Three weeks ago I was contacted by Salix Pharmaceuticals, a company specializing in treating gastrointestinal diseases, about the release of a new medicine, Apriso (mesalamine). This medicine is intended for patients with ulcerative colitis, and has shown effectiveness in maintaining remission for up to six months.
For those of you looking for other medicinal options before considering surgery, this new drug might be worth checking out.
Here’s what the press release says about the drug:
Salix Pharmaceuticals introduces APRISO (mesalamine) 0.375 g for the treatment of ulcerative colitis (UC). APRISO is the first and only once–daily 5–ASA featuring Intellicor delayed and extended delivery – for the successful long–term management of UC.
APRISO begins releasing mesalamine at a pH ≥ 6 and gradually distributes mesalamine throughout the entire colon. APRISO has been shown to be effective in helping UC patients stay in remission for up to six months.
For use in patients 18 years of age or older. Apriso can be taken with or without meals.
Naturally I’m a bit skeptical of medicine as nothing worked for me, and many of you have told me that nothing works for you. So I asked questions of Dr. Russell Cohen about the exact workings of this medicine. Dr. Cohen is an Associate Professor of Medicine and the Co-Director of the Inflammatory Bowel Disease Center at The University of Chicago Medical Center.
Apriso is taken once a day, usually in the morning, with or without food. It is taken in doses of four 0.375-g capsules. Apriso can be taken with other medicines, but it has shown to be effective as the sole medicine of people with mild to moderate ulcerative colitis.
Apriso is meant as a maintenance drug for long-term use, so other drugs may be needed to get a flare up into remission. Studies of Apriso have shown it to be effective for up to six months, after which time the current studies stop, so mostly likely a person would continue taking Apriso longer than six months if it is working for them.
Apriso is slowly dissolved in areas of the body that have a pH equal or greater than 6, so it is recommended that Apriso not be taken with antacids as antacids will affect the pH of the body.
Clinical trials of Apriso did not reveal any serious risk factors while using the medicine. At least 3% of adult patients on Apriso suffered slight side effects of headaches, diarrhea, abdominal pain, nausea, and cold and flu-like symptoms.
I’m not sure what it means to have diarrhea as a side effect. I’ve been told that diarrhea is a side effect of other ulcerative colitis medicines before too.
Finally, most patients who took Apriso did not see a quick relapse of a flare up, suggesting that the medicine works quickly in controlling colitis. How long should a patient take Apriso is s/he isn’t seeing any results? That’s a depends question, as each person has to make his/her own decision with his/her doctor if results aren’t coming.
So that’s everything I know about the medicine! Salix has a website devoted specifically to Apriso that might give you a little more information.
The best way to manage your health is to have enough information available to make informed decisions.
Intestinal blockages are a common complication after having ileostomy surgery. With the intestines rearranged as much as they are, they are bound to get kinked from time to time. In this video I discuss how to recognize blockages and what to do when you have one.
I had a temporary blockage once and it was very painful until it cleared itself.
Keep fighting,
~Dennis
Question: Have you ever had a blockage and if so, how did you clear it? Reply to this post!
The USA Today ran a story today highlighting 10 veterans who were infected with hepatitis B and C after getting colonoscopies in VA hospitals. Apparently the infections happened because colonoscopy tubes weren’t sterilized properly between procedures.
It’s interesting to know that these things can happen when you go into the hospital for medical care. The article says not to worry about infections, though. Infections resulting from colonoscopies happen 1 in every 1 million to 2 million procedures.
Quite a few people have asked me about the functioning of a j-pouch. Specifically, they want to know: how will they know when to go to the bathroom? Does the body let you know you have to have a bowel movement, or are you constantly in a state of uncertainty about when the next time to go is?
Fortunately, you can put your worries behind you! Your body is usually good about letting you know when you need to use the bathroom.
Keep fighting,
~Dennis
Question: For the j-pouchers, is your body pretty good about telling you when to go to the bathroom? Take one minute and comment on this post!
Sometimes your GI doctor doesn’t seem like s/he has your health in their best interest. While your doctor isn’t the one primarily in charge of your health (you are), sometimes it is necessary to change doctors to one better suited to working with you.
I changed doctors midway through my struggle with ulcerative colitis and it was one of the best decisions I made.
Keep fighting,
~Dennis
Question: Have you ever changed doctors? How is your current doctor working out for you? Comment on this post!
You may remember a while back I shared with you some ostomy supplies that you might want to consider looking at. Well, I have some more products that look interesting and might suit your needs.
In the interest of full disclosure, I have not tried any of these products, nor do I get any money from these companies. As an ostomy educator I think they are worth bringing up so you can make your own decisions if any of these products will benefit you.
Vanilla Blush Lingerie You may remember me mentioning My Heart Ties, a lacy pouch cover for intimate moments. Vanilla Blush works to solve the same need. It’s a line of lingerie, swimwear, bridal wear, and men’s undergarments that serve to help ostomates with their body image. The underwear basically has a hidden pouch inside that the ostomy bag slips in to, keeping it from moving around and hiding it from public view. If you want to see how it works check out this video.
