Hey everybody, sorry for the lack of a post yesterday. It was quite the long day doing bloodwork, an MRI, and meeting with the liver doctor about my PSC. Every test and appointment was delayed and pretty soon the day was over and I still hadn’t eaten much of anything yet (not supposed to eat anything before an MRI). For those who’ve never had an MRI, let me tell you, it’s quite the experience.
In the end, the liver tests were quite positive. The damage to my bile ducts is almost minimal at this point and it’s possible that I don’t have PSC, which is good news. Or, if I have it, it’s in the super super early stages, which means that as we monitor it over the years we can hopefully catch it when/if it starts to get worse.
Yesterday’s Stool Count: 8 during the day, 3 during the night.
The Day Before’s Stool Count: 8 during the day, 4 during the night.
It might sound rough in terms of stool counts but again it’s not bad. For the first couple weeks I’m supposed to just go when I feel like it. If I try holding it back I could break the connection in my intestines, which would be bad. So it’s best to play it safe for now and work on decreasing the frequency after Christmas.
Today’s video brings us back to the days of my colitis and the second time I completely lost control of myself. I mention in this video that this second time was perhaps the worst in terms of impact, but in reality, every time you lose control of your bowels it’s the worst time because you start to realize more and more how bad of a situation you are really in.
For those looking for a bit of humor, I came across this great article by humorist Dave Barry about the first time he got a colonoscopy. All I have to say, jokingly, is what a baby! As you colitis and Crohn’s sufferers know, colonoscopies are hardly a big deal compared to other stuff we’ve put up with!
Keep fighting,
-Dennis
Question: Have you ever lost control of your bowels in public and had NOBODY there to help you?
Hey everybody, today’s video is about showering with an ileostomy appliance. It doesn’t pose too many challenges but there are a few things to keep in mind. In the future I have a video about showering appliance-free, but you’ll have to wait for that one for now.
Yesterday’s Stool Count: 11 times during the day, 2 times during the night.
Hey everybody, everything continues to go well with me today. Last night was my first night out of the hospital and it felt great. I slept very, very well, from about 9:45 pm to 8:45 am this morning. And no nurses woke me up at all! I had a roommate in the hospital this time, and my second (and last night) in the hospital, he was vomiting and coughing and farting all night. The nurses kept coming in and they left the bedroom door open and the lights were on and off all night. Needless to say, that night I didn’t get much sleep. But it’s okay, he needed help. He was an 82 year old man who just had a kidney removed.
Nothing much planned for today, just walking around a little to get my strength back. The skin around my scar is really dry and peeling so I’ll put a lot of lotion on it today. To continue with my tracking:
Yesterday’s Stool Count: 11 times during the day, zero during the night.
Now, 11 times sounds like a lot but it really wasn’t that bad. There was never any urgency. And 11 times is quite a lot less than 20 times a day, as I’ve heard some people experience when they first start using their j-pouch. And you have to remember, I just started eating food yesterday. In a couple weeks I’ll do an overview video about stool frequency to give you a better idea about what this stage of recovery is like.
For this week, I have more great videos for you. I have a video about showering with an ileostomy and the second video in my “Losing Control” series.
Continue to send me your comments and questions as I don’t have much to do these days and would love to answer your emails. Let me know where you’re at in your battle with colitis, let me know if you’re in the hospital, let me know any questions you have.
And keep telling your friends about this vlog. Even if your friends don’t have colitis or Crohn’s, but you do, they might find this site useful. It can be hard to explain sometimes what it’s like living with inflammatory bowel diseases, so why not have me explain to them the stuff you might have a hard time talking about?
Keep fighting,
-Dennis
News Story: Occasionally I look for online news stories about ulcerative colitis, Crohn’s disease, or primary sclerosing cholangitis. There’s not much out there. But I did find a nice story today from the Pittsburgh Tribune-Review about a son who donated part of his liver to his mother who had PSC.
Hey everybody, life is going fantastic with me and I can be discharged at any time. I just had my second soft-food meal, so I’m going to wait a couple hours to make sure my bowels are moving fine. But I already have my IV taken out, my drain taken out, my catheter taken out, my medicines prescribed and purchased, so I’m in the home stretch.
I’ll still stay in town here for a few days in case I have any problems. That way I can come back to the hospital and it’ll be easier that way. I also have some liver tests on Tuesday for my PSC (Primary Sclerosing Cholangitis), a disease I haven’t talked much about. In the coming months I’ll talk about my PSC more.
As per Saturday updates, I have another ostomy dream for you. I have at least five more of these ostomy dreams for the future as well. I’m guessing that since I no longer have an ileostomy that I will no longer have ostomy dreams. But will I have j-pouch dreams that wake me up before having to go to the bathroom? Most likely. I’ll let you know.
Keep fighting,
-Dennis
Yesterday’s Stool Count: 3 during the day, 1 during the night.
*Real ostomy dreams before waking up with a full pouch.
