HealingWell
Search Close Search
☰

Perm Ileostomy or J-Pouch

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/2/2010 4:24 AM (GMT 0)
Ok, so I know everyone is different but I am at the point where my doc is recommending surgery.  I have seen a specialist at Vanderbilt and he is saying the same thing.  My question is which one to go with?  I have one more colonoscopy on Thursday before my GI sends me to a colorectal Surgeon.  Which one do you prefer, the permanent bag or J-pouch?  I'm nervous about either but will be so glad to be off meds.  I have left-sided UC and my doc says he has never had to refer anyone with this to get a colectomy and that he can normally manage it but mine he hasn't been able to.  Remicade worked but caused neuropathy in my left hand so we had to quit.  Just want to get an idea of what people prefer when they have the surgery and pros and cons that you have experienced.  I am not in the best of health (obese thanks Prednisone for 3+ years), 33 years old.  I have adopted a daughter, who is 14 months old, so I have to take into consideration of how this will affect taking care of her, even though I have a wonderful husband who will be helping out with that.  Thanks so much for any of you that can shed some light on this.
Posted 11/2/2010 5:56 AM (GMT 0)
Just had the surery go in to have my J-pouch connected in 5-6 weeks. The bags are not what the ostomy nurse cracked them up to be she said a bag should last 3-5 days and I havent had one last beyond one day since the first one. They come unstuck and leak. They are a very big hassle each change the skin seems to get more irritated each change which exadgerates the problem. One bag detached during the night causing the biggest mess in the history of messes. As long as the J-pouch reaches optimal productivity I personally will be very happy to get rid of the bags. Moving, stretching, breathing in certain positions all cause the contact ring around the stoma to lose contact and eventually it comes off.
Posted 11/2/2010 6:49 AM (GMT 0)
I would definitely go the J-pouch route if or when I get surgery.
Posted 11/2/2010 1:11 PM (GMT 0)
Both surgeries are good choices but since you are undecided it might be best to get a temporary ostomy to give yourself some time to heal and get back in better health. You can keep your ostomy for months or years until you are ready to make a decision.

Sue
Posted 11/2/2010 6:13 PM (GMT 0)
     I suffered with ulcerative proctitis for twelve years, the last two becoming prednisone dependent.  I went the whole nine yards....6MP, Remicade, Humira, not to mention the "others"....Colazal, rectal meds, you name it.  My GI doctor did NOT recommend me to a surgeon.  He did say if there came a day where I would "need" surgery, to make sure it is with an excellent one.  Well, the day came and my GI doctor of twelve years let me down.  I had to take matters into my own hands and depended on the net.

     I live in south Jersey and refuse to go to a hospital in this area for major surgery.  I looked online for a good colorectal surgeon in Philly and found one.  Dr. Fry is head of colorectal surgery at Univ of Pa Hospital.  He would NOT do a j-pouch on me stating that at my age and being prednisone dependent for two years, it would be too high of a risk.  I told him I had no problems wearing a bag.  Had my total colectomy and permanent ileostomy on June 28th.   I did have some complications while in the hospital but Dr. Fry and his staff were on top of it.  I am still having some minor problems (abscess in anus as he did not sew it closed...he said in his opinion there are more complications when this is done).  I am still draining a bit but overall I feel great and do not have any regrets.

    I am off ALL medication.  By the way, I am 64 yrs old.

    I have no idea why Brad is having so many problems with his bags.  I found that Hollister did lead so I switched to one piece Coloplast and I love them...no problems at all.  I do have some skin irritation under the wafer but nothing major.

    Whatever you decide I wish you the best of luck and God bless.

