Hi, I’m Tim, a 43 year old UC’er. I was diagnosed 10 years ago. I have a 13 & 10 year old kids. I live in Pittsburgh PA. I am a financial advisor, 16 years now, and my income is all performance based so if I don’t add value to my clients than I have no income. Because of this, when I’m in a flair up, I am way off my game and my income suffers. I’m the sole breadwinner with a stay at home wife. The stress is high. Prior to diagnosis my business was thriving with a huge upside, post diagnosis has been depressing with 30% income swings year to year and extremely high medical costs.
Something Interesting About Me: I am very active and love to give back so I’m on several community and youth sports boards. I’m a huge people person and love to be on the go. I had a depressing childhood so I love to do family things and take my kids on trips, etc. Currently, UC is killing every aspect of my life as I just want to hide from the world.
Current Ulcerative Colitis Symptoms: My current symptoms are bleeding, cramping, very painful gas, no energy, losing weight, disinterested in anything that usually makes me happy.
I just started a nasty flair in December, which is out of the ordinary for me as I usually flair each year in spring until October/November. I am now feeling desperate and extremely frustrated.
I have taken Lialda for years and my physician just switched me to Sulfasalazine. I absolutely can’t stand any pharmaceuticals but I can’t control my UC with any diet that I have tried.
My physician also just started me on Uceris Foam which I started a few days ago. Please share with me anyone’s experiences with the foam! My major concern is that I can’t keep it in for more than a few hours and after paying around $1,300 for it my gas and bowel movements are now feeling very expensive! Does anyone have any tips for keeping it in longer?
I’m also taking folic acid to help the adjustment into the sulfasalazine.
My 10 year old son gets really upset when he sees me so sick and tired. My wife is sick of us talking about my illness so I try to not bring it up. Sometimes the cramps just can’t be hidden and I know she is aggravated by it. That adds to the stress. My daughter is 13 so her world revolves around her.
Did I mention how sick I am of sticking things in my ass!! I’m also not a fan of annual colonoscopies.
This is such a lonely disease and reading other’s stories on this site does make me feel better. When I’m not working, I’m coaching youth sports for my 10 year old’s teams (basketball & baseball). Some of the most intimidating places to be now are ball fields with portable toilets; my new definition of anxiety hell. I’m sick of being paper thin and looking tired. Sorry for the rant but my depression is extremely high and I just want to complain here as I can’t talk with anyone about my issues. Right now I hate life and as a Christian man that is secure in Jesus saving grace, I dream about my end.
Medications and other stuff tried:
In the past I have taken several medications, some that I can’t remember their names but had lots of awful experiences. I have tried to refuse the heavy duty meds as they seem to do more damage than good. I’m pretty sure colon cancer is in my future as you can’t bleed from your colon a majority of each year and not have cancer in the future. I feel that if I took some of the heavier biomeds that will just speed up the cancer diagnosis.
The immune suppressants like imuran worked for a while but may have done more harm than good.
Two years ago I received a medical majiuana card and have been using CBD to fight inflammation. From my research and experience I believe most diseases, including UC, are caused by inflammation in diets. At first the CBD did wonders but after a year I felt like I was building an immunity to them. If I increased the amounts than I got the euphoric high feeling. I have a very high functioning occupation and can’t afford to be stoned. I started taking weekly and then monthly breaks from it which seemed to help. However, when I wasn’t taking it, some symptoms started coming back.
I have also tried water kefir which produced amazing results for a me. I was actually getting normal looking bowel movements. I am buying Kevita sparkling drinks from my grocery store but at $4 each it’s not a long term answer. Plus I suspect there is another person like me in my local community as sometimes they run out of the small stock they keep. Lately it is a race to clean out the shelf while they are there.
written by Tim G
submitted in the colitis venting area