Diagnosed May 2010 and glad I finally found yall!!!!

Ellie10 · Post by **Ellie10** » Tue Oct 18, 2011 6:57 pm

My Story:

I have always had diarrhea off and on for years. It would just hit suddenly and come out of no where and disappear just as quickly. No pain, just diarrhea. Then 3 years ago, I was driving home from a friends down a country road about an hour from home and the diarrhea hits along with this god awful pain in my stomach and back. It was all I could do to get home. I was flying from one gas station to another and cussing everyone on the road. The first "pit stop" was 45min...the next 30....by the time I got home, I went flying into the house, up the stairs, and into the bathroom. That has been my life for the past year.

First went to the doctor in October 2009 once my insurance from my new job kicked in. The diarrhea was not the main thing. It was all of the pain in my lower back and stomach. Had a CT Scan to rule out a kidney stone since there was blood in my urine. Nothing at all.... I had a lot of pain with intercourse, so my primary sent me to the GYN and gave me Bentyl to help with the diarrhea. The GYN thought that it could be endometriosis since I had so much pain in the girly region and diarrhea can be a symptom. Laproscopic surgery in Jan 2010. Nothing...Went back to the primary and since the diarrhea had gotten so much worse she sent my to the GI. He listened to my story and said that I think its just IBS and no need for a colonoscopy, but go do these labs and we will go from there. After finding nothing wrong with my labs we decided on the colonoscopy May 25 2010 and sure enough....Mastocytic Entercolitis....HUH??? WHAT THE HECK IS THAT??? My GI and I found the trifecta of meds that have helped me tremendously...Apriso, Gastrocrom, and Hyscyomine.

I have a great GI that helped to explain it to me, but there is so little information out there. I have spent so many hours reading and researching and I am so glad that I finally found a site that is devoted to the little red headed stepchildren of UC! I have joined others, but in a way, I have always felt like I am an outsider on them. Thanks for starting this and getting info out there about forms of Microscopic and Masto Colitis.

Kari · Post by **Kari** » Tue Oct 18, 2011 7:43 pm

to the PP family Ellie. So glad you found us, as this is the best place on the internet for information on colitis. There is over 10 years worth of collective wisdom here through shared stories and research. So read lots and ask any question you wonder about, and I'm sure someone will pop up with an answer.

Your story is pretty typical of what people here have been through, so you will get lots of sympathy and information to help you along. Most of us have found that diet is the key to lasting symptom relief, which is something you'll rarely hear from a GI. Many use medication along with diet, but those who rely exclusively on meds, tend to go right back into full blown symptoms when the meds are discontinued.

I have had LC for over a decade, and only last year when I discovered the diet connection, did I start to get relief from the relentless D. Since then I have been treating my colitis with diet alone, and am well on my way to remission. I am not very familiar with ME, so am not sure if what works for MC also works for ME, but someone is sure to come along who has more knowledge about ME.

Glad to hear you have found something that works for you for now, and that you have an understanding GI. All the best to you on your road to recovery - looking forward to follow your progress through your posts here.

Love,
Kari

Post by **tex** » Tue Oct 18, 2011 8:01 pm

Hi Ellie,

Welcome to our internet family. You're right, of course - no one truly understands MC unless they actually have it. We're glad that you found us, but we wish that you didn't need to be here, of course.

Your GI doc must be way ahead of the rest, because ME can only be detected by using a special stain on the biopsy slides, and precious few gastroenterologists are even aware of it, let along knowledgeable enough to request that it be used by the pathologist when preparing the slides for analysis. Kudos to him.

As Kari pointed out, most of us use diet changes to control our symptoms, (with or without medications), because medications alone are usually not able to provide complete control of symptoms, for most of us.

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

Tex

draperygoddess · Post by **draperygoddess** » Tue Oct 18, 2011 8:34 pm

Ellie,

Ah, I knew from the title of your post that I had finally found another deep-south girl on this forum! I live in Hendersonville, TN. So glad you're here--the people on this forum are the experts on this stuff, and so patient and helpful. Hope you find answers and get back to "normal life" soon!

