I've recently been diagnosed with pancolitis ulcerative colitis and been prescribed Salazopyrin 6 times a day. I hadn't heard of this disease 8 weeks ago so have been shocked to find myself now stuck with it forever. I haven't had much chance to speak with my specialist and so have found this forum very informative and helpful over the last few weeks while I have been waiting for confirmation on a diagnosis- thank you!
I have a few newby questions and was hoping you may be able to help, so here goes...
My disease seems much milder than lots of others on here, my urgency is not too bad and I haven't experienced tummy pains. In your experience does the disease get worse over time? Is the increased urgency and pains something I have to look forward to in the future?
My job is very physical and access to a toilet isn't always easily available, does anyone else have this kind of job and managed to keep it? Would you recommend I tell my boss?
My friend is having birthday drinks on the weekend but I'm not sure if I should attend as I have D. I know it sounds silly but I'm embarrassed to 'go' in public places. How have you all coped with situations like this?
My specialist recommended a high fibre diet but this bloated me and gave me awful gas so I've stopped. Would you recommend I persevere or maybe you could recommend other diet tips/ supplements I could try as a good staring point as I'm currently eating as I was before diagnosis. (I've seen probiotics seem to be popular on here).
Also any other tips to coping with this horrible disease would be much appreciated.
Thanks in advance
My disease also started on a milder note and that first flare didn't last long. It seemed horrible to me at the time though, yet was I to know what bad was. Often we do get worse, but that is mostly because you decide those first few flares will end and you stop medicating yourself! Stay on medication even when you stop the flare, it will help future flares go for shorter periods of time and not be so bad. It can be an unpredictable disease, it may get better, get worse, stay the same. Flares can last days, weeks, months, years! I'm in a flare that started in 2010! It's better now but I'm still technically flaring.
I used to have a job that kept me on my feet and a good distance from the bathroom (the other end of the building). This was a customer facing job. I made sure to tell my superiors, because at a moments notice I may need to run to the bathroom without asking and without telling them (in meetings, with customers, etc.). If you can hold it then you may not need to share this with your supervisor. I eventually transitioned to another job with another company that's a desk job, non customer facing, and closer to a bathroom. With this job I can drop at a moments notice and go to the bathroom. I have also informed my managers here just to avoid any disrespect in meetings as well as the required time I needed for treatments when I first started. They were very accepting. I also changed jobs due to stress - I needed a lot less of it for this condition.
How alcohol is handled with your condition is different from person to person. Usually in small amounts it doesn't do anything bad. A glass of wine. Otherwise for most of us it's a bad idea - it can set off a flare, make one worse.
Generally most doctors recommend LOW FIBER / LOW RESIDUE. It's a good starting point until we figure out the specifics that our colon likes and dislikes. You do know that many kinds of fiber will make your D worse? It's going to make things move a lot faster in your gut. There are kinds of fiber that will help absorb fluid and that's the kind usually best. I avoid fiber like the plague. Every time I try it I get worse. Also anything that seems to make it all the way through my system (corn, peas, raw veggies) seems to irritate me more.
I've had very little success with probiotics. In fact with any medication. Steroids seems to do nothing for me, mesalamine (asacol, apriso, lialda, etc.) seem to make me worsen.
I take immodium on a daily basis. I do not follow the directions on the bottle. I would recommend you discuss that with your doctor if you want to try it. It's an over the counter anti diarrhea medication (lopermide hcl). It gives me some control and reduces my bathroom trips. This stuff is what lets me drive to work with less bathroom anxiety.
Whenever your systems worsen call your doctor, they may be able to supplement your current treatment with something else to help you through a flare. Keeping in touch with your doctor through every flare is important. I learned this. They would always prescribe some extras for me like some antibiotics that seemed to help me and other things to get me through tougher times along with my normal treatments.