About Jpouch dot net
Welcome to jpouch.net! We are growing community of diverse individuals and families dealing with colorectal surgery. Bloggers on jpouch.net are regular people from around the world dealing with jpouch related issues. There are many medical reasons to have Ileal Pouch Anal Anastomosis (IPAA), also known as Ileoanal reservoir surgery or jpouch surgery. Some medical conditions that might result in jpouch surgery include: IBD (such as Ulcerative Colitis), FAP (familial adenomatous polyposis)
How to use this site: This website has 5 main features to offer anyone facing jpouch surgery:
1. The HOME tab is our front page, here you can find the most current posts from our community of bloggers.
2. The Our Stories & Photos tab gives you access to over 10 different stories and photos from jpouchers around the world. Here you will find in depth explanations about their individuals journey. Also, you will find a variety of stories ranging from gender, age, country, surgery procedures, gay/straight and more are being shared. Be patient reading through the stories and you’ll likely find someone very similar to your situation.
3. The Bulletin Board tab takes you to an open forum for posting your stories or questions. If you are not responding to a direct post but you have questions/concerns/comments in general feel free to post.
4. On the right hand side of your screen you’ll find links to wonderful support groups, medical sources, and other blogs/websites.
The technical stuff: This website is powered by Wordpress, the template is based on Blue Dream 1.3 with major code and design tweaks by Eric Mills in Denver, Colorado and it uses the normal really nifty plugins like All in One SEO pack and some other stuff. We’re hosted by Bluehost (seems we’re pretty blue), and all the content is the property of Jpouch.net. Please spread our posts to help those in need, but don’t steal our content. Thanks.
Why this site was started: In 2007, after a 7 year battle with Ulcerative Colitis, Mark underwent his first colorectal surgery.
Myself, Megan, Mark’s partner of over 10 years documented his surgery journey. At first, the photos and journaling were put in flickr photos and shared with family and friends. One thing led to another, and we created our initial surgery blog (ucstory dot wordpress dot com) to share with others facing Mark’s surgery. We received incredible response, feedback and support to the photos and journaling that were able to start sharing our blog with others in Mark’s situation. Well, here we are 2 years later with a community of bloggers and readers and we’ve grown to become jpouch.net.
See, when Mark was deciding on surgery and we were looking online for info, we couldn’t find anything detailed from the patients perspective showing the gritty truth of ostomies, scars, recovery time, etc..We felt being able to see the surgery process might help others prepare for their surgery and remove some of the fear of unknowns.
If you want to share your story or need anything please feel free to contact us, Mark and Megan at mdhilton@gmail.com.
As a community, we’ve spent many hours building this site as a wonderful resource to help you and your family/friends cope with this journey.
Natasha says:
April 30th, 2009 at 9:03 am
Hi, I just discovered this blog today. Looks like it might really help me; I have been searching in vain for other jpouchers.
I had a complete colectomy 5.5 years ago, temporary ileostomy, then “takedown” about six weeks later. I am still having lots of pain and problems, over five years out. I’ve managed to stay out of the hospital for a while, which feels good. But I still struggle every day with figuring out diet, meds, pain, and sleep.
Anybody out there who’s been living with jpouch for several years?
Natasha
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Megan says:
May 2nd, 2009 at 9:13 am
Hi Natasha, sorry to hear about the issues you’ve had since takedown. Have you posted your concerns over on jpouch.org – they have many veteran jpouchers who can help you. Except Liz has had her jpouch for four or so years and she has had complications due to jpouch with crohn’s . You may want to flip through her posts (see link below) and contact her http://www.jpouch.net/author/lizz/
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Jim says:
May 9th, 2009 at 1:42 am
What a important find this has been. I came across the blog via a Flickr entry and consider myself lucky. My journey is just getting started. Im 61, 62 in July had been fit and active up until the beginning of the year .Married for 34 years. Im an American living in Oxford UK . I make two trips a year back to States tio see family including 89 year old mother , father died two months ago. Retired from 26 years of media journalism. I was told this past Tuesday that I have an agressive Invasive Bladder Cancer. The complete removal of the bladder and prostrate along with some neighboring tissue and tubing is the plan, it was a desperate day Tuesday. But I have now got a hold of it and looking at the options. They are giving me the option of a Urostomy or a neo-bladder. This will be proceded by a chemo course of one session every two weeks for three sessions then a two week break before surgery.
