The United Colon Vlog » Stories

A Journal Entry By Nadia: The Squatters; A Metaphor

Nadia — Sat, 10 Apr 2010 18:04:05 +0000

There are a lot of ways that I use humor when I dealt with this illness. Weeks in the hospital with long hours with nothing to do but think and watch Trash TV makes your mind make strange detours down odd paths of thought. I started imagining what happened to my colon and the reason I was ill as metaphors for things in life. One such time my mom and I began to make up stories and I would like to share the meanderings of one such time…

The Squatters:

Squatters moved into my colon today. They didn’t come in with good intentions and since they didn’t own the place, they had no respect for the nice environment it started out as. Now, my colon was no multimillion dollar beach front property but it was pretty nice. Well, it was irresistible to this group of rotten infected squatters that moved in and just took over. They moved in all their broken rickety furniture and nailed all kinds of things to the walls. They tried to remodel with pick axes and sledge hammers, got lazy and left the place in shambles. They partied all the time and trashed my entire colon. They put their cigarette butts out wherever they wanted and burned holes all over the place. I think they made my sigmoid the party hall, that place was unrecognizable after years of their hardcore partying. I imagine they invited all their friends. The kind of friends that couldn’t care less about anything. These were a group of wild raging maniacs that ran around like savages in my belly. Many times I sent investigators in with cameras to inspect the damage, maybe up to 10 times, but those sneaky trespassers were so tricky and hid and lurked in the dark waiting for the investigators to withdraw. When they were out of danger of being spotted, they attacked again!!!! I asked them to leave, begged them even, but they never listened to me. They laughed at me and swore at me and harassed me day and night. They twisted me up inside…made me feel like I was going crazy. I tried everything. Finally I gave up, it came to the point where my colon had to be condemned as it was deemed unlivable and severely substandard. It became a hazard to continue to lie in the same state and was affecting everything around it. An assessment was done to see if there was anything salvageable before the removal. But it was ruined. So I had hired a contractor, Dr. Ludwig, to oversee the demolition. It had to go. Reconstruction was the only option. So it was wiped out. Completely demolished…..It would be relief to see those squatters evicted.

They didn’t use a wrecking ball for the deconstruction, or explosives. Instead, they methodically planned the removal of the old and reconstruction of the new to be done in a two step operation. It all sounded very professional and agreeable to all parties that this was the only way to get rid of the problem squatters once and for all. They had to be eradicated and this was the only way. So a team moved in and in 10 hours everything was demolished and rebuilt into something brand new. The design of this new place was quite different than the old. It was a lot smaller but cleaner and a more healthy environment existed and replaced the old run down slum. That’s right, my colon was the slum! The clean up crew came and took care of everything, and I am feeling better everyday!

What ways do you use to cope with what’s happening to your body?

Lisa from Ostomy Secrets tells her story

Dennis — Mon, 29 Mar 2010 11:52:41 +0000

Our friend Lisa over at Ostomy Secrets has a new story up on C3Life.com about the challenges of living with an ostomy after her surgery. She also talks about the difficulties of being a new mother after having surgery, but also how she’s overcome some of these roadblocks and has gone on to help others living with an ostomy.

It’s a very touching story…the perfect way to start off the week!

