Hey everybody, today’s video is a brief summery of the different medicines I’ve been on, mostly post-surgery. The couple ulcerative colitis medicines I was on for the longest time, Asacol and Azathiaprine, I didn’t have any more pills to show you pictures. But you understand the deal enough. Just more pills taken everyday.
To all you med heads out there taking 4 to 12 pills a day, I know what that’s like and I hope it keeps you in remission. But man, that’s a lot of pills for the rest of your life. If they ever fail you, consider surgery.
Keep fighting,
-Dennis
Question: What medicines have you taken and what effect did they have? Did they work to keep your colitis in remission? What kind of side effects did you have?
I mentioned yesterday that Hollister has videos on their site under the label “Ostomy Educational Theatre.” I’ve looked through roughly half of these videos so far, and I have to admit I’m a little disappointed. The first 19 “modules” deal with ostomy pouch systems and what the different types are and how you change a pouch and everything. I guess they are educational, but they are exceedingly “sterile,” and by that I mean, very neat, very clearly spoken, lots of pictures of pouches on white backgrounds, light elevator music in the background, etc. Kind of like the videos you used to watch in school but never paid attention to.
I did learn a couple things, though. Like about urostomies. These basically take your pee tube and put it through the abdominal wall so your urine empties into a bag. Apparently, Hollister has a nighttime set-up where the patient can attach a long tube and large bag to their urostomy so they don’t have to get up in the night. Hollister, if you can develop something like that for ileostomy patients, I would pay handsomely for it because I do not like getting up at night to empty my pouch.
But the criticism. The educational videos show the stomas of three or four different people. We never see the peoples’ face or hear their stories, hence adding to the “sterility” of the videos. Also, when these people put on their wafers, the hole they cut to go around their stoma looks too small. They literally force the stoma through the tiny hole to get the wafer to their skin. I know there are no nerves in the stoma but it looks painful.
I’m sure these videos are useful to some people, and I suggest you check them out if you are considering surgery, but they’re too little for me. If anybody from Hollister peruses this site, hook me up as a media consultant for your company so we can update your videos.
The second half of their videos looks like they get a little more into the personal stories of people, so I’ll tell you how those videos are once I’m through them.
Hey everybody, today’s video is just as the headline says. No trickery here.
Hollister, the largest supplier of ostomy supplies in the United States, has videos on their site about how to manage a stoma. Since I’m kind of partial to this video thing, I’m in the process of watching all their videos. I’ll give you a full report tomorrow on if they’re any good or not.
Keep fighting,
-Dennis
Question: How have you been driving with your ileostomy?
For those who’ve been in the middle of a bad flare up, you know exactly what I am talking about with this video. For those on the outside, we UCers try to hide that these unfortunate accidents happen, as you can maybe imagine after seeing this video.
For the record, losing control is far worse than breaking a bag.
Especially when you never envisioned it happening to you.
The “pt. 1″ signifies that I didn’t lose control just once. Some day I’ll tell the rest of these stories. And there are more than 4.
Keep fighting,
-Dennis
Question: How bad did your colitis get out of control? Did you have any mishaps in public? What did you do to get out of the situation?
As promised, stories about the times my ileostomy bag has broken. I went three months between my first and second surgeries with no mishaps…and then I slipped. Maybe I got lazy. I don’t know. Try as you might, most of you ileostomy wearers will probably fail at some point with keeping all your stool inside the bag. But I think you’ll be a better person for it when you do.
Keep fighting,
Dennis
Question: Has your ostomy bag broken before? Where were you when it happened and what did you do?
Speaking of Hollister, they are the company dominating the ostomy care product market, as far as I can tell. They’re good people and make good products. But listen to this: in their FAQ section in the Ostomy Care pages, there is a category for “Lifestyle Issues.” A whopping one question drops down in this section, which asks, “I am starting back to work soon and I am wondering about emptying my pouch in a public restroom. Any tips?” First of all, the English and grammar nut that I am doesn’t like the phrasing of “am starting back to work soon” but let’s ignore that. The real problem is the answer Hollister gives: “Being prepared is most important. There are tips to help make the process easier. Also, you may want to think about an odor eliminator if you are concerned about odor.”
I don’t know about you, but that’s the lamest answer to such a question! The questions asks for tips, and then the answer says, “There are tips to help” but doesn’t give any! If Hollister had asked me to answer this question, I would say:
“Public restrooms give you really horrible, onion skin thin paper. Take ample amounts of paper and set it aside to wipe off the ends of your pouch. Then take about ten feet (literally! I’m serious!) of toilet paper and roll it into little swabs. Do that at least two times so that you have enough toilet paper to absorb the extra stool. Go into the handicapped bathroom stall to give yourself more room to work with. And have pride in your ileostomy and don’t worry in the slightest what others think because the people you meet in the public restrooms you’ll never see again in your life.”
Maybe that’s a little wordier than their answer but I think it works just fine. The questioner wanted tips so give them tips, Hollister!
In all seriousness, when I was coming back from the hospital after my first surgery, I stopped at a gas station to empty my pouch. The gas station had one stall and a man rushes in and needs to use the toilet semibad (nothing like I or fellow UCers have experienced though, right?). So he says to me, “Hey man, are you almost done in there?” And I knew somebody was going to do this and lucky for me it was my first public restroom experience, so I said back to him, “I just had half my intestines taken out a few days ago so it’s going to take me a little while before I’m done in here.”
I was just being honest but it shut him up quick enough.
Stomas are tricky little things. Not only do they expel your waste, but they do it so that you can feel it and hear it. They can be quite irritating at times but also fun and humorous. Some people name their stomas. I don’t do such things.
It’s possible that my j-pouch will fail someday. It’s possible that medicine fails someday. And it’s possible that I could have an ileostomy for the rest of my life. And what would that look like? This video (8:11) is how I feel about the notion.
Keep fighting,
~Dennis
Question: How would you feel about having an ileostomy forever? If you have a permanent ileostomy already, how do you feel about that?
In the short time since I’ve started this vlog, I’ve been in contact with so many people who have ulcerative colitis. People who have had surgery years ago, people who recently had surgery, and people who’ve had the disease for years. And most people’s stories, it seems, follow a similar tale. The person is diagnosed with ulcerative colitis. They have a few problems and muddle through it for a few years. Then the disease gets worse and medicine begins to fail them. They suffer with the disease in a near constant flare up for several years, finding relief nowhere. This video is for them.
Keep fighting,
~Dennis
Question: How much suffering will you put up with before having surgery? What is your breaking point? Please leave a comment!
All that waste that your body generates has to go somewhere, and I do mean it’s a lot of waste. Way more than you’ve ever produced before, by volume. Fortunately, emptying the appliances is one of the easiest aspects of managing it.
I’d like to thank everybody, too, for making this site such a success. The handful of videos I’ve uploaded have been viewed collectively over 750 times, and the site itself has been visited over 250 times. Many people have already talked to me about their colitis and their plans for surgery or further treatment, and that’s fantastic. The site’s only been here half a month! Imagine where it’s going to be at the end of the month!
If you have colitis or know anybody who does, pass on the word about this site for me, will you? Thanks!
Keep fighting,
-Dennis
Question: How do you empty your ostomy pouch? If you have a colostomy, how do you empty it?
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
