disease or stop the inflammation) but I was willing to use it so that I could function in life, go to work and take care of my son. But starting last week I started having what I assume is a flare up because the D is back and its simply water again.
So my question is whats up? I'm so frustrated and scared, I feel like there is no way I can function with this for the rest of my life. I'm currently taking a probiotic to at least help the beneficial bacteria in my gut. Also just yesterday I started my GF diet in hopes that gives me relief in some way. The whole GF diet is like pulling teeth already though, it took hours of discussion to get my boyfriend to agree to try GF meals even for just this week

So my question is what else can I do to make things easier on myself?
When I got the diagnosis my GI prescribed me Budesonide 3mg that I was to take 3 times a day for the first month, 2 times a day the second month and then 1 time a day for the last month and then I was told to go off of it - the thing is is that I never started the medicine after reading the horrible side effects list and reading that it can suppress your immune system. I'm horrified to take something that can make it easier to catch another sickness. Also I never started it because I know that it would be a temporary fix and then after stopping it I would relapse anyways.
I'm just so overwhelmed - I feel like I can't take care of my 4 year old son the way I should because spend my time laying on the couch nauseous or sitting in the bathroom waiting for the spell to be over - also I feel like I'm failing as a girlfriend because I can't do the things for my boyfriend that I did before all of this

Leah · Post by **Leah** » Sun Jan 06, 2013 1:27 pm

Welcome to the forum Tiffany. I'm very sorry to hear that you got this disease at such a young age. The process of healing takes a lot of patience and perserverance. You've come to the right place for info.

Most people who are on this forum are gluten intolerant. Many also can not have dairy or soy either. All of these can cause inflammation. When this disease was triggered, food intolerances were probably also triggered. The other thing about food is that there are many that irritate an already inflamed gut. When we are flaring, it's smart to stay away from fiber, raw fruits and veggies, salad, maybe coffee and tea. Maybe tomato products and citrus. We are all slightly different as to our irritants. Your best bet for a diet right now is proteins, cooked veggies, rice and rice products. apple sauce....

Many of us have taken Budesonide. A small percentage have had side effects and had to stop, but many of us have had much success. I am one of them! I was dx with MC about a year ago. I started taking 9mg. a day and I felt better almost right away! You are right in a way about stopping it and then have the symptoms come back BUT this drug can help you get to remission if you change your diet at the same time and stay on it long enough to allow healing. Most doctors are still clueless about this disease. I was on 9mg for one month. I slowly stepped down to 6mg and stayed there for about two months. Then when I started feeling a little constipated, I slowly stepped down to 3 mg. and stayed there another 2 months until I was pretty sure I could get off of it completely. The great thing about this drug is that it speeds up the healing process and you can live your life again. The bad part is that it gives you a false sense of security and it's easy to ignore the diet. The thing is, if you don't change your diet, you will most likely relapse.

Tex has written a book on MC that you might want to read. You can get it on Amazon. There is a lab called ENTEROLAB that you can send a stool sample to and find out what you shouldn't be eating. It's kind of expensive, but if you can afford it, it will save you a lot of trial and error. Check out their web site.

Please feel free to ask anything. I know this is a lot to take in, but at some point, we all have to face the fact that these are the cards we were dealt and do what we need to to get our life back. good luck and keep us posted

Leah

Deb · Post by **Deb** » Sun Jan 06, 2013 2:09 pm

Leah has given you excellent advice, Tiffany. Gluten-free eating isn't as scary as it sounds but it does require more (most) meal preparation at home.
There are decent GF pastas and breads you can buy and. it's been a couple years for me, but my husband is now eating most of the same foods that I do and feeling better for it. If he wants something else he gets it. It's probably healthier for all of us to avoid gluten and you may be averting future problems for your son as sensitivites can be hereditary. Some of us have had quick results when giving up gluten and some have taken longer and discovered further sensitivities. You are on the right path though and you will feel better again. Deb

rivendweller · Post by **rivendweller** » Sun Jan 06, 2013 2:21 pm

Hi, Tiffany:

Your doctor probably was not clear with his Rx instructions (mine wasn't), but budesonide should be taken all at once first thing in the morning, not spread out throughout the day. Also, I have been told that if you decide to take the medication after all, it will take a bit longer for it to be effective. I'm sure Tex will chime in here at some point, but budesonide does not work like other steroids; it is not as severe in its side effects. It works only in the gut.

I had the exact same reaction as you when I was first prescribed budesonide. I refused to take it. But I came around after two years of suffering and finally having an incident of incontinence (that is absolutely the worst). I realized I had to get my gut cured, then quit eating the foods to which I was sensitive. I ordered the Enterolab tests, discovered I am sensitive not only to gluten, but also to dairy, eggs, beef and tuna. What a surprise!

