I'm new and need help please

[cjbndtsn]

Welcome Star,
You've found the right place for answers. My life is a complete 180 degrees different from when I first found this forum. And good luck with the reading of all the adivice.............shoot I'm still trying to make sure I haven't missed something on here. I immediately took their advice of going Gluten Free and I have seen all kinds of things that have chgd for the better on my body. Arthretic knees from softball injuries......gone, tendonitis in my wrist......gone, migraine headaches....gone and best of all(with the help of Entocort) the big D is gone. I haven't yet had any issues with Soy or Dairy so knock on wood I'm good. Stick with these folks and take their advice...............its worth a try and they know more than anything I could get out of my GI.
Good Luck and feel better

[Christine.]

Canker sores show up every so often. They usually fade within a couple of days but they are aggravating. Usually I can guess why I get them....something I have eaten.
The only other consistent symptom I have when i am in a flare besides D is lower left abdominal and back ache. If I am perfect with my g/f, d/f, s/f, e/f diet I'm in great shape.

Welcome and good wishes for your path to recovery.
Christine

[Leah]

Welcome Star. Like everyone has said, diet is key. While you are on Entocort, this is the time to really work on your diet so you can heal. While you are in a flare and not feeling well, it is best to stay way from RAW fruits and veggies and fiber foods. It is just too hard on our inflamed guts. I was where you are 7 months ago and i am now off of Entocort and doing pretty well ( but I am GF, DF, and SF).

Ask away and Keep us posted on your progress. This all takes time and patience. Fell better soon
Leah

[Julie]

HI,

I have LC and my symptoms are: stomach pains, nausea, a very loud sound in my abdomen, diarhea, constipation, a kind of a burping sound that comes out of my throat (I have that all day long). I also have a reflux, but my GI doens't think that my LC causes that. I've had reflux for a very long time, even before I got sick to my abdomen.

I am now on Budenofalk (same as entocort) 3 X a day. I have also started a gluten-free diet. I also don't eat daire products. It helps most people.

I currently have a fungus in my mouth and most likely in my intestines. This is because of my medication. I don't support medication very well.

I hope that you will be feeling better soon. I wish you the best. GOOD LUCK AND DON'T GIVE UP. There are people here who aren't feeling sick anymore. It will get better for us.

Julie

[Fish2575]

I get cold sores with a flare too, and the tingling in my feet comes back as well as joint pain and hair loss. I think with a flare the immune system is just down and open for attack. Also, since we don't necessary absorb all of our nutrients well we are deficient (or maybe that is just me with the celiac thing too.) Hang in there, I hope the entocort is helping. It can be a long uphill road, but at least we are heading up!

Susie

[WhirledPeas]

I've had CC for over 2 yrs and just diagnosed in June 2009, Right now I'm on Entocort 3 mg 2x per day before the entocort iwas very miserable it has help but I am still having bad flare ups. I've had chronic diarrehea, fever,fatigue, horride stomach pains, Joint pain, and bad canker sores. But now I have a new side affect of this disease, and was wondering if any one else does it's pink eye I can hardly stand it. Can anyone give me a full lists of side affects I would really appreciate it. I would like any and all information on this disease.

Hi, I'm not sure if you're still reading this site, but figured I'd post in case it helps you or someone else. Definitely need to see a good eye doctor (get a recommendation). It could be just run of the mill infectious "pink eye" or it could be a few other things including "allergic conjunctivitis" which is different than regular conjunctivitis. I was diagnosed with that quite a number of years ago. Sometime in the last ten years since my GI issues started. It can be a chronic problem and come and go with long periods of not having it. Thankfully I haven't had it in a year or so. If I remember correctly it was deemed with a cause unknown with fair haired and eyed people getting it more often. Do you also have chronic dry eye? I do. I use preservative-free moisture drops in individual vials which helps a bit.

I hope this finds you well and managing better.

[Leah]

Welcome Star!
Another great source of info is Tex's Book. Look in the upper right hand corner of this page and click on it to order it.

