Everyone is different. I have allergies and so can't take sulphur which is what sulfasalazine is. I originally was put on mesalasine and pred. I've taken pred on and off in the past when misdiagnosed with psoratic arthritis and it works the opposite on me. Instead of feeling hungry and getting a moon face, I go the opposite and lose weight as it suppresses my appetite. With pred you just can't stop it, you have to wean off. Also, pred leaches calcium from your bones so take Vit D and calcium supplements as no-one bothered to test me until Oct 07 and I was found to have the stage before oesteoarthritis!
I believe that taking large doses of pred (allergic to all the non steriodal meds) is probably what kept me 'in check' and kept me misdiagnosed as no-one considered doing a colonoscopy until after I had the first blood transfusion. THe 6 months prior to that was an extremely stressful time. I had moved cities and started a PhD and was tutoring for a meglomaniac lecturer, plus I had broken my foot (imagine trying to hide/run from a crazy person when you're on crutches !).
It is a shock to be diagnosed. I had a very blunt GI originally who broke the news to me as "like a heart, liver, lung transplant patient, your body is acting as if you've had a bowel transplant and so it's attacking you and trying to get rid of it'...... I can tell you I broke down after I left his office and cried.
THe next morning I went for a walk and in between smiling and saying good morning to people, I was trying not to cry. As I was walking home, a bird crapped on me. That nearly sent me over 'even the birds are crapting on me' was my thought. Then I got angry and told my body that it was a team and just because one member wasn't strong didn't mean that they could kick it off, they had to work together. It was then that I decided that no matter what, there will always be someone worse off then you. I still have my arms, legs, I can see with my dodgy eyesight, hear, speak and think. I've seen people on chemo and radiation and my heart goes out to them.
Knowledge is power. Listen to your body. If you have to write down a food diary or what occurred during the day, and how many times you went, do. Then you'll probably start to see a pattern re certain foods and situations. Over the years before the diagnosis, I knew I couldn't eat certain foods but tried to say to myself it was in my head but paid for it each time.
It's hard being 19 and wanting to party but you have to put yourself first and stuff peer pressure. Drinking too much alcohol can screw your bowels up. Hard I know when you're out partying with your friends. I can't drink beer, scotch, whiskey, certain wines, vodka. If you want to drink, find something that suits your body and stick to it.
I feel for you Taylor. WHen flaring, my record has been 16 times in one day and I found that was exhausting enough. I eat natural yoghurt, and oats every morning to coat my stomach and then stick to things like corn thins for lunch. Fruit is a no no during the day, I only eat it in the morning as I know I'll be going to the toilet before starting my day. Sad when you plan your morning routine and take into account the number of times you need to go before starting the day.
I also have to put up with a fistula which drains during the day and that can be socially embarrassing. It has also stopped me from starting relationships as people understand you need to go to the toilet but a fistula..... Don't know of many males that would be strong enough to cope with that. But still, am searching to get it repaired. Had surgery 3 weeks ago but it failed. At least my Gynie Dr is willing to continue to search for new ways to repair it without the bag option that the GIs are set on.
It's hard Yadi, but over time, you'll know your body and what foods/drugs suits you. I've had to change meds over the years and at the moment, the concoction I'm on is presently working.
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups)
Oesteopenia in right hip and spine (caused by pred)
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil