I feel crushed...

Did you take any lomitil/bently/some anti-spasmodic before you left?

Let me just save you ALOT of worry/anxiety/embarrassment. Ask for either bently of lomitil from your GI. You always want to have it on hand. I keep lomitil. It's cheap, and I cut them in half when I get them (hard to do, btw since they are so small). A couple of hours before you are gonna hit the road to go on a trip take a half one. If your stomach is acting up take a whole one. I have taken two before going to the airport before, lol. It really quiets down the intestines down, and acts as a stress reliever too. If it's gonna be awhile before you can get some, go to the drugstore and get some of the immodium pills. That seems to work for alot of people here too, although I have never used them. I can get the lomitil cheaper than I can get the same amount of immodium. There has been a few time where they just haven't done it for me, but for the most part over the years they have been a wonderful friend.

No one even told me about this until I had the DD for a couple years.

Besides the fact that drugs were failing her, my daughter felt like you knowing this disease would be with her for the next 50+ years. That was part of her decision to have surgery.

My son, on the other hand, has Crohns. He will take immodium if he knows he will be out of reach of bathrooms for several hours. He participated in a car show last weekend and while he needed to use the port-a-potty several times (to pee), he was able to enjoy the day without worrying about his stomach acting up.

Try not to get too discouraged or down about your UC.

My GI prescribed me Immodium. He said I could take one every day after my morning BMs. I haven't taken it, because it seems like it wouldn't be the healthiest thing to take every day. He said it was fine to take it unless I am bleeding, because that's when the risk of toxic megacolon comes into play. I would check with your doctor before taking it though.

Sorry to hear you missed out on Easter weekend. This disease sucks. Have you talked to your doctor about upping your Asacol? You're on a pretty low dose. You can take up to 12/day. Have you tried rectal meds? I know they don't sound appealing, but they aren't that bad and they have helped a lot of people here, including me.

Also, Sara do you feel like the Metamucil wafers are helping you with urgency and stool formation? When do you eat them and do you chug water afterwards?

Hi again. =) I often feel like I have to go to the bathroom soon after taking my Asacol, too. That usually only happens with my morning dose though, so I figured it was just a morning thing since I usually have the worst time in the then anyway.

My GI didn't want to explore too many treatments either, which is frustrating. I asked him if I could try the rectal meds after reading about them here, and he said yes. They really help with my bleeding and urgency. I would try those before Remicade, but that's just me. I had pancolitis when I was first diagnosed but the Asacol and Rowasa got it down to just a little bit of mild rectal inflammation. Why doesn't your GI want you to try 6-mp before the Remicade? My GI said 6-mp would be the next step for me. Cortifoam (steroid enema) would be another option that a lot of people here are helped from. I've never tried it, but I will try that next before 6-mp or remicade.

I think the Metamucil wafers help with bulking up my stools. When I miss a day or two, it seems like I go more often with smaller deposits, but it's hard to tell if it's the Metamucil helping or if it's just coincidence. I drink at least 8 ounces of water with the wafers. I usually eat them between breakfast and lunch, around 10 or 11 a.m.

Do you think the Jaro-Dophilus probiotic is helping? I can never tell if my probiotics help or not.

hi Shadam,
Sorry about your Easter weekend. I know the feeling.
Just to add to what's already been said... there are a lot of things to try before going to remicade. I'm kinda surprised that your doctor thought that was the next step. I spent years trying all kinds of options before my doctor even mentioned it as a possibility. The rectal meds are a good first place to start. (Rowasa, Cortifoam, Canasa, Cortenema)
The anti-anxiety med, Xanax, can be a life safer. Just knowing that I have some with me if I need it, can be enough.
I agree with others that Lomotil can also be great.
Rather than up the dose of Asacol, maybe it makes sense to try another similiar drug, like Colazal or Lialda. I never did well with Asacol, but I just got 5 months of remission being on Lialda. You never know.

It's the trial and error that makes it so much fun. Right?

Have you thought about trying another doctor for a second opinion about your treatment?