Keep fighting,
~Dennis

Dennis’ Trip to Wisconsin

Nadia — Sat, 20 Mar 2010 17:21:59 +0000

As most of you might know, Dennis made a road trip to visit me in Wisconsin. There was a lot of planning and a lot of anticipation before his visit. We only know one another from the UCVlog and Youtube, so sight unseen we decided to give this a try in order to provide everybody in our UCVlog community with some great videos that touch on the female and male perspective of IBD, Crohn’s, Colitis, Ostomies, and J-Pouches. When Dennis arrived, we got right to work, and like he said in his C3Life blog, we had very little time together, so we had to be very productive with what time we had. We had preplanned our video ideas prior to his arrival and spent the first night finalizing our videos for the next day. We just hung out and got to know each other more in person. Dennis posted a video on what he was able to eat a few days before he arrived, so I took notes on what to buy at the grocery store! Since we both like pizza we ordered pizza the first night. Getting to know one another in person was very enlightening. Dennis is exactly the way I pictured him to be, with a good sense of humor, and he laughs and smiles a lot more than you all may think. My family also was able to get to know Dennis a little more as well. My daddy even entertained us with his comparison of professional camera equipment to ostomy bags. It was so far out there that we had to laugh. That’s my dad for ya! Everything has to tie into professional photography with him. One thing that was really comforting, is that when sitting and talking to Dennis, I felt there was a deep understanding about one anothers’ illnesses. I belong to a support group in my community but everybody is older than me by decades. It was really nice to sit down in person with him and talk about everything and understand exactly what each other has gone though. I never had that before. I find it easier to talk to him because we see this illness from the same perspective and we can relate to one another’s feelings. It helped me realize what a great tool this UCVlog is for so many people. It helps us all to connect with others,-male or female-that are in our same age groups. Regardless of age, this community is a great resource to share our experiences.

We spent Sunday taping all our videos at my daddy‘s portrait studio. I haven’t worked that hard in a day for a very long time. We set up 3 different cameras, because Dennis HAD to get the angles! It was such a good idea because the videos turned out great! We can’t wait for you all to see! Sunday we were able to make several videos that we will be posting over the next month or so. I’m really proud to partner with Dennis on this project. Dennis is truly dedicated and goes out of his way to provide a great tool for all of us who are dealing with IBD issues. Our topics cover a lot of issues and we hope to do this more often. I found interacting with him on camera much easier than I thought it would be!

By Sunday late day, we decided to take a little tour around Green Bay. Be sure to check out our Facebook fan page for photos of the visit! We made a stop at Lambeau Field (home of the Green Bay Packers), and stopped to enjoy the sight at Lake Michigan. All in all a very successful and enjoyable visit. I never asked Dennis whether supper that evening agreed with his system! My daddy made Murgh Aloo, a Pakistani potato chicken dish. He didn’t complain, so it must have been ok!

Overall it was a wonderful weekend of making videos and working on this together. So stay tuned as we unveil our hard work each week. Give us your feedback and we hope to make more videos together in the future! Thanks so much!! We all have to stick together.

“I’ve always thought that people need to feel good about themselves and I see my role as offering support to them, to provide some light along the way.” ~Leo Buscaglia

~Nadia

Incontinence and a Fear of Public Bathrooms: A Journal Entry By Nadia

Nadia — Tue, 09 Mar 2010 13:58:48 +0000

I would like to share a personal story with you. Right before I had my proctocolectomy/jpouch surgery, I lived life scouting out every bathroom wherever I went. It became my way of life. My ritual was that I would arrive to a location-a mall, a restaurant, the grocery store- and the first thing I would do is tell my mom, “I will be right back, I have to find the bathroom.” I knew which exits to take on the highway on the way to the hospital for doctor visits that had the best and cleanest bathrooms because God forbid on top of having this illness, you have to deal with the horrific public bathroom phobia like I have! I can’t stand the bathrooms with no toilet seat covers and when I have to place toilet paper over the toilet seats. The last thing you want to do when you have extreme urgency is line toilet paper perfectly on a toilet seat so you can sit down on it without the worry of germs, but for me it was a must! I don’t like when bathroom stalls have broken locks on the doors or when I have to stand in line waiting for the person to get out of a stall. Often times, if someone was with me, I would ask them to turn the faucet on full blast or flush the toilet in the stall next to me 3-4 times so I had a few moments where I didn’t have to worry someone would hear my bowel noises. The greatest hope is wishing no one was in the bathroom when I got there so I could be free to be me on that toilet! It was the nature of the illness, I couldn’t go anywhere if I wasn’t confident that I had an escape or a backup plan.