MBombardier · Post by **MBombardier** » Tue Oct 18, 2011 8:39 pm

Hi, Ellie! Welcome to the board!

My father lives in Kingsport, Blountville, actually, right by Warrior's Path State Park.

Lesley · Post by **Lesley** » Tue Oct 18, 2011 9:44 pm

Ellie,
I am also pretty new here, diagnosed about 3 months ago, and found my way here through research on MC, just as you did.
The people here know their stuff fortunately for us. If we found our way here we need their knowledge and expertise.
Tex, the host, is a veritable fount of information and support. There seems to be nothing about this conditions (and yours, I believe, is akin to MC) that he doesn't know and won't help with.
Everyone else here also know their stuff, and offer suggestions and so much warm understanding and support.

My doctors know far less than these people do. Without this forum I would be lost.

sarkin · Post by **sarkin** » Wed Oct 19, 2011 9:35 am

Welcome, Ellie. This forum is indeed the bright light in the darkness of MC - I know I would still be wandering down a lot of dead-end paths if were not for Tex and so many others here.

Hope you're feeling better fast, and please keep us posted. It's great that you have meds that are working to bring you relief. That's a good sign that your doctor knows a little something about mast-cells... you'll hear from other members with clear-cut, diagnosed mast-cell issues, but many of us suspect that this sort of reaction plays a role in our MC (me included). So we'll be learning from you, as well.

All my best,

Sara

Ellie10 · Post by **Ellie10** » Fri Oct 21, 2011 6:16 pm

Thanks so much everyone. I have joined several other boards, but when I found this one and started reading, it just felt like home....

Tex, My GI is wonderful and has helped me a lot with the research. He explained in real life terms and not DR speak :) I work in the medical field and see a lot of times when Dr's explain like they are talking to colleges and not real people. When you are first told about something it helps to have it broke down in easy terms, bc your not really listening. I am not 100% sure, but I think that he is ordering the stain when nothing can be visibly seen during the colonoscopy as a precaution. I saw that you had a list of great GI's and mine is Jeffrey Fenvyes at the Center for Digestive Wellness.

Cynthia & Marliss, Im a Virginia transplant, but my hometown is only 45 min from the boarder

so close enough. Im actually on the other side of Kingsport on the Allandale side. When we were looking to buy our house we looked at several out toward Bloutville in the Fall Creek area. Its so pretty out by the park, but I guess I will have to survive with the river and Allandale Mansion. lol.

Post by **tex** » Fri Oct 21, 2011 8:30 pm

Thanks for the info on your doctor. I've added him to both lists.

Tex

MBombardier · Post by **MBombardier** » Sat Oct 22, 2011 4:40 pm

Ellie, that's where my father lives--on Fall Creek Road! His property is called "Three Creeks" because there are (obviously) three creeks on it, one the main Fall Creek. There are a pair of persistent beavers that keep damming the creek on his land. He even laid a couple of good-sized drainpipes in it so that they could build above them and not flood his land and the neighbors', but they plug the pipes with mud and the man who does dad's yard work has to go down in the creek and unplug them every month or so.

When I go see him next year (hopefully he will still be there) maybe we can meet! I meet a long-time Facebook friend that I had never met face-to-face when i was there in July. Such fun!

Ellie10 · Post by **Ellie10** » Sat Oct 22, 2011 7:34 pm

Its such a small world! HAHAHA You never know when you find people with common links in life. Let me know when you will be coming this way and we can meet for lunch!

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 22, 2011 11:23 pm

Ellie
you have summed it up - this group is like home, it is a family, you can ask anything, share your highs and your lows, one persons success story can help alot of people when they are having tough days.

via the various discussions here, whether it be MC, Crohns or mis-diagnosed IBS, the one commonality across all IBD's, is that what works for one person may not work for another so hence my tag line, there is no right way or wrong way, there is your way.

it can take a bit to figure out what works for you (meds, diet, supplements, treatments etc) but the time and effort is worth it.

good luck with your MC Management journey
take care