Posted 11/2/2010 6:45 PM (GMT 0)
I really like what Sue said. I personally would prefer to get a j-pouch, but you'll get a chance to see what life with an ostomy is like (unless your surgeon does 1-step j-pouches, which I personally wouldn't try) and go from there.
Posted 11/3/2010 1:26 AM (GMT 0)
i chose a perm ileo, because i didn't want more surgeries, i wanted to get it over and done with! my son was almost two at the time, and i didn't want to have to be away from him anymore than i had to. Also, i honestly never wanted to use the bathroom the regular way again!
getting a bag to stay on is a learning cuve, but most people get 4-7 days, brad's situation is not the norm.
Anyway, whichever you choose, the UC will be GONE!!!
Posted 11/3/2010 1:45 AM (GMT 0)
I'm with sue as well. Most of the time the J-pouch surgery is at least 2 steps, temp ileostomy for anywhere from 2-4 months depending on how sick you are and then a take down surgery. If you decide you like the bag the they can close the anus later. if you get the pouch and decided you'd rather go back to the bag they can do that too. But if you get the permanent ileostomy then that's that, no going back. Personally I don't mind the bag, but I'm going to get the J-pouch (or reconnected) as soon as my doctors give me the go ahead. For me its more a body image thing and not a hassle because of leaks or anything. But I have heard that being overweight can cause some issues with bag leaks so that might be something to consider if you have trouble getting weight off once you're able to stop the pred. Good luck with your decision! And yeah regardless of which you pick, its so much better to be off meds and not tied to a toilet :D
Posted 11/3/2010 2:21 AM (GMT 0)
I keep fighting and fighting to keep my colon, because I am afraid that I will be a problem child without a colon too I guess, but if and when I finally resort to surgery (which seems very likely now) I will opt for a jpouch. In my case, due to being on biologic drugs, I am told that a 3-step will be mandatory because in this case it has been shown to drastically reduce the incidence of sepsis. I was downbeat to learn it would be three surgeries over a period of 6 months, but considering how much I have gone through with UC and constantly trying to avoid surgery, I figure what's an extra surgery or two if it is all heading towards light at the end of the tunnel. Like suebear, I am addicted to lots of travel to remote places and enjoy many outdoor activities such as cycling, hiking etc and would want to avoid having to carry around ostomy supplies all the time, so I am hoping a jpouch will work out. Whatever your decision, you will be free of this stupid disease soon!
Posted 11/3/2010 3:30 AM (GMT 0)
I was very sick when i had my surgeries so i had to have 3 surgeries.  I had to have a temp ileostomy for a year because of some other complications.  I had my reversal a year later and now have a j-pouch.  Having both i would be happy either way.  As long as you dont have your diseased colon i think you will be happy as well!! Some pros/cons of each for you, the bag for me was easier, less gross, than i thought.  It was pretty easy to take care of and eventhough i did have a few leaks it wasnt as gross as i thought it would be and wasnt that hard to take care, nor was it hard to hide. You can go to a restroom whenever your bag gets full so theres no running to a restroom or those kinds of problems.  The cons were that my skin got pretty bad around the stoma cuz of changin my bag so much and the skin would bleed and hurt sometimes when i didnt moisturize it enough. I almost didnt get the reversal cuz i told my surgeon i was happy the way i was but he convinced me to have it and im a lot happier with the jpouch.  Although if i ever had to go back to the bag i would be fine with it but life is so great with the jpouch!  I can eat whatever i want, i can hold it for quite a while(usually half hour), i dont have to worry about the bag leaking, or possibly showing or my stoma getting hit, or if i brough extra supplies with me, so on.  It havent been on any meds since i had my colectomy and i have never thought i would feel this normal again.  I just got married and am working on getting pregnant and my life really turned around after my surgery.  I lived 10 years of my life with a diseased colon and now at age 25 ive just started to really live!! Either way, get the surgery, but i would recommend getting the temp ileostomy first so that way you can see for yourself cuz obviously everyone has different circumstances and experiences.  Sorry i was kinda rambling!  Goodluck!  let us know what you decide!
Posted 11/3/2010 10:03 AM (GMT 0)
Hey Comber- great to hear you are living UC free now. Just wondering - you can only hold it in for 30 minutes with a jpouch? Is this typical or does it keep improving? I was led to believe that you can hold it in for hours if need be, sort of the way we can do when peeing isn't convenient. My work might require being away from a toilet in the day for several hours at a time but I am hoping this won't be an issue with a jpouch, since there is supposedly no urgency once one has fully recovered from the final surgery- which i know can take a while to fully normalize sometimes (6 months to a year).
Posted 11/5/2010 5:22 AM (GMT 0)
I had my reversal Jan 09 so i have had my jpouch for about 2 years now and i still go about 8 times a day. It stared off about 12 and has gotten less and less but the urgency is still a little bad sometimes. I guess from the time i realize i have to go i can usually hold it for a while, but it gets very uncomfortable. the longest i ever had was in a car trip from new orleans back to wisconsin and we had 3 closed rest areas in a row! i was freaking! But one of the big things with urgency is what type of food you ate. The consistency of the stool plays a big part on how long your able to hold it. Sometimes my stool is pure liquid, sometimes a somewhat mushy consistency and sometimes totally normal just a small amount, so some is harder to hold than others. Also, taking imodium daily helps urgency and consistency but i only take it as needed cuz its a little expensive. If you have any other questions, let me kno!
Posted 11/5/2010 11:35 AM (GMT 0)

Christine1946 said...
He would NOT do a j-pouch on me stating that at my age and being prednisone dependent for two years, it would be too high of a risk.

Does anyone's GI ever discuss the possibility of not being able to get a J-pouch under certain circumstances? Or do they just wait until it is too late to opt for a J-pouch before informing their patients that there are certain conditions under which one cannot get a J-pouch?
Posted 11/5/2010 12:11 PM (GMT 0)

Comber said...
I had my reversal Jan 09 so i have had my jpouch for about 2 years now and i still go about 8 times a day. It stared off about 12 and has gotten less and less but the urgency is still a little bad sometimes. I guess from the time i realize i have to go i can usually hold it for a while, but it gets very uncomfortable. the longest i ever had was in a car trip from new orleans back to wisconsin and we had 3 closed rest areas in a row! i was freaking! But one of the big things with urgency is what type of food you ate. The consistency of the stool plays a big part on how long your able to hold it. Sometimes my stool is pure liquid, sometimes a somewhat mushy consistency and sometimes totally normal just a small amount, so some is harder to hold than others. Also, taking imodium daily helps urgency and consistency but i only take it as needed cuz its a little expensive. If you have any other questions, let me kno!

Thanks, Comber- sorry that you still experience urgency... that is of course something we all dream of being rid of with surgery. I guess if I have to be an immodium addict with a pouch, I will do it as need be- I spend thousands a year on probiotics as it is anyway. I wish you continued improvement.
Posted 11/5/2010 1:47 PM (GMT 0)
Subdued,

It's not the GI's call, or area of expertise, to tell a patient whether or not they are a viable candidate for jpouch surgery. Of course they will offer an opinion. Anyone looking into surgery should have a consultation with a surgeon and send all their records prior to that appt. And I can't stress this enough.........only consult with a top CR surgeon! Do not go to the local hospital, the VA, or use a Medicare surgeon. This is a complex surgery and requires a surgeon with lots of skill.

Sue
✚ New Topic ✚ Reply