Upcoming surgery

It has seemed from what I’ve heard that ileo-rectal anastomoses often don’t work very well, though I’ve never heard a good explanation for it. A well-functioning J-pouch will need 4-6 bathroom trips per day, with essentially no urgency. Any abdominal surgery, and certainly any colectomy creates the possibility of blockages in the future due to post-surgical adhesions.

Many J-pouchers have occasional bouts of pouchitis; most are easily managed with 10-14 days of an antibiotic. Some people develop chronic pouchitis and need treatment continuously - that’s my situation, but it hasn’t limited me in any way.

If you choose your surgeon carefully then your sex life is likely to be just fine.

Scott, thank you for replying. Has your diet had to change much at all? I know in the first 6-8 weeks it will for recovery time. My surgery will be done robotically, not opening up the abdomen, at least that is the plan.

My mom had the IRA surgery done over 40 years ago and just went to the full ostomy 1 1/2 years ago due to her rectum have thousands of polyps, but I don't think her surgeon ever removed the polyps from her rectum when he did her scopes.

Hello,

I inherited fap from my father, passed on to him from his dad.

Im living with my jpouch since aged 23. I am 45 now so my jpouch turns 22 years old on October 15 2024.

I average about 8 to 10 bowel movements a day. It varies depending on eating schedule.  If you eat more than what's average you will find you will need to eliminate more.

I find myself snacking during the day.

I'm doing well with my jpouch. I had a single stage operation so my jpouch eas put to use immediately.  The procedure was carried out via a bikini cut about 8 -10 inches long and laproscope 4 tiny slits in the lower abdomen

I'm facing a sub total gastrectomy as I have low grade dysplasia in the stomach so am being followed by a surgical oncologist and a interventional gastroenteroligist

I wish you the best and if you want to talk I'm here for you. Pm if you want.

Len

Thank you, Len. I inherited it from my mother, and she inherited it from her mother. I did have polyps in my stomach, but last time I was scoped they were fundus and benign. My mom has them in hers and they are showing low grade dysplasia, so she undergoes scope in September to see what they will do about those.

My surgery will be 2 stage, so initial them on the ostomy for 3-4 months, then the second surgery to reconnect. If all goes well, I'm hoping for around December.

I greatly appreciate all the advice. I don't have my gallbladder, so I already use the bathroom more frequently than typical humans

I eat an unrestricted diet. Many J-pouchers here have identified complex dietary restrictions, and some are surely due to genuine food sensitivities. Some of these, though, are likely caused by the difficulty in identifying causes in a relapsing/remitting condition. I call these food superstitions. Folks with inadequately treated pouchitis or cuffitis are prone to search for dietary causes. Food choices do affect stool consistency, and some folks seem determined to tightly manage that.

Sorry about the low grade dysplasia in your mother's stomach.

As someone facing a sub total gastrectomy and under surveillance at a cancer center I understand. I'm afraid about undergoing the sub total gastrectomy for low grade funding gland dysplasia polyps

My father died of stroke complications and beat colorectal cancer but it cost him a permanent ostomy. He wasn't getting surveillance and when he dud polyps grew  thru the rectal wall and he couldn't pass stool. He came to the Dr's around age 58 and he had colored talent cancer. He was green color. Skinny from weight loss that cancer causes of rectum/colon and presented with a hemoglobin of 5.3 or 5.6.

My father lived to be 79.

I come from a Russian family, however I was fortunate to have Been born here and not in Odessa whete my family was born.

I have 2 brothers one we share same mother the oldest but my mother was previously married before she and dad met and separated in her early 20s so the oldest has a different dad and my 100 percent biological brother did not luckily inherited the genetic mutation

I'm being followed at the fox chase cancer center for the low grade dysplasia stomach polyps and have a surgical incoligist at u of p hospital in downtown Philly whete I'm from and always lived in Philly.

Because I have a jpouch and functional issues arise with undergoing a sub total  gastectomy the gi doctor says the goal is for you to not have any more surgery

Oncologist at the hospital is gravitating toward 75 80 percent of stomach removal the lower 2/3rds basically.  In my case my stomach looks like a sheet carpeted with polyps. They're  hard to polypoid/resection bc they are next to eachother without spaces between them

I had my first colonoscopy at age 22 and surgery at 23 prophlactically bc they say without surgery life expectancy or cancer happens before the age of 40

I lost my half sister aa my dad was also previously married before he and my mother got together. She lived to about 40

.she was operated but the surgery was botched..she moved from Russia to Germany with her husband  the colorectal cancer metasized to her liver and spread to her bones

My parents are both deceased. I just lost my.mother who lived to be 83 in October 5th.  Bot having my parents and giving this monstrous disease which is a beast is very difficult

My oldest brother  nearly 60 now is cold like and distant so I only have my 51 year old for support. Also I'm a loner type and don't have friends. Some acquaintances but mostly I'm on my own in this 'soup' ...

I wish you all the best and for your mother as well. I'm here if you ever need an ear or to talk...

