Ed's Ulcerative Colitis

In my last post I talked about bumping my dose of Lialda from 3 to 4 and how I didn't feel any different.  Well, I didn't give it enough time.  It did help after about a month or 2. Like anything thing else, sometimes the key to feeling well is to also make sure I watch the trigger foods especially when I feel a flare coming on.  For me that would be anything with Hershey's syrup in it, or instant cocoa.  Starbucks Bold drip coffees seems to be a trigger for me too.  It also doesn't help that they upset my stomach and that may be part of it. Next week I have an infusion and then 4 days later fly to the Grand Canyon for a week.  Just in time for Vacation!  No hiking to the bottom of the Canyon for me.  Hiking always seems to move things along at the wrong time.  This is also why being a Cub Scout Den leader for the last 4 years has been hard.

It's been kind of a crummy UC month for me.  Lots of flairs and still 6 days left until my next Remicade infusion. I went to see my GI Doctor and he bumped me from 3 Lialda a day to 4. That was 6 days ago and I don't feel any different. I'm spending lots of time this month soaking in my garden tub with really hot water.  This seems to calm the cramps. A Friend of my Moms who has Crohns went and got a assemble-yourself Sauna in Seattle for the same reason.   Here is the site: http://www.qualitysaunawarehouse.com/ They have a 2 person model for under $999, but I'm going to stick with the garden tub. The company that I work for is changing my health care plan and now I have a 10% copay and HRA (Health Reimbursement Arrangement).  I think that this means that instead of paying $40 per infusion, I'm going to get hit with a huge bill until my out of pocket is used up.  (Out of pocket per year max is $1700 for me)  There is a program called Remi...

Well, it's infusion day and I'm heading over to the infusion center in Tacoma, WA at Digestive Health Specialists to get my Remicade. Things have been well over the last year. I'm still on Lialda, Remicade, and azathioprine (Imuran) and they seem to be working well. I have been on a combination of the 3 (Asacol before Lialda) for almost 4 years now. I still see blood in every stool (not much), but other than that it seems stable. I still have to pace myself. I like to hike in the summer, but I always have to visit the bathroom before I do since walking seems to move things along for me. We got a trailer for camping last year so that when we drive 3 hours to a campground I can feel at ease knowing I'm towing a bathroom behind the truck! Sure is nice not to have to hike to a bathroom in the middle of the night to pee!

I have been on Lialda for over 3 months now and it's working fine without any side effects. When I was on Asacol I always missed at least one does a day. Now I never have to worry since I just take Lialda when I get up. I don't really notice that I'm "better" than I was with Asacol, but it works and I might be better by like 5%. It's really hard to gauge since things change day to day for me and are based on what I eat. (Starbucks is the monkey on my ass) It seems to me that I take it in the morning and it doesn't kick in for a while. I'm tempted to try some Asacol that I have a night and see if it help in the morning. That would be interesting since I have some asacol left over from before I got Lialda.

I got an email from Lisa asking me about some of my experiences with diet, Remicade, and dealing with the bleeding. Here is my response: --------------------------------- Hi Lisa, Nice to hear about your story. You are the first person I have ever talked to with UC. I see people at the infusion center, but they have walls between us, so I don’t get to talk to anyone. Let me put you at ease a little. Remicade is nothing. I’m used to the IV now and I actually enjoy my infusions since I get to watch TV for 3 hours without guilt. It’s been 3 years and I have never seen a side effect. If you’re as lucky as I was, you will get to taper off prednisone very soon. One warning.. the first time I tried to taper off prednisone (before remicade) I went too fast and ended up in the hospital. My mistake was assuming that all the “side effects” were from the colitis and they were actually from the lack of prednisone. The taper the 2nd time was easier since I had remicade to help. I’m currently on ...

After taking Remicade for a few months I stopped taking Asacol since I thought I didn't need it. After a few months I noticed that my colitis slowly got worse. I told my doctor and he decided to up my dose of Remicade. Since I work for a company that is self insured, I didn't like the idea of my infusions going up an additional $3000 per dose unless it worked. After about 3 infusions it was clear that this was not helping. This was around the summer of 2007. At this point I decided to change doctors and my new doctor gave me a fresh perspective. He increased my dose of Imuran to the max for my weight and put me on Asacol again. It worked! Things got better. So at this point I asked my Dr. to move my dose of Remicade back to the former level and the Dr. approved it. The reduction didn't have any negative effect, so I have stayed at that level ever since. Now about Lialda. I heard about it on TV during an interview of a woman who said she was taking a drug for UC just o...

I went on Remicade 2 weeks after it was approved for UC and it has been like a miracle! I felt better within 24 hours of the first infusion. Within 3 days my bleeding was almost completly stopped. Within a week I started to taper off my Prednisone. The 2nd infusion was 2 weeks later and it's been a total of 3 weeks now as of today and I feel great! My system is healing and I can't believe how well this has worked. I feel like I am about 80% in remission. I will say that it is 100% when I get off all the drugs. Hope fully in about 3 months. (Slow taper off prednisone where I was at 60mg/day) I have no side effects what so ever. Hope you can get this treatment approved for your UC! I'm getting my life back!

If you have not had this yet, don't panic. It's not that big of a deal. The worst part for me was the prep. It tasted bad and I spent the whole prep time in a recliner next to the bathroom watching TV waiting for the next call (or scream in my case) of nature. I was already in bad shape so I was in the bathroom ALL THE TIME! I don't think normal people have this problem, at least I hope not. I hate getting an IV in my arm, so that was the worst part of the day for me. That and praying that I would make it to the office without having to stop and use a bathroom. I was awake the whole time, but it was like being really high. Your just really easy going and you don't care about anything, you might even go to sleep. The air that they pup in there makes the colon larger so that they can see and move around, but it feels like you have to go.. so I had a little panic there until they explained that to me. I don't remember the trip from the exam room to the waiting area, bu...

When I first got diagnosed with UC the doctor put me on Asacol. The first 3 weeks it made me really sick. Peppermint mentos seemed to take the nausea away the best. Now they have no negative affect on me what so ever. I can take them any time, with or without food. I was taking Metamucil caps when I thought I had IBS because that will absorbe the water in the colon. But after I went on asacol I found that all it did was bulk up my stool and make it more painfull as it passed through the colon. If you are taking Metamucil for IBS or UC, save yourself some money and go to GNC and just get some psyllium husk caps. They do the same thing and cost much less. Psyllium Husk is the main ingrediant in Metamucil. Before my diagnosis my family practice doctor gave me a prescription for belladonna to stop the cramps. This works great. It also help with the urgency caused by the cramps. I'm off them now since I don't have cramping anymore, but I still have urgency problems. Just an ...

How I think I got Ulcerative Colitis In September 2002 I moved from Waco, Texas to Seattle, Washington and my buddy and I rented a truck and drove cross-country with my stuff. I still believe that somewhere on this trip I ate or drank something that gave me Ulcerative Colitis. One thing that stands out is the rustic cabin we stayed in near Yellowstone that was part of Buffalo Bill's hunting cabins back in the day. Was it the sulfur content in the Yellowstone water? Who knows. When I noticed abnormal visits to the bathroom Soon after I moved to Seattle I noticed that I was visiting the bathroom more often. I also noticed mucus and I thought that I must have picked up a tapeworm or something like that. I went to visit the doctor and he gave me a parasite test kit. That's when I noticed trace amounts of blood. The test came back negative and the doctor said I had IBS. He never mentioned a colonoscopy. Should have got a colonosopy After about 7 months it continued to get worse. Urg...