j-pouch vs ileostomy

Hello SaraJane, and welcome to the forums!

First, I'm not sure what "pouchitis" you are referring to, since you do not have a jpouch yet? And also curious as to the reasons for the proctectomy recommendation...

But, just off the top of my head, and only going by my experiences (I'm 56, have had my jpouch for 20 years, and am now considering having it removed due to fistulas and other complications), I'd recommend sticking with ileostomy.

Of course, you will get different recommendations, depending on the individuals' experiences, but personally, if I were 83, was already having abscesses and some kind of "itis" in my intestines, and knew what I know now, I would not go through the iffiness of jpouch surgery. And not to forget - the surgeries/recoveries can be very brutal.

I wish you the best.

I'd go for the J-pouch. It will take some adjustment but it does for everyone. I figure the older we are, the more patient we are! I'm 72 and had my first surgery when I was 61 with my takedown at age 62. Best wishes!

Hi SaraJane,
I think that I would start out by asking myself a few questions...what do I want out of life at this stage? How much time do I want to put into the healing process? How healthy am I now? How long am I willing to wait to find good health again? Do I have plans for the near or distant future?
Do I travel a lot? Do I heal well? Is my skin very sensitive to adhesives? Do I scar well?
For me, if I just want to get my health back as fast as possible, get my life back on track and move on...then I would take the end ileo...it is usually (and I do say, Usually) the quickest fix...if you heal quickly and have no major skin sensitivities to adhesives (the bag has to be stuck on with a flange attachement that is held on with adhesives or a belt or both)...if you are willing to give yourself a few months of healing time to get past the j pouch surgery and the adaptation period of having new plumbing and its inherent complications (usually a very irritated bottomside called buttburn(usually only in the begining), some digestive issues and limitations at first and the risk of needing stool thickeners, bowel slowers and the slight possibility of pouchitis) then I would opt for the j pouch...
It is all about you, your lifestyle, your body and what you want to be doing for the next 6 months...
That's all of got other than hopes for good luck and good health for your decision
Sharon

It was my error. What I had/have is proctitis, which is colitis in the remaining small section of colon and rectum. The doctors are not sure if the abscess was a result of the previous surgery or if the colitis caused the formation of a hole in the remaining piece of colon. But 6 weeks of IV infusion of antibiotics had closed the hole. The recommendation is that I remove the rectum to prevent future occurances, since the colitis may cause a similar problem in the future. I had been told by my surgeron at the time of my surgery that J-pouches were not done for people over 65, and only recently learned otherwise. I have moved back my scheduled surgery date a couple of weeks to give myself time to explore options and to hear from others. Thanks for your help on this.

Thanks, skn69. I had a colectomy in dec 2011, so my question now is do I reconnect. I have to have some type of surgery--a proctectomy or a reconnect. I need to decide which. I am wavering. One moment I thinking just get the proctectomy and be done. The next moment I thinking, well, I having surgery, I might as well go for the whole package. If I don't will I regret it later.

Then you have just answered your own question...if you do not try, you will regret it...so...it sounds to me like you need to at least try...
You say that you are in your early 80's...all of my inlaws are too...(hubby is the baby of a dzn kids and he is 66) so when I think of your age I think about them...how vital and strong and full of life they are...And I say, yup, if you feel like you would like to go for it then why not? My 82yr old sister in law just had dental implants done so that she doesn't have to wear dentures...She said that it was worth the pain...for the freedom.
Good luck
Sharon

quote:

My thinking is that if I'm having surgery, I might as well have a j-pouch instead.

Its not that simple. It is a big deal to remove a J pouch if it is a failure. It is statistically more likely to fail the older you are. That is not to say it may not be a success but less likely the older you are. I assume you must have an ileostomy now? If so and you are doing Ok with it I would stick with the ileo. If it were me at 83 I think the prime focus should be on minimizing surgeries, getting to a good functioning life as soon as possible IMO the ileo probably offers your best chance.

It is all a personal decision for sure. But if you are doing well with your ostomy I wouldn't go for the j-pouch if I were you. It is a very hard surgery and for alot of people including myself it has been a tough hard year. I am just now finally starting to feel well and be without meds my 1 yr anniversary date from takedown is April 18th. I am 53. Keep us posted on your decision. And we are here to support you what ever decision you make.

Yes, thanks for your suggestions. My problem is that I need surgery to take care of the proctitis. My doctor has indicated it could take from 3-6 hours and recovery will be a challenge. I appreciate your comments. I agree that I may not want to spend my remaining years dealing with a new procedure. The thing about a bag is that I can know that I can have a couple of hours window to do things. Is a j-pouch fairly reliable. My doctor also said that there would be leakage at night.