Len

I underwent total colectomy in 2007. UC was the issue. I have had quite a few issues with pouchitis over the years until I discovered manukau honey 5 years ago. Thankfully that is no longer a problem. However I have always had to empty my pouch frequently.
I have been able to control that somewhat with Imodium but just take 1 in the morning before leaving for work. I am afraid to take more because I have had issues with SBO (3 required hospitalization). My Imodium wears off after a few hours and I do have more frequent bathroom breaks afternoon/evening.
Unfortunately I am up 2 or more times during the night to empty my pouch so getting enough sleep can be a challenge. Eating smaller meals and cutting off food after 5 pm helps a lot.
I do wish you all the best whatever you decide.

Hi,

let’s address your concerns one at a time.

1. sex life - I would never attempt to specifically answer this for a female, but generally speaking it took me a solid 9-12 months for my pelvic floor to settle down where I was again comfortable in the bedroom. Two years later and everything seems back to normal for me.

2.bathroom breaks - I do not eat lunch and take Imodium before breakfast/dinner/bedtime.  This plus knowing what foods to eat minimizes daytime bathroom breaks. However you should expect a minimum of  6-8 BMs every 24 hour period.

3. Blockages and pouchitis. - there is no knowing at this point how your surgical outcome will be. I have not had either, but I have had cuffitis and SIBO which can present the same symptoms as pouchitis.

The most important thing to recognize is that your body will need ample time for recovery and adjustment. Plus surgical complications can arise and outcomes can vary.

please do not take this as an attempt to dissuade (persuade) you in any way. This site by its very nature contains folks who have jpouch problems/issues so that is what you will find here.

I personally find the option of an appliance not an option.  So I will always do whatever I can to keep/maintain my pouch.

Finally, the decision to undertake an IRA vs jpouch is best served by speaking with your care team and doing additional research or speaking with someone who has had an IRA.

I wish you the best outcome.

Eric

Thank Eric for responding specifically to my questions. My mom and younger sister had the IRA surgery. My mom had it when she was 35, and just underwent a total ostomy 1 1/2 years ago. Not because she had cancer, but because her rectum was full of polyps. So, that is honestly what I am most familiar with. Two of my cousins have had the jPouch surgery, one has done well (male), one has had a few complications (female). I as well want to do whatever I can to not have a permanent ostomy.

After my very harrowing experience, I never want to have surgery down there ever again, for any reason.

thus the question for you and your care team is; what is the likelihood of polyps (then eventual dysplasia) in your leftover rectum?

If the answer is highly likely, given your age, I know what I would opt for. But then again I have hindsight into my outcome (even with my daily challenges).

what I do know is that even though I question my decision to undergo this surgical journey, I do not have to worry about CRC ever again.

And avoiding repeat surgeries for the same issue, should be everyone’s goal!

I have had a j pouch since 1994.  First I would like to say that everyone is different. When I first got it I was very sick because my colon perforated from UC. Having j pouch surgery when you are healthier makes it much easier I am sure. As far as sex is concerned I would suggest in the morning...or after you know the waste product will be out of your j pouch.  It takes about 3 hours or so from the time you eat for it to get into your j pouch at least for me it does.  So for example if you eat at 5 then later in the evening would be a good time for you.  You have to remember that when you have a j pouch this is all done with gravity.  You do not have muscles like in your colon pushing it through.  Before you are going to have sex make sure you empty your j pouch so you do not have a accident. I do not eat peanuts or nuts or a lot of raw vegetables though or popcorn.  I am not sure if you will have a temporary ileostomy or not.  For example they made the j pouch and I had a temporary ileostomy while waiting for it to heal and then like 9 months later they connect my small intestine to the j pouch.  Some people have the surgery all in one step and the waste product flows through it right away. I have some scar tissues where my stoma was so that is one reason I do not eat those items I mentioned.  I do not want to take a change of a obstruction.  All in all yes it is a major change but after what you have gone through it will be a relief but you will get through it!  Good luck to you!

Thanks Pilot Debbie. It will be a two stage surgery. I am more worried about sexual function/pain after surgery. The rectum is not only for holding waste, but also helps support the vaginal wall, so that is a concern. I know it may be selfish, but sexual activity is important to me, as we just got my husband's health back in good shape,  and we enjoy a pretty active sex life, sorry don't mean for TMI.

I also do not want an obstruction. I know my mom had one after her IRA procedure 40 years ago. I know technic with surgery has gotten much better over the years, so I'm hoping to have the least amout of complications.

I greatly appreciate everybody's advice. Still haven't made a decision which surgery to go for, but my Dr. will be calling me sometime this week, so I have time to decide.

After I had j pouch surgery I continued to have UC in my rectum.  About a year later my rectum was removed and they had to re-staple my j pouch down lower.  And yes you are right it does support the vaginal wall but I have gotten along fine without it.  I do have some seepage once in awhile but that is usually if I do not empty my pouch enough. I doubt you will have sex for awhile after the surgery.  If you are healthy I would say 6 months at least but then I am not a doctor.

You had a mucosectomy @Pilot Debby since you say your jpouch was stapled lower..they took your cuff.

I.may need that bc as someone with familial polyposis I have polyps in my rectal cuff..just had.an endoscopic mucosal resection in April. Due for surveillance October 10 again after last set of scopes  were done April 20..

Len