Newly diagnosed: where am I?

[sunny]

Well, folks, I still can't believe you all are out there and I didn't know it till yesterday. I feel like Alice falling down the rabbit hole!!! And suddenly I found this group! Wahoo! I have read thru a lot of postings and will continue as this is now a new hobbie for me: reading about MC on this fabulous site. I am a 68 year old Gramma with 13 grands. Had some Thai food about Dec. 6th and was hit with a viloent D that would not quit : days became weeks and then became almost 2months. Lost 15 pounds in a week....could not get in to see my Internist...went to Urgent Care and then the ER 5 days later. Cardiologist called my Doc to please see me...( I have stage 3 heart failure)....no room in the schedule as it was Christmas now and she was swamped. Finally got in and after a very unpleasant exchange when she said I should probably find a new Doc. But she did make a referral to a GI specialist that could see me immediately.
I had a visit with her last Wenesday; she looked to be about 14. ..cute in her black tights and red plaid pleated skirt....just licensed in Oregon this past summer. I was a tad bit nervous and apprehensive. Since I had not eaten that morning, she scheduled a colonoscopy for Friday (she worked a miracle there as they are sceduling into May) and said she suspected I had a microscopic problem which would not show up to the naked eye and that she planned on doing many biopsies. Drank the foul stuff to be prepared for the big C and nearly died ( at least it seemed like it at the time!) The tests showed no visible damage. She called yesterday and explained that I had LC and wanted me on Entocort. WHEW!! that was fast! And THAT'S why I feel like I fell down some kind of hole and suddenly find myself here!!! SO....began my research and have learned a lot about MC and specifivally LC. I took the first dose of 3mg X3 of Entocort at noon today (my pharmacy didn't have in stock and had to send for some)..... I am so glad to find this iste and to see that my little Chinese Doc seems to know her stuff. Will post more and tell you my life story and long time quest for "TROPHIES" in the days ahead. Sorry this is so long, but I am anxious to "join in" with folks who KNOW what I have been going through. I just cried when I read all the info...all the signs have been there for so long, but who knew? Sunny in cold Oregon[

[MaggieRedwings]

Sunny,

Well we have all been down that rabbit hole and at times it seems like you just can't find the way out. Glad to see you might have switched initial docs and a lot of us here know how to fire them. You new GI sounds like she is tuned in and you were very lucky to find her.

Isn't it nice to know you are not alone. I have been here since the beginning almost and that started with our old board. We have moved up in the world to this one and are a very lucky group to find each other and exchange information, ideas, recipes, pics, and just know someone is out there for us. We are a FAMILY and always welcome new relatives.

Keep browsing and I understand the heart problems. Mine are minor to yours but it is just something more to deal with.

Maggie

[ErinD]

Hi Sunny!
I am newly diagnosed and new to the board too. I was started on Entocort and currently am a week and a half into it. I have seen a big difference already. This board is great and has a wealth of information and everyone is SO nice!

[barbaranoela]

SUNNY -----and I will add to that rabbit hole too
Been there---almost got buried there---then after a new GI and finding our family here----I was able to climb up and out----stumble in here and there BUT the support here always brings U back up----

U surely have alotta stuff to carry but I know U will get megga info here-

Sorry to hear of your heart issues-----and your new GI sounds well informed----took me time to find the right GI-----

Sunny----sooooooooo happy U stumbled in---grab ya --set yaself down and help is on the way---


Barbara

[tex]

Hi Sunny,

Welcome to our on-line family. Wow! I believe you have probably won the competition for the "Best-GI-Doc-Right-Out-Of-The-Box" award. Most of us have had numerous disappointing experiences with GI docs who are far from being up to speed on MC. The fact that she suspected MC, and even mentioned it, before the exam, suggests that she probably knows more about it than 95% of the GI docs out there. In this case, being fresh out of school is probably a bonus, since CC was first described in 1976, and LC was first described in 1989, and both have always been considered to be rare diseases. Most practicing GI docs received their diploma before MC was even mentioned as a footnote in the textbooks used in medical school.

You're so right about the feelings one has when this disease first strikes. I remember thinking that what was taking over my life must be some new disease, and I was probably the only one in the world who had it. When I first stumbled across the old board, and realized that everyone there was going through the same experiences that I was, my first indelible impression was, "Wow! These people are just like me!". It was truly an epiphany for me, since by then I was well aware that no one really understands this disease, unless they actually have it.

We're all in agreement that the "prep" for a colonoscopy is by far the worst part of the exam. One of these days, someone's going to make a fortune by developing a "clean-out" solution that is actually tolerable.

