Post Edited (Becktoria) : 10/26/2010 5:23:26 PM (GMT-6)
I have not been diagnosed with Crohn's but HAVE been diagnosed with lymphocytic colitis (which the doctor's cannot seem to get under control for me) and have upwards of 35 to 65 BMs per day on most days. Very rarely I have only 15 to 20 BMs per day. It is always the dreaded D!!! This disease also causes fecal incontinence and major leakage which is a major problem when you have loose watery stools. There just is no way to hold it back when it is coming!!! This has been going on for over 3 years now. I have had the disease for approximately 8 years but not this bad in the earlier years. It went undiagnosed until a few years ago because they did not do biopsies during colonoscopies previously so I ended up changing doctors and my new doctor did the biopsies and found my problem. I have tried every medication known to man it seems with no relief. I also have constant abdominal pain which never seems to subside along with other pain from RA and fibromyalgia among others. It is a miserable life ! Last year I had to have my gallbladder removed which only worsened the problem!! Had to seek disability this year as I am pretty much unable to leave my home except to go to the doctor's office. Was denied disability on the first attempt and then approved on appeal.
It is nice to meet you too. I too couldn’t believe that I was denied disability the first time. My doctor was furious but he said he was not at all surprised either. He referred me to an attorney that was very compassionate and she worked very quickly to get my appeal approved. I originally filed my first claim for disability on November 27, 2009 and was denied by the end of February, 2010. A week later I had my appointment with my GI doctor and he referred me to the attorney which I called the same day and she seen me a few days later. She handled everything for me and I didn’t have to focus on anything other than my doctor appointments. It was a huge stress reliever. My attorney and I emailed each other every month to keep each other informed on what was going on. I told her everything that was going on with the doctors and she told me what she was working on with my case. On August 16, 2010, she sent me an email telling me that my claim had been approved. I was so shocked that I just sat and cried for hours. I couldn’t believe that I had been denied to begin with. It made me feel as if they didn’t believe I was sick. I spend so many years trying to find out what was wrong with me, and having doctors tell me that I was fine and it was probably just IBS or something. I had started to believe it was all in my head. I was thrilled just to have a diagnosis even though there is no cure. Then to have them deny my claim so quickly, it was like a slap in the face. I just couldn’t understand it. I know that there are people out there milking the system and getting disability when they are fully capable of working but I am certainly NOT one of those people. I would not wish this disease on ANYONE…not even my WORST enemy!!! I even put off filing for disability hoping it would get better. The doctor tried to get me to file in July 2009 but I refused and tried to keep working. I told him that I could make WAY more money on the job than I could on disability!!! I had been working for the past 14 years as the firm bookkeeper at a large CPA firm and had a very good salary. However, it was a very stressful job and my doctor felt as if the stress was too much and was playing a negative role in my medical conditions. My job was 60 miles from home and I was unable to make the trip so I was even trying to work from home instead of filing for disability. But by the end of November, I came to realize that it just wasn’t going to work out and I gave in and filed the claim. I would give anything in the world to be able to get better and go back to work. It is really hard to adjust to living on a disability wage and even harder to just be at home all the time and not being a productive member of society. My husband’s job has cut his hours back and we are just barely getting by. It is really hard but we will manage. I cannot think of any job that I could possibly hold down at this point unless maybe it was a job testing toilets!!! LOL
As far as surgery goes, because this is a fairly rare disease there hasn’t been much research done. Surgery is not recommended at this time. My doctor said that he doesn’t even have literature in the office about the disease because it is so rare. Most people that have the disease do well on Entocort but as my luck would have it; the Entocort did not help me at all. I have been taking it for over a year now ($953 per month) and we have finally stopped it because of the long-term effects and to see if it was making any difference at all. Since I have stopped, there has been absolutely no change in my condition, so it was doing nothing for me at all. I have also been on multiple other medications which also did not help. My doctor has now started attending conferences concerning lymphocytic colitis and is discussing my case with other doctors all over the country to come up with other options to try. Surgery will be a last resort. On top of all that, I am newly diagnosed with seronegative rheumatoid arthritis and I am 4-weeks into Methotrexate and taking prednisone and Percocet for pain. My mother has severe RA and takes Methotrexate and Remicade.
My 29 year old daughter suffers from Crohn’s and is in remission and doing really good right now. So at least I have that to be thankful for. She was unable to work for three years before getting it under control, was put on too many medications for all her medical conditions (she has many also), which caused her platelets to drop to 4 and she almost died and was hospitalized for a month, but is now working and doing great. She has since switched doctors from the one that over medicated her to the same GI doctor that I see.
I am really sorry about posting such a long message but it really feels great to vent and get some of this off my chest. Thanks so much for listening.