About Jpouch dot net

Jpouch Life LogoWelcome 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.markand-megan-mexico-may-2008 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.

78 Responses to “About Jpouch dot net”

  1. avatar

    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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    Christopher Reply:

    hi, I had my surgery (well 6 surgeries within a 10 day period) in 1997, the first year after the jpouch was fitted went almost complication free, then I started getting severe panic attacks, it was post operative stress, I was in hospital for 4 months just with the Colonectomy, it was awful. But, I get lots of ongoing medical issues too, terrible joint pain in lower joints, severe disturbed sleep, my pouch works every 2-3 hours through the night so I wake up nowhere near refreshed, I have recently also been getting terrible lower back pain, really extreme pain, it was diagnosed as a trapped nerve? However I’m reading today for the first time about the Spondylitis, my symptoms are too close for comfort and I’m fearing the worst. I also used to have huge swelling on my knees too, my GP would have to drain them every two weeks without any anesthetic, the pain was something else! But I was put on Sulfasalazine and after a while they stopped all the swelling, but not the pain. I get Pouchitis at least twice a year too….our condition should be classed as a disability I think. I still would opt for a pouch over a bag straight away. I was 19 having my Colon removed and the whole process to having my pouch was over a two year period…the problem that other people don’t seem to want to accept and understand is the chronic fatigue I get, I suffer badly and it’s the single most problematic symptom. I was given Oxycodone for 9 or 10 yrs and the GP was massively overprescribing it, I once stopped taking them and was so ill I was rushed into emergency, I didn’t know that I’d become very addicted to them, I went to rehab but now 18 months later I still feel lost and ‘out of body’……I can’t rember what sort of person I was before I took those pain killers? It’s not good…I’m now 38 and I’ve not been able to work since 1997, it’s the thing I miss most in my life I think…luckily I was heavily insured even at 19, and health insurance here in the UK is not a common thing, I don’t know why I took that policy really but it has certainly taken the stress of financial issues away….hope this helps, it seems a long post but I coul go on heaps more..

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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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  3. avatar

    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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  4. avatar

    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:

    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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    Jackie Reply:

    Hi, I’m new to this site, and have only logged on for the past 4 min, but so far looks great (wish i’d found it sooner!)
    For Bonnie, I had my colectomy in Nov. 2007 (3 months after I was married I was diagnosed with colon cancer) and take down in Sept. 2008. I’m 28 years old and my husband and I really wanted to start a family. We started trying in April 2009 and by August 2009 we conceived. It is possible – and for us it was pretty quick :) So don’t let any of the negativity online get you down!!!! We are very excited for our first baby and now I’m looking for information on birthing options (which seem to differ for women with a J-Pouch)… anyway good luck!:)

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    Shakena Lee Reply:

    I am so happy to hear that because I have really been concerned with conception! Congrats to you!

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    Ashley Reply:

    Hey, I too just found this site! I had my colectomy in 2006, and had the j-pouch connected 4 months after! I was diagnosed with F.A.P.. I was always a little worried about pregnancy after the j-pouch. We are now almost 8 weeks pregnant and going to see one of my specialist in a week and a half. Before I had my surgery thought the awesome specialist I had explained that if I was going to have kids that I should have them via c-section due to the amount of pressure that a regular delivery would cause on where the j-pouch was connected! I think that after the surgeries we went through for the colectomy a c-section can’t be that bad! Besides it is for a great reason!
    Congrats and enjoy your pregnancy!

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    Brynn Reply:

    I am a 27 years old and had my total colectomy with ileoanal resevoir done when I was only 14. I started when i was 9 with ulcerative proctitis then it traveled into my intestines and i was diagnosed with ulcerative coloitis. I had to have a ovary removed in late 2008 due to a large cyst on it. i was told that from my colon surgery my remaning fallopian tube was stuck to my side and full of scar tissue. i really want to have children and i am now faced with the fact that i may not be able conceive on my own. i was worried that my body wouldn’t be able to handle a pregnancy after such a major surgery. When i had my surgery it was still fairly new and my doctor had told me that i probalby shouldn’t get pregnant. But when i had my ovary removed i spoke with the colon surgeron who stood by for my surgery and he told me it was safe. But now reading this i realize i can have my own baby…just maybe through invitro.

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    Christopher Reply:

    I can identify with you when you say you feel healthier than ever before since your Colonoscopy….despite the many complications and ongoing issues related to the Pouch and the initial colitis, almost within weeks of my Colon going I stopped getting terrible painful mouth ulcers, not had a single one since, yet I suffered for most of my life with them. I only ever had Colilis for a two week period, it was so severe I lost half my body weight in that time, I had my Colon removed exactly two weeks after diagnosis but looking back my Colon was responsible for so many other problems, anxiety, cramps, sluggish feelings, bad skin, very pale complexion. All these things have gone from my life now. So there are two sides of the story for me definitely. Plus points as well as negative for sure. 

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    Christopher Reply:

    Obviously I mention Colonectomy not Colonoscopy….lol

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  5. avatar

    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:

    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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  6. avatar

    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:

    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:

    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:

    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?

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    BabyRN Reply:

    I have the same problem with weight gain after take down and I can’t seem to lose it. I had a terrible flare postpartum which required surgery so I had the baby weight, but now I have extra weight on top of that. I’m glad I’m not the only one.

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    Ashley Reply:

    I am so glad to hear that I am not the only one with the weight gain issue!! I lost about 40 lbs or so after my colectomy but it all came back plus a bit! I think it has alot to do with not getting all the good nutrients ouut of the food like we used to. I also have trouble digesting most vegetables except green beans and carrots so I am sure that hasn’t helped the weight loss either!

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    Christopher Reply:

    Oh I’m so glad I came on here this eve, I’m so struggling with my weight, it’s not realistic in any way, I put on weight looking at food I swear, it’s nice to know it may be a common issue with us Jpouchers, I knew deep down I wasn’t greedy but trying to convince others is a hard thing to do when your standing right before them looking like you’ve just eating a whole cow! Haha….

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  7. avatar

    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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  8. avatar

    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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  9. avatar

    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:

    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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    Anne Reply:

    Hi Becky,
    I had both a colostomy for 4 mths. & ileaostomy for 2 1/2 yrs. I also had many surgeries & complications but I had the same problem with irritation of the skin around my stoma & a nurse in the hospital used a seal put out by Eakins – it is very pliable and worked for me as a lifesaver. Hope this helps you.

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    Wes Reply:

    I had a huge problem with skin irritation. Tried crusting with the stoma powder and that helped a little. What really helped was using a skin barrier sheet glued down with Ostobond. 

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  10. avatar

    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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  11. avatar

    gary says:

    November 17th, 2009 at 7:49 am

    i am going to have my colon removed on dec. 7 th. will have a j pouch for about 8 weeks and then go back in for the takedown surgery . i have had ulcerative colitis for over 30 years , i am now 50 years old. im pretty stessed out about it all , not knowing what to expect , but this website has already provided me valuable info . thanks

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    Cynthia C. Reply:

    Good luck Gary with your up and coming surgery! you are on the path to regaining your life back!
    wishing you the best and a speedy recovery, Cindy

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  12. avatar

    Shakena Lee says:

    December 28th, 2009 at 6:46 pm

    I just got out the hospital two weeks ago I had pouchitis. It was very painful! My symptoms included nausea, vomitting, stomach pains, and fever. My pouch was so imflammed it was pushing up against my kidneys, and Im dealing with issues with that. I also received two pints of blood!

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    Kera Reply:

    Shakena…..how were you diagnosed with pouchitis? I went to the ER last Thursday doubled over in pain and had extreme nausea….they thought that I had a partial blockage but by the time they got me back for x-ray they didn’t show anything….I have still been having some issue’s, not as bad but I have pain and bloating and things just arent’ right. The doctors keep thinking that my small intestines are getting “Kinks” because there is more room now with no colon. Today is the first time I have read about pouchitis…I’m wondering why my GI hasn’t checked my j-pouch to make sure it isn’t infected

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    Christine Reply:

    Kera – I have had my pouch since 2003. Please consult your doctor again regarding your issues. In 2006, I ignored those same symptoms because no on told me about intestinal blockages. By the time I did go to the hospital the blockage had strangled part of my small intestines. I went into septic shock, had several fistulas, was in a coma for 3 wks, spent 9 months in the hospital. Please do not ignore your symptoms….you know your body better than anyone. You could just have pouchitis, which I would have your doctor check out. Good Luck to you. No one realizes how much this type of surgery takes a toll on your physical and mental well-being. It’s wonderful to have this group as a resource to go to.

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  13. avatar

    Sam says:

    April 28th, 2010 at 9:59 am

    Hello Mark and Megan,

    How are you? I hope you are both well. I have tried contacting your email above but I think there is an error with it.

    I am in the process of creating a new UK ostomy community. After researching all existing blogs, communities and platforms surrounding ostomy we are trying to create a shortlist of bloggers we would like to feature on our new community. Your blog http://www.jpouch.net/ has been recommended numerous times and I also love how informative and helpful it is but most of all how it acts to serve the community.

    The community platform we intend to create will contain a forum, informational content (articles, videos etc) and in the centre of it all we are developing a blog with multi bloggers. We want to build a community that is a success just like http://www.jpouch.net/ and understand that in order to build and maintain a successful community the key stage is sourcing the right bloggers. We have begun approaching some very good UK bloggers but are now looking for a US female perspective and would love to see if Liz or Jackie would be interested in sharing their experiences with the UK ostomates? We feel, yourself and Mark and all the bloggers are an inspiration to the ostomy community and it would be great if you could put us in touch with Liz and Jackie. Even if this is not possible it would be great if we could discuss how we could work together in the future perhaps at some point. That would be great.

    I look forward to hearing from you and I hope you are both well.

    Many thanks,

    Sam

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  14. avatar

    Shantell Swinerton says:

    April 30th, 2010 at 2:03 am

    I’m normally not the guy to write my opinion on other’s write ups, but for this article I just had to do it. I have been browsing through your site a lot nowadays and I am super impressed, I think you could really become the main voices for this topic. Not sure what your load is like in life, but if you started commiting more effort to writing here, I would guess you would begin getting a bunch of traffic soon. With ads, it might emerge as a great second revenue source. Just a concept to think about. Good luck!

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  15. avatar

    Amelie Griffiths says:

    June 16th, 2010 at 6:12 pm

    my mom suffered colitis last year and it was quite an expensive disease.;,:

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  16. avatar

    Laura says:

    June 22nd, 2010 at 11:14 am

    Hi, My Husband suffered 14 yrs. with UC. Now with a J-pouch for 5 yrs. things have not been the way we’ve thought. We are trying to find a doctor that can check him and find whatever is wrong with him. I see that Mark has done very well can you please let me know who and where is your doctor. I’m desprate.

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    jackie Reply:

    Laura,
    Where are you located? If you are anywhere near Cleveland (even a state or 2 away) I would go there. They are pioneers for this surgery, and their whole staff is nothing shy of amazing. I’m going in for my #2 of 3 steps in august, and my surgeon is located there and is also head of the department. I would HIGHLY HIGHLY recommend it. Hes also very skilled at fixing mistakes made by other surgeons. Good luck. Also mayo clinic is very well known as well.

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    Laura Reply:

    Hi Jackie, Thank you very much for your response we are in Texas no where near Cleveland . We are trying to find doctors with new ideas but closer to us. Thank you and good luck with your next surgery

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    Mallory Reply:

    Laura,
    I live in Montana, where there is absolutely no colorectal surgeon in the tri-state area, and I was referred out to Pacific Medical Center (Swedish Hospital, First Hill campus) in Seattle. I know it’s a long way from Texas, but the staff is absolutely amazing. My surgeon was Dr. Richard Billingham–most dedicated, on-the-ball doctor I’ve ever had!

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    Tina Reply:

    Hi Jackie, I am also going back to Cleveland for my 2nd of 3 surgeries in August, they are wonderful there as you said.

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    Rachel Reply:

    I live in Oklahoma, but I went to Mayo Clinic in Rochester. I researched through US News & World Report where the best GI doctors were. Mayo in Rochester was tops, followed by Cleveland Clinic, etc. Insurance even covered the entire deal for me. Was it hard to go out of state to get help for this? Yes, but I would do it again – the level of care was that much better than it was here. 

    You can check out this page at my blog to see my story of UC and my 2 trips to Mayo Clinic. Don’t hesitate to ask if you have any questions!  http://pencilshavingsblog.com/about-3/ulcerative-colitis-me/

    Unequivocally, getting the JPouch was the BEST decision I have ever made with regards to my health. UC was terrible, but I have my life back now.

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  17. avatar

    Shelly S says:

    July 2nd, 2010 at 1:22 pm

    My dad is having lots of problem with his J pouch surgery and he has lost so much weight. My aunt, who was a GI nurse, says there is no way he should be going through everything he is going through. He went to Mayo in Rochester, MN, and now I am thinking we need to go somewhere else to find out what is going on. He never thought he would live his retirement like this. Does anyone have any insight – he has bowel movements sometimes 6 in 45 minutes, and of course his butt is raw.

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    Megan Reply:

    Hi Shelly, Has your Dad been diagnosed with Pouchitis? His pouch may have pouchitis and that could cause the 6 BMs in 45 mins. He also may be having trouble emptying his pouch which is making him feel like he needs to go to the bathroom frequently. Trouble emptying the pouch could be related to many things, but pouchitis can be the big one, or he could be having trouble with his rectal cuff, fissures, stricture or other related jpouch issues. Mayo is known as one of the top clinics for GI issues, but DEFINITELY seek other opinions from other doctors (both GI’s and surgeons). When Mark (my husband) was sick we sought the opinion of 4 doctors before getting the care we knew was right for him. We became more his doctors than his doctors were, we knew everything about his disease and jpouch and therefore, we could help diagnosis and get care that could help him.

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  18. avatar

    COP COPINE says:

    November 22nd, 2010 at 5:47 pm

    Hi I love this discussion board I’m also passionated in extreme sport and techniques to be much more successful…I discovered a piece technology that make me far more successful I also like mode and fashion. Thanks again for your forum Bye COP COPINE

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  19. avatar

    Photoelectric Smoke Detector says:

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    [Reply]

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    susan says:

    April 2nd, 2011 at 6:45 pm

    I have had my J pouch for 22 years. I was one of the first patients to have one performed. My quality of life overall was much improved. However, I have had my share of complications, and many episodes of pouchitis also. I recently had an ileostomy because of pouch dysfunction. My J pouch is still intact, and I hope to get hooked up again at a later time.

    [Reply]

  21. avatar

    Shakena says:

    April 4th, 2011 at 1:40 pm

    Susan, that sounds like my story. I have had my jpouch for 4 yrs and I have had alot of problems. Last week I had surgery so Im wearing an ostomy bag again. Unfortunately, my doctors are saying they dont think I should get hook back up again (ever).

    [Reply]

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    Kelsey says:

    February 20th, 2012 at 4:42 pm

    Wow! I just discovered this site and am so eager to keep reading through everything and to share it with my family! My family has FAP, familial Adenomatous Polyposis. My father, and two of my brothers have all had their colons removed, gone through the all the surgeries and are now attempting to lead normal lives. I found this site while looking for answers to my brothers most recent development. (I’m not an expert with the technical language so forgive me if I say things in a more layman terms). My brother had his colon removed at 16 years old in 2002. He had the ileostomy (?) pouch for about 3 months before his re-connective surgery. Of the three people in our family who’ve had this done, he is suffering the most. Recently he’s developed symptoms of chronic pain in three parts of his abdomen and the doctors have been able to do nothing. He’s had all sorts of tests done, exploratory surgeries, he’s on a ridiculous routine of pain meds, and he’s still undergoing further testing and counseling, but it’s not seeming like we’re getting any answers or any solutions. The only thing the doctors can think of that is causing this, would be nerve damage from when he had his surgery so they’ll be starting to give him lydocane(?) or phenol injections in an effort to numb the pain and maybe find the source, but to us it feels like just another stab in the dark. The pain is constant, debilitating, and a large hindrance on his ability to live a normal life. I’m going to read through the blogs, but if anyone has a similar story, suggestions, or just anything that might help us out, it’d be greatly appreciated!

    [Reply]

    avatar

    Eric Reply:

    Welcome, Kelsey! I hope you find something around here that will help you and your family in some way. There is a lot of great information, and we’d love to hear your story, too.

    [Reply]

    avatar

    Sherry Reply:

    Kelsey, I have been suffering from the same symptoms your brother has and I have been for 3 yrs now. I also have a family that suffers from F A P. I have been on pain meds almost continuously and now I take paragoric liquid and use sanastaton injections. It seems to help so much I still have a flare up and I have bleeding every couple wks or so but for the most part I can enjoy my family life.

    [Reply]

  25. avatar

    Rick says:

    March 16th, 2012 at 12:41 pm

    Hi, Just found this site yesterday and its awesome. I had my first surgery 2 1/2 weeks ago (2/29/12) to remove my colon and rectum. I have a loop illestomy and will probably be scheduled for the take down surgery sometime in June.
    I was diagnosed only 18 months ago with UC and was on 6mp, Double dose of Remicade, 7 rounds of Prendisone, Asacol and so forth. Obvioussly nothing helped. Surgeon indicated that the colon was severly diseased and should have been taken out sooner.

    I am a 42 year male, was in good health, however lost over 25 pounds leading up to surgergy. Hosptial stay was uneventful, out on the 5th day. Everything was going along according to plan. However, about 5 days ago, I started having moderate to severe GAS cramps in my stomach and my anus. The cramps were rolling, every 10 to 15 minutes. Surgeon thought I had a partial blockage, but that was tested for yesterday via a CAT scan and all is good. The cramps produced a feeling of wanted to release my bowels. I held back on that thinking that would be a disaster. Surgeon said no problem, don’t squeeze or put any pressue, but if something comes out no problem. I tried it to releive the pressure, it works temporarily.. alot of water mucus just pours out. Still have the stomach gas cramps, but less pressure on the anus if I allow the mucus to come out that way.
    Any one experience something similar.
    Thanks for any insight.
    Rick

    [Reply]

    avatar

    Jack Reply:

    Rick,
    My wife has gone through these surgeries, and though I should ask her first, I’m pretty sure she experienced the same thing. Mucous and such. While the discomfort from the remaining rectum never went away 100% until the bowel reconnection, it got was better over time.
    Hope this helps.

    [Reply]

  26. avatar

    Dennis says:

    April 13th, 2013 at 7:54 pm

    I want to thank you for the information.  It has been very helpful, as I get ready for my surgery on Monday (April 15, 2013).  
    Thanks again, 

    [Reply]

  27. avatar

    Rick says:

    April 14th, 2013 at 2:15 pm

    Dennis,

    Good luck.  I’m about 13 months from first surgery and 10 months from the take down.  The surgery gave me my life back.  I have very few limitations in the food I eat and I am back exercising 6 days a week.  Best decision I made.  However, be patient during the first 4-6 months while your body re-adjusts to your new inner workings.

    [Reply]

  28. avatar

    Miriam Larson says:

    September 27th, 2013 at 12:53 pm

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    thank you so much –
    Miriam Larson
    milarso1@vt.edu

    [Reply]

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    My daughter will be turning 13 in a few weeks. When i was pregnant with her, her paternal grandmother told me she needed to be tested when she turned 13 for (i can’t remember what) and if she had the condition she would need a jpouch. I am trying to find out what sort of testing or what condition this may be for before i take her to the DR. I no longer know where to find the paternal side. 10 family members that i was aware of from her fathers side had this jpouch procedure…..

    [Reply]

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    Ivana says:

    April 14th, 2015 at 9:57 am

    Hi Mark and Megan!

    I am looking for folks within the Crohn’s disease/Ulcerative Colitis/IBD community who would be able to help me promote a documentary I am working on. I am also interested in having you interview for the film, if you have any interest. 

    I have been working for months on preparing to film a documentary called “The Crohn’s Moans”. I have set up interviews with physicians and patients all over the U.S. and now am looking for help raising the funds through Kickstarter.com, a crowd-funding site. I launched the project yesterday and so far it has gone well but I need to pick up momentum and really get the word out! I truly want to help and believe that I have found a great deal of information that many people are not aware of. 

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    If you are interested, you can check out the campaign page here: https://www.kickstarter.com/projects/1517211936/the-crohns-moans

    [Reply]

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