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Just Another UC

Intro:

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…

My Story:

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)

Medications:

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





One Response to “Just Another UC”

  1. AdamMay 5, 2012 at 11:57 am #

    Hey Dan,

    thanks so much for sharing your story. You brought back some tough memories about making plans that I remember very clearly while I was dealing with active symptoms not too many years ago. In my head at the time, I found it pointless to make plans(travel, car drives that would be a few hours, that type of stuff, and even dinner plans or simply going over to a friends house to have lunch or dinner) because of not knowing how the UC would be on any particular day. Those times are definitely tough. It can make you feel like your stuck inside this crazy to understand Colitis Jail Cell.

    Here’s my bit of advice, or at least what worked best for me when I was sick with the come and go symptoms. Eventually I said “Screw It!” I’m gonna make whatever plans I want, as though I didn’t have any UC, and if at the time of the event things were not looking good healthwise, I’d alter them. I’m pretty open with my condition, and I usually made it clear to everyone that there was a chance that my plans would have to change, but that rarely ended up happening. Sure there was a bachelor party in Vegas that I chose to skip because I knew it was going to be all kinds of craziness that my body just wasn’t up for, but other plans and trips ended up working out just fine. One recommendation might be to look into “travel Insurance” if you are planning anything that is somewhat expensive and requires up-front expenses.

    But I guess what I’m saying is, once I finally decided to live my life, and plan future activities without too much worry about my UC, most of the time things worked out pretty darn good. I could easily have made the decision not to plan anything out because of the fear that old man UC would come out and mess things up, but I’m not down with living like that anymore. I spent too long thinking like that after I was diagnosed and it didn’t help me at all.

    I wish you the best buddy! hang in there, and good luck with however you move past your UC!

    -Adam

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