Alison is an 18-year-old J-poucher who I ran across recently on YouTube who is just starting a colitis vlog called ToileTalk. Like many others, she suffered with colitis at a young age, had an ileostomy, and now lives with a j-pouch.
She’s kind of silly but has a great attitude in spite of everything that has happened to her. In this video she shows us her scar from the takedown surgery and doesn’t seem bothered by it at all. The first 3 minutes of the video are really all you need to watch. I wanted to show everybody that it is possible to be happy with your body in spite of scars and changes because of surgery.
For those of you who haven’t browsed any of the links on the right side of this vlog, I have a link to fernpixel’s vlog. She’s had colitis for a number of years and mostly keeps it under control through medicine and by following the Specific Carbohydrate Diet (ask her how it works…I don’t really understand).
Anyway, she posted a video recently about prepping for a colonoscopy. We’ve all gone through this at least once and this video shows what she went through. Her preparation was a little different than when I did it, and she was suffering a minor flare up at the time, hence the poor appearance.
For all who want to remember what this glorious procedure is like, watch her video!
Hey everybody, I want to point out a new video that I’m really excited about. Last week Toshio, an engineer from Japan, contacted me about using some of my videos in a Japan ostomy association that he helps lead. One thing led to another, and he has offered to help translate some of my videos into Japanese!
Check out the first video so far. I have no knowledge of Japanese so I can’t confirm how accurate the translation is, but based on the massive number of views this video is getting every day, it seems somebody in Japan likes this video.
If any of you know somebody in Japan who is suffering with ulcerative colitis, pass this video on to them. I know that’s a very specific request that almost nobody can fulfill, but you never know.
To my Japanese viewers: if you stumbled upon this site I send you my greetings. Unfortunately this video is currently the only Japanese translated content on this site, but more videos should be coming. I’m open to emails but unfortunately I can only respond in English.
This video also marks the start of the Translation Project. My videos are surprisingly growing in popularity around the world. Maybe there isn’t good medical information available in other countries? I’m not sure. But up until now the only people that benefited were those who knew English.
Toshio is helping me with the Japanese videos and I have another contact in Barcelona who is helping me with Spanish videos. If anybody wants to help translate these videos into other languages there are three ways you can help:
1. Do the grunt work of downloading my videos, translating them to your chosen language, and then uploading them back onto YouTube for all to see.
2. If you don’t have the capabilities to edit videos, do the hardest work of translating the video into your chosen language, send me the transcript and I’ll figure out a way to add subtitles.
3. If all you know is English, help me transcribe the words of each video into a transcript that can be used by others who know how to translate. Working from a transcript assists greatly in translating accuracy and speed.
Translation is a slow process and not every video will get translated, but anything is better than nothing.
So for those who have found this site useful in dealing with your ulcerative colitis and other bowel diseases, give back and help me out with this new project!
Earlier this week I introduced you to the group Ostomy Lifestyle based out of the UK. They had their first ostomy fashion show recently, featuring models proud of their ostomies.
They have a new video up interviewing one of the models of that show, Krystal Weir. Krystal has Crohn’s disease and has lived with an ostomy for three years now. Watch her video to see that it is possible to enjoy life in spite of an ostomy. Being comfortable in your skin is exactly what I’m talking about with the Gutbending Declaration.
Shire Pharmaceuticals Group contacted me yesterday about a new patient-assistance program currently active through the end of 2009. Patients who are currently on Lialda (mesalamine) or Pentasa (mesalamine) and lose their jobs anytime during 2009 will continue to receive their medicine free of charge or at reduced costs through the end of the year.
The goal of this program is to assist those who are suffering with ulcerative colitis during struggling economic situations. Though the support is currently limited through the end of the year, it is better than nothing, since we all know that ulcerative colitis doesn’t care what we are going through in life when it chooses to strike us.
I don’t have any direct experience with either of these drugs though I’ve had other drugs that contain mesalamine. Both of these drugs are used to treat mild to moderate ulcerative colitis. I’m not sure what the difference between these drugs is but according to Shire over 100,000 people take them and many have already benefited from the patient-assistance program.
