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Ulcerative Colitis
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Posted 2/16/2018 12:10 AM (GMT 0)
Hi everyone,

I'm new to this forum but i've read some posts here and I'm sure you'll know more than me about this and hope you can help me a bit.

I've had two episodes of UC during the last year and a half, with a duration of a pair of weeks each. After the second one, I was explored and found about 40 cm of my lower intestine inflamed and a few ulcers, so my doctor prescribed me Salofalk in aerosol format and Pentasa in granules, both once per day during the next 4 years at least, which may extend through my whole life.

With this prescription I got even more worried than before, as I hadn't assumed the seriousness of the matter. I still don't want to believe it, but this treatment is really forever? And in this case, any tip for going through?

Thank you very much.
Posted 2/16/2018 12:52 AM (GMT 0)
take one day at a time - unfortunately, no one can tell you with any certainty what the future holds -

when do you see your specialist next ?
Posted 2/16/2018 12:54 AM (GMT 0)
I'll see him next month for a quick review, and see how it goes, but I can expect very little update as I haven't had any other episodes nor abnormalities...
Posted 2/16/2018 4:28 AM (GMT 0)
its not forever. it is until a better treatment or until a cure - but yes, it is recommended to be on some maintenance regimen ongoing. after a sustained remission, you may get by with some type of anti-inflammatory foods/supplement and/or probiotics. But most, continue the drug that got them remission indefinitely, albeit often at a lower dosage.

I would speculate you have had one 18 month continuous flare, and the symptoms rose above the clinical threshold twice. flares don't start and stop in just two weeks. you likely had inflammation the whole time, and period of unmanaged inflammation has likely raised you colon cancer risk a bit. after a few more years since you UC diagnosis, you should get regular screening for colon rectal cancer.

I hope you get many more good weeks between symptomatic weeks.

good luck
Posted 2/16/2018 10:17 AM (GMT 0)
I see, thank you very much. I'll take one day at a time.
Posted 2/16/2018 2:07 PM (GMT 0)
Having a new chronic illness diagnosis is a lot to wrap your head around at first. UC is a young-person's disease, it hits us when we are healthy with no prior health problems. The idea of taking medications and seeing doctors is completely alien/foreign to many of us. Many of us can relate, can empathize, and went through the same process ourselves. Overall, UC enables you to live a pretty normal life, aside from the occasional flareup (what you are experiencing now). Give it time, it will get easier, and you will be fine once you and the doctor discover the right combination of medications to treat your UC. The treatment goal is to get us into a remission, where we are essentially normal and go about our daily lives without worrying about UC and without troubles with our bowels.

Agreed, right now focus on the here-and-now. Learn what you can about UC, ask lots of questions.

Generally what your doctor was trying to enforce/instill in you is that chronic illnesses require a maintenance treatment for life for the majority of us (regardless of chronic illness: UC, RA, diabetes, etc.). It's a common rookie mistake to quit one's maintenance treatment when feeling well, "I feel great, I'm cured, forget these meds *in the trash can*." What happens? Noncompliance with your medications causes a relapse/flare of your chronic health condition. According to statistics across all chronic illnesses noncompliance with maintenance treatments is the biggest reason for preventable hospitalization and relapse in those conditions. Simply taking your medications as prescribed can improve quality of life, reduce medical costs, lessen your need to need emergency hospital intervention, etc.
Posted 2/17/2018 12:26 PM (GMT 0)
Barto... the disease is very personal. We all go through different phases with it. The denial phase is really strong for some people. It was for me. In my opinion, the shorter the denial period, the better, because you can start getting real about re-arranging your life to deal with the disease, and you can investigate treatment options more realistically. For myself, I needed therapy to cope with having a potentially life threatening illness. It was very, very hard on me. It still is. I have an educational background in medicine and research which has empowered me to look into things more deeply. Even so, nothing really prepared me to deal with the loss of life and opportunity. The first couple of years when I survived major flares, I had all kinds of narratives about it... like wow, I must have figured out how to fix myself and really live with this! Until the next flare... and the next... and the next...

Like any torture victim, you can only stay strong for so long. Eventually it breaks your will.

I'm only telling you this because the stronger the denial, the harder you will break when the time comes. It's better to practice acceptance now. You can still probably lead a functional life, but if you are too busy pretending the disease isn't a serious concern, then you may be letting it get out of control.

Yes... you will probably be treating your UC in some way or another for the rest of your life, unless you get surgery. Even then, a lot of people have lifelong complications from surgery. Their j-pouch fails or they get chronic pouchitis. Their permanent ileo doesn't fit properly, it leaks all the time, they are allergic to the products used to adhere the bag; the bag itself may be hard to live with, etc. There are really no good solutions for this disease right now. However, you may get lucky and the medications will give you lasting relief.
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