Help with my decision

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BEQ
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/23/2008 1:39 PM (GMT -6)   
Hello All,
I am currently investigating my options because of the necessity to remove my colon in the very near future due to UC.  I have questions for all K-pouchers, J-pouchers, BCIR patients.
1)  Please identify which applies to you (K,J, BCIR...?)
2)  Did you have rectal removal (and did it include or not include the sphincter muscle)?
3)  What was your outcome?  Are you satisfied with the outcome.
I am likely to have entire rectal area removed and am curious mostly about the J-pouch's success with or without the rectum.  I understand there is the potential of quality of life to be no better and that my cancer risk only would be eliminated (I have dysplasia).  I have talked to many who have the J-pouch, but no one with it who is rectal-less (is that a word?) 
Please help me attain the power of knowledge!
Thanks,
Jeff

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/23/2008 3:12 PM (GMT -6)   

I have a jpouch and had my surgery 7 years ago.  No matter which surgery you choose you will lose your rectum but not necessarily your anus.  The kpouch, bcir, and permanent ostomy all involve removing the colon, rectum, and anal sphincters and involving sewing up the back end (barbie butt).  The jpouch is the only surgery for UC that allows the anal muscles to remain therefore giving one the same method of bowel contienence that a person with a colon has.  The jpouch essentially replaces the rectum.  Most UC patients opt for a jpouch, it's the standard of treatment these days.  Kpouches, BCIRs, and permanent ostomies are often done if a jpouch fails.  By no means does that mean that you have to choose a jpouch.  Each surgery choice has pros and cons and prospective patients should weight their lifestyle with the surgery types.  It took me about 2 months of research and talking with people who had each type of surgery before I made up my mind.  I recommend you visit www.j-pouch.org for more information.  That site has over 6000 members and is for k-pouchers, ostomates, and jpouchers. 

BTW-I am thrilled with my jpouch and have never regretted my decision.  It was the best choice for me.

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


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/23/2008 4:19 PM (GMT -6)   
I am in the process of the j-pouch currently at the 2nd step. 1st step they removed my colon leaving a small part of the rectum and formed an end ileostomy, usually 3 months later they perform the 2nd step where the pouch is created and rectum is removed and form a loop ileostomy, 3rd step again 3 months later is when they close off the loop ileostomy and you return to having bowels move thru pouch and out the anus. I was never opted any other type of surgery I think that the j-pouch is the most used surgery if you are a candidate.

I think that you have to decide if you want several surgeries or not, how you think your quality of life would be afterwards. I know that lapro surgeries are much easier to heal from and wish I could have gone that route instead of having scars that look like road maps, but I'm older and never did picture myself in a bikini ever again anyway! And with any surgery, there are risks and complications that can arise that you should be aware of.

As for quality of life, we have all had to deal with poor health due to our disease, and removing the colon when you have UC is the best thing you can do for saving your life. I am looking forward to the final surgery and hopefully it will work out, if not I can always go back to a permanent ileostomy and know that I can do everything if not more than I could when I had UC.

As Sue said, there is a wealth of information on kpouch, bcir, and jpouch surgeries at the jpouch website. Do your research and post questions and hopefully you can hear from others who have gone through the other surgeries. My only advice to you is to make sure that you have the best surgeon in your area in whatever you decide, they will be your lifeline for years to come. They also have a list of the top surgeons on that website as well.

Good luck in finding your information and hope all goes well for you.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/23/2008 4:48 PM (GMT -6)   

Hi Jeff- I have surgery scheduled for the beginning of May, for UC. I am opting for a total proctocolectomy (removal of colon & rectum), with a perm ileostomy. I am a candidate for jpouch, but after doing a lot of research & soul searching, I chose not to. These are the reasons why: I do not want to go thru 2 or more surgeries. With a jpouch, I understand that it takes a good year for things to settle down to "normal" bowel action- prior to that, you are experiencing anywhere between 4-8 bm's a day, mostly diarrhea. To me, that's not much of an improvement over my current status! Also, when the rectum is left in, that too can become inflamed, with pouchitis- after undergoing suregry I have no intention of getting any type of "itis" diagnosis again.! I did a lot of reading on the jpouch forum, & the problems people are experiencing on that are way too similar to UC itself- "butt burn" from constant diarrhea, lack of bowel control, having to wear sanitary napkins or diapers, feeling afraid to leave the house due to the bathroom issues....these are all things I want out of my life forever. And on top of all that, the pouch may in fact fail, leaving one with a perm ileostomy after all. Another factor to help me decide was that I have a child already & am married- if I was much younger & in the dating scene, I probably would opt for a jpouch just for esthetics. I know there are many people with jpouches who are very happy with their decision. I just know for myself, the chances of something going wrong are too great for me to take. Do I really want an ileostomy? Heck NO! But truly, I am looking forward to my surgery so that I can start to feel better, & heal immediately, with no other surgeries/issues to (hopefully) come up. Like people said- do your research, ask tons of questions, talk to a surgeon about all your choices. It will take a while, but you will know what's right for you when you arrive at that decision. Good luck! Hope this helps!



