my story

 

My Story, please read and reply as i need someone to talk to.

I was diagnosed with UC about 5 years ago and my condition responded well to the first drug i was prescribed (cant remember what it was). Being completely ignorant about UC i thought i was cured. around 4 months later symptoms reapeared and i began the living nightmare that is UC. Since then i have been seeing a gastroenterologist who advised me that alternative medicine was not worth looking into and drug therepy was the best option. he was then and still is confident he could control my condition thru the use of drugs. he is yet to do so. i have taken a large number of drugs some of which have worked but all have seemed to loose effectiveness over time. recently he advised me to start taking a 'serious' drug (mercaptopurine) which he would not prescribe without me first reading up on and considering. upon reading the info leaflet i learned it was a drug used mainly for the treatment of leaukimia and has  many nasty side effects. i started taking the drug but the initial dose (50mg) was ineffective. as i live in an isolated area (pilbara, western australia) my specialist only flys up every 3 months so i see a general practitioner between times. my gp looked up mercaptopurine in his little drs book of drugs, asked me what i weighed and told me i should take 250mg. after a week or so my uc went into remission but i began to feel pretty bad. i continued to take it for 5 weeks untill my specialist came to town. by then i felt realy bad. When i saw my specialist he nearly freaked out and told me i had been taking a chemotherepy dose. he told me to go off all drugs for a week and then start on 100mg of mercap, this aint working and i dont want to wait another 2 mnths to see him and i dont want to take drugs that make me feel tired and run down. i would appreciate it if any forum members would advise me how to start to alter my diet. from what i have read on these pages i realise i dont have uc half as bad as some others but i have lived with constant symptoms sometimes bordering on extreme for years at a time. these have made working almost impossible and affected my state of mind. i have been depressed at times but i try to focus on the good things in life. this is easy when you have 2 beautiful children and a wife who lets you go fishing whenever you want. aside from dietry advice i would also just like to talk to someone with uc.

Hi chiefy, welcome. I have not taken mercap. so I can't really speak to that. I think maybe i've read that some people take it at night so the tiredness hits them when they're going to bed anyway?

Some people here find that diet helps them, others do not. I find that food doesn't particularly affect me, but if I'm in a flare, I avoid sharp things, which might cut the tender, inflamed tissue: so, no salads, no coleslaw, corn, popcorn, nuts... nothing greasy or fried, because fats are harder to digest, nothing too acidy (I try to keep tomato-based foods to a minimum) and no hot spices.
So, in general, bland-ish food, softer foods. I do better with fish and chicken than beef or other red meats. I keep drinking to a minimum... and though caffeine can be a stimulant for the GI system, like Sherry, I won't give up my morning coffee!

I do think regular Western medicines are helpful, but I also supplement with natural things (see my signature.) I love my homemade yogurt, which I let "brew" on the counter for 24 hours to increase the good bacteria; also, I've found that one VSL3# per day along with the other brand I take is what helps me the most. I've had 3 GIs recommend probiotics to me, so I think they're becoming more mainstream.

I know my knowledge about all things UC expanded hugely when I joined this forum and started reading - so, welcome to the conversation!

chiefy,
many here have been in your same condition so we know what you're going through; although the high dosage of medicine did shock me. My sister and I have UC. When she's flaring bad she goes to chicken and rice and lots of fluids. She says she has to eat fruit with coffee in the morning then chicken and rice all day for her to get better. I prefer any fruits or vegetables to be cooked well when in a flare. I take pysllium husk fiber with my meals as it helps both constipation and diarrhea (just don't take it with meds). I stay away from foods that give gas or greasy or fatty stuff. I like fish and rice.
Moderation is key. Eat small portions of things. Some folks in here have a system of things that work for them. I've tried most of them and they didn't help me out of a flare. If they don't help you when you're flaring you may want to see if they help you stay in remission once you're there. There are a lot of smart people in here but you'll have to experiment a little to find what works for you.

put another shrimp on the barby my friend from down under

Man it seems to me everybodies story with colitis is close to the same. Seems to me that the Doctors them self would research Colitis as much as we do to try to understand what thier patients are going through, and/or net work with each other. I have been looking for a Family Doctor in my area that would help me with my problems, they just push it off on to the GI docs. which as we know cost more. Hang in there, we will come out OK!