Comments on: About

By: Jane

Jane — Mon, 02 Jan 2012 23:30:00 +0000

Hi,
I am writing to add my thanks and gratitude to everyone who has commented here. I don’t know how to adequately express my appreciation for the great work you are doing to provide comfort and compassion to all of us who deal everyday with “guts issues”. You are doing a tremendous service through the communication of your personal knowledge, education, encouragement and real life experience. No doctor or nurse or other medical professional provided 1/10th of the help you have provided! One question – how do people cope with working full time? I have an office job now, but I have a new job offer to do consulting work. That would involve a lot of air travel and staying in hotels and day long meetings – and I don’t know if my guts can handle it. Do you know of anyone with a j-pouch who does a lot of out of airplane flying and out of town travel for work and if so, how do they manage it? I can’t imagine how I would deal with it due to the unpredictability of when I am going to have a problem.
Thank you,
Jane

By: Holly PInk

Holly PInk — Fri, 02 Sep 2011 20:28:24 +0000

I am a CWOCN (certified wound ostomy continence nurse). I will direct all my patients with bowel or stoma concerns to this VLOG. This is amazing in so many ways. Thank you so much.

By: Dennis

Dennis — Mon, 17 Jan 2011 23:57:18 +0000

Hi Sabrina,

17 surgeries?! That sounds like way too many for one lifetime. Unfortunately I don’t speak Spanish; I only know a few words here and there. But if you want to email me at Dennis@UCVlog.com in Spanish, I can translate it online and get most of your story that way.

Dennis

By: sabrina

sabrina — Mon, 17 Jan 2011 19:08:52 +0000

hello, im from argentina. i have colitis ulcerative since i was 21. now im 28
y had 17 surgeries. do you speak spanish? i dont write all i want to tell you.

By: muggins7

muggins7 — Sun, 05 Sep 2010 04:30:01 +0000

Thanks for creating such a wonderful website/resource for ostomates. Glad to see more blogs and websites about ostomies.

Mary
http://muggins7.wordpress.com

By: Dixie

Dixie — Fri, 02 Oct 2009 19:12:44 +0000

Hi Dennis,

My daughter who is 7 was diagnoised with UC at age 3, she was sick for 1.5 years, then in remission, then all went bad January of 2009. None of the medications worked and spent 10 weeks in the hospital in pain and not eating or drinking. She had her colon removed in May (after changing care to doctors who do surgery for this disease), J-pouch created in July, and had her take down end of September.

Your site has been so helpful to me in understanding how to help her with each step of the way since the colonectomy. She is leaking a bit now, but it is only one week out using the J. Your videos give me hope that she will learn to use her pouch in time.

Her only medications now are to have at least 1.5 teaspoons of salt .5 of soluable fiber (we use apple pectin) and drink 58 ounces of water. When she had her ostomy this made her stool like apple sauce. When she has chocolate it ruins it all, so we need to keep her from it.

We tried the SCD diet for 3 months with no luck of any relief when she had her first flare. I hear it helps some, but not a cure for everyone.

Thank you for putting so much time and honesty in the videos. I can’t tell you how they helped.

By: Cindy Ponce

Cindy Ponce — Mon, 28 Sep 2009 19:16:59 +0000

Hey there! I came across your vlog sitting here in the hospital waiting on my echo test results. I saw your videos on you tube (parts 1 & 2 of UC: bloodclots). I’m sitting here in the hospital room b/c my story is identical to your first video regarding the blood clots in your lungs only my pain was in my abdomen and i came in b/c i thought it was my appendix but it turns out that it’s my kidney and i had a renal infarct. Enough about me, I just thought I’d stop by and thank you for posting your story. I appreciate the information as i tend to freak when something goes wrong and i know no one with a similar story. I’ve had UC since 2005 but luckily i’ve been able to control things with biologics for about 6 months at a time then they stop working so i’m assuming one day i’ll need surgery as well. Thanks for posting, it’s been very informative.

By: Martha

Martha — Thu, 24 Sep 2009 21:01:51 +0000

Hi Dennis. My husband was diagnosed with Crohn’s disease in his mid twenties. Now in his mid forties, he’s had a long history of varied success and failure from treatmennts including steroids and immunosuppressants. Lately he has been extremeley ill and so yesterday underwent a thorough colonoscopy. He has now been diagnosed with ulcerative colitis. The specialist wants him to go back on Asacol and suggested possibly having the large bowel removed. I am worried he sees this as the end of his life and know that he’s had suicidal feelings lately. I can’t say how relieved I felt when I found your site. I am going to get my husband to watch some of your videos and those of others who are getting their lives back to normal. Your site is a light for us in a very dark time. Thank you.

By: Jay

Jay — Fri, 28 Aug 2009 01:20:30 +0000

First, I am so happy that this site exists. It’s something I wish I could do but was too embarrassed or afraid to expose who I was. The last couple of years living with ulcerative colitis has been an ongoing battle. I’ve kept going no matter what happened to me. I keep striving to do more and prove that we can overcome all obstacles. I’m still on lots of medications and have been in a remission for about 9 months. It’s scary, being the one who feeds my family and having this instability in my life. Without the support of my family I would have never made it this far. I just wish that some companies would be more supportive of people who have this disease. Since I revealed that I had this condition I was demoted and given poor reviews, whereas previously I was a star employee. The people I trusted wanted to get rid of me and this was their way of trying to accomplish that. I hope that we all overcome all the obstacles in our lives and those who are uncompassionate towards others will one day answer to a greater power.

By: ucvlog

ucvlog — Sun, 28 Jun 2009 14:18:58 +0000

Hi there,

I have not tried the SCD diet. I don’t really know much about the diet, and chances are I probably won’t be trying it in the near future. I am happy with now my J-pouch is working and think it is working great without any kind of major diet modifications. But some day I will read the Gottschall book since many people have mentioned it to me.

Dennis