The United Colon Vlog » Living with a J-Pouch

Oh, J-Pouch, Please Don’t Fail Me! – A Video Journal Entry From Nadia

Nadia — Sat, 03 Jul 2010 11:37:40 +0000

This week I had a big setback. I was told that my internal J-Pouch was in the beginning stage of pouch failure. After only 16 months, my disease has caused my pouch to have repeated Pouchitis, it’s full of ulcers and there is a lack of blood supply to the pouch. Aggressive treatment is needed to try to save my pouch. So I go into crisis mode and do whatever it takes to fix this and hope in the end it does.

I often hear, God doesn’t give you more than you can handle. I know this. This isn’t the worst thing, others suffer way more than I do and I don’t feel sorry for myself or wallow in self pity(at least not for long). But I am human, and I hurt, I cry-hard, and sometimes I feel defeated, overwhelmed and tired. And call me selfish but I want some things that I feel are like sand slipping through my fingers. For the past 3.5 years, a good portion of my life has been focused on my illness. It would be nice to shift gears and not worry so much about sickness, meds, doctor visits, and be able to focus some attention on going to college, maybe getting a job, doing more with my friends, going forward in life.

I will move forward, just at a slower pace than others, and for now, that has to be ok.

My personality is wired in such a way that I try to stay positive and look for ways to take a bad situation and turn it into something good. It’s my coping mechanism. It is really the only thing that keeps me from succumbing to the stress that this illness has placed my body in and having a complete meltdown. From the outside I can fix myself to look nice and by all outward appearance, no one even knows how ill I am. But underneath there is a lot of pain going on as I realize that what is happening inside my body is so far out of my control that I have even begun to question if there is even an answer that exists out there for me for how rare I am. I like the idea of being one of a kind, but not like this….

So we head into uncharted territory and hope that the course that I am setting sail on leads me to solid ground because being on this rocky sea sailing nowhere is making me sick…literally.

“Although the world is full of suffering, it is also full of the overcoming of it.” – Helen Keller

~Nadia

QUESTION: WHEN YOU FEEL DEFEATED BY THIS ILLNESS, WHAT ARE WAYS TO HELP YOU OVERCOME THAT FEELING?

I Don’t Have A Colon! Nadia’s Series of Rants Part 1

Nadia — Sat, 17 Apr 2010 12:51:36 +0000

Does it ever just hit you, out of the blue, the sudden realization that you are missing body parts or how this illness has effected you?? Sometimes randomly, I will get struck with the thought that I don’t have a colon or a rectum. I will never have a solid bowel movement. I have Crohn’s Colitis. I’m sick, and I will be forever–(unless there’s a cure, but even still, I can’t get my colon back) This video is my rant on how it strikes me. Sometimes I think that these realizations hit me because I’m still in the process of understanding the impact of everything that has happened to me. I’m ‘digesting’ it all very slowly because the profound magnitude of what I have gone through in my life is too much to take in at one time.

“Disenchantment, whether it is a minor disappointment or a major shock, is the signal that things are moving into transition in our lives.” ~William Throsby Bridges

Nadia

QUESTION: DOES IT EVER STRIKE YOU, AT ODD MOMENTS, HOW SICK YOU ARE OR WHAT THIS ILLNESS HAS DONE TO YOU?

What I Can Eat Now

Dennis — Wed, 10 Mar 2010 12:52:09 +0000

Diet is obviously a big part of living with inflammatory bowel disease. Most everybody has at least some foods that they can eat and some foods that they cannot eat. But the list of good foods, bad foods, isn’t the same for every person.

Many people ask me about the food I eat since my takedown surgery. While I did a video about diet a couple months after my takedown, I decided to update the video to let you know what I can eat now.

Keep fighting,
~Dennis

Question: What kind of food can you eat and what foods do you really miss? Reply to this post!

My First Case of Pouchitis pt. 2

Dennis — Wed, 17 Feb 2010 12:49:29 +0000

Sorry for the delay in getting this video out. Over two months ago I posted a video describing my first case of pouchitis. Well, I’ve been off the antibiotics for two months now and wanted to wait and see what kind of effect they would have long term.

Long story short, my frequency has returned to what it was before and my J-pouch is working fine again. We’ll see how long I can go before getting pouchitis again.

Keep fighting,
~Dennis

Question: For those who have gotten pouchitis, how long did it take you to go back to normal? Reply to this post!

One Year Celebration For My J-Pouch

Nadia — Tue, 16 Feb 2010 13:52:16 +0000

Happy Birthday to my J-Pouch. May you live a long and happy life. I hope our relationship lasts a lifetime!! This video is a celebration video of the first year that I made it through with my J-Pouch. I have had a few rough patches but for the most part, I am so happy. I made the right decision and my life is being restored. Little by little things are getting better. If you have had J-Pouch surgery and would like to share any stories or your experiences, leave me a comment or send me an email at Nadia@UCVlog.com

The more you praise and celebrate your life, the more there is in life to celebrate. ~Oprah Winfrey

~Nadia

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My First Case of Pouchitis

Dennis — Mon, 04 Jan 2010 15:23:11 +0000

I mentioned I had pouchitis in a video a couple weeks ago. This video gives the full story. I talk about what pouchitis is, why I thought I had it, and what the treatment for it was. This video ends when I was still taking medicine. At some point in the near future I will update everybody how the lasting effect of the medicine I took.

Keep fighting,
~Dennis

Question: Have you ever had pouchitis? How did you treat it? Reply to this post for all to see!

J-Pouch: One Year Update

Dennis — Mon, 21 Dec 2009 15:11:37 +0000

The video everybody’s been waiting for: the one year update! In this video I cover how my J-pouch basically functions after one year, such as frequency, pain, diet, control, and more. If you have any further questions that I didn’t cover in this video, please ask me! You know I’m very open and tell people pretty much anything.

Keep in mind, this is how my J-pouch is functioning after one year. Some people might reach these goals sooner than I did, some might take longer, and unfortunately some people may never have a J-pouch that functions as well as I seem to think mine does. This video, however, will give you one benchmark by which to compare yourself.

Keep fighting,
~Dennis

Question: What else do you want to know? And how was your J-pouch working after one year? Reply to this post and continue the discussion!

My Pouchoscopy Failure

Dennis — Mon, 26 Oct 2009 11:18:34 +0000

The video about my first pouchoscopy attempt is finally available! A pouchoscopy, for those who don’t know, is a procedure for people with J-pouches. It’s like a colonoscopy in that the doctor can check out the overall health of the pouch plus take any biopsies needed to check for cancer or other diseases.

My first pouchoscopy didn’t exactly go as planned.

Keep fighting,
~Dennis

Question: Have you had a pouchoscopy? How did it go? Reply to this post for all to see!

J-Pouch Spasms

Dennis — Mon, 19 Oct 2009 11:10:45 +0000

For the first month or so after my takedown surgery, my J-pouch frequently had spasms that reminded me very much of the intense urges I used to have with colitis. While the feeling may be the same, what’s happening is very different. This video explains my experience with this unexpected phenomenon.

Keep fighting,
~Dennis

Question: Have you experienced these spasms? Answer below!

Blood and J-Pouches

Dennis — Wed, 30 Sep 2009 11:13:48 +0000

The third and last video in the series about blood, this one covering everything you need to know about your J-pouch, and how much it should or should not bleed…and what it might mean if it does bleed. This video, like all others, is based on my experiences with blood, so if you’ve had a different experience comment on the video and let us know!

Keep fighting,
~Dennis