When did you know somthing was wrong

mini · Post by **mini** » Sun Feb 10, 2008 10:58 am

I wonder when you guys first noticed something was wrong or you started to feel ill from what was later dx as MC, what time scale before the before the D started?

Although I accept the need to be positive and concetrate on getting into remission I think it would be helpful if we could pin point the time and remember what was happening in life at that time. Maybe who knows it would explain how we could possibly avoid future flares.

My gastric problems seem to start shortly after I suffered from shingles around 2000. The shingles had gone and it was a few days before I was leaving to spend some time in Canada I had a really bad attack of D and stomach pains. During my time in Canada I had occasional attacks of D, shortly after lost a great deal of weight and then nothing until 4 years ago.

Just as an update I saw my GP last Tuesday following GI appointment and now they want to do a liver and kidney function test. The GP feels I am still looking pretty ill and believes even after 3 months of treatment it is going to take a lot longer to get a sense of well being again. So sorry if I sound down a bit maybe a part of me thought that after the steriods I would be feeling reasonably well but, this does not seem to be happening.

barbaranoela · Post by **barbaranoela** » Sun Feb 10, 2008 11:49 am

Hi Mini-----
I never felt *ILL* but I began to wonder *what is going on* when one day I started running to the *potty* every 15 minutes--
And MINI--I do believe that I responded all my *happenings* in one of your other posts

Barbara :flyingdoveleft:

ErinD · Post by **ErinD** » Sun Feb 10, 2008 12:02 pm

i was diagnosed in 1990 with IBS-D. I would only have a problem if i ate certain foods or were in stressful situations. My D would be short lived and i would be better within an hour or two of the triggering episode. I would have these episodes maybe 2 times a year because i new what foods to avoid.

Last summer (07/07) i became very sick with chronic D, severe abdominal pain, weight loss, some fever and nausea. I was diagnosed many different things at that time, bladder infection, kidney stones, ovarian cysts, stress, stomach bug, all-in-your-head syndrome, etc...I was also tested for any disease under the sun with no signs of anything.

Finally in October, my PCP sent me to a GI specialist who did an upper and lower endoscopy. After the procedure she told me that everything looked good and it was just a bad case of IBS-D. She put me on Librax and Bentyl and told me to come back in two weeks. After no change and going back to see her she said that the biopsy results came back from my colonoscopy and showed inflammation and she diagnosed me with MC. She took me off the bentyl and put me on Asacol and told me to come back in a month. I felt about 50% better but not 100%. When i went back i told her how i was doing and she said 'well, its not MC as Asacol would fix it so its just bad IBS-D' and put me back on Bentyl. Of course i immediately felt worse so at this point i decided on a second opinion.

I went to a specialist at a well known hospital and he was positive it was not IBS and felt it was Crohns in the small intestine. He set me up to do the Pill Cam and put me back on the Asacol for the time being. Again, felt about 50% better being on Asacol. Had the pill cam and again 'nothing found' and its just IBS. He put me on Levsin. felt horrible on levsin and called him back after my two week trial. He thought [/i]maybe it was MC and put me on Entocort at 9MG per day and set me up with a follow up appointment (which is actually tomorrow).

I have been on Entocort for a month now. I feel about 80% better at this point but not 100%. I am still getting occasional D, abdominal pain and nausea so not sure what that tells me. I am still waiting to hear back from Enterolab (3 weeks will be this tuesday) so i am not sure what to think. I am nervous for my appointment tomorrow as i am sure it will be nothing but a disappointment again. At this point it has been 7 months of symptoms and over 20lbs of weight loss which i did not need (now people are thinking i have an eating disorder because i am so thin now).

Not sure if this helps, but it is my story so far and i know how frustrating it can be

annie oakley · Post by **annie oakley** » Sun Feb 10, 2008 1:18 pm

Hello I had some Idea when I was 20 that there was something wierd going on with my bowels. My mother was a nurse and informed me that nearly everyone in our family had Ibs or something related. It wasn't until I went to work in Arizona and got Valley fever, that never seemed to go away. A digestive specialist ordered me a colonoscopy and then we knew. It was MCC.
It was hard at first, but with the help of this site and the people here I would have gone Insane. I also experimented with some foods. Now I have been off meds for 3 yrs.
Love Oma

Pat · Post by **Pat** » Sun Feb 10, 2008 5:17 pm

Sept 11, 1999 the D hit me and never went away. Had had some gas, bloating, refux before. I was dx'd with IBS even though now I know the colonoscopy said MC. The doctor didn't know what to do so he just lied. Finally, he retired and I found a new dr. who dx'd MC with new colonoscopy and just reading the old one. Tried Entocort, cholestyramine, pepto, but to no avail. Another new dr. tried Neomycin and made me worse. Found to be fructose intolerant. Gas, bloating, muscle aches better. Enterolab testing - intolerant to gluten, casein, soy. No better on diet except BM odor is better and no reflux (I belive from casein). Finally on Pred now. 50% better.

Gloria · Post by **Gloria** » Tue Feb 12, 2008 9:00 pm

Here's my post about my MC beginnings:

http://www.perskyfarms.com/phpBB2/viewt ... ght=#43637

I've been on Entocort for 7 months, maintaining on 6 mg/day. I began a GF diet even before I got my Enterolab results. If I slip up on my diet at all, I have a reaction, so I try to be very careful. No gluten at any cost. It's not worth the price I pay.