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Long term J-Pouchers

by Mark on Friday, October 3, 2008 18:09

This entry is filed under: UC

Here is a great thread that just started on the jpouch.org site that has people with long-term jpouches talking about his or her pouch. Some interesting info:

Long-Term J-Pouchers

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University Research on Jpouch Social Support Sites 7 Comments Since Wednesday, March 3, 2010, 9:27
Commenter with Questions 7 Comments Since Thursday, February 25, 2010, 12:28
Blood, Poop, and Tears 2 Comments Since Friday, February 19, 2010, 17:40
I’m so over this colon. 12 Comments Since Monday, February 15, 2010, 13:42
Take a walk in my shoes 40 Comments Since Saturday, February 13, 2010, 22:38

Hello ML, I see you had your surgery 1 week after my take down surgery. I am presently having 12-15 BMs per day. I also have a ...

Sorry, sounds not fun. I had a couple temp ileo bag issues, but I just dealt with them and waited till jpouch. Yours just sounds...

Fantastic attitude & you're funny as hell! I've still got a semi-colon (which is good because I teach English), so maybe my o...

Rachel, I use Depends and they help keep the bedding clean. I wear underpants over them to make me feel more normal in front o...

Michael, these folks nailed it right on. Travel light...the rooms aren't that big in any hospital. I brought my Blackberry inste...

Colin, that happened to me as well. Do you have a stoma nurse? Mine was covered by my insurance. The nurse provided me very g...

Hey guys, had a rough morning today. I woke up with my bag totally inflated and hard as a rock from gas/poo (as usual...that's not...

Hello There, I'm so, so happy i went through with surgery. i opted out of choosing a Jpouch for now, because i was so sick and w...

ML- I too had a lot of discomfort around the stoma area post takedown. It was tender to the touch and had a slight bump for a goo...

Teri, thank you for bringing up the topic of night leakage. I had my takedown 7 months ago and was very surprised when it happene...

Hi Michael, I just had my surgery done in late January 2010. I suggest slippers, because even though they give you socks, it's...

Yeah, the main things are a soft thin robe you can easily slide on and off for walks down the hall - don't take a bulky robe, a th...

For the first surgery I would say take some comfy clothes to get into after the gown stage because let's face it those gowns are j...

I'm set to go in Thursday morning for my first surgery. Does anyone have any tips on what to pack? I'm sure I'll be in a hospita...

Hello Mark, Thanks for your response. I can't tell yuo how much your input means to me. When I feel there is no hope, this bo...

Hey gang! Got discharged last night from the hospital for my takedown surgery. I CANNOT believe how drastically different an exper...

Joe, Oh yeah, the first few weeks definitely felt like having UC all over again. In fact, I wrote just that in my photo journal fr...

I feel your pain. I had my take down on 2/9/10 and although I was no dealing with UC prior to surgery the doctors were right I wou...

Thanks for your input. I find I am eating well but I also have that urge to empty my pouch. It seems it is always loose stool. ...

Took the survey, Megan. It's the least I could do for what you and Mark have done to help out this community....

Jackie, Yes of course we plan to share the results with jpouchers and the medical community as well....

Joe, I'm a slight guy so my weight gain wasn't very much but over about a year and half after takedown, I had gained about 10 pou...

Megan, Will you post the results of this survey? I'd be really interested to see what the outcomes were. Thanks!...

Hi. I had my 1st major op at 16, where they removed all my large bowel, n gave me a bag. I had it a few months n hated it, so jus...

Well that was fun! I expect my reward and/or prize in the mail....

Jackie, the bags are the pits at first but you'll get through it. I had mine for 9 months and learned to manage it pretty well a...

Teri, at 10 months since take down, I have those same problems but it is improving. No accident last night. But often 1 - 2 nigh...

My take down surgery was January 26th. I am eating normally, but I am not gaining weight. What is your experience on weight gain...

ML - Yes, Mark has had Jpouch blockages. His begin with a stomach ache, thinks he ate something bad (not realizing it is blockage ...

I have had this hot bath and massaging the area helps...

blockage. Anyone have one after take down? I am in the worst pain right now in my stomach and where the bump still is up near my p...

Hello Melissa, Thank you for your comment and your response to the survey! As it stands, you have completed the survey correctly...

We got our insurance before I was dx with UC, and I'm grateful that was the case. Thanks, ML, for your encouragement and praye...

Hi, I took the survey, but I messed up. When it asked how often I visited jpouch.net, I answered for jpouch.net instead of both...

Hi Mark, Thanks so much for sharing your story in this blog. I hope you realize the positive impact it is having on so many peo...

The reason I went to the Cleveland Clinic is because of the surgeons there. Even though I didn't like Dr. Remzi's attitude, when ...

My daughter (19) had her takedown surgery done at the Mayo clinic just 2 months ago. Mostly she's doing well, but she's very frust...

Laminda, I would love to talk to you more about Dr. Remzi and all this jazz. Shoot me an email and we'll chat! jackiezimmerman [...

Laminda, I had the JPouch surgery performed by Dr. Remzi at the Clinic in November. I'm currently awaiting surgery #2 of 3 and whi...

Hi, Jackie, my name is Laminda. I am 31 and am from Michigan I was diagnosed with UC in 2000. In November '09, I had a colonosc...

I just think it is amazing that you were able to be covered by private insurance. I remember trying to get a policy over 8 years a...

Agreed - but to be fair, we're paying out the nose for our insurance since my husband is self-employed....

hi rachel, your ideas are fantastic! of course i should try maternity pants! i didn't even think of it.. thank you so much!! ...

My husband had no choice in whether or not to have surgery.....he was so ill and having such a horrible flare up that he could not...

Ok girl, first things first, take a big deep breath and then a few more, everything is really going to be ok. When I first go sick...

Rachel you're really lucky! There are a lot of us who don't have insurance quite that good!...

I agree – it’s a red flag to me that (1) he would let you do it one step and (2) that he’s only done this surgery a handful ...

Jackie, Thank you...Thank you...Thank you! You have no idea how this is helping me. I will definitely continue with this site ...

Dianne, This website was a god send for me. It gave me so much great info and I've "internet net" some amazing people who have hel...

I just want to tell all of you that you are wonderful!! This has been a lonely journey and as I sit here reading with tears strea...

Sara, Maybe you can help. I've been home from work because of UC for the last 2 months. I can no longer take steroids. The asa...

I would come to the mainland and have a 2 or 3 step with a surgeon who does this procedure all the time. My surgeon does 100s a y...

The first thing is that your instinct is putting up red flags and you are asking a very good question. In my situation I saw 3 G...

I was diagnosed with dysplasia and opted to have the surgery. I was having limited to no issues with my UC and was only taking As...

I interviewed three surgeons and I too wanted it done quick. NONE of them would do it in one step. They said that it was too risky...

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