perm ileostomy or j-pouch?

Plan to have my surgery early Spring after weather breaks. I have UC and meds not working. I'm ready to have surgery.
Saw the first surgeon this week and will see a second one next week.

I am trying to decide whether to have the permanent ileostomy or a j-pouch, and am researching both.

My concern right now is about the j-pouch. First surgeon says my sphincter muscles are good (I'm 63) but I wonder if these muscles tend to weaken as we get "old" like age 80?

I also wonder if there is anyone who is over eighty who had j-pouch in earlier yrs, and if so how are they coping. In other words, any comments about coping with j-pouch vs coping with permanent ileostomy at older age. I tend to think the ileostomy my be easier, but not sure if I am thinking clear.

Any comments about whether it be easier to manage ileostomy vs j-pouch at age 80+yo?
thanks

I will.
But what is it like for older person with a perm. ileostomy?

thanks

Great SueBear! It makes sense that j=pouchers use those muscles more.
I see the second surgeon tomorrow.
I think I need to talk with an ostomy nurse also.

That's what I'm thinking about. Alzheimer's is in my family and I'm thinking of these things. I am older and do not have to think about sex or dating or playing sports with a bag hanging around. What I think about is: If I have a bag, will I be able to work in my garden; will I be able to meet my girl friends for coffee once/month without smelling, etc. Also, a "neighbor" who is about fifty had a j=pouch ten yrs ago commented the other day: "I kinda miss that ole bag". Wow. He said with j=pouch he has to stay up til midnight until the pouch empties. That sounds like UC! With a bag, however, I will not have to stay up half night going to john; I just empty the bag prior to sleep! The bag will be on my schedule until a pouch. Am I thinking clear?

Yesterday, I was all for j=pouch; today I am all for bag. I've got a lot of research to do while I decide.

Thanks to all for any input.

I was just talking with my husband about this. Again, I am leaning towards a permanent ostomy because there will only be ONE surgery! That's a big plus at my age.

But one thing I have to talk with the medical people about: when I used an estrogen patch, my skin became irritable and little skin tags/moles broke out. I would hate to have a perm ostomy only to find out my skin couldn't tolerate it. That would be terrible

tkctwbd said...
But one thing I have to talk with the medical people about: when I used an estrogen patch, my skin became irritable and little skin tags/moles broke out. I would hate to have a perm ostomy only to find out my skin couldn't tolerate it. That would be terrible

I would check with your surgeon and see if you could talk to the ostomy nurse.  She might be able to give you samples or help you order samples to try on your skin prior.  You wouldn't need the whole appliance.  You could cut a small portion of the adhesive patch off, stick it to a hidden spot and see how your skin handles it.

I understand your concern about each route.  Here is a list of pros and cons I came up with for both (I chose the permanent ileostomy but it was what I felt would work best for me).

J-Pouch

 

Pros

• No need to carry "extra" supplies around.
• Using the restroom the way you have for all your life (no change to normal routine).
• No concern with clothing issues (the fit around the stoma area).
• No exterior appliance you are worried about bumping or knocking loose.

Cons

• Possibility of complications and j-pouch failure. (The rate is small, but is a possibility) meaning maybe more surgeries to reverse the j-pouch and go back to an ileostomy.
• Feeling similar to pre UC state because of the "extra" visits to restroom per day.
• Chance of getting pouchitis/cuffitis (again small, around 30%) but would require medical intervention through antibiotics.  (I am not good at seeking timely medical treatment)
• Possible problems with developing a rash through over use of my behind.

Ileostomy

Pros

• No urgency issues (that was a big one for me) you empty at your convenience.
• Very little possibilities of need for medical attention, most issues can be handled by the ostomate.
• No incontinence issues, everything is mechanical not biological. (This was another biggy for me, my body had failed me so many times I was ready to have a more mechanical control over bowel movements)

Cons

• Possibility of leaks or blowouts which may happen in public requiring a need to change appliance in a public setting. (This wasn't much of an issue for me since I had already dealt with a lot worse when I had UC)
• Need to carry extra supplies when out and about.  (My carry bag is about 4X5X2 so it isn't that big of a burden)
• Change in body appearance.