I have appointments this coming week with the Surgeon, the Oncologist, the Radiologist. This past week I met my Specialist Nurse, and the Stoma Specialist Nurse.
Its all been at a whirlwind pace, but having found this site I feel a lot better. I would like to keep a blog so that as I make this journey I hear from others with their experiences and “tips” and hopefully help me with questions and an ear to listen to my moans ,groans,complains ,worries etc. Hope to hear from you all and I know now that I have found you here it will be a boost to me .
Thanks Jim
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Bonnie says:
July 9th, 2009 at 7:23 pm
it was a very rought two months that ended with FABULOUS RESULTS….!!I had a total colectomy in January 08′, meaning I have no colon and now I have a j pouch. Surgery was a nightmare..I endend up in the hospital for almost 2 months due to complications ,..however I did get to have the reversal after only 2 weeks of the 1st surgery. My question to the women that have a j pouch ..do they have any advice for me regarding pregnancy. I am 24 years old. I am not pregnant now but I def. want to have children in the future..maybe around 27 or 28ish? I have heard many bad things and some good things about pregnancy with a jpouch….any one know the truth and not just word of mouth infor.? God bless each and everyone of you reading this….Surgery is tough but the original disease was a hell of alot worse,,that could be debatable …HOWEVER..having surgery was the best decision ever because now I am healthier than ever before…stress free , infact I am a yoga instructor now and can do things I couldn’t do before surgery and UC. No more blood, no more pain, I can sleep at my boyfriends, I no longer shit my pants, or need to carry extra underwear or pants with me…and sooo much more…after surgery there is leakage at night however it gets better and for me having a healthy diet helps tremendously …I have no more leakage and my body activity is just as healthy as a person with out the surgery…May all of you be HAPPY, HEALTHY, and embrace life each and everymoment in the moment. God bless every one of you!!!!
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Megan Reply:
July 10th, 2009 at 7:45 am
Bonnie, what a wonderful post! You sound great these days even though your surgeries were not easy, it seems so hit and miss for good vs. difficult recoveries. As for children and your question, Jamie is pregnant just 6 months after her takedown, her post is here and good for you to read http://www.jpouch.net/2009/07/02/jpouch-happenins/
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ml says:
July 20th, 2009 at 7:57 pm
Megan, I got contacted by a man named “harry” out of australia. He said I should read his blog on this site. But I cant find it. Let me know if he was real. He commented on my blog. Thanks. ML
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Megan Reply:
July 22nd, 2009 at 2:35 am
Hi, Oh yes, Harry wrote on the site, here you can see his post, and my response:
http://www.jpouch.net/surgery-photos-your-story/#comment-4834
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Rebecca says:
July 24th, 2009 at 1:50 pm
I just stumbled onto this website today. I will be 3 years out from the colectomy in September with my takedown being done in December, 2006 (a week before my birthday and Christmas, what a gift!). I was diagnosed with ulcerative colitis in November, 1995 but had had symptoms for many years before. The disease was kept under control with 1200 mg. of sulfasalazine a day until 2004. I had a severe flare-up that resulted in a 10 day hospitalization. At that time, I was discharged on 40 MG of prednisone a day. Every time I tried to taper off the prednisone, I would always start flaring again at about 20 mg. My gastroenterologist put me on Imuran with no luck. Finally, in April 2006, after having several severe flares, I was at the ER again. After the ER doctor did the requisite blood work and CT scan, he called my gastro. My gastro came to the hospital and after reviewing all the blood work results and looking over the CT scan report,he said I needed to see a psychiratrist. He said he was expecting to find me pouring pans of blood, not the “small” amount that I had. A month later, my husband rushed me to an ER at a different hospital, where I was referred to a wonderful gastroenterologist. Following another week long hospital stay, I was back on the 40 MG a day of prednisone. My new gastro did a colonoscopy about 2 weeks after I was discharged and all looked good (his words). Six weeks later, when I was down to 20 mg, I started bleeding again. A colonoscopy was scheduled and after it was done, my new gastro told my husband that I had made a believer of him. He said he really had thought that I was blowing my symptoms out of proportion. He referred me to a colorectal surgeon and my colectomy was scheduled for Sept. 12, 2006. The pathology of my colon showed that I had started into toxic megacolon. I had some complications with severe dehydration after the colectomy but finally rallied about mid-November and have been doing well since then. What brought me to this site was to see if anyone else has experienced a significant weight gain after having their takedown?