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

Post Edited (Eva Lou) : 3/23/2008 5:08:42 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/23/2008 5:08 PM (GMT -6)   

Okay, let me put the record straight since I do have a jpouch.  I do not have diarrhea, I do not have a lack of bowel control and I have never had butt burn!  My bowel movements are formed unless I eat a lot of sugar which loosens things up but certainly does not cause diarrhea.  Recovery was long but in that first year I went back to work within 3 weeks of surgery, went camping 6 weeks post surgery, traveled through Europe at 3 months and did a half marathon at 6mos.  I was far from spending a year out of commission.  It's best you get you surgery questions (kpouch, jpouch, bcir, or ostomy) from people who have had the surgery rather than those who haven't gone through the process.

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


viking99
New Member


Date Joined Nov 2007
Total Posts : 13
   Posted 3/23/2008 5:57 PM (GMT -6)   
sue:

i see you had UC for about 7 years. what made you get the operation - can you please discuss a little of what the turning point was in regards to your UC and reasons for operation?

also, with respect to the surgery...(and please excuse the following comments if they sound kind of shallow but they are not meant to be) how long were you in the hospital? it appears as though i am going to have the surgery within the year but my concerns are post-operation. I run my own business (lots of people depend on me decision-wise) and am trying to gauge how soon after my operation (under normal conditions) i can start answering emails and talking on the phone to my clients. is this the kind of thing that i am out pretty hard for a week or so...can you discuss the elements of post-operation? i am trying to start planning how everything is going to work for me. luckily much of my work is online via email and over the telephone and can work from home if i wanted to.

it's encouraging for me to see that you were so physically fit to run half a marathon within 6mos of surgery. that means a lot to me. i am very active myself.

thanks so much.

viking.

StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/23/2008 7:50 PM (GMT -6)   
Viking,

I'm sure Sue is going to answer, but to add an additional pov - I never stopped working through ileostomy, ileostomy takedown and colostomy. The worst period was after the takedown when it took a couple of months to become evident that I didn't have a functioning bowel. However, I do have the luxury of working from home and simply pared down my duties to the essentials and camped out in the bathroom.

Within 6 weeks of ileostomy I was traveling cross-country on my own (flying). I had a lot of procedures in a short period of time so there was some exhaustion, but I was a whole new person with my ileostomy. The same with the colostomy - up, about, and testing my own limits within a couple of weeks, but always capable of being online (even in the hospital) or on the phone. The times I did go into the office were carefully selected for relative calm (I work in medicine, hence "relative").

I don't have UC so I can't speak on how your body will recover, but generally you're to expect to be hospitalized for 4-7 days. I did my colostomy between christmas and new years. It was the best gift ever.
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


BEQ
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/23/2008 8:19 PM (GMT -6)   

Eva Lu's concerns are the same as I am going through.  After 40+ years of UC, the stories that have been shared about incontinence and "butt burn" with the j-pouch sound like a continuation of the symtoms of UC.  In the past, I opted to not have the surgery because of that.  Now that I am in a pre-cancerous condition, I have no choice but to do something.

I do have a friend, like you Sue, who has had success with her j-pouch; however, her rectum is intact.  That is why I am posing the question about the rectum and/or anus removal.  My surgeon (I will also get a second opinion) indicates that I may very well lose the rectum and that not only may the sphincter muscles be compromised but that I may experience impotence.  I am trying to get a sense of commonalities of those whose j-pouch's are successful.

All opinions and advice are gratefully received.

Jeff


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/23/2008 9:06 PM (GMT -6)   
eva lou pretty much said everything i think.
I did go to j-pouch.org and read some stories and all, and i saw alot of people who were happy, and then i saw some who weren't. I went to perm ostomy boards too, and saw alot of people who were happy, and again, some who weren't. But, the reason i chose the perm ileo is because i didn't want the chance of something failing, and i didn't want to be one of the people with the j-pouch that still had urgency and 4-8 a day. My GI was trying to push my towards the j-pouch, but when he told me about it, about the frequency and such, it didnt' seem like it was gonna help anything, and honestly, i never wanted to go to the bathroom the "normal" way again, i had had it with that!
was it my dream to poo in a bag? NO! but it's sooo much better than having UC, i can do whatever! i haven't run any marathons, but i am lazy, lol. I have been able to go to the beach, trek through the woods, go on road trips without worry, and best of all, EAT, whatever and whenever. ANd there are some perks of having an ostomy that you really wouldn't think of. it has been almost a year since my surgery and just about every day i realize something i couldn't do before, and am able to do now!
i would think you would be able to get onling and on the phone pretty soon afterwards. THe first few days you will probably be pretty loopy from the drugs, but after that you shoudl be fine

