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Posted 6/21/2008 9:27 AM (GMT 0)
Hi,

I'm new here, but not new to UC.  I am getting near my 1 year anniversary of j-pouch surgery and doing really well, living much healthier than when I had UC.  You know, it was such a long road and hard battle that my wife and I documented my surgeries and my journey.  I thought you might like to check it out especially if you've been considering the surgery. 

http://ucstory.wordpress.com

Look forward to hearing from you!

Mark

Posted 6/21/2008 1:18 PM (GMT 0)
Hey, Mark, thanks for the link. We always have people trying to make this decision, and your experiences may be very helpful to them. Glad you're healthy and well now!
Posted 6/21/2008 6:07 PM (GMT 0)
Hope it can bring some clarity for those hearing the words "surgery".  We made the site because we felt very alone with the actually tecnicalities of the surgery and it was such a long process to learn the info, make the decision and then to experience it all.  The good thing is that we learned a lot and are now living healthy and want to share - sharing the story seems to help with healing.

Posted 6/21/2008 8:01 PM (GMT 0)
great blog mark! thanks for sharing.
i'm not willing to go the remicaide route so i'm doing my research on surgery now while i am doing well so i can be prepared. i didn't look at all the photo journals but will do so at some point and will have to get my husband to look thru them as well!
thanks
Posted 6/21/2008 8:34 PM (GMT 0)
Thanks for sharing Mark,

I've had a few surgeries already, but it's always good to be prepared just in case I need to have another.


Again, thanks to you and your wife for doing such a great job documenting your experience.

NBT

Posted 6/21/2008 8:40 PM (GMT 0)
Thanks for sharing
Posted 6/22/2008 4:18 AM (GMT 0)

Hekela,  why won't you do remicade- is b/c of the pregnancy likely?  I know some people with UC who responded well to it. I did not respond to it as well as I would have liked. I was a double dose every 4 weeks and it made my BMs decrease a bit and my body felt stronger but it didn't offer remission. 

Mark

UC 7 years -jpouch 1 year

htt://ucstory.wordpress.com

Posted 6/22/2008 2:28 PM (GMT 0)
Thanks for sharing, Mark!

How long were you on Remicade before you decided that it was time for surgery? (I just started Remicade but I'm not sure if I want to continue b/c of possible side effects. But I figured I would start it anyway so I could be a bit healthier if I needed surgery).

Posted 6/22/2008 5:12 PM (GMT 0)
I was on Remicade for about 8 months, and when the remi wasn't working the GI did some tests and found I was accepting the remicade but after a week the antibodies in my body had eating up the Remicade. I then did a 3 month trial on Humira but that had no impact. And what we knew was that Humira would be my last chance medicine b/c I had done everything (obviously a string of meds before remicade). Once I decided on surgery b/c humira wasn't working my GI had me in surgery in the next month so that I could be in surgery healthy as possible. Through all Remi and Humira I was pred. dependent (although was trying to taper).
Posted 6/22/2008 7:14 PM (GMT 0)
What a great site! Thanks so much for sharing. This information will come in handy to lots of our members!
Posted 6/22/2008 7:56 PM (GMT 0)
I found your site really informative. Thanks for your willingness to share. I think it would be a great way to intro my husband to the reality of what my having surgery would entail.
Posted 6/22/2008 7:59 PM (GMT 0)
I actually stumbled on your blog through some other avenue (Google maybe) and found it incredibly helpful. I am around the same age as you but have only had the disease for a year. I was looking into what surgery would be like and really enjoyed the honest and thorough presentation of the WHOLE process. It was also nice to see how supportive your partner is---gave me hope for the future if I do indeed need to get surgery.

Thanks so much for telling your story and documenting it for those of us needing information from people who have been there and done that.
Posted 6/23/2008 6:06 AM (GMT 0)
Thanks for all the support, I'm glad that the blog may or is helpful for some people. I figure it kinda bites if you have to be looking at my site (meaning you're likely sick or have been sick), but we did want to give others a way to learn the process. We so badly had wanted images and ways to "visualize" how my body would change and what I would look like. I'm pleased to hear Deleuze say that the process was honest and thorough, hopefully it will take some of the fear and/or mystery out if you need to have the surgery.

if you have any suggestions to improve the site, we'd love to hear!
mark
http://ucstory.wordpress.com
Posted 6/23/2008 6:35 PM (GMT 0)
Thank you so much for posting the link to your site. Awesome documentation!

Glad to hear about your life without UC!

