Comments on: About

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

By: Charles Ivey

Charles Ivey — Sat, 27 Jun 2009 23:02:09 +0000

I just got a post about the Specific Carb Diet. I Have had Crohn’s for 30 years and my experience after trying the SCD diet was that it does not work. Several reasons, first it is next to impossible to live on such a restricted diet for any length of time and travel on the SCD diet is impossible. I followed it fanatically for 2 years and had very poor results. My wife who has Celiac ( which the SCD is supposed to cure) had the same miserable results. Also, I called and spoke to the lady who started it, Elaine Gottschall personally and she said that it would not help scar tissue and scarring is prevalent in almost all Crohn’s patients. My advise after literally trying everything for 30 years is to get a very good Gastroenterologist whom you are comfortable with and try Remicade or Humira. I am on Humira and am in remission. I did have to have my colon removed due to the scarring but it was the greatest thing that has happened to me relative to the disease. I am not saying that diet and nutrition are not important, they absolutely are. But Crohn’s is far more complicated to control. Avoiding carbs to control Crohn’s is nonsense. Try to find out which foods (spicy, greasy, etc.) cause you a problem and remove those. And find a good doc and you will be on your way to better health. Also consider some form of relaxation, such as TM, it has really helped me.

By: comfytummy

comfytummy — Sat, 27 Jun 2009 20:53:47 +0000

Hi,
Just wondering… have you tried the Specific Carbohydrate Diet at all? I was diagnosed with severe UC back in 2004 and put on meds by my doctor which didn’t do much to help. About 6 months later, after lots and lots of research I came across a book called “Breaking The Vicious Cycle” by Elaine Gottschall and within months of being on the diet was med free and symptom free and have been ever since. Although you no longer have a colon, perhaps it can help you. You can read about my journey and the diet at http://www.comfytummy.com. All the best to you.

By: Robert, enfermo de crohn

Robert, enfermo de crohn — Sat, 13 Jun 2009 11:26:14 +0000

Gracias por tus interesantes aportes. Desde españa, un blog hermano dedicado especialmente a la enfermedad de crohn.

Thanks for your interesting contributions. From Spain, a sister blog focused especially Crohn’s disease.

By: Charlie Ivey

Charlie Ivey — Fri, 29 May 2009 12:57:07 +0000

Dennis, Thank you so much for your website. I have had Crohn’s for 35 years and finally an ileostomy 2 years ago. Through your videos, you have answered questions for me that doctors, nurses, and other sites could not do. You are really making a difference and I thank you for that. Keep up the good work. Charlie

By: Kbear

Kbear — Sat, 28 Mar 2009 09:44:10 +0000

I am having my take down/j pouch surgery Feb 2010. Your video logs have really helped me a great deal. I really appreciate these videos and your honest open description of what you have experienced. I had Colitis for 8 years, full colectomy last Dec. Feeling much better now. And now, even better after watching your videos! Thank you so much! Kbear, from Canada!