Anyway, on January 1 (you can see my post on the main message board) I started a new strategy to try to go into remission. I am determined to succeed because I need for my life to change back to something resembling Norman.

Good luck to you, and welcome to the Board!

Margaret

Post by **tex** » Sun Jan 06, 2013 3:17 pm

Hi Tiffany,

Welcome to the board. You've already received some great advice, so I won't repeat that again.

Regarding a decision about whether or not to use Entocort EC, Margaret is correct — Entocort is not activated until it reaches the lower third of the small intestine and the colon, so research shows that the maximum amount of the corticosteroid that can normally be absorbed into the bloodstream is only about 18 or 19 %. That greatly reduces the risk of side effects that are so common with corticosteroids. Sensitivity to drugs is an individual issues, but generally speaking, experience shows that Entocort will not significantly suppress most people's immune system until it has been used for a year or more, and even then, it does not have anywhere near the potency of the true immune system suppressants, such as Imuran, methotrexate, or the anti-TNF drugs.

Diet changes are the only way to heal the gut and prevent new inflammation from developing, but it takes a while for the gut to heal. Some of us reach remission in a few weeks or so, but for many of us, it takes 6 months to a year or more for enough healing to take place for the symptoms to stop. Not everyone can use Entocort, because a certain percentage of people will show an adverse reaction to it, but if you are like most of us, using Entocort (budesonide) will make your life much easier while your diet changes are helping your gut to heal. Any corticosteroid will slow down the healing process slightly, but the tradeoff is that you will have your life back while you are in the process of healing.

I'm not normally a big fan of taking a drug, unless it is absolutely necessary, but since you have a young son, that imposes other obligations on you that deserve special consideration. Unless you are one of the few who reach remission very quickly after adopting the GF diet, taking care of your young son (and your boyfriend) would be much easier if you are able to take Entocort, because it will allow you to feel almost normal, while you are healing. Short-term use of Entocort does not normally impose any significant health risks, and the risk of severe side effects is very low. With long term use (over a year), the risk increases, but some people are able to use Entocort indefinitely without any major problems. After using it a while, most people are able to lower the dosage, and that also significantly reduces the risks of any side effects.

The bottom line is, the right diet changes will allow your gut to heal, and should prevent any future inflammation. The right diet changes will allow you to get your life back. Drugs can suppress the existing inflammation, but they cannot prevent future inflammation from developing (unless the drugs are taken indefinitely). Doing them together, allows the best of both worlds, and then after your intestines have had time to heal, you can wean off the drugs and maintain your health by diet alone.

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

Tex

Doug · Post by **Doug** » Sun Jan 06, 2013 6:06 pm

Hello Tiffany

Like you I was recent diagnosed with MC, I just started the GF diet today, although i am taking Soy which concerns me, but it has to better than regular milk. Good luck with your diet, for me i will try to find as many substitute foods as I can, its the only way I will survive.

Doug

Post by **tex** » Sun Jan 06, 2013 8:16 pm

Doug,

Have you tried Silk brand Almond Milk? It's good stuff, and it's dairy and soy free. It's my first choice. I believe that the Diamond brand Almond Milk is also soy-free now. A few years ago it contained soy, but soy is no longer on the label. Hemp Milk and coconut milk can also be used in place of cow's milk, but they have a more distinctive flavor. I like the flavor of Hemp Milk better than cow's milk, but it causes a little bloating for me, so I switched to Almond Milk.

Tex

Christine. · Post by **Christine.** » Sun Jan 06, 2013 9:43 pm

I like almond mik with cinnamon rice chex....maybe better than regular milk. With a little research you will find lots of good substitutes. I buy Earth Balance organic organic coconut spread in place of butter (no weird aftertaste) but I also melt down a pound of butter every once-in-awhile and strain off the foamy white stuff ( the casein protein) leaving the pure drawn butter or ghee. I even take little containers of "butter" to restaurants for my baked potato. I also make my own soy(less) sauce that can be adapted to teriyaki sauce or even au jus.

Many of Brianna's salad dressings are soy free and are very good. I can tolerate a bit of egg if it is in baked goods or some mayonnaise. Morning glory muffins are heavenly. (See Dee's kitchen) and Hellmans or Best Foods make a canola mayonnaise. Trader Joes sells almond meal that can be used to coat chicken or can generally be used as a flour substitute. If you tolerate corn, cornstarch is a great thickener. King Arthur makes a decent Flour substitute but check the ingredients because there are some that could cause problems.

