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mini
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New to the site and so glad to have found it!

Post by mini »

Hi

I was dx with CC in November 2007 however, the hospital it seems had dx this condition 2 years ago but, because of an error did not tell me. I only found out what was wrong with me by seeing a new GI after the symptoms got worst and went into a really bad flare.

No need my friends to say what I was feeling like or experiencing from this disease as I am sure you all know too well about the running to the loo, stomach pains and sheer exhaustion that goes along with it. I was on preds for 6 weeks although it took down the inflammation the side effects were just too bad hence now I am on entocort for 3 months until I see the GI again.

Oh to have found an active site for MC is like a miracle and I feel so happy to be able to read other peoples stories and exchange information about this condition. Like most one thing I seem to understand already is how the doctors really know very little about the condition. When I asked my GI if diet could help was told no, it makes no difference to CC.

I look forward to being a member of this forum and wish to say hello to everyone. :smile:
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MaggieRedwings
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Post by MaggieRedwings »

Welcome Mini,

So happy you have found our family but so sorry for the reasons and condition that brings you here. Take the time to browse around and I am sure you will find a load of information and it will take time to get through a lot of it. Love your loo expression since that is always my terminology.

Where in England are you located? My son and his family live in Northwest England.

My feelings are that diet does play a definite role for most of us and I would think in the UK since celiac disease is so high, the doc might be a little more open about using diet. Great to visit the UK and find gluten free on the menu almost everywhere in restaurants.

Visit often and again, WELCOME.

Maggie
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tex
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Post by tex »

Hi Mini,

and welcome to the board. Wow! That's incredible that they "forgot" to tell you that you had CC. I suppose that shows how much importance they ascribe to this disease.

Is the Entocort helping? Many members have found it to be very beneficial.

Yes, many of us have had the same experience with our doctors, (discovering that many of them aren't very knowledgeable about MC). We ask questions, and when they answer, we politely nod, and then we come here to compare notes and figure out what's really going on. It seems that you have to actually have MC, in order to understand it. There are a few GI docs around who actually understand MC, but they are still few and far between. Many of them still have a long way to go.

It always puzzles me that the standard answer from most GI docs about diet, is that it doesn't help. That's a very inappropriate statement, because they have absolutely no information to base that on. Diet restrictions have never actually been "properly" researched in relation to controlling IBDs, (Inflammatory Bowel Diseases), therefore, they have no logical reason to make that statement. They make the statement, of course, simply because they are trained to prescribe drugs, and they have no monetary interest in diet recommendations.

I hope you can find the information and support that you need, and anytime you have any questions, please don't hesitate to ask. If we don't know the answers, we'll try to find them.

Again, welcome aboard,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
ErinD
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Post by ErinD »

Hi & Welcome!
I am somewhat new as well and i have been on Entocort for 3 weeks now. For the most part it has helped greatly, but there have a been a few times it seemed to 'fall behind'. This board has been so great and supportive, it is definitely a wealth of knowledge on this disease. Like you said, the doctors don't seem to know much about it which is unfortunate, but i have found so much useful information on this site alone, it is awesome!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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barbaranoela
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Post by barbaranoela »

Greetings Mini----
Happy U found us--(as we all say NOT HAPPY about your issues)-but as U check around U will certainly get well informed from A to Z about what people have been thru--how they handled things--and @ times HOW u kinda have to TELL your GI *what about this --that and the other thing--
And I always say grab a :coffee2: and hang around and read all U can--- :smile:

Our family is growing by leaps and bounds--- :thumbsup:

Will be looking for U again--

luve Barbara MCC-er :bigbighug:
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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mini
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Post by mini »

Aww thank you for your welcome so far, that is so nice.

To reply to a few questions

Hi Maggie

I live in the county of Devon in the South West region of England and I am a vegatarian and love birds also......... I have a passon for parrots and just after Christmas got a new baby parrot a green cheeked conrue which I have name Holly. She is very cute and so loves her kisses and cuddles at the moment she is just finding out how enjoyable fresh fruit is. It is so wonderfully to see her smile as she tucks in.

Hi ErinD

Been taking the Entocort for about 10 days although it is not as fast acting as the preds much easy to take I love the lack of side effects! Also it seems to have helped a great deal in reducing the inflammation I had in my ankles which were really quite bad and very painful to walk on.

Hi Tex

Thank you for your welcome also, I have posted a new thread with the problems I had over the DX.
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JJ
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Post by JJ »

Hi Mini! :wave:

Glad you found us! This is a great place for info and support. I have been on Entocort for a year or two....it has controlled my symptoms very well. I am currently taking 2 caps/day, but at one time was down to one pill every other day. I have found that stress impacts my condition...many have found relief with diet and/or other meds.

Take care!

Jill (JJ)
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Post by Mars »

:welcome: Mini!

I'm glad you found our active MC board! Isn't it great to find new ideas and answers to your problems!

We have a great group here - we've all become an extended family!

Please ask anything here - we've heard it all and are not easily grossed out! :grin:

Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Post by annie oakley »

:welcome: to our family!!!!!!! I was Diagnosed in 2001 and have been off meds for 3 years with the help of Diet and My family here. Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
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sunny
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HI THERE!!

Post by sunny »

I'm fairly new to the site too...Dx'ed qbout 2 weeks ago and on Entocort for 2 weeks...which has been like a miracle....like turning off the faucet it worked so fast!!
Welcome to this place!! I have just been in awe at the quick responses from folks and their welcoming, open hearts. There is much to learn from other's experiences, so if you spend some time reading the different boards and even some of the posts from a number of years ago you will learn a lot ....and fast!!
Glad you found us!! :grin:
Sunny
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MaggieRedwings
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Post by MaggieRedwings »

Morning Mini,

So loved your cuddles expression and just gave phone cuddles to my grandsons this morning when we spoke. They were expecting an inch of snow today and the boys were so exicited - they are 1 1/2 and 3.

Take Care, Maggie
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Pat
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Post by Pat »

Mini,

Welcome! I, too, wasn't told about the MC, it was 7 years for me. But that is in the past and am now on Pred. Starting to see results. Glad you have found this site and are getting some help from your doctor. This is a great group of people!!! Take care.

Pat
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