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/24/2008 6:50 AM (GMT -6)   
Sue, please don't take offense as far as "setting the record straight"- I'm basically quoting straight from the jpouch forum. Simply having had jpouch surgery does not make one an expert. You really must have been one of THE luckiest folks if you had absolutely NO diarrhea, butt burn, etc. Also- note that the D & butt burn & such are happening in that first year when your body is readjusting. But, aren't you still having multiple bm's a day? Or to phrase it properly, don't you still have to empty your jpouch numerous times a a day? And is it liquidy? Every GI/surgeon I've talked with tells me this is the case- are they wrong? See, personally, I don't want to be sitting on the toilet at all anymore- I know with an external pouch, you are emptying many times a day, but it seems to be pretty fast, in & out. I just don't want to poop again from my bottom! Ever! I'm not claiming to be any expert on jpouches, but if you spend any amount of time on the jpouch forum, those are the things people are complaining about. My intent was to explain how I've made my decison, that's all.



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

Post Edited (Eva Lou) : 3/24/2008 7:03:42 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/24/2008 7:09 AM (GMT -6)   
Viking,

I had UC for about 12 years, the first 10 years were in remission the last 2 years I was in a non stop flare. After much internal debate and struggle I opted for surgery because the fear of long term pred use outweighed the fear of surgery. I was fortunate to have met a jpoucher face to face which eased my fears. I went back to work at 3 weeks post surgery. I could have probably gone back after 2 weeks. I went back with my ileostomy and 8 weeks later I had the reversal surgery and stayed out an additional 3 weeks. I was in the hospital for 7 days after the first surgery. Barring complications it's reasonable to think that you can be back working by phone and email after 2 weeks. Fatigue was a problem but I took naps every afternoon after work. Yes, I am very active and it was a priority for me to have a surgery that would allow me to continue being physical. I am a backpacker and long distance (100-200) mile hiker.

Eva Lou, As with HealingWell's UC site many of the posters there are from people who are struggling with their jpouch, their recovery, or their pending surgery. Most of us who have had surgery are out living life and not visiting the site so the perception is skewed. Are their problems with jpouches? Yes, but each surgery choice (kpouch, bcir, permanent ostomy, and jpouch) can have potential problems. There is not one type of surgery that is perfect. My GI also told me I would have permanent diarrhea post surgery and he was WRONG. I have learned that GIs no relatively little about this surgery as once they lose a UC patient to surgery they never see them again. Their information is outdated. Their was a surgery prior to the jpouch called a straight pull-thru which did indeed cause permanent diarrhea. That surgery is no longer recommended for adults. I also think thag GIs are just out of touch with surgery. After all they practice medicine, not surgery. I am not one of the luckiest with a jpouch, I am amongst several thousand people who jpouch has given me my life back. I have no more bowel movements per day then you will have emptying a bag. Some people to have butt burn but they manage it. Just as ostomates can battle skin irritation. Again, no one surgery is perfect all choices come with trade offs and compromises. You have picked the best surgery for you and I commend you for that.

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


BEQ
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/24/2008 4:17 PM (GMT -6)   
Suebear, Given my recent experience,you are right in that GI docs are out of the loop. At the time of his referal to a surgeon, my GI (whom I have trusted for around 15 years) calmed my fears of surgery by telling me how "basic" the J-pouch surgery is & how it is primarily done laproscopically. In other words, BADDA-BING BADDA-BOOM.... WHAM BAM,THANK YOU MAAM and see ya later. I think my surgeon was quietly going ballistic when I told him what the GI doc said. Essentially,and calmly, his reponse was "NOT"!! So this is why I now find myself at this difficult crossroad; pouch or ileo, pouch or ileo. Haven't heard yet from any BCIR people.


Jeff

Post Edited (BEQ) : 3/26/2008 9:58:16 PM (GMT-6)


StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/24/2008 5:41 PM (GMT -6)   
BEQ:

Quote of the day: "I think my surgeon was quietly going ballistic when I told him what the GI doc said."

yes, probably!