Rebecca
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Jmanlife Reply:
July 25th, 2009 at 5:46 pm
It has been many years since I had what is now called a “take down”. After surgery I was around 163 pounds. I am now around 230 lbs. I have read several cases on different sites and most people seem to be suffering from weight loss. I thought I was alone in the area of wieght. I cannot seem to get it off. My doctor says it is better to have on the extra weight with a J-pouch rather than to not have enough. I feel every day is borrowed and thanks to this site and others like it, I now know that I am not alone. I wish I could say for sure why I am not having a difficult time putting on the pounds, but I can tell you that I did not like having my ribs showing. Hang in there, the weight gain may be a blessing in disguise.
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Shakena Reply:
August 8th, 2009 at 11:59 am
Oh gosh, the same thing happened to me. This summer may two years since I had my surgery, and I have put on weight as well. I am really concerned. I am physical, and I watch what I eat. If someone has some suggestions please fill me in.
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Jmanlife Reply:
August 9th, 2009 at 10:42 pm
Shakena:
I ended up having a problem with my Gall bladder. The surgeon said it was full of sludge. It was the most painful thing I have ever experienced. I ended up having it removed. I am not sure but I think the gall bladder helps the body digest fat from food. I have often wondered that is why I have gained weight over the years. Out of curiosity, did you have your Gall Bladder removed?
Jmanlife says:
August 9th, 2009 at 1:09 am
I ended up having a problem with my Gall bladder. The surgeon said it was full of sludge. It was the most painful thing I have ever experienced. I ended up having it removed. I am not sure but I think the gall bladder helps the body digest fat from food. I have often wondered that is why I have gained weight over the years. Out of curiosity, did you have your Gall Bladder removed?
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April says:
August 11th, 2009 at 6:09 am
That is funny that you having problems with your gall bladder. I have had problems with mine ever since I had my take down surgery. I am just to afaird to see the doc I don’t want another surgery.
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Becky says:
October 12th, 2009 at 5:32 pm
I found this website just before my j-pouch surgery just 2 weeks ago. I spent one week in the hospital, and have been home for one week now. I have an ileostomy bag right now, and will have my takedown surgery either the first or second week of December. It has been so wonderful to know there are other people out there going through the same things as me, and that there is a forum for discussion and support that is safe from ridicule.
Colitis can be a very embarrassing disease, and I’m still not super comfortable discussing it with strangers, but knowing that I’m talking to other people living with UC makes it easier.
Also, it has given me alot of hope to read the stories on this site. I feel much more fortunate knowing my health is essentially fine besides my UC because there are so many others dealing with being very sick all the time. I’m still dealing with about the same level of fatigue as before my surgery, and more in some ways, but I feel myself improving, which gives me great hope. I used to run track, but haven’t been able to run in almost 7 years. I look forward to being able to do so again soon.
I do have a question that I hope many people will answer. The skin around my stoma is pretty irritated, and I believe that it’s because I can’t get a good seal with my bag right around the opening. And now that my skin is irritated, it’s harder to get that seal, and so output is able to get under the edge of the bag… which further irritates my skin. It’s kind of a vicious cycle now, and I was wondering if there was anyone who had gone through the same thing, and knew how to help it heal. The seal is getting really gummy around my stoma, as well. Any suggestions??
In any case, thank you to all the people putting their stories and pictures up. Seeing a stoma before my surgery calmed a lot of my nerves and helped me mentally prepare for the whole experience. God bless you all.
-Beck
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Shakena Lee Reply:
October 27th, 2009 at 7:07 pm
Hi, I am glad to hear that you are doing well. I too had the problem with the irritation. It was very bad for me. Because your bowels are more liquid than solid, it’s going to happen. My home health nurse gave me a type of powder to put on it to keep it dry. I don’t remember the name, but I will try to look for it. Also, I wanted to ask, how ofter are you changing your bag?
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sarah says:
November 10th, 2009 at 10:07 am
Hi Mark & Megan,
Thank you for this great site – I am a nursing student and I’m preparing for my first surgical rotation. Your story was very helpful in helping me understand how a patient would feel about their condition. Glad to hear all went well and you had a good hospital experience. Thanks again.
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