These are stories of happenings and feelings about the Jpouch surgery, preliminary surgeries, and life without a colon. Please explore the postings, and we'd love to hear from you in the comments, via email, or heck you might as well join this blog and click here to contribute yourself!
Our Message Board
May 10th, 2010 at 7:40 pmFor me it took about 3-4 weeks before I felt comfy using my body in full force. I was a little hesitant to tear something but that was more in my head than physical. After 2 wks I felt really fit and good. I think you find that within a month you’ll be in full working form again.
Our Message Board
April 25th, 2010 at 7:40 pmHi Daniel, Yep the hemmi’s are an issue, but a small price to pay for no longer being sick. Just keep the area clean is my biggest word of advice and find the creams that works best for you, I tried tons of creams and my favorite is simply the Cortizone cream like Cortaid.
"You're Fired."
March 16th, 2010 at 12:19 pmHmmm…the universe thinks you need more surgery for some odd reason?! Have you found a good P-town surgeon? I know some jpouch.org posters use people there, but I didn’t even though we were in Eugene. Keep us posted after your visit.
Our Message Board
March 6th, 2010 at 7:36 pmJoe, Oh yeah, the first few weeks definitely felt like having UC all over again. In fact, I wrote just that in my photo journal from that time that it felt like UC http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/ . All I can say is that now 2 years out I have NO memory of UC, I love my jpouch, my life is totally normal. I have about 6-8 BMs a day with no urgency. So I do go a lot but it isn’t bad at all, I have no pain and I have complete control. Hang in there Joe, it will settle down with healing. Feel free to contact me if you need anything mdhilton@gmail.com
Commenter with Questions
February 27th, 2010 at 10:25 amDenise, sorry to hear, that sounds really uncomfortable. I don’t know the symptoms of abcess or fistula, but it also could be an internal hemmorhoid. You know, you should go post over at http://www.jpouch.org and see if Jan Dollar (ex-nurse) can give you some insight, she might know your symptoms better.
Photos 1: Colectomy
February 25th, 2010 at 7:27 pmHey Ana, We are so glad to hear that the site has helped your family. One thing we know about UC is that is a disease that discriminates by age, ethnicity, etc…..Unfortunately, it spreads itself to all people! Please let us know how his surgeries go. Will he be having 2 or 3 steps? Will it be open or lapro surgery?
Our Message Board
February 25th, 2010 at 7:19 pmCynthia, We put your post on the front page of the site you check here to see for comments: http://www.jpouch.net/2010/02/25/commenter-with-questions/
Commenter with Questions
February 25th, 2010 at 7:16 pmHi, I used the phoenix belt which you can see in the bottom of this post. I liked it but after I got used to the bag, I didn’t use it and just tucked the bag into my pants and went on normally http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/ I used the two piece bag and that worked really well for me – you can see my bag set up here: http://www.jpouch.net/photos/surgery-1/ Advice on clothes – for me everything was normal, I didn’t have to do anything different, but that may be different for various people. You can see on those above web journal blogs my timeframe for feeling good. But overall I felt great pretty quickly after surgery.
Our Message Board
January 17th, 2010 at 7:45 amAlso, see below comment from Janet.
Our Message Board
January 17th, 2010 at 7:45 amLisa, The skin irriatitation is a hard thing to handle for sure. Jason, a perm ostomy, had made this great list of advice on how to handle skin and ostomy, you may find it helpful http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/5071010732/p/1
Haiti Earthquake Support
January 17th, 2010 at 7:43 amThanks for posting this Eric. We donated on our phones to the Red Cross text number. I heard on the news that the Red Cross 90099 text “Haiti” has raised 5 million from americans. Glad people are coming together to help.
Photos: Gil (16yrsold)
January 3rd, 2010 at 9:34 pmHi Leonard, I had a much smoother 2nd surgery recovery for my jpouch than the first. It may help you read my jpouch surgery recovery journal http://www.jpouch.net/2009/12/21/update-2/
Photos 1: Colectomy
January 3rd, 2010 at 9:33 pmYou may also want to get in touch with Grant – he is 19 years old and inbetween surgeries so he can go to college this spring semester then have his jpouch hooked up this summer http://www.jpouch.net/2009/12/21/update-2/
Boots' UC Journey
December 20th, 2009 at 11:05 pmHey Michael, I’m sure Mike Boots will be in touch with you to discuss his experiences but I thought you might like to read some of the posts from http://www.jpouch.org on GLBT concerns – here is one specifically on anal sex http://j-pouch.org/eve/forums/a/tpc/f/2571085761/m/3471046072?r=3471046072#3471046072 also here are some other posts on gay and sexuality with a jpouch – http://j-pouch.org/eve/forums?a=search&reqWords=gay and here are a couple pages of posts on “anal sex” http://j-pouch.org/eve/forums?a=search&reqWords=anal+sex
Our Message Board
December 10th, 2009 at 9:49 amHi Kim, hang in there with this process, it is indeed happening quickly for you, but the faster you have surgery the faster you can get back to a healthy and normal life. UC is not a fun disease at all so less time living with UC is good for you. After step 1 of 2 surgeries I had about 2 weeks of real down time where I was actively recovering from the surgery – you can read about it here, http://www.jpouch.net/photos/surgery-1/ . But I felt great pretty fast and was back to life in a few weeks. Then my jpouch surgery or takedown surgery (as we call it) was really easy, fast recovery and felt great afterward.
