my story

Hi. I am a 38 year old woman and I was diagnosed with UC just under a month ago. I've been having mild symptoms for almost a year, but things got really bad at about the beginning of September. At that point I started having very frequent diarrhea with blood and mucus, loss of appetite, abdominal pain and cramping, and chronic, crushing fatigue. I took lots of time off work during the weeks leading up to my colonoscopy (Oct. 22) and now my paid sick time from work is completely gone (I know I'm not supposed to let myself get stressed out but the potential loss of income here is quite distressing to me).

The colonoscopy found the UC, as I mentioned, and my doctor immediately put me on 1600mg of Asacol 3x/day. I worked my way up to that dose over the course of about a week. And for about 2 weeks I felt like things were improving. My stools were still very loose and watery but my appetite returned and my energy level went up. I didn't miss any work during that time. I did go back to ask my doc about a couple concerns, but she assured me that with the severity of the disease she saw in the scope, the longer healing time was to be expected.

Then, about a week ago, after a weekend with my boyfriend, I started feeling really lousy again. This was new: again my appetite disappeared, only this time I've been experiencing a lot of nausea. It's like my gag reflex is in about the middle of my tongue-- I can hardly put anything more solid than yogurt in my mouth without literally choking on it. I've tried really hard to keep myself nourished, eating frequent snacks like cheese, apple slices, yogurt, soups, and Boost nutritional supplements (which my doc recommended but which I think are actually making me feel yucky). I started feeling really depressed, and cried for about 2 days. I get a wave of nausea before I get the urge to use the toilet, which is about once every hour or two, including during the night. I started drinking some ginger tea yesterday but it only helped a little. Yesterday I actually vomited for the first time during this whole ordeal.

I guess I'm hoping for some advice, some support, something from you guys, to let me know this isn't unusual, or I'm not alone, or something. My doctor hasn't really been all that helpful, but I'm seeing her again next week so maybe I'll be able to articulate this latest misery to her a little better then. Thanks so much for reading.

I'd suggest keeping a diary of your symptoms to take with you. It's really easy for me to understate the severity of symptoms if I don't do this.

As far as your job, I'd suggest you speak with your supervisor or the HR department. They need to know you have medical issues and may need some accommodation. Also, go ahead and get your doctor to do FMLA paperwork. That gives you the equivalent of 12 weeks leave (unpaid, but it holds your job.) You don't have to use it all at once; it can be used in weeks, days or even parts of days. If you have short-term disability on your job, it will probably provide some income.

Good luck, and I think your doctor may want to look at different medication. Some of us simply can't take Asacol because it makes our symptoms worse. There are other options and it may be time to look at them.

Hi again,

Re foods, meals etc. I've tried to keep things "normal" but I can only get through about half of any meal before I just can't eat any more. I can't remember the last time I ate until I was full! I've been eating pretty bland foods: soups, crackers, like I described. I do try to eat regular meals as well. I'm a single mom so I at least have to eat with my daughter a couple of times a day :)

Before this all started, I ate pretty decently I think. I almost never ate fast food, and I just cooked lean meats, veggies, starches etc. at home. I've pretty much stuck to that, at least when I've felt semi-normal.

I'm not in the US, I'm in Canada. I'm not sure about the rectal meds you mentioned. As for the HR policies, I'm in a union and we have pretty generous leave. I never thought I'd use it all up! I do intend to talk to the benefits administrator and see if there's anything I can work out.

I have been under the care of a gastroenterologist. She was the one who did my colonoscopy and prescribed the Asacol. It's true, I don't think I was able to express to her just how terrible I've been feeling over the past week or so. I'll try to keep a diary.

Thanks for the suggestions.

Edit: I think my colitis is limited to the bottom portion.

I just wanted double what Quincy suggests regarding the enema. I took the same dose of Asacol for a flare with similar results, I improved fairly quickly and then got worse again after a few weeks. Adding the enema every or every other night is helping getting things quieted down again.

Also with all that nausea you might want to cut back on the number of Asacol you are taking when and if you start the enema. Asacol, colozol and lialda all make me nauseous.