UC to J-Pouch Story

Photos: Your Story

We’ve been noticing that on our blog that visitors to the site are identifying with the surgery photos of Mark, Carter, Ashley – In other words, people are seeing people and stories they are familiar with.  Now, we want you to share your story and photo journey with others. Similiar to Carters photo journey and story , we are asking for you to share whatever you think might help someone else!

 

 

 

We are hoping to show, but not limited to:

1) Female perspective in general.  Also, we’d love to have someone share their fertility and jpouch story. I know for women the fertility is concern when making the “elective” surgery decision.  

Other perspectives from the female angle are body image issues, not to say men aren’t body image concerned, but with women it may be different? 

2) Delayed surgeries, surgeries with complications, surgeries without complications. Perm ileo stories, strictures, fistulas, etc…. 

3) We didn’t document the pre-surgery journey and we’d like to show that part to others. Pre-surgery as in the tests done before the surgery and the time frame of those. The night before prep, backing of bag, family settling, etc…..

4) And these are only a few ideas, so share yours. As you can tell on this site anything goes as long as it benefits your healing, and the future healing of others!

If you are interested, please email Mark and Megan at mdhilton@gmail.com

“In a society that almost demands life at double time, speed and addictions numb us to our own experience. In such a society it is almost impossible to settle into our bodies or stay connected with our hearts, let alone connect with one another or the earth where we live” – Jack Kornfield

 

Photo via: rachel a.k.

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6 Responses to “Photos: Your Story”

  1. Dee Kramer said

    Does anyone know of a connection between drinking alcohol (a glass of Scotch or one glass of wine) and pouchitis.

    Thanks
    Dee

    dkramer@uwaterloo.ca

  2. Megan said

    Hi Dee,

    I haven’t heard of a direct connection between alcohol and pouchitis. But just because we haven’t heard of that connection, does not mean it may not exist.

    Here is a link to a post we did about jpouch and alchol. The link will connect you to other forum posts on http://www.jpouch.org site. You should post your concern on jpouch.org and you’ll get some better feedback there.

    https://ucstory.wordpress.com/2008/06/15/j-pouch-and-alcohol/

    Take care,
    megan

  3. sally said

    hi im 47 female and have had both surgery’s and now have a j pouch. my surgery was about 10 years ago. I had my take down in december and the following october i gave birth to a wonderful and healty baby girl by c section. i have also had four older children that have had the surgery. one of my daughters had both surgerys done in one and thus never had to have the illeostomy. she is doing great.

  4. mary said

    I HAD MY FIRST SON LAST YEAR AND THE ONLY WEIRD THINGS THAT I DEFFINATLY KNOW TO KEEP AN EYE ON WITH MY NEXT PREGNANCY IS THIS – because of my insides being rearanged during my surgery my son had limited room to move and stayed in the same position for monthes and came out with positinal torticallis and positinal plagio that took pt and 2 helmets to fix. hes fine but next time if that babys not moving around cause theres no room they need to do it manually. also i kept telling my obgyn how i had a bump that looked like a hernia near my stoma and they kept telling me it was probably the babys behind or somthing poking out. well they were wrong it was a stomal hernia from the pregnancy but my gi said it didnt need surgery unless it gets biggger or starts hurting me which it dosnt but it messes with positioning the appliance so i have leaks all the time and am going threw a couple of bags a day somtimes so i might just elect to have the surgery anyway because the hernia is soooooooooo anoying!!

  5. Jimmy said

    Back to Dee Kramers original question above. The correlation of the scotch and wine to pouchitis is the sugar content. In the j pouch group I am in Michael May has told us since he cut out sugars in his diet is has reduced his possibility of pouchitis greatly. Sorry to not tell you something else that wouldn’t involve you cutting out the Scotch and wine.
    Happy New Year 09

  6. Jonathan Rix said

    It has been a long journey for Me. I have been dealing with UC for about 6 years and have had 5 colonoscopies this time my GI Doc stated that my Colon is burnt out with polyps. Which is terrible but the fact that the Polyps are the only “good” part of my large intestine is scary. I have had more delays than I could have dreamed. It took 3 months to see a surgeon to only discover that my insurance does not cover him or the hospital. BTW I found out this the day before my surgery and after I completed the prep (Which always sucks). This surgeon recommends my case to another and we drive to see him only to hear what has already been heard, But we do it because of the formality of it. Oh before we arrive I am asked to do an enema for no reason. We talk to the surgeon for about 30 minutes which seemed like a life time. He then states that I am required to do a preop visit at the hospital. Now mind you we did the second surgeon visit on the 27. He said that the surgery “might” be on the 7th or 14th of July. That is a big difference especially given the fact that it was on the 24th I was to have the surgery anyways. So we wait. It seems like the waiting is all we can do. I felt so helpless. We get a call on the way home from lunch that day to find out that the surgery is on the 7th and the preop is on the 1st. The preop was at 8am so that is a 6am start for us. We go there do the EKG, Blood Draw, Chest Xray. Then we saw The doctor who will be following my case medically, and the Ostomy nurse. That process took about 2.5 hrs. When I was with the Ostomy nurse she marked my belly for the stoma in two places to make is easier for the surgeon to pull part of my small intestine through. The next day I get a call from the surgeons office about my insurance. They wanted half of what my insurance did not cover. That was within 5 days of surgery. It told them I can make payments. They agreed. Then I found out how much the prep kit was. 80.00 just to clean my colon. Something that I have done to many times before. So Now it is the 3rd of July and I am just hoping the rest of the week is nice and quiet (minus the fireworks tomorrow) to where I can just do this once and for all. I will post again the 10th to inform anyone of my story.

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