Keep fighting,
~Dennis
Question: Do you take Lialda or Pentasa? How is it working for you? Reply to this post or drop me a line!
Ostomy Lifestyle is an ostomy support group based out of Reading, Berkshire in the United Kingdom. One of their main projects is Careline, a telephone service offering support for those going through ostomy surgery.
Recently the group put on a lingerie and swimwear show for people with ostomies. I’ve posted the video from the event for you to see. Hopefully it will show everybody, especially women, that you can be confident and live a happy life in spite of your ostomy.
This might be a tough message for some people to hear but I think they need to hear it. Some people delay or ignore the possibility of surgery because they are concerned with what their appearance will be post-surgery. They have a hard time accepting that they will be living with an ileostomy and have scars on their body.
While I acknowledge the concern, I don’t think it’s valid. Your health takes precedence over your personal appearance. It’s not worth it to let yourself get sicker and sicker just because your body will now look “less than perfect.”
As if living with colitis is an attractive alternative…
Keep fighting,
~Dennis
Question: Do you put too much concern into your appearance post-surgery? Reply to this post.
This video finishes the train of thought established in the first Ileostomy Forever video. Now that I have my j-pouch, I reflect on what it would mean to go back to having an ileostomy. Would I be okay with it after experiencing the luxuries of a j-pouch? Watch to find out!
And this Gutbending Declaration project is just getting underway, but I’d still like everybody who’s had an ostomy to consider making a short video making the Gutbending Declaration and send it to me! This will be a good project, just wait and see!
Keep fighting,
~Dennis
Question: How would you feel if you lost your j-pouch and had to have an ileostomy again? Reply to this post!
Hey everybody, I’m starting a new project today and I need your help! As I’ve mentioned before, many of my visitors are people considering surgery and naturally, they have a lot of questions. For those who’ve had surgery, think back to your state of mind before surgery and you’ll remember you were probably in the same place. And this need for information is one of the reasons I started this vlog, and this quest for information drives the creation of many of my videos.
However, people have needs that extend beyond physical, beyond wanting to know simply how an ileostomy works or how a j-pouch works. They also have emotional needs. I’ve talked to many people who have told me that they have delayed surgery or ruled it out altogether because they are afraid to live with an ileostomy. For many people, an ileostomy is a death sentence and an end to their social life–or so they think. I’ve talked to many more people post-surgery who tell me that living with an ileostomy is not as bad as they thought, and that living with an ileostomy is better than living with colitis.
So this is where the new project comes in. For everybody who has had surgery, please visit the Gutbending Declaration and help me tell the world that life doesn’t end with an ileostomy! It doesn’t matter if you currently live with an ileostomy, colostomy, or j-pouch. Everybody who has had any of these surgeries is compelled to participate.
Basically, if you agree with me that living with an ileostomy is better than living with ulcerative colitis then make the Gutbending Declaration to the world! At the very least comment on the Gutbending page and tell the world that life is better. And if you have the means, make a short video of yourself making the Gutbending Declaration and email it to me. I will collect all the videos submitted and string them together so that we can show those who are considering surgery that life does not end with an ileostomy!
And since this is a vlog there are videos that go along with this project. Today I’m reposting a video I made six months ago that first got me thinking about this topic. For the next two weeks I will release more videos about the benefits and joys of ileostomy surgery.
For those of you on Facebook you might be interested to know that the Crohn’s and Colitis Foundation of America has a Facebook page that you can support. I recommend that everybody with Crohn’s or colitis join this group and voice your support to all your friends that you have IBD and there’s nothing to be ashamed of.
Of note is a new program the CCFA has started on Facebook. Called the IBD Virtual March on the Hill, it gives users a chance to show their support for IBD research by taking a virtual “step.” For each step taken, Shire PLC, a pharmaceutical company, will donate $1 to IBD research. So it’s a win-win for everybody–you click your support on Facebook, money gets donated for research.
At the time of this writing, 1,500 steps had been taken, and the goal is 30,000, so get steppin!
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