These are just a few of the things I came up with that helped me make my decision.  Each person has their own needs and things they can handle so it is a good thing to research to gain all the info you can on both.  I was so close to going with the j-pouch but with what I had been through with UC I really never wanted to "feel" the need to go again.  Both routes beat UC and both require adjustment but those of us with UC had to make some pretty big adjustments with the UC anyway.  Hope some of this may help and good luck with your decision.

John 

Suebear,

I understand your wanting to promote your successes with the j-pouch and I am glad you have had a virtually event free j-pouch.  I was in no way trying to down grade the j-pouch surgery or hinting at what I felt tkctwbd should do (that is a decision only she can make).  Each person has their own expectations, requirements and issues that need to be factored in when making their decision and it is a big, life changing decision.  In my pros/cons I was stating areas that I had concerns which I used information I found to decide if the "risk" was worth the "reward".

I am including a very small list of internet literature that I used to get my information below (I read through tons more but these seem to highlight my areas of concern):

• Article from William J. Sandborn, M.D. IBD Clinic Mayo Clinic, Rochester, MN
• Article from Mt. Sinia Hospital on Pelvic Pouch - Pouchitis
• Q and A on j-pouch.org, 2nd question down deals with Pouchitis
• Chronic Pouchitis After Ileal Pouch–Anal Anastomosis for Ulcerative Colitis: Effect on Quality of Life (article on Science Direct)

What I took away from these four articles was that "reoccuring" pouchitis is very common (about 63%), the cause of pouchitis (just like UC and Crohns Disease) is unknown, and the symptoms of pouchitis are similar to the symptoms of UC.  Having a possibility of going through anything similar to UC was NOT an option for me.  Another observation I made was that Pouchitis occurence and symptoms mimics that of diversion colitis (1 in 3 get it).  I made the assumption that both, since neither have a "known" cause, may be UC acting up in what is left of the rectum.  This assumption brought me to another assumption, that I might be a higher risk candidate for pouchitis since I had very active diversion colitis in my rectal stump prior to having everything removed.  Again these are just the assumptions that I used but due to a lack of solid facts on the causes and relations of UC, pouchitis and diversion colitis, I was left having to draw my own conclusions.

Most of your correction are your experiences with the j-pouch (which is great) but may not be the statistical norm.  The three corrections I feel I need to address are below:

"POUCHITIS IS MOST OFTEN A ONE-TIME ONLY OCCURANCE, NOT CHRONIC."

The sources that I quoted above unfortunately do not support this claim.  Most medical sources agree that only about 32% of all j-pouchers will develop pouchitis in their lifetime or approximately 1 in 3.  But, of those, only one in three or 37%, will have just a single episode (information in the first article).  That would mean 63% or basically 2/3 will have recurrent flair-ups (47%) or chronic pouchitis (16%).  That tells me that if you are in the 1/3 that get it then your chances of having symptoms again are very common.

"MOST ISSUES FOR A JPOUCHER CAN BE HANDLED BY THE JPOUCHER"

The only one I could come up with is the butt burn issue. It doesn't mean this is the only non-office visit a j-poucher deals with but when statistics of office related issues are factored in then j-pouchers seem to require more medical supervision (frequent pouch checks through endoscopy and any pain or problems with the pouch since it is completely internal).  The point I was trying to convey is I am one of those people who only goes to doctors when things get out of hand.  This could cause more issues with say pouchitis if I wait until it gets out of hand requiring more treatment and might even damage the pouch itself resulting in the pouch failing due to "my" lack of seeking "timely" medical treatment.  Less things can get out of hand with an ostomy in my opinion or at least with me being in charge.

"AND COST OF OSTOMY SUPPLIES."

