Thanks to everyone for having this forum!

JK · Post by JK » Sat Jan 22, 2011 10:18 am

I just wanted to post and thank everyone for their information on this forum. I've actually been reading bits and pieces of it for months now as every google search seems to have me wind up here at some point. If nothing else, it helps to know that others are working through the same issues as me.

I went to doctors for 5 years complaining about various symptoms. None of those doctors could ever find anything wrong with me and the basic outcome was always, "You're depressed, take these anti-depressants." It seemed that I could never get across the point that depressed people do NOT wake up ready to take on the world and accomplish things only to end up chained to the bathroom 10 minutes later.

The doctor that finally did the proper research (i.e. colonoscopy) figured out that it was MC. Now, after reading a lot of the forum, I can see that I'm not a traditional candidate for the disease, and the symptoms that affected me aren't what I see frequently described. I'm a 37 year old man, with onset of issues from when I turned 30. For me the diarrhea was always an issue, but it came and went (until the last year before I was diagnosed). Instead I had insane musculolar skeletal issues. My muscles are/were always totally knotted up and the joint pain was significant enough that I almost completely gave up my active lifestyle (I used to play soccer, go caving, hiking, camping, etc). Also the headaches were every three days and unbearable. The only thing that saved me was that my job affords me the ability to work from home.

I finally recieved my diagnosis in June of last year. My doctor prescribed 9mg of Entocort daily and that worked brilliantly for the first few months, then I started having issues again. At the 6 month mark I was 70% of the way back to before. My prescription was recently changed to Asacol HD and I'm about 2 weeks in but it apparently hasn't kicked in yet so I'm getting a definite reminder of what it used to be like. I am just hoping that this stuff holds out longer than the entocort did.

Thanks again to everyone!
Jody

grannyh · Post by **grannyh** » Sat Jan 22, 2011 10:31 am

Glad you found us.. welcome to the family!

Did you try removing gluten and/or any other foods from your diet while on entocort?

I was not able to tolerate asacol.. so used entocort and had removed gluten and other things from my diet. After 6 years I am in an unexpected and unexplanable remission..

Hope you continue to feel better..
grannyh

natythingycolbery · Post by **natythingycolbery** » Sat Jan 22, 2011 10:31 am

Hey Jody, Welcome!

I contracted my MC through anti-depressents, luckily, my GI knew about the link between MC and antidepressents so as soon as the diagnosis came back he demanded that I came off them ASAP.

Hope you get what you want from this site ect.

Katy x

Celie · Post by **Celie** » Sat Jan 22, 2011 1:12 pm

Hi JK,
You have come to the right place. Your excess symptoms sound a lot like mine. I have had a lot of debilitating muscle pain. This forum (and the Enterolab testing) helped me understand that those symptoms may be related to gluten. Entocort has made me feel better in every way. But, I am hoping that with dietary changes, I may be able to improve all my health issues. I went GF in October. Sleep has already improved dramatically.

Welcome and good luck. This is a great group of people!! (and knowledgeable, too).

Celie

Post by **tex** » Sat Jan 22, 2011 1:54 pm

Hi Jody,

Welcome aboard. Your symptoms sound pretty much like mine. My symptoms came and went, on roughly a 4 to 6-week cycle, at first, and then it shortened to about a 2-week cycle, and then one day the D started, and wouldn't stop. The arthritis-like pain in my knees got so bad that I had to use a cane, for walking. Several of my fingers started growing crooked and twisted, with swollen, inflammed joints. My neck was always stiff and sore, with a lot of lower back pain, also. All that went away after I modified my diet, and my gut had time to heal. Back then, I didn't even realize there were any drugs available to treat it, because my GI doc didn't have the foggiest idea what was wrong with me. He was so proud of himself when he finished with all the testing, and proclaimed that I didn't have cancer, after all.

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

Tex

TooManyHats · Post by **TooManyHats** » Sat Jan 22, 2011 2:11 pm

onset of issues from when I turned 30. For me the diarrhea was always an issue, but it came and went (until the last year before I was diagnosed).

Actually, this is exactly how's it's been for me. I've been dealing with this for years. It only got bad enough for me to go to a doctor one other time when I was asked if I drank a lot of soda. At that time I did so the doc told me to stop drinking it. I did and the D stopped. I've had significant symptoms pop up probably 5 times since I'm 30. This last time I just couldn't get it to stop on my own. That's when I had the colonoscopy and was finally diagnosed. I always thought I had IBS. I'm not big on doctors so I had just been trying to handle it on my own.

I too would like to say thank you for this site. Without it I'd be on medication and still not feeling well. It was only when I started eliminating the foods causing the inflammation that I started to feel better.

Welcome to the board and I hope you stick around! There is a lot of good information here and a lot of supportive people!

ant · Post by **ant** » Sun Jan 23, 2011 1:27 am

Dear Jody

This is indeed a life saving site. Keep reading and asking questions. Best wishes on your journey to remission, ant

Gabes-Apg · Post by **Gabes-Apg** » Sun Jan 23, 2011 2:03 am

Jody

Gday from Australia and ditto to everything ant said!

based on the learnings from the wonderful people in this family i am pretty sure that i was having mild flares and symptoms at least 3 years or more before chronic symptoms and then being diagnosed ( in my mid thirties)

take care

MaggieRedwings · Post by **MaggieRedwings** » Mon Jan 24, 2011 7:23 am

Welcome Jody,

So happy you found this site and there is a wealth of information here - more than any doctor or other source on the internet. Please look around and as Barbara would say "Sit down, grab a cuppa and ask away."

Maggie

Zizzle · Post by **Zizzle** » Mon Jan 24, 2011 2:10 pm

TooManyHats wrote:
onset of issues from when I turned 30. For me the diarrhea was always an issue, but it came and went (until the last year before I was diagnosed).
Actually, this is exactly how's it's been for me. I've been dealing with this for years...

This last time I just couldn't get it to stop on my own. That's when I had the colonoscopy and was finally diagnosed. I always thought I had IBS. I'm not big on doctors so I had just been trying to handle it on my own.

Me too. I've had symptoms since my late 20's that I self-diagnosed as IBS. I realize now it was post-infectious IBS after a bad bout of traveler's diarrhea. Turns out PI-IBS includes inflammation just like MC! So it seems my LC has been brewing for years and the leaky gut finally let in enough food proteins to cause all my intolerances and "autoimmune" activation. If only I'd recognized it back then...I might have avoided the Big D!

Welcome aboard.

Pat · Post by **Pat** » Mon Jan 24, 2011 8:07 pm

Jody,

When you finally give up wheat and whatever else you are intolerant of you will most likely be much better. Sorry to be so blunt but that is what worked for me. I still have some D but my muscle aches are gone! It took me a very long time to accept that wheat was not going to be part of my life. Pills didn't work for me..

BTW Welcome to the board!

Pat

Joefnh · Post by **Joefnh** » Mon Jan 24, 2011 8:37 pm

Hi Jody and welcome. Your story sounds a bit familiar. I am a 45 year old male and would say the symptoms started about 10 years ago with occasional unexplained bouts of D, but lots of aches and pains etc. It was not until last March when the D really kicked in that I was Dxd with CC and Crohns in April. Now that I am finally getting the treatment and following the correct diet, I am feeling the best I had for many years.

I hope you continue to do well

--Joe