**Removed my goofy sig that couldn't be read...

Post Edited (dakotagirl) : 6/23/2008 1:08:48 PM (GMT-6)

Posted 6/23/2008 7:01 PM (GMT 0)
Mark,

I actually found your blog through your posts in j-pouch.org and I had been meaning to say something but I am usually only online while at work and I can't respond to posts on that site for some reason (but I can view them). Anyway, I have also been considering and researching surgery and your blog was very informative and helpful; I wasn't really finding much online that gave me an actual picture of what things would look like, and that's just what I wanted to see! It definitely made me feel a lot less anxious and I feel more comfortable with the idea of surgery now after seeing that. Thanks so much for sharing, hopefully someday I can share my own pictures and success story :)
Posted 6/23/2008 9:53 PM (GMT 0)
Thanks for all the good advice....I had first part of surgery last month, and I am having a problem with scarring on my small intestine, causing a blockage for about 2 days...I am in the hospital now...everything is working okay, but I have had nothing to eat....how many times did you go through the blockage issue?  Will have j pouch surgery in a few months, but I am worried that I will keep having issues.....thanks for any help you can give me

Posted 6/23/2008 11:04 PM (GMT 0)
Hi,

I had 3 blockages from what they think was scar tissue and not food related. Did you see on the sites where we wrote about what we did to get the first two blockages to pass about taking the shower, massaging around, hot tea. I did go into the jpouch takedown surgery with a blockages and they still did my surgery, I hadn't had a stoma BM in like 16-20 hours before the surgery. I was so nervous they would say I couldn't have it and they said even more reason to have the surgery.

Don't' be worried, obviously worrying won't do you any good your body is going to do its own thing. Just change your thoughts to knwo that you will get through this and always remember to see how far you've come.
Posted 6/24/2008 7:53 PM (GMT 0)

Mark,

How long did you wait between surgeries, and after your blockages, were you able to eat regular food?  Also, how long of a recovery did you have after the second surgery, and did you have any complications from the j-pouch.  thanks for your help and advice...I am still in the hospital, they started me on liquids today, abd solids tomorrow...I just want to go home, but I think they are afraid if I food again, that it will block.

Posted 6/24/2008 8:28 PM (GMT 0)
It was 3 months between surgeries.

Yes, I ate soft foods till I was pooping in the bag normal again.

Hard to answer exactly the step 2 takedown recovery time, but if you follow along in the pictures, you'll see the stages of recovery detailed down to when I was showering, eating, out of the hospital, at home, and then back to work, and snowboarding by wk 10 in the recovery: http://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/

Be patient with the process in the hospital, the fact is that blockages are really tiring for your body to handle so they are just taking extra precaution for long term success. Remember this is a pretty long journey back to health, but as the old cliche but so true saying goes "Life is in the journey." My best advice for getting through this is to help someone else going through it, the best healing we found :)
Posted 6/29/2008 10:23 PM (GMT 0)
Hi,

We noticed there seem to be some youngish adults tossing around the surgery idea, so we are trying to gather images of others stomas and scars from the jpouch surgery that may be more gender and/or age closer to those considering this.  Ashley had her surgery at 21, and her is a photo fo her little loop ileostomy and her leftover scars. 

http://ucstory.wordpress.com/2008/06/29/ileostomy-stoma-photos/

Ironically, it was single handledly Ashely's photos that triggered our desire to want to document the surgery which has now become our blog. When we saw her 12 photos, we wanted more information about everything she went through.  We showed her photos to our family, friends and it was so helpful for us to visualize the future.

Mark & megan

http://ucstory.wordpress.com

Posted 6/30/2008 2:08 AM (GMT 0)
Thanks again for making the blog, Mark and Megan!

I really need to get used to the idea of stoma--it's freaking me out! But I'm glad I actually get to see what it looks like before I have to get one.
Posted 6/30/2008 2:13 AM (GMT 0)
you guys might also want to look at the photobucket page we have set up for the ostomy board, it's photobucket.com the user name is crohnsdisease and the password is 6mp3asa
there are pics of us with our ostomies, just to let people see that you really can't tell. I even made a pic of two pics of me, of that area side by side, asking people to tell me which pic i have the ostomy in, in the pic i have had the bag on for about three hours, so it does have some in it, and so far only one person has tried to guess and they were wrong, lol.
The blog is extremely helpful, i just wanted to give you guys a little something extra to look at.
Posted 6/30/2008 2:46 PM (GMT 0)
After reading this blog - this is probably one of the best documented surgery experiences i've found in years about the surgery. I went through almost every single step of that exactly. Definitely a great read, and thanks for putting so much time into it.
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