You may remember a few months back I showed this video from Nadia about the insertion of her picc line. Well, a few months later, she developed a blood clot, and now the picc line needs to stay in for several months until the blood clot dissolves.
In the beginning, she needs the dressing for her picc line changed twice a day for a month. This video demonstrates the entire process of changing the dressing. Very informative!
Keep fighting. Even when we think we’ve won the fight, complications inevitably arise.
~Dennis
Here’s a story from Mayo Clinic’s YouTube channel about a baby that had a colectomy. The baby was diagnosed with Hirschsprung’s Disease which is a congenital disease affecting the baby’s colon. Bowel movements are messed up with this disease, as with all bowel diseases it seems, and the only treatment is surgical removal of the colon.
While this baby had a different disease than most of my viewers, the treatment is relatively the same, and the baby now lives with a reconstruction very similar to a J-pouch.
Those with crafty inclinations might be interested in this unique non-profit the IBD Quilt Project. This group creates quilts with squares contributed by those suffering with bowel diseases, then displays the quilts in a variety of venues across the country.
For those who have suffered with a disease the project gives opportunities to make a square yourself and mail it to them. Finished quilts can then be booked for fundraisers, hospital waiting rooms, outreach events, or group meetings.
This project is just another example of people using their talents to fight bowel disease. For those looking for a way to get involved, you can a) make a square for the quilt (no sewing skills required, they say), b) donate money to help the quilts get sent around the country, or c) request a quilt be shipped to your next IBD-related event to help raise awareness for the disease.
Mayo Clinic, the place I went for my surgeries and treatment of ulcerative colitis, has a fairly extensive video library on YouTube. I found this very informative video about issues with pregnancy and Crohn’s disease.
Now pregnancy is an area I know nothing about as regards inflammatory bowel diseases. And fortunately for me, my viewers rarely ask me questions about it. This video then, while a little long, covers a range of issues to think about, from when the proper time to get pregnant is, what medicines have an effect on the baby, and if Crohn’s disease can be passed on to the baby.
This video specifically talks only about Crohn’s disease, so I have no idea how much of this information is also applicable to ulcerative colitis. I did not find a companion video that discusses ulcerative colitis and pregnancy, though if I ever do I will be sure to let you know.
For further information about how pregnancy works with having an ostomy, check out the Pregnancy and Childbirth section of C3Life.
Keep fighting,
~Dennis
If you don’t have 13 minutes to invest in learning about pregnancy and Crohn’s disease, check out this crib notes version featuring a pregnant mother’s story, also produced by Mayo Clinic.
Apparently there’s something else you can do with your old ostomy supplies besides this.
The Friends of Ostomates Worldwide is a nonprofit group dedicated to giving clean and new ostomy supplies to people in countries that may not have access to these vital medical products. The FOW collects surplus or new ostomy supplies from generous individuals and brings these supplies to other countries periodically. Check their FAQ for details, but if you have plenty of leftover supplies after your takedown surgery, consider sending those supplies their way. Or, donate financially to help pay shipping costs.
Either way, you can’t go wrong donating to this organization. Imagine being an ostomate in a third-world country with limited access to supplies. I don’t even know what they’d do if they ever ran out of supplies.
After surgery, during flare-ups, and during hospital stays, you have a lot of free time in which your goal is not to do anything but get healthier. For those who are inclined to find meaning in life through work and action, having all of this downtime can be very depressing. It’s hard not to feel like a useless burden on society.
However, try not to let your downtime get you down anymore.
Keep fighting,
~Dennis
Question: How do you deal with feelings of uselessness? Reply to this post!
A college guy named David has made this short video about a fictitious musical on Crohn’s disease. At least somebody knows how to have a sense of humor about this disease. [Some swearing in this video.]
The Crohn’s and Colitis Foundation of America recently posted an updated guide on complementary and alternative medicine, outlining many of the practices people with IBD sometimes engage in as a way of keeping their disease in remission. The guide is available here for download.
The guide is short and just gives a brief overview of the options available. It doesn’t go into any detail of how to actually engage in these treatments; that’d take some more research on your part if you are actually interested in this sort of thing. I, myself, never tried any of these techniques as I didn’t know about them. Most of these practices haven’t been studied the same way medicines are studied, so positive results for one person does not necessarily imply positive results for everybody.
Question: Have you tried any complementary or alternative medicine and if so, did it work for you? Reply to this post.
This is what I was doing all last week. This video is a chance to show off some of the great scenery of the Superior Hiking Trail, but more importantly it addresses a concern many people have before surgery: will a J-pouch impact the strenuous physical activities that you used to enjoy?
The short answer is: no! You should be able to return to the activities and sports you loved once you have sufficiently recovered from your final surgery.
I just wanted to drop by and give everybody a quick update on what’s going on with me. Last week I was a volunteer cabin counselor at Camp Oasis, an IBD summer camp for kids. More on that later but everything went fantastic! Tomorrow I’m off to backpack for a week, so I will continue to be out of commission. I responded to a few emails and comments very quickly just now but for those who have sent longer messages I will get to them next week. Keep patient and continue to send me messages about any questions or concerns you have!
On a more important note, sometime this past week the video views for this vlog exceeded 100,000! That’s a fantastic number and makes me very excited. When I first started this vlog it wasn’t as popular, as most things are in the beginning, and I made a secret goal of exceeding 100,000 video views within a year. That was on October 1, 2008. I had no clue how I would reach this number but they say to set your sights high so I did. And now that goal has been reached with two months to spare! Thanks to everybody for all your support with this project, things are going very well and there’s more to come in the future.
To give you some side context, some college friends and I once had a YouTube channel up that featured various comedy videos of our college antics, the kind of stuff you usually see on YouTube. We thought we were pretty funny but I guess not. It took that channel over 3 and a half years to breach the 100,000 views mark. The lesson is: keep your projects focused and targeted at a specific audience, even if it’s a niche audience like the IBD community, and success will come your way.
