Newbie Question

[reindeer80]

Hello all!
I just was diagnosed with LC last week. To make a long story short, every since I was a teenager, the docs always said IBS. Three years ago at age 44, my colon perforated. Unfortunately, my GI doctor didn't take me seriously when I was sick then and had I waited one more day to go to the ER, I would have been dead. They told me it was worse perforation they had seen for a "first timer". After some serious antiobiotics, they said that I healed nicely and didn't see the need to do surgery. Bang, 10 months later, perforated again. I had a sigmoidectomy two years ago. I have tons of abdominal pain and left hip pain. I hurt before, during and after BMs. I just hurt all the time. In January, I started with D. Kept getting worse and worse. Several hair pulling calls to GI and PCP, finally convinced them I couldn't wait two months for them to fit me in for colonoscopy. I feared cancer.

So now, I have my LC diagnosis. Which is a relief. You begin to think you are just crazy and that nothing is wrong with you.

I asked my GI doctor yesterday if there could be any corrilation between LC and my two bouts of complicated diverticulitis. She said she wasn't aware of any hard facts out there, but thought there could be.

Does any of you have a history of both? Is LC gentically linked? My mother died from perforated bowels.

I am waiting to hear on my blood work for Celiacs. And I see my endrocrinologist on 4/1 to have him look at my thyroid and the 6-8 nodules that are growing in there to see if that may be the culprit.

I have so many questions, but am thankful that I found this site. Lots of great information in here.

Thanks for reading.

Joanie

[tex]

Joanie,

Welcome to our internet family. I'm sorry to hear that it took so long to get a diagnosis. IMO, there ought to be a law that a doctor couldn't diagnose a patient with IBS, unless he/she has exhausted all other possibilities, including taking biopsies of the colon, to check for MC. Most of them fail to take that last step.

I am one with a history of both. I have to say that your diverticulosis seems to be particularly bad, for such a relatively young age. I have a hunch that the combination of the two diseases, may lead to a synergistic deterioration of the colon, but I'm making that speculation, based on only two cases - yours and mine.

My MC symptoms began about 11 years ago, and a year or so passed before I tried to get medical help. They weren't any help, so it took me a couple more years to figure out what was wrong, on my own. I finally achieved remission, (by diet alone), 6 years ago, and a little over 4 years ago, part of my Sigmoid colon was removed, in an emergency operation, because of a blockage caused by a stenosis that was thought to be malignant, but turned out to be benign. I came out of that surgery with a colostomy, and the diagnosis was acute diverticulitis, (even though I felt no pain at the time, that I could attribute to diverticulitis).

On February 2nd, of this year, I awoke with massive bleeding, and to make a long story short, the end result was a colectomy, (IOW, they removed my entire colon), in order to save my life, so I came out of that surgery with an ileostomy. The diagnosis, again, was diverticular disease, with diverticulitis, (even though I had absolutely no pain), and serosal inflammation, adjacent to large vessel with clot.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex (Wayne)

[JLH]

Joanie. I like your name. I get called Joanie sometimes. In fact, my uncle used to call me Baby Joanie all the time even in adulthood.

I'm glad you found us so fast after your dx. This is the best forum in the world for MC information and support. I have LC, too.

Please read here starting with info for newbies. It is all overwhelming I'm sure but we are here to help.

Also, see www.enterolab.com

[Bifcus16]

Welcome Joanie,

I don't think we have 'proved' that LC is genetically linked, but we do find that many of us have 'celiac genes' and those tend to run in families.



Lyn

[Polly]

Hi Joanie and

I was diagnosed with LC about 10 years ago and have been in remission for years on diet alone. Apparently I do not have diverticular disease. You are lucky to be alive after suffering from two episodes of perforated colon. Whew. When hearing about the experiences of you and Tex, it seems that there may be a particular variant of MC that involves diverticulitis, is hereditary, and leads to significant destruction of the colon.

You most likely have food intolerances associated with your LC. The most common is gluten, followed by dairy, soy, etc. The type of gluten intolerance that we have will NOT show up on the classic celiac blood test. Many of us have had normal blood tests but are extremely sensitive to gluten. The only way to diagnose our gluten intolerance is by STOOL tests, and the only place these are available is through Dr. Fine's lab, Enterolab. Check out Dr. Fine's website at www.finerhealth.com. Members here as far away as Spain, Hong Kong, and the Netherlands have all sent stool samples to this lab in order to find out their food intolerances.

Has your doc put you on any meds? The most helpful initially is Entocort, which is a steroid with few systemic effects - 90% of it remains in the gut. Please be aware that most docs know nothing about the association of MC and diet, so most of the info you need to get well will be found right here in this website. You will need to design your own treatment plan. Folks here are extremely helpful, so please don't hesitate to ask any questions.

Love,

Polly

[ant]

Dear Joanie

from Hong Kong.. Sorting out food intolerances can be quite difficult becuase there are so many permutations of foods and time lapses. Best is to keep a food diary and start with a simple diet. Look for patterns. Then, as you have read, the Enterolab test is very useful to comfirm certain intoletances.