I walked into a small auditorium. It had a sloped floor with brown carpet. A large white board was on the front wall. Arranged were approximately five rows of seats, eight seats wide. The seats had plush, red cushions.
I sat down in the middle of auditorium. Fifteen others sat scattered around me. On the floor in front of us was a giant plastic model of a person’s internal organs. I could see the stomach and intestines and colon and rectum. A presenter walked us through the different parts of the body. He explained what colitis was and how it affects the body. He had another model that showed how j-pouch surgery works.
His models, however, were completely inaccurate. Inside the colon were several spiral shell-like structures. Live snails were also crawling around the intestines. The colon was green and was twice as large as it should’ve been. I knew that everything he said was wrong but I didn’t say anything to him.
The audience was very rude to him. Everything he said disgusted them. I knew colitis wasn’t a cool disease and wasn’t fun to talk about, but I didn’t think it needed to gross a person out, especially when these people chose to come to this lecture.
Then I woke up with a slight leak in my bag. It was too full and the adhesive wasn’t holding well. The leak wasn’t very serious, although the front of my shorts was completely soaked in near-odorless stool.
Hey everybody. My third surgery is done and gone! It’s hard to say how things are going and if the surgery was a success or not. But I’m feeling good about it. I reported to the hospital at 9 am this morning but didn’t go in to the operating room until almost 1 pm. What an agonizing wait! The surgery took about an hour or so. I recovered for awhile then came up to my room around 4:30 pm. And now I’m sitting here watching the O’Reilly Factor. I’m having a little bit of apple juice and water sips but that’s all. I have a little pain right now. Later tonight I plan on making a video about what today’s been like. I’ll probably make a video every day I’m in the hospital. So in several weeks you’ll start learning more about what my post-surgery has been like.
And I’m starting a new feature for the next couple months: the Daily Stool Count. People seem really interested in how frequent and urgent j-pouches are, so keep watching as I keep that tally every day.
Hey everybody, in a few minutes I’m leaving for my pre-surgery tests. No updates to give yet, so instead I’ll give you another video!
Today’s video is about the smell that comes with an ileostomy. Some people have different strategies that they use to get rid of the smell. This video goes over what I’ve done.
And even though the background is green, rest assured this video was made months ago and the ground is now covered with snow.
And a further addendum to this video, this video was made when I had an end ileostomy. When I got my diverting loop ileostomy, I realized that a lot of the smell issues went away. Why? I’m not sure. But since I’m only using 90% of my intestines with the diverting loop ileostomy, I’m guessing that the smell doesn’t have enough time to get produced in short intestines. I don’t know if that’s a medically accurate statement, but that has been my experience.
Keep fighting,
-Dennis
Update: I did my tests today and everything with my j-pouch looks fine. Surgery will proceed as scheduled tomorrow. I don’t know what time yet but as soon as I’m able to post an update I will. It’ll most likely be in the afternoon/early evening. And I already have video plans for my experiences from today. Let’s just say having an enema/x-ray was perhaps more tramatic than my awake colonoscopy.
Question: How have you dealt with the smell of your ostomy? How much does it bother you? Did you notice a difference between your end ileostomy and diverting loop ileostomy, if you had both?
Hey everybody, I’ve had my stoma for six months now, and later this week I will depart from it…possibly forever. Many people are all too eager to get rid of their stomas. But I feel a certain attachment to mine.
Keep fighting,
-Dennis
Question: For those going through the same journey, how do you feel about leaving your stoma and starting life with a j-pouch?
*Real ostomy dreams before waking up with a full pouch.
I was living in my house with another man, the same house I live in now. One day a former professor visited and said she was going to stay at my house for a little bit. I said she could and she went upstairs. I didn’t see her very much at all.
The next morning I got up for work and she was in the shower. She was there for over two hours! I looked at the bathroom door, which was more like a back door since it had glass panes for a window, divided into squares. She had the blue and white curtains drawn and her shower was so hot that steam came out from under the door. I grew frustrated waiting for her so I dressed and left for work.
Unfortunately, it was downpouring outside. My house was tiny and white and sat on a gray hill. The sky was gray and the ground was slippery. I ran down the path and mud splashed on my shirt. The coat closet was outside the house, a shallow white square standing upright next to the path, approximately fifty feet away from my house. I ducked into the closet and moved all the hangers aside, taking shelter under the little roof. I kept a spare shirt in the closet so I unbuttoned my shirt and prepared to change. I looked at my stomach, though, and noticed that I didn’t have an ileostomy anymore. I got very worried and wondered what could’ve happened to it.
Hey everybody, one week from now I’ll have my next (and hopefully last surgery). As I come to this point after a long journey, I’m filled with different thoughts and emotions. I’ll discuss tomorrow my state of mind before this big transition from life with an ileostomy to life using my butt muscles again.
I also found another Garfield Minus Garfield comic that matches perfectly what many feel like when they have colitis. Not that I feel like this at this moment…haven’t felt this way in a long time.