I'm glad you found us, and I hope you can find the answers to all your questions here. Please feel free to ask anything - most of us learned early on that nothing can teach humility faster than a case of MC. LOL.

Again, welcome aboard.

Tex

[Peggy]

A'board Sunny.

Truer words have never been spoken "most of us learned early on that nothing can teach humility faster than a case of MC".

Feel free to ask anything, we're not shy (or queasy LOL).

Peggy
45 years young, dx'd with CC January 2003, currently taking 1-2 Asacol per day, have taken Entocort short-term with incredible results

[sunny]

WOW!! What a nice surprise to see Hellos from so many of you!! Thanx Maggie & Barbaranoela for your encouragement , and Tex & Peggy also. Sounds like my analogy of that rabbit hole made sense to you all. And Hi to you ErinD, another newbie on ENtocort....I feel so welcomed and just warm all over....(important in this cold rainy environment in Oregon!!)

Yesterday, I had a huge pain in the tummy...knife being twisted....about 3 hours after first dose of Entocort....would it react so late? It lasted 20 minutes and was relieved when I laid down....

I also have waves of nausea frequently and every night in early am hours around 2 or 3....starting to think this is related to the LC?

I am afraid to hope that the Entocort is working so quickly....today have had "wannabees" (my term for a Norman imposter!!) but no big D!!
Again, thanx so much for your responses.
Sunny in cold Oregon

[barbaranoela]

sunny--luved the term *wannabees*----- ---but ya have to say---and stamp the feet
*wanna-BETTER-bees*


But NORMAN can be a deliberate tease and take his time just to aggravate the heck outta U!!!

Sometimes jumping up and down helps~~~~~~

Catch U around the *house*
Barbara

[starfire]

Sunny!!

Just thought I'd say that the nausea most certainly goes with LC. Actually, I had no pain but the the nausea and dry heaves were more than abundant - along with the big D, of course.

I am so glad your Dr. seems to be better than most.

Shirley

[hazel]

Hi Sunny,
I used to have waves of nausea after each episode of diarrhea. Never had the sharp tummy pain you described. I have CC though, not LC. Like you, I had a GI doc who was on top of things. He prescribed Asacol first and when that didn't help we switched to Entocort and that did the trick. Hope you have success with it too.
Glad you found us and

[jen051279]

Hi Sunny,
I persinally experiences the stomach pains as one of my symptoms. So bad at points that I couldn't sit up or stand up straight. I never took the Endocort though so i'm not sure it has to do with that. I took Asacol for 2 years. In fact all the Asacol did was to dull the side pains but I still had all the D. I eventually learned that I am gluten-sensitive and if I just stay away from gluten I have no D. I have been off my Asacol with no D since October. Though my doctor was never able to prove I was allergic to gluten he said if it worked then stick to it.

Good luck with your journey.

[tex]

Entocort is encapsulated so that it does not become activated until it reaches the ileum, (the lower third of the small intestine), and the colon. It normally takes two to four hours to completely empty the stomach, so theoretically, at least, the Entocort should not yet have been active three hours after you took it. Based on that, I'm guessing that the discomfort you felt may have just been a normal MC related event. That said, it's certainly not impossible that the activation may have begun, since three hours is kind of a borderline time frame, and your transit time may be faster, due to the MC.

Some of us experience nausea, and some don't. I am one who did. For some people, Entocort begins to work very quickly, while benefits are delayed for others.

I agree with Barbara - "wannabees" is a "neat" term for that situation. LOL.

Tex

[Mars]

Hi Sunny! I'm so glad you found us AND a new "with it" doctor! You've struck gold!

We've all been in various stages of what you describe, not much fun is it? We all seem to have a better sense of humor for it though!

I can remember a story I told at the beginning of my Colitis - it had to do with my husband FINALLY deciding to replace the floor in the bathroom. Well, he started (and of course had to run for materials in the midst of it) while I wasn't home. I came running into the house, needing to EXPLODE on the pot most urgently and guess what I found????? or DIDN'T find is more like it................... yep, NO I'm running out the door to both neighbors (who weren't home!!!!) and ended up stealing one of my husbands 5 gallon buckets (dumping the tools out of it) and a roll of toilet paper and taking a in my bedroom. (sigh) Needless to say............... the when he got home!!!!!

Gotta laugh, don't ya!

Again, Welcome to our group/family of very special people. Grab a chair and read the site to learn many options and ideas. It's great to have a new member!


Mars

[JJ]

Hi Sunny... Glad you found us!

Take care kiddo...Jill (JJ)