The whole anxiety of this disease is definitely one of the worst things. I have a 50 minute subway ride into work every morning, and it frequently stops between stations and just sits there, which used to be quite scary. Since I've been in more-or-less remission I realise that things are sometimes quite psychological, both in terms of how you feel about it, and also the physiological effects on your digestive tract of getting stressed.

For what it's worth, I found that Asocol got me into remission. I use canasa as well every evening (can't hurt I guess).

I switched doctors and my new one is definitely of the view that you shouldn't settle for symptoms that mess up your life. If you're still experiencing symptoms to a degree that interferes with your life you could talk to your doctor upping the Asocol to 12 a day (2*6 or 3*4, whichever you prefer) and adding canasa into the equation - that's what got me into remission. Sounds like you tolerate the mesalamine fairly well - unless you're having side-effects you're not mentioning.

All that other stuff you're taking (the vitamins and so on) can't hurt I suppose. Only thing I can share is that I've tried all sorts of different probiotics and supplements and I couldn't put my hand on my heart and tell you confidently that any of them made any difference to anything other than my wallet. And I can also tell you that when I had to do a trip one time and didn't take all my assorted vitamin pills and potions with me my symptoms improved. So I guess there are things that can make thing worse.

I've taken immodium a few times. Good stuff. Certainly helps avoid anxiety on flights (probably my most stressful scenario as I have to fly a lot).

This is a nasty disease. But there are plenty that are a lot worse, and it does have a cure, even if it's an unattractive one. Many of us are able to enjoy most of our lives in remission, and for some of us it's also the case that even our flares aren't that bad for some, the majority, or all of our lives.

If it's any encouragement, I've had this at least two years, and am doing fine. I carry out a pretty serious job with minimal obstruction from my UC, have a wife and two small daughters and am no less active a parent for it, have shaved 5 minutes off my two mile running time (18 minutes now, which I realise isn't great, but the point is the improvement has come while I've had UC), bench 150% my bodyweight compared to about 100% pre UC, managed 100 push ups a couple of months ago compared to 50 pre UC. I feel quite lucky not to have more severe symptoms, and I realise others have far worse situations than mine, but my point is just that it is definitely possible to have UC and let it inspire you to try to overcome it. Whether you succeed or not is not the point - it's the attitude to that challenge that matters, in my humble opinion.

Last thing and then I'm off again - this board is a great thing. IBD is not actually that unusual, but because people don't talk about it, it's easy to feel isolated. So you may find, like I do, that this board is a really valuable resource with some great people on it. Having said that, two words of caution. First, my guess is that the average poster on here is atypical, because most probably you find that those in remission have less interest than those experiencing more severe symptoms in coming on here and reading and posting. Certainly, I came on here much more frequently when flaring than when in remission. So at least don't assume that the sort of symptoms that sound typical on this board necessarily represent the average for UC sufferers. You may well experience much milder symptoms than you hear people reporting on here.

Second, this is, as you've noted, a disempowering disease. When disempowered, it's human nature to try to take control, and one of the ways to do so is to believe that you have knowledge and understanding of the thing that is disempowering you - to understand something is, we assume, the first step in conquering it. Well, as far as I can tell, the defining feature of this disease (other than the huge amount of time spent sitting on a toilet) is that basically it's not very well understood. But I think it's tempting for all of us to convince ourselves that we are experts - usually as a result of our inevitable intensive internet research. So it's tempting to tell ourselves that we've somehow gained some sort of control through our efforts to understand. My personal view, which I'm sure others will disagree with, is that none of us can really speak with authority about anything other than our own personal experience. Even our doctors, who've trained in this and see and speak to many more UC sufferers than we ever will, operate through trial and error combined with guesswork. So when you see people confidently posting on here that the disease is this way or that way, and that this approach or that approach is better, you might want to take it with a pinch of salt. You'll find what works for you, together with, hopefully, a supportive and collaborative doctor as your partner. You're always going to be the expert on you and your UC, however much other people may appear to be or even claim to be more expert than you.

Sorry for the long mail - I was just feeling for you and wanted to share my experience and take on UC in case it helps.

Be well.