Lots of views so far on my Day One video, so to follow up, as promised, Day Two. If you notice, in these hospital videos my voice doesn’t have as much pep or energy as usual, partially because I had a roommate who I didn’t want to bother, and partially because I was still kind of tired after surgery, as you can imagine.
And a minor update, yesterday this site broke the 5,000 view mark since launching and the videos broke the 14,000 view mark since premiering. Thanks for all the support so far! Keep telling your friends and family about this site.
And if anybody has any questions about life post-takedown surgery, don’t forget to ask me!
While casually surfing the Net for information about IBD’s (funny how your interests change when you have such a disease. I used to peruse Dragonball Z websites) I ran across the CH.I.L.D. Foundation, a Canadian support site for Children with Intestinal and Liver Disorders. I’m sure there are such support groups in the US for children, though I can’t ran across any yet. For my Canadian viewers it might be worth checking out.
One thing I wanted to call attention to is the children’s “Story and Colouring” book the site offers, Jeff Talks About Crohn’s Disease. The foundation will send a copy of the book free to anybody, even here in the US. Parents who have little kids with IBD’s might find the book useful.
The book tells the story of 6-year-old Jeff and how he discovered he has Crohn’s. The doctors do bloodwork, an endoscopy, and x-rays. Then he modifies his diet, meets with his doctors regularly, and stays active. The book is general enough that the same steps Jeff goes through could easily apply to a child with ulcerative colitis, the only difference being that a colitis kid would undergo a colonoscopy instead of an endoscopy.
I don’t know much about children’s education so I don’t know how helpful this book is. It’s very vague about what Crohn’s disease actually is. It makes zero mention of bowel movements or problems or pain, which I found interesting. There’s still value in it, though.
Keep fighting,
~Dennis
Question: If you have a little kid with an IBD, how do you explain the disease to him/her?
Hey everybody, I felt so good the day of my takedown surgery that I decided to make a video. This will give you an idea about what condition you might be in after your takedown surgery.
Keep fighting,
~Dennis
Question: How did you feel the day of your takedown surgery?
Hey everybody, I found a couple interesting ostomy products while surfing the web that you might be interested in. I haven’t tried these products myself so I don’t know how good they are, but maybe someday I’ll wear my ostomy bags again and test out some different products, after my wound heals of course.
My Heart Ties This little heart-shaped pouch cover is intended for women and intimacy. These hearts come in a variety of colors and are trimmed with lace and all sorts of other feminine details. At $45 a pop, these little hearts might be spendy, but so are ostomy supplies in general. I know many people stop dating when they get their ileostomy, but for those in some kind of relationship it might be worth looking in to.
Ostomy Armor This is a rough and tumble product for active people. Invented by a soldier, ostomy armor is a protective shield that completely covers that stoma and pouch, allowing for a total range of movement. For people who are running around and banging their stoma on hard surfaces, this product might be for you. The website isn’t the most professional looking but apparently this product is starting to make waves in the ostomy world.
That’s all for now. If I find any other unique ostomy products out there I’ll let you know.
This week I have three new videos for you about my time in the hospital following my takedown surgery. I brought my camera into the room with me to record my thoughts and condition as I was recovering so those of you waiting for your takedown surgery know what to expect. They should be entertaining and informative, as always.
*Real ostomy dreams before waking up with a full pouch.
I was in the jungle with seven or eight of my friends. We traveled down a raging river on large skis. Two people each stood on a pair of skis, thirty feet long, and glided down the river, one person in front of the other.
When we reached our destination, we all fell in the water and took off our skis. My friends wanted me to lead the group through the jungle because my ostomy pouch repelled dangerous animals. We walked through the jungle for a long time and carried the skis with us, which kept catching on the thick foliage.
