Camping and Colitis

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!

Comments

Post a Comment

Popular posts from this blog

Taking Lialda now instead of Asacol

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...
Read more

6 Years later and doing great on Remicade

I have not posted in this blog for almost 6 years!  Time for an update. For the last two years I have been 100% in remission.  Something I thought would never exist for me. I take Remicade every 8 weeks by infusion and my oral anti-inflamitory drug is Lialda. I also take  Omeprazole  (Prilosec, Zegerid)  for my stomach acid and 5mg of Paxil for Anxienty about having UC. (like with long road trips) but I'm doing so well I'm not sure I need it, but what they hell.. the dose is low and the drug works and is cheap. In 2014 I got Skin Cancer on my bald head.  They had to cut it out. No Chemo and no side effects luckly. Ever since I have been getting non-cancer lesions on my hands and arms that I have frozen off every 6 months.  Usually about 5-10 per visit.  The doctors think that Azathioprin (aka Imuran) caused it, so they took me off that and there has been no problem with me being off it. Remicade has been working great for me for some...
Read more

Lialda Bump Helps

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.
Read more