UC to J-Pouch Story

1 Year Anniversary NO UC!

Posted by mark on July 6, 2008

THREE CHEERS TO RENEWED HEALTH!

Every event, every situation in which you may find yourself has a positive value, even the dramas, even the tragedies, even the thunderbolt from a calm sky.” – Arnud Desjardins

 

I have my step 1 one year anniversary today, July 6th, 2007. And feeling incredibly well, with low BMs and overall feeling of good health. I am so thankful for chance to be healhty again, and thankful for all the great resources avaialable to get through this. I don’t need to tell you on this board how much of life was hindered due to UC, and how much time I lost deciding for surgery, etc…

And to celebrate this 1 year anniversary from Step 1 surgery, you should click below and watch the videos by Jordan Sweeney. He is living with UC and has made an excellent album with videos about his reality. Watch this first video Rain Song, and it will hit you to the bone -Megan saw it for the first time and tears came flowing, when living with the disease I don’t think always realized what it was taking away from us.

Thanks to everyone who helped us through these past few years!
Mark (1 year healthy living with No COLON and No UC)

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8 Responses to “1 Year Anniversary NO UC!”

  1. Erica said

    MARK,

    CONGRATS!!!! So glad you are doing so well, I know its been a long road for you and Megan. I’m just so happy that you are healthy and doing well. Lookin’ good too might I add 🙂

    E.

  2. Kristin said

    Congratulations. Isn’t it a wonderful feeling?

    I had my step 1 one-year anniversary this past June 14. It was a beautiful day. I went to Prospect Park for a picnic with two of my best friends who gave me wonderful support during such a horrible 2007, and I stretched out on a picnic blanket in my bikini with my scars proudly on display.

  3. Susan said

    Hi, Mark and Megan. I just found your story and it is so helpful! Thank you for doing this. Congratulations on your health…if you are anything like me it is amazing to not have to take a cabinet full of pills everyday to feel good. I’ve just had my first surgery (July 1st, 2008), but it did not include the j pouch. That surgery will be on October 2nd. One question that I have for you is this…are you glad you went through with the surgery and got rid of the bag? I read some of your comments and it sounds like you had some really rough times after the second surgery and this gives me pause. I’m so glad to hear that you are well now. I am completely enjoying life with my bag and no colon…I can have Pizza again!! Yeah!
    Thank you so much for your incredible story. I has really helped answer a lot of questions I had.

  4. mark said

    Hi Susan,

    Oh yes, I am very happy that I am now living with jpouch and not the bag. I didn’t have a very hard bag to jpouch transition, there were some moods, some skin issues, etc but really minor things to deal with. More than anything I think I was just feeling the emotional of all the change and that took some time to adjust. I think everyone has some adjustment with the jpouch but overall I do hear that about 90% of people are satisfied with their pouch (I need to find where that statistic came from).

    Also, if you go on sites like jpouch.org don’t get discouraged by the stories of trouble, keep in mind people tend to reach out and tell their stories, ask for advice when things are bad for them. This was a big big reason to create this blog was to help people see that there are excellent outcomes, with some adjustments, but excellent outcomes.

    Keep us posted on your recovery!
    Mark

  5. Susan said

    Thank you, Mark, for your encouraging words. I, like you, have had such a bad time with UC and my husband Rod, like Megan, has been through so much as well. Our kids are so happy to have Mom “back”. Any advise on traveling after the last surgery? My parents are taking us to Florida about 8 weeks after my last proceedure. We’re driving and I’m a little leary of how it’s going to go.
    Again…thank you so very much for all your help and your story. Also, tell Megan that her preaching worked. I will count to ten before snapping at Rod next time. 😉 Spouses are the best!
    Susan

  6. Megan said

    Hi Susan,

    Glad to hear you are getting your family back to health, your kids will have a new and improved Mom back 🙂 I can’t even imagine having gone through our struggles if we had had kids – we are looking forward to starting a family now that we’ve got Mark healthy and a more consistent lifestyle.

    I think 8 weeks after your “takedown” jpouch surgery you should be okay. Most people seem to be back in to good form around 3-6 weeks. The only thing I did notice is that at times Mark was in “recovery”. He would seem fine, feeling good but he would get tired sometimes, or just not have spunk. We just likened it to “recovery”. I think more than anything just go to Florida, don’t worry now about what may be, and just prepare yourself and yoru family to be patient with your healing process. And be sure to make it a CELEBRATION of health, I don’t think we celebrate getting health back enough, for us, it was a NO COLON (or rectum) party for a long time until life started getting back to normal.

    Keep in touch, and maybe you’ll share a family photo from your vaction with us and we can post your story with the photo for others to celebrate in your good health!

    Megan

  7. Robert said

    I have lived with this for five years. Three months ago I had a flair up of diverticulitis… probably spelled wrong but anyway, I had the usual tests. Now I am seeing a surgeon he is trying to find alternatives to the surgery. I know it is a big thing, but I am tired of the pain and all that goes with it. I told him just get it out of me. He of course said lets have another cat scan. I was told I had a severe case surgery was my best option to lead a normal life. Any sugestions would be greatly appreciated.
    Thanks, Robert

  8. mark said

    Deciding on surgery is really one of the hardest decisions myself and my family has had to make. I tis consider an “elective” surgery and yet seems so scary because it is such a major major surery and who knew we could live without our colons?!

    What I can say is that for me the process of decising to have surgery took about 3 years because it was scary to me as well, some people make the decision quicker – you’ll have your process making htat decision. On this About Us page are some links about 3-4 paragraphs down on the page that will link you to other posts where people are talking and asking about “how did you know it was time for surgery” you should really look at those: https://ucstory.wordpress.com/about/

    And below is the link to an excellent webcast about making the deicison for surgery you and your family should really check it out, it will help to remove some of that fear when you better understand why doctors recommend the surgery, what it means, etc..

    https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    I think the main thing is to understand that the surgery has pros and cons, and too make sure that you are 100% clear about your decision.Also, be sure your family is on board with the decision – it is too big to do all this alone.

    Last, you should visit http://www.jpouch.org and talk with people there, you’ll likely find others with diverticulous and you can hear more about their decision process.

    Mark

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