Good luck on your journey to remission. You will conquer the dreaded D. Love ant.

[reindeer80]

Hi all!

Thank you for your words of wisdom and encouragement.

Tex, I do consider myself very lucky to be here today. Actually, it was my boss who saved my life an caught me to the ER. The doctors here just kept telling take more antiobiotics. I had one call nurse pretty much treat me like a crack addict when I tried to get a hold of my PCP. Believe me, there is no denying the pain involved with a perforated colon. It is completely unexplainable. My problem....I have a high pain tolerance so I walked around far too long with poison in my body.

[reindeer80]

Hi all!

Thank you for your words of wisdom and encouragement. I have never had the need for support sites like this, but I am thankful for finding this one. Thanks to the group on Facebook who posted a link to you.

Tex, I will pray for your speedy recovery. Although my first perforation was so bad, I was lucky not to have to have emergency surgery. I also agree with you that IBS is too generally diagnosed. They told me YEARS ago, "oh its just IBS". I look back now and question so much. I can assure you the pain involved with a perforation is undeniable. It is horrific. My problem is I have a high pain tolerance, so I walked around longer than I should with that poison in me.

We have very limited choices for GI docs here in Springfield, IL. Basically two different groups. One GI nearly killed me and the practice won't let me switch to another in that office. Now I'm trying the other group. So far this GI seems ok. She has a bit of a language barrier, so I need to work harder at communicating with her. Her nurse isn't so great and lies about trying to call me, etc. I have a hard time with not getting returned calls. I don't care if my blood work is normal or not, call me and tell that. I will continue to fight that battle with her.

So far, no medicine. I started with D in January. It has been a couple of days now without it, but had dinner tonight and it has paid me a visit tonight. Sorry, I have to get use to the lingo here...can't remember what it's name is. I tend to go from one end of the spectrum to the other. When I am constipated, I want to have D and vice versa. I need help with a diet.

I look forward to diving more in to this web site. You guys are very welcoming and supportive. When I read others stories, I realize that this is just the beginning for me. I know this will probably worsen at times. I just pray my flare ups are far apart.

Peace,

Joanie

[Gabes-Apg]

Joanie

welcome to the family

i am still learning, i was diagnosed in Dec 09. the journey of diet, ingredients, meds, natural therapy, good days, bad days is huge! and unfortunately there are no shortcuts or quick fixes!!!

On here there is a wealth of experience, knowledge, sincere support, i am certain i would have gone totally bonkers without the information and chats via this site.

as you will see by some of the posts, you can ask anything, in all cases someone else has experienced the same thing.
As per something i wrote on Charlotte's (wonderwoman) post. There is no right way or wrong way, there is your way.
the right management regime will depend on budget, time, work and life demands.

i remember tex writing to me in my first week that i will get control of this demon. at the time i was very skeptical, (and was tired from weeks of chronic D) i can attest that with a few months of diligence (and learning how to be patient) i have come a long way....

hang in there!

take care

[JLH]

What Facebook site gave a link to the PP?

[Rosie]

Gabes wrote:

There is no right way or wrong way, there is your way.
the right management regime will depend on budget, time, work and life demands.

That's what's so great about this forum, a lot of respect for our differences. It's human nature to think that what works for you should work for everyone, but that's not true as we are all different. I suspect that many of us have encountered forums where there people can get very hostile if different opinions are put forth or if experiences are related that differ from the "party line". Tex sets the tone with a respectful attitude toward all the various ideas put forth. However, because he likes to deal with facts, he can be challenging of unsupported opinions and keeps us on track.

We all learn from each other and make use of all the input based on our unique circumstances.

Rosie

[harma]

it is the facebook group "lymphocytic colitis". I did some writing on there too and was a member of this group, but I left it, everything you write there, everybody can read (it is an open group). I found you there Joanie and have sent you an request to add me as a friend, so if you are surprised what or who is that?? that is me, harma from the potty people.

It is funny, I also found this group thanks to that facebook group, the link was not on there yet, but somebody mentioned there (in quite and old message) that she joined a internet support group for a while for MC people. I was like, WHAT THERE IS A SUPPORTGROUP FOR THIS DISEASE??? where where where and thanks to google it was easy to find.

Again welcome and hope you will find a lot of information and support in this group.

harma

[reindeer80]

Harma----I did wonder who you were! Thanks for clarifying. I will accept you now that I know.

[Stanz]

Hi Joanie,

So glad you found us, there is a wealth of information here on treatment options and doesn't seem to be any one way that is the answer. I was dx in Oct '09 with both LC and CC and I was able to stop 2 1/2 years of D with diet and OTC meds only, I also had been gluten free since August. I did the complete series of tests at Enterolab and tested positive for two gluten sensitive genes.

You need to know that nearly everyone tests negative for celiac/gluten sensitivity in the blood tests. Frankly, I have no idea why we waste our time on that. I was negative, my daughter was negative, clearly we are both gluten sensitive, so if your blood test comes back negative, it is not a test you should trust with your life.

Connie

[reindeer80]

Thanks, Connie. I'm guessing that my blood test came back negative since my doctor or her nurse haven't bothered to call me and tell me.