I agree with everyone here. Diet is key ( even if your doctor says otherwise) Gluten is surely an issue. Probably dairy also. The key to getting better is to take out all potential inflammatory foods ( the main ones being gluten dairy soy and maybe eggs). Then , also remove "irritating" foods for now....like RAW fruits and veggies ( salad), acid foods ( tomato), beans and legumes, and maybe caffeine. These foods can be tested back in when you are no longeron drugs and flaring.

If you want to know for sure what you are intolerant to , there is a lab called Enterolab that you can send a stool sample to for testing. it makes the elimination process much easier. Check out their web site.

i am also surprised that your doc started you on 6mg instead of 9mg a day of budesonide. Most of us start at the higher dose and very slowly wean down as we get slightly constipated. I was on it for 6 months. The thing to know is that this drug will not cure you and you can't take it forever, so you must take care of the diet while you are on it, because relapse will likely occur when you stop taking it if you don't .

Good luck and ask anything
Leah

[Nakolope]

Hello all:

I've learned more from scouring this site than I have from medical articles. The issue of canker/mouth sores is making me wonder if my CC (just found that out today-although I don't know if it makes any difference from the MC that they told me last week) is the cause. I'm also wondering if my son may has MC. He has been plagued by bowel problems, including a nearly fatal ulcer, and canker sores for his entire young life.

I'm wondering when after modifying my diet the bloating and stomach pains may subside. I'm still getting migraines, and no energy. I realize that it will take time.

Thank you for all of the wonderful information and support. I told my Dr's office about this group. She said it as the only one she had heard of. Thanks for being here.

Nancy

[carolm]

Hi Nancy- welcome to our internet family. Sorry to hear your son is likely struggling with MC. It’s hard to know how soon you will see results from going gluten free and other diet changes. Ditching dairy gets results fairly quickly where as it takes a few months for inflammation to decrease from being gluten free (but it’s essential to healing). I saw quick results from going soy free too. Hopefully you’ll see your migraines lessen in either intensity or duration or frequency, the longer you are gluten free.

As far as your canker sores, I dont actually know if they are related to your CC— but I tend to think any mucus membrane can be inflamed while MC is active- like upper GI issues or maybe even sinuses. I think it’s possible. Hopefully someone else will weigh-in on the canker sore question.

Best wishes,
Carol

[tex]

Hi Nancy,

Thank you for the kind words. We always appreciate hearing that the information here has been helpful for someone.

While there can be other causes, such as iron deficiency anemia (which is sometimes associated with MC), low energy is sometimes a symptom of a chronic magnesium deficiency. MC itself requires a lot of our energy just to fight the inflammation, and fatigue is a very,very common complaint of MC patients. But migraines are also a classic symptom of a chronic magnesium deficiency, and magnesium can be used to treat migraines. Magnesium and vitamin D are co-dependent on each other and they are both essential for proper functioning of our immune systems. As you increase your vitamin D and magnesium levels, you will heal faster and your symptoms will fade away.

Carol is correct — canker sores and certain other types of mouth issues are often associated with MC. They were a frequent problem for me while I was still reacting, but changing my diet totally stopped them. I haven't ever had a recurrence since I reached remission. I believe they are associated with all IBDs.

Tex

[Erica P-G]

It has taken me a couple years of good VitD3 and Mag therapy in order to get my migraines to start behaving....I think it all depends on how our bodies respond to this new healing process...I guess mine took a while...but I'm so grateful I don't get those severe headaches like I used to and they were monthly and I could always count on them during my monthly cycle that I have not had for 3 years now, but I still got the headaches so I know it was the magnesium that was eventually helping me to rid them.

PS I agree that this site is a blessing too

[Nakolope]

Thank you Carol, Tex and Erika! I have never paid any attention to my diet, except to not eat. Now, it seems, that I will heal by paying strict attention to it. I've never been a cooker. This is going to be a most interesting journey.

Cheers!
Nancy