New to UC and have lots of questions

Hey all,

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

ausruby said...
Hey all,

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.

Don't skip the birthday. I was a little shy about going in public places. Have to get over it. I spent a week in New Orleans and I used some facilities that were less than pleasant. I learned to just say the he#l with it. It is just a fact of your life now. Don't let this disease stop you from enjoying life and friends. You are going to have to step outside your comfort zone. As for tummy pains well I have never really had them. I am in only my second flare and food is just going right through me but still no pains. It will take time to work through all this illness will do to you and how you will deal with it. I'm still scared as I am only a year into it. It's going to be confusing. So many people with different ideas. You'll have to figure out what works for you.

Most items have been stated, but the fear of public restrooms will pass. I know a good number of stops on my normal commute.
I only had luck with probiotics at high doeses, like the GNC 50 or 75 billion count (sometimes 2x/day).
The alcohol is tricky, I rarely have more than 1 or 2 drinks, but hard cider being gluten free is a sometimes a safer choice.
As for the job. I can say over the past 12 years I have had times where I did not need to run, and times when the run from my kitchen to the bathroom seemed too long!
You'll get used to listening to your body, just try not to over analyze it can definitley get in your head.

No blood or urgency will probably be the first signs things are starting to settle down. Also having 1-2 solid BMs a day which are aren't skinny (in time). No mucus - i consider myself in remission but will very occasionally get a little mucus which is a sign for me to up the enemas.

For me i didn't consider myself in remission until i hadn't had any of these symptoms for about two months. Again, things are different for everyone but i think these are things to watch out for and it does take time.

I would be keeping in contact with your GI if your still bleeding while tapering the pred, you may really want to consider enemas to help with this transition.

I was using steroid suppositories before going on pred and they didn't do anything either. I think i needed the pred to get the inflammation down. Although, it could've been that they weren't reaching high enough? who knows it really is a maize.

try not to worry too much it will work out and you'll get your life back.

Oh, as for high fiber, works for some but not others. For me I couldn't have any fiber while flaring hut now like to start my day w big bowl if oatmeal.