Hi, I am 48 years old and just diagnosed with FAP. It does not run in my family so getting up to speed has been very overwhelming and scary. I've seen multiple surgeons who are recommending removing the colon and rectum and will have to do a hand-sewn jpouch. Everything I have read online sounds awful about the surgeries and recovery and quality of life. Having to have surgery and and temporary ostomy AND then go back in for a 2nd surgery 3 months later is more than I can comprehend. Not to mention quality of life afterwards.

I have 2 teenage girls that will have to be tested, but for now I have to address the surgery upon me. Can anyone shed light on what the post-op experience in the hospital is and living at home having to care for a temporary ostomy bag, recovery after take-down surgery (how long it takes to function properly) AND quality of life in the future. I'm hearing it will take up to a year to feel normal and have my body regulate?

The surgeons don't tell you about how it feels, what to expect and what it's like because they are only doing the procedure. I need to understand what the road ahead looks like...

Thank you for sharing your experiences...

 

 

Original Post

I experienced the same situation as you, but at age 35.  There was no past family history of FAP and my two daughters later tested negative for FAP.  The surgery was difficult, but tolerable and somehow I was able to deal with the bag for a short period of time but was so glad when it was gone.  My dad and two sisters were with me for both of those surgeries, but I got very little support from my wife, who I later found out was having an affair and who started a very ugly divorce.  After the second surgery I was completely on my own, but got through it.  I had no choice but to become self-sufficient as soon after surgery as possible.  Just over 4  weeks after returning home, I was able to return to my upper management job.  Although the J pouch had its issues, it was manageable and I was alive.  Without that surgery, I would have lasted 5 years or less.

I was one of the first at Mayo Clinic to have J pouch surgery in 1981, so the techniques were not as developed as they are now.  With the J pouch, I was able to travel internationally, ski the Rockies, participate in equestrian competitions and do whatever other activities I enjoy. The surgeon left a small segment of rectal tissue when he did the surgery and it produced a malignant polyp about 25 years later that was successfully removed.  Five years later, recurrent high grade dysplasia returned and pouch removal was recommended.  I very strongly did not want an ileostomy with its associated issues and was fortunate to locate a surgeon who gave me a BCIR (similar to the K pouch).  This procedure worked out well and I now have a very good quality of life.

When facing a major surgery, you need to realize that it is life saving and that you will have a good quality of life following your recovery.  I wish you the very best!

Bill

Thank you for sharing your story with me. I know it goes back a while, but did you find life with a Jpouch held you back a lot from tour life? Everything I am reading says to expect many bathroom trips during the day,  expect dietary restrictions or you could have blockages, and burning, what to eat and HOW...etc.,  so much to process. 

Any thoughts you can share would be greatly appreciated. Although now, you are probably regulated with minimal issues. But if you can remember back to the early days...

Thank you!

sarah

I did not have FAP, but my ulcerative colitis came on very quickly in April 2015 and by November, I had my first of 3 surgeries, two different ostomies (an end and a loop) over 9 months with the final takedown.  I have done pretty well and find I am able to do most things I did before my j-pouch.  I think my biggest complaint is that I sometimes have leakage, but not a lot and usually because I waited longer than I should have to make a bathroom trip.  There are other minor inconveniences as well.

I have traveled, hiked, and biked with the bag and with the j-pouch.  I would say that I felt pretty good by about the 6 month mark and even better by about a year out.

Be prepared for butt burn after takedown.  I ordered a bidet, a sitz bath and used Calmoseptine for a while.  Other ointments have also been recommended including Ilex paste or baby butt creams.  Keep you fluids up to prevent dehydration and follow initial diet restrictions after your surgeries.  Once you are able to start eating more foods, introduce them slowly.  At this point, two years post takedown, I eat pretty much what I want.  I don't drink any carbonated beverages and don't really miss them.  I usually drink water and coconut water because of the low sugar content and the potassium.  You pretty much learn what you can and cannot tolerate as you go along.

As far as how often you go in a day can vary.  I don't really count it but I believe it to be about 5-6 times in a 24 hour period.  I rarely get up during the night except to pee.  It doesn't interfere with my life.  When on vacations, I bring extra medication, although I recently went for a 4 hour bike ride and forgot to.  There was a bathroom halfway, so it worked out.

I understand that statistically most people do reasonably well with a j-pouch.  It does take a while to adjust to, and you will have a new normal to live with.  Hope all goes well for you.  This is a very good and informative site.  Although, I have no real problems, I have found lots of answers to questions I've had along the way.

Sara, let me begin by saying that the majority of people with J pouches do better in terms of pouch function than I did.  I averaged around 12 bathroom stops a day, had butt burn , leakage and did have to watch my diet a bit.  I learned over time how to get the best with what I had, knowing that the last thing I wanted was to get stuck with the bag (pun intended).  I remember skiing all day at Vail, Colorado and deep sea fishing in Cabo San Louis, Mexico without a bathroom break. Although I had “accidents” and embarrassing experiences from time to time, I accepted that as the price I paid for avoiding a less desirable (in my opinion) procedure.  During the 30 years I had the J pouch, I never had a blockage or pouchitis.  I installed a bidet in my home which helped significantly with the anal irritation.  There are a number of bidet “seats” available that are far less costly and easy to install on your existing toilet. Various skin barrier creams also helped.  Although I had my difficult moments, I did not allow that to hold me back from enjoying life.

If my diagnosis of FAP occurred today, I would still go with the J pouch.  Surgical techniques for the J pouch (as well as the K pouch and BCIR) have improved significantly since I first had mine.  The most attractive feature of the J pouch is that it preserves the anal sphincter and allows you to “go” in the normal way.  If you opt for one of the alternatives, the anus is removed and you will never know if the J pouch would have worked out well for you.  One thing to seriously keep in mind is that these message boards are most frequently visited by people who are having problems with their pouch and are looking for solutions.  Most folks who have few or no problems with their various procedures rarely visit these boards and just go about enjoying their life.  Please free to send me a PM, if you wish.

Bill

Hi,

I'm sorry you are faced with this life changing medical condition. You must be very scared, especially having children and so many other concerns. I had a complete colectomy and a J-Pouch installed when I was 20 year old (27 years ago). Maybe surgery is easier to handle when we're young and have less people relying on us to be well.

I know this is not the case for many people on this site, but my quality of life completely improved after surgery.  The first surgery is major, and recovery was painful, but pain medication works and recovery can go as expected without complications. For me living with UC was more painful and debilitating than surgery, and life with a J-Pouch is not at all like the frequency, gas, etc related to an illness and disease. It's just the way the J-pouch works and not a result of something being wrong. There are certainly adjustments and precautions you will have to make to minimize things like skin irritation, dehydration, watery stool, for example. (The second procedure is a lot easier than the first.)

Everyone is different, I know, but my surgery was completely successful at the time. I hit some bumps in the road over the past 27 years, but nothing nearly as bad as the ongoing complications some of the members of this site have had to endure.   

Hope this alleviates some of your fear. 

Shannon

 

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