Hi Group, New here. I want to pose a question to the group and get an opinion from those who have had a J-Pouch. I am s/p Total Colectomy for UC since the surgery in April 2010. I started with a diagnosis of UC in 2001 and it slowly progressed from Mesalamine to various drugs when I started steroids in 2008 and then biologics in 2010, which ultimately failed. I was deathly sick and went to surgery to save my life. It worked to improve my health and I am now 14 yrs since the Total Colectomy. I am essentially healthy but have the Ileostomy and bag which I grudgingly accept as the trade off for now being alive and active and fit. I golf, lift weights, run, and participate in many outdoor activities. Now that I am 65 yrs old and retired, finally, I can consider the idea of doing a J-Pouch surgery (or surgeries since most surgeons do two to create the J-pouch and then later reconnect the system). I've not had problems with the ileostomy, until recently when I've had a peristomal skin breakdown and the doctors think it might be pyoderma gangrenosum. They might have to move the ileostomy to the other side of my abdomen. It got me thinking that it might just be time to try the J-pouch and be done with the stoma completely. I saw a very good colorectal surgeon in my area and had a consult. She reviewed my history and gave me her opinion. She was not at all encouraging and recommended against it. She said I am on the high end of the age where she started seeing more complications such as bowel leakage, suture line leakage, night time leakage, urgency to go, etc. I was a bit deflated since I was thinking I am in great shape overall and eat whatever I want. Any thoughts? Opinions?
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I had my J-pouch surgery after being turned away by several colorectal surgeons, so I have some experience with that path. Do you know if the surgeon you consulted does many J-pouches?
We’re about the same age and I have noticed that I heal more slowly than I used to. Everyone is different, so it might be useful to consider whether you heal reasonably quickly.
Do you know what was left behind after your 2010 surgery? That could affect your surgical options. Was a J-pouch considered at that time?
Thank you for your reply. I do know the details of my surgery. I have 10-12 cm of rectal stump left behind for the very reason that a J-Pouch might be considered. So technically it is a possibility. Also, the surgeon I consulted does 2-3 per year. She said that most surgeons aren't seeing as many because the biologics are working so well that the need for Total Colectomy surgery is much lower than it used to be. At least, that's what she told me. Further, I have a son in law who is now 37 yo, he had UC and total colectomy when he was 25 yo. He went on to have J-pouch sx and did very well. He encourages me to check with other doctors and see if I get a different viewpoint.
Please.
Also do some reading in here on good and bad points of a pouch.
I had a team of surgeons. One who did my pouch. And was advised. Which she didn't need. By three other colorectal surgeons who also performed pouch surgeries.
I was told from the get go seeing where my uc was located in my colon the pouch may not work. And it didn't. But I tried. I'm older than you but had the surgery at 58.
By 60 I had an end ileo because although my pouch was healthy we could never figure out why it wasn't working correctly. And for two plus years it was actually worse than the uc I had before.
Anyway.
Yes. Get more opinions.
If they say no. Ask why.
You did get an explanation from the first. You should get explanations if more no's are answers to getting a pouch.
My answer may not help much and you can disregard it. No biggie.
I wish I would have went straight to the end ileo because I'm good with it.
I have everything in place to get another pouch. But I ain't even considering it. My end is too easy.
Richard.
Richard, Thank u for your insights and sharing your experience with trying a j-pouch. I am going to speak to more surgeons who may have more experience than this surgeon with j-pouch sxs. My son in law spoke with 3 before he found one who he had confidence in. And, he is doing great. Thx again.
Only speaking for myself but I'm totally happy with my pouch. I'm in my late 40's but I lift weights every day, jog, coach a high school wrestling team.
I have no issues at all.
I personally think there are more successful J pouch stories than unsuccessful ones.
Keep trying and good luck.
Richard.
I hesitate to give opinion. But I guess I will. I have had nothing but problems. I’d give anything to go back to a bag. Cuffitis and pouchitis. I’m doing pelvic floor therapy now. New Colorectal surgeon doesn’t think it will help. My main issue is my anal canal. I never thought that little area could give out so much pain. So now I am going to try Botox. I just want my life back. I never would want to tell you not to do it. But there are so many other problems that can occur also. My surgeon was shocked my previous surgeon even did it on me when I was 44 yrs old. They don’t recommend it. Our bodies slow down etc as we age. I’d give anything to have my life back and would love the bag. Sadly my jpouch is top notch it’s just the anal/rectal canal that is killing me. Please take my message and truly look into everything. Sometimes change isn’t better. I had no choice I had pre- cancer thru my whole colon. Also, if only we could find a doctor who has a jpouch. Boy would they understand. I wish you the best. Thank you for letting me share my nightmare.
If I were a candidate for a J-pouch, I personally would try the J-pouch that way I can exhaust all options and say I tried everything I could. I say follow your heart and always trust it. Best of luck!
Thx for your thoughts!!
@JPouchWannabe posted:Thx for your thoughts!!
Your welcome/ Let us know us know how everything goes
Hi,
I had a jpouch for 20 years. I had to take cipro everyday for chronic pouchitis. A few months ago I started getting severe rectal and anal inflammation that led to abscesses and fistulas. I had my jpouch disconnected last month and now have a loop Ileostomy while my perianal area heals. My surgeon might reconnect my jpouch again at some point. Not sure if I want to risk going back to it again. It’s not fun wearing a bag but I’m pain free and feeling much healthier.
I had my J-Pouch surgery at 46, over 20 years ago. The first year was quite the challenge. I just wanted my life back. After a year, I was good. There have been many ups and downs. I had chronic pouchitis for 18 years, taking antibiotics for that time. Once I retired and my through the roof stress level went away, the pouchitis went away too. Overall, the pouch, for me, needs care and attention. Sometimes more than others. I am glad I got the pouch, though. I hated the bag but had the luxury to hate it because I knew it would probably go away. I just know that if I hadn’t tried the pouch, I would question the decision forever. I would do it over again if I had to.
Thank you for your thoughts! My son in law has had the procedure and is doing great. He encourages me to consider it, too. I might go for a consult to discuss the option sometime soon.
I have FAP so I may have a different experience than you. I would explore a j-pouch, for me it gave me freedom. I've had some issues but they are minimal compared to dealing with a bag.
I'd explore Mayo Clinic, they did my surgeries and a friend had an IPA made after multiple medical mistakes resulted in her colon being removed. Mayo has endless data on success, bowel movements, common issues etc. They would have data related to age and how that affects the surgery success.
You sound like you're healthy and that helps a lot with surgery recovery and success.
Also look into Cleveland Clinic, they are similar to Mayo and have a long history of j-pouch surgeries.
Good luck!
Thank you for that lead or leads. I’ll look at Mayo and the Cleveland Clinic resources. May I ask what “FAP” refers to? I’m not familiar with that term or acronym.
Familial Adenomatous Polyposis, is a rare mutation of the APC gene (tumor suppressor gene).
FAP is also a slang term so search results are always interesting.
Ah. Thank you!
@JPouchWannabe posted:Thank you for that lead or leads. I’ll look at Mayo and the Cleveland Clinic resources. May I ask what “FAP” refers to? I’m not familiar with that term or acronym.