One time on the way back from Milwaukee when I was having a major flare, I had to get to a restroom QUICK- but it wasn’t fast enough, and it was disastrous for me and my mom. I was completely incontinent… As we sat in the car cleaning everything, I knew then and there I could not live like this. Who at my age as a teenager has this happen to them?? I had no other clothes with me to change into, so my mom took off her jacket and fashioned a skirt out of it to cover me. I wasn’t prepared for such an accident, and I learned never to leave home without an extra change of clothes. I remember that day, through my tears we laughed and cried over all of this, but I ended up crying silent tears the rest of the way home hoping somehow I could get saved from this humiliation. This wasn’t the first time nor the last time that I had an incontinence accident. When someone is suffering from Crohn’s, Colitis, or IBD it can happen and can’t be helped. To this day, it’s still my ritual to find a bathroom in every public place. Old habits die hard.

“How long a minute is depends on what side of the bathroom door you’re on” -Unknown

~Nadia

A Bathroom sign for the Desperate.

10-year-old Girl Raises Money for CCFA

Dennis — Thu, 18 Feb 2010 19:53:47 +0000

Here’s an inspiring article from the Illinois chapter of the Crohn’s and Colitis Foundation. Carly Fishbein, a 10-year-old, wants to help find a cure for her mother’s Crohn’s disease. So she and her friend make bracelets and sell them to others, donating the money to the CCFA.

Even the smallest amounts can make a difference.

Keep fighting,
~Dennis

C3Life: The Power of a Positive Attitude

Dennis — Thu, 03 Dec 2009 15:34:59 +0000

A new story is posted on C3Life.com about the benefits of having a positive attitude when it comes to living with an ostomy. David G., a 60+ year old man has lived with a colostomy since 1997. Because of his positive attitude, his close relationships with friends, loved ones, and coworkers were not damaged in any way because of his ostomy. He had a very supportive environment and chooses not to let an ostomy control his life.

For those who are contemplating surgery, read David’s story and see that life doesn’t have to get worse just because you have an ostomy.

Keep fighting,
~Dennis

Inspiration: Man runs 42,000 miles with ostomy

Dennis — Sun, 14 Jun 2009 11:34:13 +0000

If you think having an ileostomy will ruin your life think again.

Keep fighting,
~Dennis

Women Tell Their UC Stories

Dennis — Thu, 04 Jun 2009 05:24:23 +0000

As I’ve mentioned in passing, I will be volunteering for a week at Camp Oasis this summer in Willow River, MN, sponsored by the Crohn’s and Colitis Foundation of America. The camp director is a lovely lady who’s daughter suffered with colitis at a very young age and had surgery when she was 12. The women’s health website, Your Total Health did a story recently about what the young girl, Bridget Alldritt, went through. Check out her story here.

This site has two other related posts by other women who’ve suffered with ulcerative colitis. I’m always on the lookout for avenues to share more women’s stories since this is a perspective I can’t cover in my videos. For your curiosity check out Adi Bodenstein’s story, age 22, and Jana White’s story, age 35.

Keep fighting,
~Dennis

Changing Doctors

Dennis — Mon, 23 Mar 2009 20:50:50 +0000

Sometimes your GI doctor doesn’t seem like s/he has your health in their best interest. While your doctor isn’t the one primarily in charge of your health (you are), sometimes it is necessary to change doctors to one better suited to working with you.

I changed doctors midway through my struggle with ulcerative colitis and it was one of the best decisions I made.

Keep fighting,

~Dennis

Question: Have you ever changed doctors? How is your current doctor working out for you? Comment on this post!

Losing Control pt. 4

Dennis — Wed, 25 Feb 2009 14:59:39 +0000

The fourth time I lost control of myself back in my ulcerative colitis days. This story is the Near Miss. It could’ve been a lot worse, but thanks to some quick thinking, I managed to control the crisis. The longer you have colitis, the better you get at managing these sorts of things.

Keep fighting,

~Dennis