If you like Mexican food try the chicken or beef on a corn tortilla with onions and cilantro. Add salsa if you can tolerate it. Most mustards, catchups and salsas are gluten and soy free. Lee and Perrins Worchestershire is soy free.

I guess I could keep going. I've learned a lot about eating g/f and s,e and d free as well this past year. Best of luck to you, Doug and Tiffany.
Christine

Leah · Post by **Leah** » Sun Jan 06, 2013 11:43 pm

I second the almond milk suggestion. My husband even prefers it now with his cereal. I also eat cinnamon chex or honey nut chex. I generally mix it with plain corn chex so it's less sweet and more crunchy. Believe it or not, most of my breakfasts are two pieces of bacon and an egg. What a carnivore I've become!

I can do Mexican now ( no cheese), but beware, tomatoes and raw onion at the beginning can be trouble.

Leah

Zizzle · Post by **Zizzle** » Mon Jan 07, 2013 12:11 am

Hi Tiffany!
Just wanted to add that I am a fan of probiotics (when I remember to take them

), and I do think they ultimately help, but there are many brands and strains that we may react to. Most of us avoid ones made with dairy (which is most of them), and many have had success tolerating Culturelle. I once took a multi-strain probiotic recommended by Dr. Mercola, and I swear I thought I was going to die. I suffered through 5 days of horrible, watery, fast-transit (green) D before accepting that I was reacting violently to the probiotic. My theory is it contained a strain I already have which my immune system is not a fan of. Which probiotic are you taking? You may want to take a break to see if it makes a difference...

tlras · Post by **tlras** » Mon Jan 07, 2013 1:41 pm

I'm another one who loves my Silk Almond milk! At first I didn't care for it, but love it now. I stay away from Almond Breeze because it contains carrageenan.

Terri

Doug · Post by **Doug** » Mon Jan 07, 2013 6:32 pm

Yes I tried Almond Milk, and preferred the taste of silks soy milk, so I went with the soy. I thought that avoiding lactose I was doing the right thing, but never even imagined that I could have trouble with Soy as well. I know that some foods are a problem for me, it’s finding out which ones is going to be the trick. I have decided to order the tests from Enterolab (A and C), although pretty costly, I don’t think I have any real options, my GI doctor has been little to no help.

tlras · Post by **tlras** » Mon Jan 07, 2013 7:30 pm

I'm just like you Doug. I never would have imagined (till I joined this board) that soy could ever be a problem. And it isn't for some of us. I seem to do okay with a little so far.

You are smart to go ahead with Enterolabs. I have put it off for months as it's so costly, but may have to give in and do it.

And I used to think soy was good for us too! It's so sad that what we thought was so good for us (wheat and soy) turns out to be so bad. Even if I don't react to soy, it's not a food I'd want to eat a lot of on a daily basis.

Yes, it's sad about our GI doctors. I think I have the worst one ever. Let us know your results!

Terri

JessesMom · Post by **JessesMom** » Sat Jan 19, 2013 12:25 am

Thank you everybody for all the responses. Sorry it took so long to respond, the laptop has been messing up lately.. But I am so glad to have found this board - I don't feel so alone with my symptoms or thoughts now. I also have a friend who was just diagnosed w basic IBS due to them not being able to find an exact reason for her symptoms, so its nice to have her to talk to about all the stomach/D problems and it doesn't gross her out lol.
I felt so much better that everyone explained their experiences with the Budesonide. I took your guys advice and started taking it and have had no side effects what so ever. I also have continued with my GF diet and that is going well also. I was very happy to find a Gluten free cookie that are just like Oreos (I have a very big sweet tooth). We always have GF dinners and I have been taking tuna and white rice to work for lunch. I will have to try the Silk brand of 'milk' , I haven't cut dairy out of diet yet but I do avoid it overall if I can, I bought the Chex and would like to have it for breakfast with some 'milk' too.
My plan is to continue with the Budesonide and slowly taper off that while continuing the GF diet and will hopefully be like most of you and be able to control my symptoms with diet alone. I'm hoping and praying that happens so I can get my life back and be a good girlfriend and mother.

Leah · Post by **Leah** » Sat Jan 19, 2013 2:43 pm

jessesMom, have you done the Enterolab's tests?
You said that you don't have any side effects with the Budesonide, but are you feeling any better?
Be careful with the GF processed products on the market. They gave a lot of ingredients in them- some of which can cause D ( like xantham gum). I didn't tread into that territory until six months in and I was off meds. Just a side note.
Keep us posted.
Leah