Be sure to read all our surgery blogs to see what we needed in the hospital for each step surgery. Definitely bring a light weight robe for your first surgery so you can walk around with the robe draped on your shoulders. And the key to a fast recovery is to get out of bed and WALK, WALK, WALK, as soon as you can to get your body up and running to speed that recovery.
Our Message Board
December 1st, 2009 at 9:47 pmThomas, That is great they caught your cancer since you are so young and have much life to live. Yes, Mark does have a small rectal cuff without the lining. I can’t remember what that procedure is called where they remove the lining (where the Ulcerative Colitis is active) and that allows UC patients to keep enough rectal cuff for jpouch connection without the fear of that rectal cuff getting UC sick. But with colon cancer like your case they have to take whatever is cancer affected which sometimes can leave you without the clean little rectal cuff needed for the jpouch. Although, there are plenty of colon cancer people who can have the jpouch so hopefully your surgeon can really guide you with good advice on what is realistic for what you have left. That is good you are doing kegels, those might help too with the little bit of leaking you sometimes have. I remember Mark’s surgeon saying it was so important he did his kegels b/c his body would forget to instinctively use the sphincter muscles. We hear pretty often on this site jpouchers or ileo’s that have a little leaking and for some people that improves with time and decreases. Keep us posted! Megan
Under “Our Stories” you can read Rob’s story. He had a jpouch after colon cancer jpouch surgery. He eventually had his jpouch removed b/c his cancer flared again and took more of his rectum. I can send you his email if you’d like to talk with him.
Our Message Board
December 1st, 2009 at 7:24 pmGood luck with your surgery Rachel! And like we always say, get out of bed as soon as you can and walk, walk, walk. That will help get your body flowing again and get you home sooner! Keep us posted and let us know how your surgery and recovery goes. Heal well and quickly – Mark
2 yr J-pouch Anniversary & Life Update
November 26th, 2009 at 9:07 amHey Emily, The more important question is – how are you doing?
Abby's Hot Air Abdomen
November 25th, 2009 at 7:25 pmYou may also want to go visit http://www.jpouch.org and ask over there, I know they have people who are dealing with dialations. I do some people get their own dialation kit and do it themselves at home. Good luck and hang in there.
Photos: Carter S.
November 21st, 2009 at 8:24 pmWow…that is a tough situation you’ve been in. Definitely the opposite of UC if you are constipated for weeks. I’m sorry they haven’t found a non-surgical cure. You will find that after jpouch surgery that you’ll feel so much better. I have been really happy with my jpouch and you should be too. I agree “To good health!”
Potential Problems After Surgery
November 15th, 2009 at 7:13 pmDaryl, See below comment from Tim and myself.
Our Message Board
November 15th, 2009 at 7:12 pmHey Colin, Yeah, your concerns about the “what if” this doesn’t work is completely normal and warranted. By the time we get surgery we are so used to medical failure that it doesn’t seem possible this surgery could be the magical cure. BUT…the good news for 95% of most people who have this surgery it IS the magic cure. Just visit our home page (www.jpouch.net) and you’ll find updates from me, Brevin and Lizz. All of us are living normal, happy and healthy life. I can do anything I want physical, no urgency, few complications, and I am no longer sick. I don’t even remember the man that lived sick with UC for 7 years. I have zero regrets other than not having this surgery sooner. Keep us posted on your recovery.
Photos: Carter S.
November 15th, 2009 at 7:07 pmAlso, see Brevin’s story here, he is completely active – http://www.jpouch.net/2009/11/10/6-months-later-jaypouchirifical/
Potential Problems After Surgery
November 9th, 2009 at 6:49 amWhat you are calling “frequent burning” is what we all call so blatantly “BUTT BURN.” There are a couple things I could suggest for you to consider (1) Learn more about fiber supplements because i was told in the hospital to use Benefiber ONLY when I had the ostomy and to use Metamucil when ONLY when I had the takedown. Apparently Metamucil will make you too thick when you have the ostomy and works better after you have the takedown. (2) As for the butt burn when you get your fiber regulated, you might also want to try slowing your system down by using something like immodium, that will cut down on some BM’s. and (3) You might want to try NOT WIPING but pressing to absorb the waste and then use a wet wipe to clean the waste residue. (4) There are a ton of cream options out there and you might want to try exploring other options, I go inbetween being a fan of Tucks cream or my ultimate favorite cortizone cream. (5) And after 10 years why your pouch is acting up to give you BB is a bit odd so you may want to contact your GI and let them know. (6) Has anthing in your diet changed lately? Are you on any new medicines? I know when I eat poorly my BB acts up. Also over at http://www.jpouch.org, they have a great forum for BB related concerns and you will get lots of feedback there to maybe help ease your concerns. If you go to their “Find” section and type in burning, or butt burn you’ll find lots of pre-answered comments.
Photos 1: Colectomy
November 4th, 2009 at 8:41 amHi Beatriz, Do you know what has made your Dr. say you have CD and not UC? Unfortunately, that seems to happen to most people around surgery time, they take a blood test that shows possible CD markers? Is that your situation, if so, let me know and we’ll send you some info on that. They thought I too had CD and not UC but turns out just UC. Now, there are people who do have CD instead of UC and living well with their jpouch like Lizz — here is a link to her posts
http://www.jpouch.net/author/lizz/ She is incredibly strong and been through A LOT, but if you do have CD she will be a great contact for you. And we do know others who are now living well with a perm ileo or jpouch with CD. So although it is not the ideal diagnosis to have, there are happy endings. Stay in touch and we’ll try to connect you to the right people in your shoes.