SaraJane,
Just a comment, no recommendation at all. I spoke to an 83 year old several years ago that had the Kock Pouch done and after a couple of years had only seen the dr one time, for a check up. She was doing very well and would choose to do it again since the results were so good. I know that the KP is a very complicated surgery and she did great. I wish you luck in feeling peaceful about your decision.

ditto what chiromancer said.

each and every surgery, no matter what it is .. is trauma to your entire body. I think if I were in your shoes, I would want to reduce that trauma as much as possible.

Also has your doctor tried medically managing the proctitis? Enemas, suppositories, foams, etc.. Sometimes there is success with that.

Yes we have tried all the above none worked. Since the proctitis causes what I see many people referring to as butt burn it's very uncomfortable. Also the concern is that the hole may open up again. I'm glad to hear that someone who was my age had successful surgery. If it were not for the proctitis and the requirement for a second surgery I would probably just live with the ileostomy. It has it's problems, but at least I know how to deal with them And so they are manageable. Also I have concerns because I'm in HM O and limited to a choice of two surgeons. I have asked if either of them have performed j-pouch surgery on someone near my age but have not heard back. Thanks for the responses I really appreciate it.

I guess, having had a j-pouch and now a perm ileo , I would ask you what you think you gain by getting the j-pouch at this point? Yes, you need a surgery, but adding the j-pouch would make that surgery longer and more difficult to recover from. Do you have support that can be with you recovering from takedown, when you may have to make multiple bathroom trips per hour? How would you feel if you had chronic pouchitis and needed nonstop antibiotics (as I did - only to get to 12 bathroom trips a day, 3-4 overnight). How do you feel about the dr saying you'll have night time leakage? Do you want to spend your time cleaning up from, or managing that?

Of course, you could be one of the folks who has no problems, and then think about how that would improve your current quality of life. What does it give you that you can't already do, if anything?

If you were my mom, I would tell you to leave well enough alone. I just don't see what the j-pouch gives you at this point, given that you are coping well with the ileo. I just wouldn't want to risk your current quality of life for a whole bunch of what ifs.

But that's me and only you can make this choice.
Just be sure you are realistic about what the future might be like - good or bad - if you make this choice. And ask the drs what the options are if the j-pouch doesn't work well for you. Are you ok with more surgery if things don't go as planned? Either to fix the j-pouch or disconnect it or remove it?

Totally agree with Jill.

Something else to consider: your surgeon needs to have tons of experience with j-pouches if you expect to have positive results. If neither of the surgeons available to you don't have that experience (I'd say 30+ j-pouch creations), another reason to leave well enough alone.

thanks for the responses. I have again emailed my doctor to ask specifially how many j-pouch surgeries on an average she preforms each year, and if she has reconnected patients in their 80s, and their outcomes. She is not helpful in being more specfic on most issues, responding to my last note by saying "it depends on how well one tolerates going to the bathroom numerous times per day." It makes me unesy.

Yes, it is true that it does depend largely on your own individual tolerances. The same holds true for tolerance of an ileostomy. But, the fact is that you have lived with the ostomy, so that is a known factor. It seems that you are also living with bathroom issues too, since you need the proctectomy now.

The other factor is your overall health and fitness. Are you a "young" 80-something, very active, fit, and motivated, or more of an "old" 80-something, with a history of difficult surgical recoveries, heart disease, diabetes, etc.? Or are you sort of in-between? Lots to consider, because some 80 year olds are better equipped to deal with probable early difficulties than some 50 year olds. This is why there is no clear cut answer. Only you and your family know what you are up to handling and what you are not.

I am going to pose another wrinkle because a total proctectomy is no easy surgery either, as many here have said the perineal wound was much worse to deal with than the j-pouch. But, I would hope that j-pouch removal is more difficult than proctectomy because of the scar tissue involved. Still, you cannot assume it will be a simple, easy procedure. Adding to the difficulty is the fact you had an intra-abdominal abscess, which would definitely have increased the amount of adhesions (internal scar tissue) that you have. This actually might complicate a j-pouch procedure too.

If you are motivated to have the j-pouch, I would urge you to seek a second surgical opinion (outside of your current surgeon's group). This might help you get some perspective. I personally worry about surgeons who do not fully satisfy their patient's inquiries. They may be fabulous surgeons, but if they cannot communicate, it can be a real problem down the road if there are complications.

Good luck,

Jan

My in-law's neighbor had j pouch surgery a few years ago the same time when I had my surgery. She was 80 yrs old and did (and is still doing) terrific.
That's a tough descison and a successful outcome will have a lot do with how healthy you are going in. It's a tough recovery. Do you feel you are up to such a complex surgery?