26 male – Doctor confirmed UC for ~2 years. Actual symptoms for at least 7 but probably even longer – didn’t know it was a symptom, but looking back…
So when I first starting having symptoms I actually went to a natural healer; he basically to me that I should change my diet and lifestyle, and recommended some supplements or ingredients I should utilize to get feeling better. At this point I was in university and drinking / eating very poorly (meal hall, pizza, wing nights, lots of beer). So I followed his advice – basically limiting dairy, removing gluten almost entirely and increasing red meat or iron rich foods. Wow things were great – so great that after about 6 month of this I had almost forgotten there was anything ever wrong with me. Fast forward to near the end of university and and start having some of my old symptoms, not as bad, not as often but sometimes. Graduate – get a job – move away and then it really starts.
For my job I had to travel constantly. Always in hotels and airports. Always eating crappy food, and never having a real schedule or anything healthy. So the symptoms get worse; and at this point I have put on a lot of weight really fast which makes things even worse lifestyle wise. And then I start losing weight… out my butt. I go from having bad symtoms and 6-8 times a day to at least 20 or 30 times a day. I am exhausted, i’m up half the night, I almost quit eating altogether just so I won’t have to go AS MUCH lose all that weight and almost become frail – I feel like I’m a hundred years old. Long story really short I end up in the hospital, about a 3 week stay, lots of drugs (all the usuals) and I have been on them ever since. They work.. to an extent.
I am not normal and I still have flairs; but although every doctor tells me eat whatever I want, drink whatever I want, I know that’s BS – I haven’t been nearly as good on my diet as I was back in University but since I have been trying to take it up again I have been able to start weening myself off some of the pills (1/2 of my imuran and salofalk)- and have avoided the Remicade (which sounds like a crazy drug to begin with). I am not the only one in my family with issues like this so they are all pretty understanding and so is my work thankfully. Biggest concern is that I find it difficult to make any long term plans because I never know when my next bad bout will be.
Where I’d Like to be in 1 Year:
1 BM a day. To be honest I haven’t been there since I was like 12 years old… 3 is really good for me and I never knew that it was abnormal (no one ever talks about how many times they go to the bathroom)
Predisone worked the best but also ruined my joints, and a bunch of other problems. Though it was the worst.
Salofalk is fine… I don’t think it does much but it helps more than not taking it and has the least side effects.
Imuran – Kind of a pain to take but it works – need to do blood tests all the time now, and does funny things to your urine
written by Dan
submitted in the Colitis Venting Area