perm ileostomy or j-pouch?

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tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/13/2008 11:09 AM (GMT -6)   
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

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/14/2008 5:17 PM (GMT -6)   
I don't know of anyone at the age of 80, but you can go to jpouch.org and post your question there.

Hope that helps
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/14/2008 5:24 PM (GMT -6)   
I will.
But what is it like for older person with a perm. ileostomy?

thanks

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 12/14/2008 8:03 PM (GMT -6)   

You can meet several people who had jpouch surgery in their late 60s at www. j-pouch.org

As for continence in older age, I just saw a CR surgeon speak on this and he said that those with jpouches have better sphincter control than those with colons in later years!!  The reason is that due to frequency jpouchers use those muscles more frequently keeping them stronger and well tuned.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/15/2008 2:00 PM (GMT -6)   
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/15/2008 2:53 PM (GMT -6)   
the only thing i think about the jpouch versus the perm ileo, is i remeber when my uncle was in the late stages of alzhemiers (sp?) he as about 80 and he was wearing diapers and such and at that time my aunt was changing them, she was 79, and i think it would have been easier on here to empty a bag. Alot of his problem was not that he didnt' have control, but that he would forget to go, or not know he had to go.

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/15/2008 3:16 PM (GMT -6)   
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.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 12/15/2008 3:43 PM (GMT -6)   
There are pros and cons to each surgical choice and I recommend you do all the research you can before making a decision. The 3 most popular surgeries are the j or k pouch and the permanent ostomy. I interviewed people with each type, made a list of pros and cons, and added in my lifestyle to get to my choice. There is no wrong choice just the choice that is best for you.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/15/2008 4:09 PM (GMT -6)   
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

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/15/2008 4:45 PM (GMT -6)   
you could go ahead and get some samples from the suppliers and put them on and see how your skin handled it.

As for doing all the things you want to do, you can do them all! you can date (although being married might put a stop to that, lol) you can play sports, you can swim, you can work in your garden, you can do every single thing (except poo the normal way) that you can do now, and probably more because you will feel well. You won't smell and noone will see it. There is not a thing you can't do! i promise!

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 12/15/2008 5:05 PM (GMT -6)   
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 


Total Colectomy with End Ileostomy May 27th, 2008


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 12/15/2008 9:19 PM (GMT -6)   

Great list John but since I have a jpouch I should correct some of your claims IN CAPS:

-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. NEVER HAVE I FELT THAT EXTRA VISITS TO THE RESTROOM ARE LIKE UC DAYS.  THERE IS NO PAIN OR URGENCY WITH A JPOUCH.
  • 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) POUCHITIS IS MOST OFTEN A ONE-TIME ONLY OCCURANCE, NOT CHRONIC.
  • Possible problems with developing a rash through over use of my behind.  BUTT BURN CAN BE UNCOMFORTABLE (I HAVE NEVER EXPERIENCED IT) BUT CAN BE CONTROLLED WITH OTC CREAMS MUCH LIKE OSTOMY SKIN ISSUES CAN BE TREATED OTC.

 

Ileostomy

Pros

  • No urgency issues (that was a big one for me) you empty at your convenience.  I DO NOT HAVE URGENCY ISSUES WITH A JPOUCH.
  • Very little possibilities of need for medical attention, most issues can be handled by the ostomate. MOST ISSUES FOR A JPOUCHER CAN BE HANDLED BY THE JPOUCHER
  • 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)  MOST JPOUCHERS ARE CONTINENT.

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.
  • AND COST OF OSTOMY SUPPLIES.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 12/16/2008 3:29 PM (GMT -6)   

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):

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


Total Colectomy with End Ileostomy May 27th, 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/16/2008 4:14 PM (GMT -6)   
here's a point about the Toitlet paper that is a good thing for the perm ileo. You can buy the super cheap stuff, i buy like 40 rolls for 15 dollars at Sams, and it doesn't matter how soft it is, lol. And of course, as he was saying, you don't have to worry about using things like desitin or that stuff.
i don't pay much for my supplies, after insurance that is. And some of the things that people buy when they first get their ostomies are things that after they have had it a while or talked to some one who has will realize they don't really need, or that there are other, cheaper things you can use.

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/16/2008 7:02 PM (GMT -6)   
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!

tkctwbd
Regular Member


Date Joined Dec 2007
Total Posts : 82
   Posted 12/17/2008 2:19 PM (GMT -6)   
So much input and info has been added. I was gone yesterday to see second surgeon and close out my clinical trial with GI. The second surgeon is also willing to do a pouch on me. He suggested like some here that I talk with "wound care" nurses, and so I have appt in January. The wound care people told me that they would be willing to put a "pretend bag" on me to see what it would be like and see if it irritated my skin. I am so thankful they offered that.

In meantime, I have printed out responses and plan to study them with my husb and sister in Atlanta.

This UC has really knocked a lot out of me, but I just know I will get my strength back once I get that sick colon out. A lot of the fear I had about anesthesia is gone. The clinical trial people told me yesterday that I looked/acted really well. That is because it is a relief knowing I am going to get that thing OUT!

I'm just curious. Does anyone who had UC remember having feverish feeling every day? I take Tylenol around clock to ease this sluggish feeling. I'm hoping that will go away with surgery. I am so tired of pain/discomfort at night, and having to get up to go with output only small amt. I want to make a list of all the problems UC has brought on. Then I can look at list yrs from now and remember what it was like; and why I had surgery. I don't ever, ever want to forget.

Thank you everyone!

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/17/2008 2:28 PM (GMT -6)   
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/17/2008 2:47 PM (GMT -6)   
i always felt feverish and queasy when i was sick.
Charlottes idea of making a list is a good one! it amazes me, that even after a year and a half of no UC i find something almost everyday that makes me glad i had surgery. It's usually the stupidest little things too, like one day it was that i ran out of water and had to drink something else (which always upset my stomach when i had UC) and even though i had to order a drink i didnt' like, i was so happy just to get to order it!
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