Par-SORB Gel Packets Those who have had liquid output from their ileostomy know how difficult it can be to manage, especially since liquid output is more prone to leaking. Par-SORB gel packets, when placed in a pouch, turn liquid stool into a gel, making leakage less common. Who knew there was such a product? I guess this is a back-end way of controlling stool consistency, compared to the front-end way of using Imodium.
Stomico Ostomy Pliers This is a strange product. Many of you have probably dealt with cut-to-fit pouch barriers at some point in your ileostomy career. Instead of using scissors to cut the opening, why not use a pliers with a specialized cutting disk? This product seems like a luxury only one with a permanent ileostomy could appreciate. The price is steep, and seems to only come with one size cutting disk. Replacement disks are equally ridiculously priced. Definitely not recommended for those with temporary ileostomies, which constantly change their size.
This is all I’ve got for now. If anybody knows of other useful or relevant ostomy products let me know.
I’ve said before, both in videos and in private conversations, that one of the biggest stumbling blocks to surgery is the temporary ileostomy. Many people cannot wrap their heads around living with their intestine outside of their bodies. They fear managing their ileostomy and their physical appearance, and are thus paralyzed into inaction as their health deteriorates every day.
And I say that the second stumbling block to surgery is the supposed frequency that comes with using a j-pouch. People look at the raw numbers–going to the bathroom 10-12 times in the beginning, eventually going 4-6 times a day, going 1-3 times a night or more–and they conclude that having a j-pouch is almost like having colitis again. They’d rather return to a state of perfection when that is no longer possible.
I hope to put those fears about j-pouch frequency to rest with this video. When seen in the proper perspective, meaning, comparing the frequency of a j-pouch to an ileostomy to colitis to a normal person, the supposed frequency of the j-pouch is nothing more than that–supposed.
Keep fighting,
~Dennis
Question: For the j-pouchers, what is your frequency and does it bother you? Answer this post!
The video everybody’s been waiting for: my diet with my j-pouch! Diet is a big concern for people undergoing surgery since, as we all know quite well, ulcerative colitis can really ruin ones diet. Some people are worse off than others in this regard.
Like anything with a j-pouch, don’t assume my route and recovery to be the same as yours. Everybody is different to varying degrees. Most j-pouchers get to the same place in the end, but the amount of time it takes to hit certain milestones (like eating raw vegetables again, drinking carbonated beverages, etc.) is what varies the most.
This video chronicles my first two months using my j-pouch. At the end I talk about how I can eat any food I want. But don’t consider this the end of the story. Soon after I made this video, my stool consistency started to regress slightly, so I’ve cut out raw vegetables and fruits again and will slow introduce them a second time. There will be a second video after this one, rest assured. Plus, I’m still in the stages of learning what time of the day is best for eating and how it affects bowel movements, so that information is forthcoming as well.
Keep fighting,
~Dennis
Question: For the j-pouchers, what has your diet been like? Give us all the details of what works and what doesn’t!
Some people have asked me about the noises j-pouches tend to make. When gas gets in the j-pouch it can make very loud noises, which people around me interpret as hunger pains.
You must still be hungry, they say to me after meals.
I know the j-pouch noises can be very loud. But try not to see them as an embarrassment. Try to view the situation as your j-pouch telling you what to do and how it’s working.
Keep fighting,
~Dennis
Question: Does your j-pouch make these kinds of noises and if so, what do you do about it? Comment on this post!
Hey everybody, I’d like to draw your attention today to Lisa, who has familial adenomatous polyposis (what a mouthful!). This is a disease that causes numerous polyps to grow in the colon, eventually leading to colon cancer. This disease is genetic and over half a dozen people in her immediate family have this disease. When the disease is caught early enough, treatment is similar to treatment for ulcerative colitis, including surgery to remove the colon.
And since it is Colon Cancer Awareness Month, Lisa wanted to draw people’s attention to this disease and to colon cancer. I don’t talk much about other colon diseases on this site but certainly those of us with ulcerative colitis are in this together with those who have other diseases. It’s really all the same, isn’t it? Our colons aren’t working and there’s not much we can do to fix things.
Lisa has two blogs that she maintains, Only for Moms and Mommies to Mommies. Though these sites have motherhood in the name, Lisa assures me they’re for everybody.
Those of us on the inside know the importance of colonoscopies in diagnosing illnesses early (those who have colons still) and colon cancer can be defeated if caught early enough. You’ve all heard the Public Service Announcements on TV that recommend that people over 50 get screened for colon cancer. If you fall into this category, don’t put it off! Colonoscopies really aren’t that bad compared to sickness.
So check these sites out and educate yourself on other bowel diseases.
Many of us have ostomies only temporarily. And many people around the world are in need of supplies. So if you have any extra unused, new, and clean supplies, send them our way!
We are collecting supplies to send to Haiti with a medical team!
Current progress:
1114 bags and flanges
2108 medical supplies