Later a large tree blocked our path. A long brown snake wrapped itself around the trunk. The snake didn’t attach us because my ostomy pouch sedated it, but we couldn’t pass it either because it might still attack. I took the end of a ski and bashed the snake’s head against the trunk. My friend handed me a pocket knife to kill it. When I tried to attack the snake it moved out of the way. Eventually I struck the snake, then a second snake appeared and I killed that snake too.
We exited the jungle and returned to our large cabin. Somebody had started a campfire on the living room floor and didn’t extinguish it before we left. I got upset about that. Somebody also didn’t wash the dishes before we left on our expedition and that upset me too.
Then I woke up at the time I usually wake up to empty my pouch, between 2:00 and 3:00 am. My pouch was puffed up with air but not much stool because the stool was very thick. I got rid of the air and went back to bed.
Hey everybody, I’m back after a very good Christmas this year. I hope all was well with you. I know what it’s like to miss a major holiday because of colitis (Thanksgiving in my case) so hopefully those of you who missed Christmas didn’t get too down.
Stool Count Three Days Ago: 7 times during the day, 2 times during the night.
Stool Count Two Days Ago: 5 times during the day, 2 times during the night.
Yesterday’s Stool Count: 4 times during the day, 1 time during the night.
Looking at this record, it appears that my j-pouch is doing very well! And only two weeks out from surgery. However, one thing to keep in mind is that the last two days have been holidays, which means my eating schedule was thrown off. We’ll see how much frequency I have the next few days as I get back to my normal eating schedule.
And another new video today! Another ostomy video, this time about a curious situation that I found myself in some days upon waking up in the morning.
Keep fighting,
~Dennis
Question: Do you ever wake up with problems with your ostomy bag?
Hey everybody, lots of snow in North Dakota today! I hope all is well in your part of the country.
Yesterday’s Stool Count: 8 times during the day, 3 times during the night.
Remember, I’m purposely going when I feel like it and not using Imodium. Things will get better later.
Keep fighting,
~Dennis
*Real ostomy dreams before waking up with a full pouch.
I woke up the day after my birthday. My parents or friends had given me a new set of ostomy pouches that they thought were better than the ones I was currently using. And I was already wearing one! I don’t know if they put it on in my sleep or if I forgot that I put it on. I didn’t question how it got on.
The pouch was full so I went to the bathroom and emptied it.
The problem, though, was that I could not figure out how to close it up again! It was an incredibly complicated system. The pouch had two openings for waste to pass through. I rolled up one end and closed the snaps and tied the strings and did all the different fasteners, but that only closed it on one side. Then I undid everything and tried to close the other side. I struggled with it for many minutes and didn’t know what I was going to do because I couldn’t figure out this pouch at all.
Hey everybody, today’s video is about exercises my surgeon suggested I do while having the ileostomy. It makes sense, right? If I wasn’t going to be using my butt muscles for over six months, they’d start to lose their strength. Now I know that not all surgeons tell their patients to do these exercises. I suppose if you only have an ileostomy for 2 to 3 months you might be able to get away with it. But I seem to be one of the few people who did the surgeries in three stages over a longer period of time, so the exercises made sense to me.
And now that I’m using my j-pouch for real, I understand the importance of these exercises. It really is hard to hold things back when the j-pouch first starts filling up.
Yesterday’s Stool Count: 7 times during the day, 3 times during the night.
Slight improvement.
Keep fighting,
~Dennis
Question: Did your surgeon mention doing these exercises?
Hey everybody, I hope things are going well for you and you’re getting ready for Christmas. I’m doing great and feeling a little better everyday. When you’re recovering from surgery, it’s important to keep your goals in mind and not focus so much on the day-to-day trials.
Yesterday’s Stool Count: 8 times during the day, 4 times during the night.
No improvement yet.
Tomorrow’s video is about some exercises that are important to do following j-pouch surgery.
And for those of you in the middle of a flare up right now, do you ever feel like poor Jon here from Garfield Minus Garfield?
Sometimes the urgency can be overwhelming, as my video from yesterday so perfectly reflects.
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
