RETURNING FRIEND OF THE FORUM

janet · Post by **janet** » Tue Sep 10, 2013 4:10 pm

HELLO ALL, REMEMBER ME, NO, AND WHY SHOULD YOU, I'M JANET (MARIE MY FIRST NAME) I WAS LAST IN TOUCH A FEW YEARS AGO.
SINCE THEN I HAVENT HAD ANY IMPROVEMENT TO MY MC, SOMETIMES IT HAS BEEN TERRIBLE AND SEEN ME IN HOSPITAL, BLEEDING FROM MY RECTUM, SO EMBARRISING, GOT OVER THAT, AND FROM THERE SOMETIMES, I AM RUSHING TO THE BATHROOM, ALMOST PANICKING, WELL PANICKING FOR SURE.
MY POOR HUSBAND HAS TO CHECK WHERE ALL THE TOILETS ARE, AND WHEN I GO OUR IN THE CAR WE HAVE A LARGE TUB, KITCHEN ROLL PAPER, BABY WIPES, YOU NAME IT, WE TRY AND COVER ALL EVENTUALLITIES.
IT DOES INTRUDE ON THE QUAITY OF LIFE, ANYHOW YOU ALL KNOW THIS, AS I HAVE BEEN FOLLOWING ON THE FORUMS, JUST NOT CONTRIBUTING.
I HAVE NOW BEEN ON ENTOCORT AND I'M INTO MY FORTH WEEK, I TAKE 3 IN THE MORNING, I WAS A BIT SAD AS I EXPECTED SUCH A HUGE IMPROVEMENT BUT I STILL HAVE THE OCCASIONAL FLAREUP'S. I WILL KEEP GOING THOUGH. I HAD A FEAR OF STEROIDS BUT ITS NOT SO BAD AS I FIRST THOUGHT.
ANYHOW FRIENDS IT IS GOOD TO ONCE AGAIN BE IN TOUCH, I WISH YOU ALL WELL, YOU WILL BE HEARING FROM ME.
I STILL LOVE LIVING HERE IN CANADA, ALTHOUGH I MUST SAY I DO SOMETIMES MISS CORK MY HOME IN IRELAND, I MISS THE WAY OF LIFE.

TALK TO YOU ALL SOON. KIND REGARDS
MARIE (JANET)

coryhub · Post by **coryhub** » Tue Sep 10, 2013 4:25 pm

Hi Janet,
Sorry to hear that your situation has not improved much in the last few years. Is this your first time on Entocort? If so, I hope it eventually gives you some relief. I know what you mean about always planning ahead to where the toilets are. Canada is a lovely country and you are lucky to have socialized health care. That is a real blessing when you hear what some of us in the USA have to pay out for the same prescription.
Thanks for checking in and keep in touch,
Cory

Joefnh · Post by **Joefnh** » Tue Sep 10, 2013 4:43 pm

Hello Janet and thank you for posting, it's certainly great to see you back. I am so sorry that your still suffering this much. While I do not know what you have tried in the past, I'll assume as you have been watching this board you know that many here find benefit not only who entocort after several weeks, but also avoiding gluten, soy and dairy in our diets has been beneficial to many here.

I will admit you mention bleeding problems, which are not typically noted with microscopic colitis, but are often associated with ulcerative colitis or Crohn's disease. Janet have your doctors performed a recent colonoscopy since the bleeding was reported? I suffer with Crohns and have had some instances with bleeding (dark stool) as my bleeding is in the small intestine. When the bleeding is in the colon (large intestine) it looks more red in color, typically the red colored blood can be a sign of hemorrhoids, diverticulitis (rarely) or ulcerative colitis. My apologies if you have already discussed these possibilities and tests, but I thought it important to bring this up.

Thanks for checking in Janet, hopefully you can start felling better soon.

Joe

janet · Post by **janet** » Tue Sep 10, 2013 4:51 pm

THANKYOU OR YOU SUPPORT. THE BLEEDING LASTED A WEEK IN HOSPITAL.
I HAD A COLONOSCOPY, MUST HAVE BEEN OKAY, AS I DIDNT HEAR A WORD.
THE GASTROENTEROLOGIST I AM NOW WITH, INFORMS ME HE WILL ARRANGE FOR ANOTHER COLONOSCOPY, JUST TO MAKE SURE THERE IS NOTHING
UNTOWARD THERE. I HAVE TO SEE HIM ON THE 26TH OF THIS MONTH.
I HAVE NEVER TRIED GOING GLUTEN FREE, WILL LOOK INTO THIS, THANKYOU.