This I did take into consideration also but it would be a Pro on my list (it didn't rate too high though).  My insurance covers 100% of all durable supplies but will not cover toliet tissue and butt cream so the ostomy was actually financially more feasible for me (this may not be the case for some).  If finances were the main issue to address when making the decision then in theory the j-pouch option might be cheaper as long as the co-pays for any office visits, deductables for procedures being met (annual colonoscopy/endoscopy),  the co-pay for any prescriptions needed, and the cost of OTC medicines didn't exceed the out of pocket expense with ostomy suppies.  Again that was not a main "make it or break it" point for me but the above listed out of pocket expenses would be a concern if a person were using expenses to make a decision. 

I am not trying to get in a debate nor am I trying to sway anyone away from choosing the j-pouch surgery, this information is readily available in a good internet search and like you stated prior, each solution has its own pros and cons and like I stated prior, both options beat the heck out of UC.  I was only showing a few of the pros and cons that I had as major factors in my decision.  tkctwbd, or anyone else considering surgery, will have to tailor their pros and cons list to fit what matters most in their lives.  It is a tough decision, mine came down to could I handle the worst case scenerio for each since both options seemed to be awesome solutions to getting rid of UC.

John

I'm sorry that I can't comment on the age-related questions you're raising. I'm (at 34) not particularly worried about ease of life for people who take care of me when I'm out of it--and I don't know that you should be, either. Most Alzheimer's is not familial, so unless your relatives had familial cases of it, their experience may not mean anything about yours.

You absolutely will be able to garden and do social things (without smelling!) with an ostomy. On the other hand I, like suebear, don't have to stay up late at night until the j-pouch is empty. After a couple of months of adjustment, if I have to go at night, I wake up (usually once a night).

I have a lot of skin problems with adhesives (Band-Aids leave marks for weeks!) but didn't have those problems with ostomy adhesive.

But I do feel like it's important to point out a couple of other things. One is that while a j-poucher goes to the bathroom frequently, the need to do that is NOTHING like the experience of needing to do that with UC. You can hold it; it's like having a healthy bladder. Also, while "reoccuring" pouchitis is common (in the 50% range), the subset of people with "chronic" pouchitis--who have a daily experience that is a lot like having UC--is more like 10%. For people with "reoccuring" pouchitis, that's a few incidents a year, which are treated with a weeklong course of antibiotics. It's certainly up to you whether that's tolerable, but I'd caution you to be suspicious of your own assumptions about it. By the time I got to surgery I, too, would have said "I don't want anything to do with this illness or anything related to it ever again," but like 92.3% of j-pouch patients, I would definitely rate my quality of life "good" or "excellent" (and would go back to an ostomy quickly if it weren't).

Re: the cost of ostomy supplies. If you've got very good insurance and **are sure you'll keep that good insurance forever**, it may not matter to you. I deal with health insurance professionally, and routinely see policies that cover medical supplies--including ostomy supplies--at 50%. For reference's sake, a box of ostomy barriers (which lasted me about a month and a half) runs about $50; a box of ten bags (which lasted me about three weeks) was roughly $30. That's about $950 a year in supply costs (as summerstorm points out, I rarely used any of the peripherals).

Post more questions if you've got them! And if you go to j-pouch.org, remember that most of the posting population there is people who are having surgery soon/had it recently, and those who have problems. As here, relatively few of the people doing great stick around to post more!

I made a list of "things I'm looking forward to after the surgery." Most of those were experiences (like "sitting in a window seat on the airplane"), and it helped me as I went through the process to be able to look at that list and see that more and more of them were happening, and many of them as soon as I was done with the first surgery.

The ET nurses are fantastic; extremely practical and positive, in my experience. It also helped me, when I had the ostomy, to remember that what I was experiencing was (in some sense) wound drainage (which is why the same special nurses take care of ostomies and wound care; basically, it all has to do with skin integrity). I found the whole thing less off-putting that way.

Good luck! Post and let everyone know how it goes.