Advice Needed on J Pouch Experience for My Son

Hello all,

i was hoping to get some opinions and advice from those of you who have or have had a j pouch.  My 21 year old son will have the option of having one after he heals up probably in the next 6-9 months.  I have read a lot of conflicting information regarding the j pouch.  Has anyone had success with it? Is it worth trying? What type of complications have others had etc.....thank you in advance for any and all advice.

Knicole6, As with all surgeries, everyone reacts differently.  I know good and bad stories about the j pouch but not having experienced that particular surgical procedure and outcome, I will not voice a personal opinion on it.  I just would like to suggest that you also research the BCIR procedure, as your son is young and depending on his particular case, he may find it a viable option.  If his ostomy was not due to Crohn's disease (or the Crohn's has not been active for over a year) he could be a candidate for this particular procedure, which creates an internal pouch for which a catheter is used to empty the pouch, eliminating the need for the pouch on the stomach ostomy set up.  After my illeostomy no one even mentioned the BCIR procedure, because only a limited number of surgeons are qualified to perform this surgery.   Palms of Pasadena in Florida will be happy to send you a DVD with information of this procedure.  Susan Kay is the contact that I had.  Regardless of which procedure that you go with, or if your son stays with his ostomy, A positive attitude is essential to healing.  Being young is a definite advantage physically, but it does seem as if the young  have their own set of uphill battles, especially personal self esteem which seems to strike hardest at the young.  There are MANY members here who have had ostomies for 30, 40, and 50 years, so living a full life regardless of which option is chosen is certainly possible, and mostly up to personal attitude.  Good Luck with your research, and believe me, research is VITAL, as is self advocacy.  If you are in doubt of any kind, stop and evaluate those feelings before making life altering decisions.

Peace

Hello

i had my j pouch 5 months ago following severe ulcerative colitis. Can highly recommend it but it does depend what the original illness was?

ive had no real complaints since having it done - except for getting a stomach bug & due to having no colon or rectum you do get very sick very quickly with dehydration but that would be the same issue with an ostomy anyway.

i feel much healthier & happier since my reversal

hope that helps & good luck for the future x

Hi Knicole6,

I have had a J-pouch for almost one year. I have been told by my surgeon that the one-year mark is roughly the time that the J-pouch has reached the point that it will likely stay in. That is, I shouldn't expect to see any real changes in regard to function from now on.

I'll preface this by saying that I am 19 years old, and so I'm not too far off your son's age. I do not know what sort of "build" your son is in regard to his height and weight, but I was about 60 kg when I had my surgery and am around six feet tall. I was what my surgeon described to me as the textbook surgery, so please take that into consideration when you read this. I am by no means representative of everyone's J-pouch experience, and my surgeon reminds me every time I see him of the wonders of youth and being lean.

Regarding the actual surgery itself, it went about as well as could be expected. Everything functions perfectly fine for me and has done for pretty much the entire time I have had my J-pouch. I use the toilet roughly four or five times per day; however, that can vary depending on what I eat, how much, and when. My J-pouch is relatively easy to control through diet, but being a university student, my diet isn't always fantastic. I rarely eat unhealthily, but I sometimes eat sporadically. Eating smaller meals throughout the day makes it far more manageable, I find. Also, when I don't eat for a prolonged period, my stomach gurgles sound like earthquakes. Not an issue, but it can certainly draw unwanted attention in the silent area of the library.

Complications-wise, my only major complications were immediately post-op. I won't lie; I deeply regretted it during the first five days. I was in the hospital with countless tubes hanging off me, vomiting bile due to my gut being asleep from the anesthetic and not being able to pass any of the gas that was pumped into my gut during surgery, once again due to my digestive system being out of action. It was a miserable few days, but once my gut started working, it worked brilliantly. I started off going to the toilet about eight times per day, which my surgeon was quite excited about, as he forewarned me that people often start off going 10-15+ times per day. Once again, age is apparently an important factor in the body's ability to respond to surgery.

I had two longer-term complications, one of which you've likely read about. I had very slight nighttime incontinence for a few months after my surgery, and by incontinence, I mean passing wind in my sleep (I still won't risk passing wind while awake unless I'm on a toilet) and experiencing slight incontinence as a result. This is easily countered by either using a pad or stuffing a couple of tissues down the back of your pants. Either one works. The second complication I had was my wounds. The ileostomy wound healed quite quickly, but the longer wound along my lower abdomen had to be opened up due to some blood clotting blocking the wound from closing. Basically, I had a long open wound in my abdomen that had to heal from the inside out. I had to rely on someone else to pack it for me for quite a while because I couldn't see it well enough to clean it due to it starting off pretty deep, and due to my abdominal muscles being too sore. It took many, many months to heal due to multiple infections. It absolutely did not stop me from doing anything, though, and was not painful due to it being scar tissue that was reopened from my colectomy surgery. I simply saw my GP and nurse once or twice per week so that they could check for any infections.

All of these issues have cleared up for me now, though. I am currently iron-deficient, which I suspect my J-pouch had a hand in, but other than that, I am free of any issues. It hasn't stopped me from getting stuck into my university studies and participating in all of my classes. I was concerned that three-hour classes would be an issue, but I have never experienced any problems. I always take a Gastro-stop/Imodium/whatever anti-diarrhea medication is common in the US before I go to bed and before I have a long class at university.

That is a general breakdown of my experience with my J-pouch thus far. Once again, please keep in mind that I am absolutely not representative of J-pouch surgery. Research it well, but don't fall into the trap of only reading the bad stories because they are far more common than success stories. My mum did this in the lead-up to my surgery and ended up being much more nervous than I was for the surgery. I recommend, as does my surgeon, asking your son's surgeon, "If you were in this position, would you have the surgery yourself?" My surgeon says that that's the best question people ask him because an honest surgeon will give you their opinion, and this will often open avenues to other discussions about the surgery and its outcomes that maybe wouldn't have come up before.

If you have any questions about my experiences, please feel free to message me or reply to this. I'm always happy to discuss these things. I am just about to enter my exam block, so I apologize if my responses are delayed. If I don't hear from you, I wish you and your son the best of luck.

Hamish.