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Ulcerative Colitis
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Posted 3/28/2008 4:02 AM (GMT 0)
Hiya. I am a Montreal 31 years old woman. I have ulcerous colitis for 8 years now. The first five years where like nothing happened (taking 4 times asacol a day).

But then for 3 years now I have symptoms every day. I have tried salofalk in pomps and suppository. My doctor is persuaded that my colitis is medium and just need a medication but it seems that I never get well. I have up to 20 emergecys a day (most of the time with fluids, with or whithout blood), but no stools. I am very tired and I used to be very active, funny with a high libido. It seems that I don't know where to start and when the ending is coming. I got used to the pain and the everyday incomforts that I don't know what is normal to not normal. It seems that I keep the same toxins for 3 years. How do you all live with that? Do you have remissions? Do you think it might be stress? Do you fear talking a nice walk and then BAM your obssession is to making it to the nearest bathroom (if you are lucky on time)? And most of all (wich is the hardest part for me) do you feel a sort of shame? How do you live with that? How are your love lifes?

Cheers from stéfanie d.

Posted 3/28/2008 4:23 AM (GMT 0)
Bonjour, tournevice. (You just saw my entire French vocabulary, but i do like to try.) Welcome to HealingWell.

Do you know what part of your colon is affected, is it throughout the colon or only part?

There are many medications beyond Asacol and Salofalk. Some of us do better if the Asacol is replaced with Colazal. Beyond these baseline drugs there are steroids in suppository, enema and oral form that can often bring a quick remission, although they aren't for maintenance. There are drugs that suppress your immune system, such as Azathioprine and Mercaptopurine. And there is a whole new class of drugs called the biologicals, including Remicade and Humira.

Your frequent feeling of needing to go but no stools indicates rectal inflammation. There are steroid enemas and suppositories that might help you reduce the inflammation so the Salofalk could work better. If you're going 20 times a day and your life is disrupted, you're not being adequately treated. Are you seeing a GI specialist, or just your primary? You should be followed by a GI, and if your doctor is a GI, you maybe need to be followed by one who's more up to date on treatment options.

Stress can definitely trigger and prolong flares in many people, but it doesn't cause UC. I think some of the feelings of shame that we have come from the feeling that we have no control over our lives or bodies. Educating yourself about UC is a great way to fight that. I'd suggest starting with some of the links in the UC resources thread at the top of this page.

This is a great place to get support and ideas from other people who have been through the same thing you're going through now. Welcom again.
Posted 3/28/2008 12:16 PM (GMT 0)
Hi and welcome to Healingwell :) Do I ever feel shame? No because you know why? Everyone poops! It is not a secret that everyone does - we just happen to have a body that poops more then others :) I'm sorry if that sounded crude to you but it's a fact of life and we shouldn't be afraid of it. Our bathroom habits are a closet secret, no one wants to hear about them nor do we ever want to share however if more people knew what it is that we deal with on a daily basis, I think the more we can find help. Look at AIDS, that was a secret disease for many many years until it came out into the public view (mainly because it couldn't help to be since it was killing people) but once people became aware of the disease, things were being done for it.

As for the urgencies, yes they are horrible. I have had that many times as I'm sure others have as well. Once your Uc is under control, the less they will become. In the meantime, educate yourself as much as possible about your options and expectancies. The more you know, the more power over your body you will feel.
Posted 3/28/2008 3:21 PM (GMT 0)
Hi everyone and thanks a million for your response. To answer back the 2 last posts, well I have the first 30 centimeters of the rectum in inflammation. I am followed by one of the top GI in Montreal for now 7 or 8 years. It s just that I hit a wall and I rarely remember a day just feeling perfect, clean and with lots of activities with ambition (like walking in the woods). My inflammation got more severe as the years went by and the reason why I apply to this forum is that it seems that I dont have a real understand from my friends (even if they try) and obviously they cant give me some tricks!!!!

I appreciate your answers and its true that everyone poops! (did I just said that word?) :PP

I always get the feeling that when you see your GI there are always some topics (like everyday life, emotionnal stress) that are a bit taboo to talk. And I want to take control of my bodies and let the poison out. But like I said i am hitting a wall here and hopefully with these forums I will be able to learn from all of you and share maybe my tricks too. And make you laugh as well, like I was before I got sick :PP

Do steroids make serious side effects?

Stefanie

Posted 3/28/2008 11:40 PM (GMT 0)
Bonjour Tournevice, comment ca va? I saw you mention being active ..in many realms...prior to UC. I know since my diagnosis my energy..in and out of the bedroom...has decreased. I know this disease takes a toll on the body. Being in the bathroom with one's guts coming out doesn't make many people feel romantic! about steroids...they may be needed for remission...but some give side effects. The forum had a good thread about pred earlier today. Good luck..!
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