Ulcerative Colitis Tips


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Waiting for Remission

I was diagnosed with UC in April of 2009, but my gastro commented that my inflammation was so bad that it had to have been this way for years. I finally went to a doctor on my grandmother’s recommendation– my grandfather had UC and had his intestine removed, and because I was frequently using the restroom for years, she thought I should be checked. I honestly thought I had IBS because I didn’t have the bloody diarrhea that many people with UC tend to have. In fact, my lack of that symptom was the reason I tried to treat myself– I thought for sure that I didn’t have UC. My doctor did a number of tests before the colonoscopy and could not definitively tell if I had UC, IBS, or something else. That test finally gave my symptoms a name, and I began treatments. I’ve yet to go into remission, but I’m currently on Colazal and Rowasa, as well as fish oil and probiotics. It’s certainly a long road to wellness.

Medications:

The first medication I was put on was Lialda, and it honestly did nothing for me. I took it for 7 months with no improvement, so my doctor put my on my current meds: Colazal (the generic version) and Rowasa suppositories. When I am consistent and take my 9 pills a day and do my nightly suppositories, I tend to feel better, though never 100% better. I have not gone into remission yet, but this combo of meds seems to make me feel well, although I admit I fall off the wagon sometimes (sometimes out of frustration and feeling like I’ll never get better).

My Question:

I’m wondering if anyone else is on this combination of meds and has gone into remission. Actually– since I haven’t felt well for at least 7 years, what is remission LIKE? How do you know if you’re in remission? Are your symptoms completely gone? And how do other people cope with UC? I basically tell everyone in my life that I have this disease so they understand when I need to cancel plans and be home, or why I don’t like going places where there’s no restroom. I find that when people know, they’re always sympathetic and understanding, which takes a lot of stress off me. When I’m worried about getting sick and I know the people I’m with don’t know I have UC, I get anxious and that can actually trigger an attack. I also try to drink a lot of water and do yoga to stay relaxed, but man… it’s tough. Especially when you feel like you’ll never be normal again.




colazal, lialda, remission, UC

2 Responses to Waiting for Remission

  1. Melanie Bryant October 17, 2010 at 8:39 am #

    I am not on the meds you are but when I went into remission (once since I was diagnosed in 2007) I was taking Asacol and Prednisone and I was symptom free except for extreme joint problems with my hands (stiffness mainly) and I was in remission for almost a year and went for a scope and the stuff they give you to clean you out brought it back on! So now I have been in a flare for like a year and a half and have little symptoms at the moment (just minimal blood) but just can’t seem to get back into remission and I have been trying several drugs but have hated the side effects so I stop taking them. I am currently on Prednisone and Salofalk and just trying to manage as well as I can, but I have to think that when you go into remission you are basically symptom free, and it is a great feeling and I hope you get there. I know that steriods suck (some not so nice side effects, but worth it in the long run) but they do help and you could mention them to your doctor, that is my suggestion. (hope it helps :))

    Melanie (Canada)

  2. Sarah October 20, 2010 at 5:45 pm #

    Dear Diagnosed April 09,

    I was also diagnosed this month and year!! I was on all kinds of drugs shortly after my diagnosis, Lialda being one of them, and I relapsed a week after I was released from the hospital. This episode was worse than the first and I was hospitalized for 2 weeks. I was then put on prednisone for a while, tapered off of it and continued take Lialda (this time twice a day) and also 6MP (6-mercaptapurine). Since my last hospitalization in May of 09 I have been symptom free! This drug is very strong, (and toxic!) but it works wonders. I haven’t had blood in my stool since, I’ve only had diarrhea a few times (once when I drank pop – something I never do) and usually while/the day after I drink alcohol, so I try not to do that very often since I’m not supposed to. I do occasionally have subtle stomach aches but nothing to complain about! On 6MP I have to have my blood tested every three months to make sure my levels are okay since the drug is so toxic. I just want to tell you that you can be symptom free with UC! My problem right now though is even though I’m feeling practically 100% I don’t like being on such a strong drug so I’m considering my options right now to go off of it.

    As far as what do you tell people? Usually if there’s drinking (and I know I shouldn’t be drinking) I just say, “I’m on strong medications that don’t allow me to drink.” And if they inquire more I do say “I have UC, it’s an auto immune disease (like arthritis) similar to Chrohn’s.” {I hate having to say the word “disease” I feel like people think it’s contagious like an STD or something!} “My immune system basically attacks my intestines and it’s not pretty when I have a flare up.” When I actually had flare ups, it was hard to tell people my problem because it’s embarrassing! ya know? Sometimes I’d just be straight up and say, “I poop blood 20 times a day, need I say more”? I hate being the complainer and not being able to go out because of it, it sucks. And gosh, my whole life I could never go #2 in a public restroom. Since my diagnosis I’ll go anywhere if I have to go (you don’t have a choice, really).

    Hope this helps!
    Sarah

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