Living with Ulcerative Colitis – an article for the pillpoppers

Lately, people have been sending me articles about other folks with UC. Usually the focus is on people who have had extreme, out-of-control cases which result in surgery and either a j-pouch or a colostomy bag. While this is interesting to me, since it will most likely be my future, I see less articles about people who are at the same stage I am, namely ulcerative colitis that’s manageable with pills, pills, pills. I said as much to a fellow chronic-diseased (heh) and she sent me the following article from the NY Times.

Living with Ulcerative Colitis – Managing Chronic Illness – When the Body Decides to Stop Following the Rules.

It’s short and sweet, and it’s the first article I’ve read where the writer/subject is still able to manage their UC with medication (albeit TONS) and diet. This is one of those diseases where we don’t hear much about the manageable cases, partly, I think because while taking a bazillion pills a day (and having regular checkups, and thinking about surgery, and stressing about stress) sucks, it’s not as drastic a life change as surgery.

But it still stinks, and I want public acknowledgement of the fact. Also, adoration and chocolate would be great, too! Please send all donations (corporeal and non) to peppery in Central New York.

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5 thoughts on “Living with Ulcerative Colitis – an article for the pillpoppers

  1. great article! and i hear you and your wish for stinky acknowledgement. rationally i know to be grateful that things aren’t worse. AND I AM. simultaneously, i am tired of canned green beans and spending 70% of my day in the bathroom.

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  2. Tired of canned green beans?? NEVER!I think what I really want is just more public acknowledgment of the disease in general. I see commercials for UC/Crohn’s information nowadays, that’s definitely a start. Also, most of my coworkers, family and friends know a good deal about it; that’s due partially to my big mouth, though.

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  3. I was googling for achy knees and ankles causes – thinking it’s probably linked to my remicade treatments, and I stumbled somehow on your blog. I was diagnosed with UC a year and a half ago, and was doing fine until about 4 months ago. Now I’m having little flare-ups on and off, and my new doctor’s “cure all” is freakin’ antibiotics. Totally doesn’t work. Unfortunately it seems my remicade infusions are no longer doing the trick either. I was skimming your other posts – you’ve been in remission for a while now yes? What’s your drug regiment like? Because my stupid UC just cost me the last 5 days of my life, and something has to change. Reading your blog has been great – Half the time I felt like it was me writing. I think it’s easy to feel alone when one has an illness that concerns poop.

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  4. Larissa – I agree, it’s a very private disease sometimes. But I have found some great blogs and support groups online; they are great for reminding me not to stay too introspective about my UC.My daily regimen is 125 mg azathioprine, 3 Colazal 3x a day (I think that works out to 1150 mg? Not sure), and then what I like to call the protection regimen of: folic acid, calcium and multivitamin, and birth control. Gotta protect the bones and possible babies… But yes, I am in remission, and I have been since late 2004 (after being diagnosed in May 03, and having some ups and downs with devil-prednisone and Asacol and Pentasa). Things are generally quiet if I watch my diet, medication and stress levels, I haven’t had to go back on the prednisone, and I’m grateful for that. What kinds of meds have you tried? What happens after remicade? It sounds like your case is more severe than mine, would you consider surgery? Do you follow a certain diet? My UC is throughout my entire colon, is yours? If any of these questions offend/irritate, please don’t bother to answer them! (Oh, and poop poop poopy poop. See, I can say that with impunity! If anyone gives me funny looks, I can always say, “Back off, man, I’m chronically diseased.”)

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  5. If you do a cost-benefit on the surgery, the surgery is the better option. Even if you can control the UC with 5-ASA and 6-MP, you’re looking at $550 a month or so in medicine. The surgery is about 40K, and then roughly $40 a month for ostomy supplies after that. I had the extreme, out of control UC, but it was actually Crohn’s. It would be more difficult if it were somewhere in between. That said, I still think the surgery is the best option from a financial point of view (not to mention that it pretty much precludes cancer from developing at a later stage).

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