Newb, Just started taking meds, know nothing about UC but trying to learn fast as I can. Any advice

I was diagnosed with UC 5 years ago after a colonoscopy I had, age 30, to check for cancer,(father died of colon cancer at age 46). I was surprised to find out I had this chronic disease. I'd only experienced very mild symptoms throughout my life which I'd attributed to just the way I was. Forgot about it after that and just went on about my life like normal.

Four weeks ago I got the flu. Super sick. On the third day I began having nasty abdominal pain. I got constipated. When I finally started pooping it was bloody diarrhea. I've been pooping blood every day since then. Some days it's a lot, some days a little, some days I don't go at all.

I saw a GI last Wednesday, (9 days ago). I explained the situation to him. He acted like it wasn't a big deal and assured me there were drugs he could prescribe that would knock my symptoms right out. He then told me that I needed another colonoscopy and as soon as I had the procedure he would start treating my problem. I figured that made sense...and the doctor vanished. I went to the nurse to schedule an appointment for the procedure and discovered that the earliest they could do it was A MONTH from that day. Being totally inexperienced with the medical world and overwhelmed with stress from bleeding out my @#$%^ I didn't address this issue immediately.

I thought about this on the ride home and then promptly called the doctors office the next day. Discovered it's impossible to speak to an actually doctor. And, virtually impossible to speak to a doctors nurse. I eventually was able to explain the situation to "Wendy" the nurse. She said she would call me back. Of course she didn't. I waited a day and then called back...enduring the leaving of a message and waiting for that #$% to call me back. She did that afternoon. She informed me that the Doctor couldn't prescribe any meds until he'd seen my information from the GI that did my last colonoscopy. (which she was supposed to have pursued after my first visit). She said she would call them and get the info.

That was 7 days ago. I've since called over and over again to my GI's office. The nurse finally called me and told me that the office with my colonoscopy info had sent everything except the pathology report. She suggested I call them and try to get it because she had tried and they just wouldn't send it. So I called the place....a bunch....left messages....they don't let you speak to humans. Then after explaining my situation to my uncle he starts calling people, (which is great cause I don't know what I'm doing and becoming homicidal). He talks to someone at the other office who tells him that they'd sent the pathology report 4 times the day before and even called to verify that it had been received. My uncle calls my GI"s office. He's good at getting what he wants. Then Wendy calls me and says, "we just got the path report. I'll show it to the doctor." Then the $%^& says, "so, I understand you've been experiencing some bleeding?) I then very rudely explained that I'd been $%^&ing blood for a month and YES that is the reason I went to the doctor and I would really appreciate it if there were anything they could do to help my situation.

She called back an hour or so later and told me I'd been written a prescription for LIALDA . Also I got a scrpt for what I believe to be the same thing but in suppository form. Not one of the 4 pharmacies in the county I live in had the suppository in stock.

So, aside from needing to vent....I would really appreciate it if any of you who are more educated and experienced with UC and the med's I just started taking would tell me what to expect. I'm taking 4x1.2mg pills with dinner. And the suppository soon as the pharmacy gets it delivered.

I know nothing. Literally nothing. I'm in the process of educating myself right now. Please help. I don't even really know what questions to ask.

Is there an IBD clinic anywhere in your area? I used to go to a normal GI and it's very different. In my experience normal GIs don't respond as quickly as IBD specialists. if I were your GI, i would want to do a scope, it's hard to prescribe the right medication without seeing where the inflammation is active - especially after 5 years, it may be very different from the last time you had a scope. I think Lialda plus the suppository are a good start. There is a really good chance things will get going in the right direction quickly. I guess with or without a scope, people usually start with Lialda (or a similar drug) and move on from there. The only thing a scope would tell is if there is the possibility that you need steroids because it's severe but it doesn't sound that way from the symptoms your describe. It would also allow you to know whether the oral drugs are overkill, sometimes the inflammation is just in the rectum and it's treated better with enemas/suppositories. I wouldn't worry about that now, just get going with the Lialda and see how you do. Please keep a relationship with the GI and follow up so you can continue your treatment. UC is an incurable condition and you will need someone you can work with when it flares.

thanks

So I've got to take the medication forever? I was hoping I could treat the flare up and then get off the meds? Is that not a reality?

So, I've been reading a bunch of stuff on this forum...trying to learn.....I must say that I'm not feeling any better. This sucks. As you all know. I was wondering if any of you knew where some somewhat reliable statistics on the various aspects of UC might be found? I'm curious to know the breakdown of what percentages of UC sufferers experience various degrees of the disease. Does it always progress and get worse? Is that inevitable? Do some people maintain a low level of symptoms for long periods of time? Their entire lifetime? I'm hoping to discover that a large portion of the effected population experiences only mild symptoms throughout their lifetime. And they don't post in forums. Like the thread hypothesizes.

Anyone know some numbers off the top of their head? Is this a well known topic? What's the deal?

I'm not going to the emergency room. I can't afford it. And there isn't going to be a GI on duty is there? I'd still just get seen by a regular physician who would then not know what to do and refer me to a GI? I would be skeptical of the doctors in the hospitals' ability to know how to treat me. Especially after my experience with a GI?

I think I need to find another GI. I might continue to see the current one. I actually liked him during our visit. It's just that he thought it reasonable to allow a patient to go untreated and undiagnosed for a month while they $%^& blood. That's hard to reconcile. But who knows how bad the next GI will be.

Are the meds I'm taking appropriate? Does anyone see obvious red flags with this treatment? If these meds are what most any GI would prescribe given my current state of affairs then at least I'm on the right track. I can take my time and maybe find another doctor to see. I'm not dying. My symptoms are way less severe than many of what I've been reading here. I don't see the need to go to the emergency room. Am I right or wrong here?

Should I have started taking medication 5 years ago? I really didn't have any problems. I had to go to the bathroom right away from time to time but I lead a normal life. Had I begun treatment then would I have developed an intolerance to the more mild med's already? Or, would I have been fine and never had this flare up? Has anyone else been diagnosed before without having any issues?

thanks everyone.

donjello said...
I'm not going to the emergency room. I can't afford it. And there isn't going to be a GI on duty is there? I'd still just get seen by a regular physician who would then not know what to do and refer me to a GI? I would be skeptical of the doctors in the hospitals' ability to know how to treat me. Especially after my experience with a GI? Some go to the ER because it makes it easier to see their gastroenterologist quickly, it's expensive. I've never done it.

Are the meds I'm taking appropriate? Does anyone see obvious red flags with this treatment? Your gastroenterologist is following treatment by the book, start with meslamine, anti-inflammatory medications both oral and rectal. It's fine. Just know it is trial-and-error treatment. He/she will follow up with you after a month or so, to make sure you are healing and symptoms nearly gone. If not, then you'll need to have your prescription updated, and given stronger drugs. Doesn't always happen, just sometimes. If these meds are what most any GI would prescribe given my current state of affairs then at least I'm on the right track. For now, no worries, take a deep breath, take your medications, and give them time. If you start backsliding, or your medications don't work, then don't hesitate to contact your gastroenterologist.

Many get to remission with daily oral mesalamines such as Lialda and taking rectal mesalamines on an 'as needed' basis. Here is a recent discussion with another newbie:
www.healingwell.com/community/default.aspx?f=38&m=3365250