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!
If you’ve been hanging around the IBD community for awhile you’ve probably heard of the Take Steps walk to raise money to fight the diseases, sponsored by the CCFA.
Here’s a story of a teenager who went beyond what anybody else was doing. Alison Kolbert, 15-years-old, raised more than $8,200 for the Connecticut event, more than anybody else participating. The lesson is obvious: if a kid can do this much good then there’s no excuse why we can’t as well. And I include myself in the category of “Doing More to Raise Money.”
David Garrard, a professional quarterback for the Jacksonville Jaguars, has Crohn’s disease yet continues to live his life and play football. Like most people, when he was diagnosed with the disease he knew very little about it and how it would affect his life.
In this inspirational video Garrard talks about what it’s been like living with the disease and how he manages it. Garrard is also associated with the website Living with Crohn’s Disease. Last fall he participated in a fundraiser called In the Zone for Crohn’s in which $10,000 was donated for every touchdown he scored. The program raised $170,000 for IBD research.
While most people with inflammatory bowel disease aren’t famous like Garrard, everybody helps the cause by telling their stories to others. As you may know from personal experience, not knowing anybody with these diseases can really make living with disease difficult.
Here’s a sad story from the Kansas City Star. A 13-year-old girl Caity Flanagan recently underwent intestine surgery to remove 16″ of her small intestine. This poor girl has been suffering with Crohn’s disease since a very young age and has been so malnourished because of it that she appears trapped in the body of a 7-year-old. Since she wasn’t responding to growth hormone therapy, surgery was the last option to try and capitalize on her crucial growing years.
Affects to growth is a side-effect many of us adults are completely oblivious to. I spent a week at Camp Oasis and knew of several kids who had to give themselves growth hormone shots every night because IBD had stunted their growth as well. It just shows how terrible these diseases can sometimes affect other areas of our lives.
A few days after the first story was written, an update on Caity’s recovery was posted on the same site.
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.]
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