I had to think a bit, but I have a friend who has a j-pouch as a result of cancer and an ongoing battle with lupus. She's a fantastic lady and i didn't know she had a pouch and she didn't know i had an ostomy until one day I said something. I can say that she has nothing but praise for her life with the pouch. She didn't want something external and refused an ostomy until they offered her the j-pouch option. I could totally understand where she was coming from with that. Now she goes fishing a lot and spends time with her grandchildren - she's living her best possible life.

essentially in making this decision, that's what we're all aiming for - the best possible life. The short-term is to get out of pain, stop the disease, come off crazy-making medications, but the long term is the best life possible. So view your decision through that lens. There are always people who don't respond well to one medical procedure or another. You ever hear that saying: if someone is happy they will tell one person, if they are dissatisfied they will tell 10? it applies to ostomies and pouches, especially, i think.

some of the questions i could see myself asking if i were in your position are:

1. How much surgery am I willing to endure?
2. Can i deal with a bag or do I want something hidden?
3. What's the worst that can happen with either option? (butt burn, jacked up stoma etc.?)
4. What is my and my family's capacity to deal with WPO (worst possible outcome)?
5. How much of my life am I willing to commit to this endeavor?
6. How many of these procedures a. or b. or c. has my surgeon performed?
7. What is the surgeon most comfortable with in this situation?
8. What is my best possible outcome with option a. b. c.?

It's difficult to conceive of life with an ostomy before you have it. Not even difficult, impossible. The question really isn't "what's going to cause me the least misery?" The question is "what is going to give me the best possible life?"

Eva, you really can't gauge life with an ostomy by the complaints people make. It's neither accurate nor fair. There are people who empty their bags 4 times a day, 6 times a day. There are also people who pee that often. Emptying your bag works on the same schedule. I can't pee. I can tell you that having to catheter is 1000 times more hassle than dealing with any aspect of an ileo/or/colostomy. i remember when i was facing the ileostomy i got online and so many people were so negative - but my life was on the line. Afterwards, my vanity was hampered a bit, but then I started feeling REALLY, really good. My family had never seen me as an adult who wasn't in pain. My mother cried a lot. She couldn't believe the change in me. I go to boards and chat groups and I still see the very same people making the same complaints. You can find out the possible complications and pitfalls of ostomate life from people who are happy or from people who are just plain miserable for reasons unknown but attributed to an ostomy (poor self-care and lack of self-awareness as an ostomate are incredibly common and detrimental to recovery of any sort). I have to echo Sue on this one: always consider the source.


smurf
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/24/2008 5:48 PM (GMT -6)   
BEQ, one more thought,

with the j-pouch don't you have to start at an ileostomy anyway? So, you know that whatever you choose, you're getting an ileostomy? is is possible - and i don't know as i don't have a pouch - to reserve the rest of the decision for later? Is it a question of how much of your colon to remove? Can that be done in stages? you're getting an ileostomy, regardless, so that question is taken care of.
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/25/2008 9:50 AM (GMT -6)   
you guys are totally right- I tend to forget that one only gets a skewed perspective from reading forums, and that most, if not all, of the posters are experiencing problems! And also- I do have to say that everyone on here has been a huge inspiration for me in deciding to get surgery- regardless of what type of surgery anyone has.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


BEQ
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/26/2008 7:08 PM (GMT -6)   

Hi everyone,

This is Becky, Jeff's better half (of course it depends on who you ask ;-).

First, I want to thank all of you for your feedback.  I encouraged Jeff to participate in this type of forum as I received incredible insight myself from one last year when faced with an upcoming surgery.  I believe, at first, Jeff was overwhelmed with all the information and what he perceived as "horror stories" of results of surgeries. But I get a sense, within the last 24 hours, that he has been put a bit more at ease with all of your reasoning about the skewed perspective when reading the forums.  I believe he has accepted that the bottom line is that he will recognize an improved quality of life regardless of which option he chooses.

We have been together now for 32 years (28 married) and the first thing I said to him when he told me he decided to go forward with the surgery was "You don't know how happy that makes me because I want you with me for a long, long time."  Then, of course, I felt horrible when we found out the surgery wasn't a slam-dunk (I think Jeff used some other profound terminology) as his GI indicated.

Please keep up the encouragement, it is helping us both! 

Becky


Becky or Jeff


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/28/2008 5:57 PM (GMT -6)   
stomagirl is right, you do start out with an ileo for the jpouch surgery and you don'thave to have the takedown within any specific time frame, i think there are some people on this board who were going to have the takedown, and then decided not to.
As for the BCIR pouch, it's great in theory, but the surgery has not been done very many times, and is only done in two or three hospitals in the whole US, if you live near those hospitals it's fine, but otherwise, if you ever have a problem, you have to go back to a hosptial that does those surgeries, i know there is one in lousinia and one somewhere in the north, but i am not sure where.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 19, 2017 4:40 PM (GMT -6)
There are a total of 2,870,501 posts in 315,007 threads.
View Active Threads


Who's Online
This forum has 156507 registered members. Please welcome our newest member, Missouri.
403 Guest(s), 9 Registered Member(s) are currently online.  Details
Lapis_29, mattamx, Misalily, Terry's Cellar, gozalot, wearyRAsufferer, hpymomof3, Aerose91, WV Mike


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer