35 Responses to “About Jpouch dot net”

1. 

   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

   [Reply]
2. 

   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/

   [Reply]
3. 

   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

   [Reply]
4. 

   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!!!!

   [Reply]

   

   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/

   [Reply]

   

   Jackie Reply:
   December 26th, 2009 at 6:35 am

   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!:)

   [Reply]

   

   Shakena Lee Reply:
   December 28th, 2009 at 6:41 pm

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

   

   Ashley Reply:
   January 9th, 2010 at 7:47 pm

   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!

   

   Brynn Reply:
   July 10th, 2010 at 4:11 pm

   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.
5. 

   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

   [Reply]

   

   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

   [Reply]
6. 

   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

   [Reply]

   

   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.

   [Reply]

   

   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.

   [Reply]

   

   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?

   

   BabyRN Reply:
   November 20th, 2009 at 5:49 am

   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.

   [Reply]

   

   Ashley Reply:
   January 9th, 2010 at 7:54 pm

   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!

   [Reply]
7. 

   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?

   [Reply]
8. 

   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.

   [Reply]
9. 

   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

   [Reply]

   

   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?

   [Reply]
10. 

    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.

    [Reply]
11. 

    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

    [Reply]
12. 

    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!

    [Reply]
13. 

    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

    [Reply]
14. 

    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!

    [Reply]
15. 

    Amelie Griffiths says:

    June 16th, 2010 at 6:12 pm

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

    [Reply]
16. 

    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.

    [Reply]

    

    jackie Reply:
    June 23rd, 2010 at 6:16 am

    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.

    [Reply]

    

    Laura Reply:
    June 27th, 2010 at 8:02 am

    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

    [Reply]

    

    Mallory Reply:
    July 13th, 2010 at 8:48 am

    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!

    

    Tina Reply:
    July 24th, 2010 at 3:12 pm

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

    [Reply]

    

    Rachel Reply:
    July 24th, 2010 at 5:50 pm

    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.

    [Reply]
17. 

    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.

    [Reply]

    

    Megan Reply:
    July 4th, 2010 at 11:30 am

    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.

    [Reply]

Leave a Reply