MARIE

Joefnh · Post by **Joefnh** » Tue Sep 10, 2013 4:56 pm

Janet to date have you been diagnosed with any GI issues?

lorimoose · Post by **lorimoose** » Tue Sep 10, 2013 4:57 pm

Hi Janet,

I am fairly new here, and I am on entocort too. I have been taking it for 5 weeks. I was so sensitive to it, that I am only taking one pill each morning. After a week, it starting kicking in for me, along with diet.

Folks here encouraged me to be very strict with my diet, and I have followed their advice to the letter. No gluten, dairy, soy or eggs, only cooked veggies, and no fruit....but I have started to add back small amounts of melon, with out a problem.

I didn't realize that I couldn't be "mostly gluten free", until Leah pointed that out to me. I think that note opened my eyes, and it is working for me. I hope it continues when it comes time to wean off the entocort.

How is your diet? Is there anything you could adjust to get some relief.....you have struggled for so long. I hope you see more and more improvement on the meds.

Warmly,
Lori

Leah · Post by **Leah** » Tue Sep 10, 2013 8:28 pm

Hi janet. Since Lori just mentioned me ( glad i could help Lori), I thought I would chime in.

The Entocort can work wonders, but I feel I must warn you that if you don't change your diet, when you wean off the drug, you will most likely relapse..... AND it seems that each time one tries to go back on Entocort, it is less effective each time!

Most of us must be gluten free to get better and many many of us also have developed other food intolerances. Dairy, soy, and Eggs to name the top ones. if you continue to eat the foods that you are building antibodies to, you will not get better. Some of us also can't have certain meats, and others can't eat nuts. Then there are the foods that just don't work when you still have inflammation like raw fruits and veggies, sugar, beans and legumes.....etc. This is a complicated disease to figure out, but if you ever want to live a "normal" life again, you must examine what you are eating.

If you haven't bought Tex's book already, you might want to. Just click on the picture of it in the upper right hand corner. it will take you to Amazon.

Welcome back
leah

DebE13 · Post by **DebE13** » Tue Sep 10, 2013 8:55 pm

Sorry to hear you are having problems. I would start immediately with your diet. Please know that it can take time so don't be discouraged. It's also nice to have someone mention that at first, it can be very difficult for some people. It was for me but gets easier with time. I would have never believed I would say that but it does. Hang in there.

I'm reading up on another forum about people who have to go on a low iodine diet for a few weeks in order to take radioactive iodine. Wow, lots of complaints there. It all depends on perspective- that is the least of my concerns and will be a piece of GF, SF, EF, and DF cake! Oh, and let me know I you find some because I really like cake. But, it has to taste like cake.

janet · Post by **janet** » Tue Sep 10, 2013 9:49 pm

THANKYOU ALL FOR YOUR REPLIES, I FEEL BETTER ALEADY KNOWING THAT I HAVE SUPPORT AND A LOT OF HELPFUL INFO. I HAVENT BEEN TESTED FOR ANY GI.
I AM GOING TO TAKE ADVISE FROM YOU HERE AND START TO GO GLUTEN FREE, IT CANT DO ME ANY HARM.
ALSO I PARTICULARY NOTICE THAT IF I EAT A MEAL AND FEEL FULL, I PAY THE PRICE LATER.
SO AM CUTTING BACK ON THE AMOUNTS I EAT, I DONT OVEREAT, IT SEEMS I CANT EAT ADULT SIZE MEALS.
I JUST LOVE DOUGHNUT AND CANT RESIST ONE IN TIM HORTONS, BUT JUST ONE DONT SEEM TO UPSET ME.
ALSO AND THIS IS FUNNY IF I AM STUCK SOMEWHERE WITH NO TOILET AT HAND, THEN YES... I WANT TO GO IN A REAL HURRY.

I AM AN UPBEAT LADY AND A COCK
EYED SUPREEME OPTOMIST.

GOOD NIGHT AND THANKS A MILLION
MARIE

Leah · Post by **Leah** » Wed Sep 11, 2013 9:47 am

Hi marie. You sound like a fun lady.
Just so you know, there is no use going "somewhat" gluten free. Gluten is very unique in that the reaction can be very delayed. If you are producing antibodies to gluten ( which in turn causes inflammation and problems), then the smallest amount will continue to cause issues. they build up in your system. Gluten is also unique in that it's half life antibodies can last up to 4 months in your body! .... so those donuts ???????

Dairy, eggs, soy and many other foods that give people problems usually have a faster reaction and a faster recovery time after you have D from them.

So, if your starting point is going gluten free, then you must go COMPLETELY GF for it to work. Check all labels

good luck
Leah