Why hadn't I heard of this? (K-pouch)

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Hoshi~
Regular Member


Date Joined Jan 2011
Total Posts : 189
   Posted 8/16/2011 2:02 AM (GMT -6)   
I was mentioning the possibility of future surgery to my husband again tonight. He still thinks it's too extreme, and I'm still afraid that I won't be allowed because I'm not "sick enough" but I really look forward to the idea of being able to end this all in the future (few years).

I know he doesn't really see how this affects me day to day - I'm not sick enough to *show* it but anything beyond the day to day work-small errands-home routine gives me incredible anxiety, and legitimate anxiety, not something that can be medicated away. I made it through the weekend's social events with lomitil - only had to go once on Friday, conveniently before leaving for the wedding, <em>but</em> was left with this little cramp in my side that felt like my body's.. well the <em>disease's</em> way of saying, 'don't think you can forget about me, I'm still here!'. Was fine for Saturday's party but I was falling asleep on the comfy couch in the evening, thanks to the meds, and suggested we leave when it started getting late, not because it was late but because I was starting to feel gassy and in my experience that late night gas starts turning into more and I didn't want that to hit on the long walk back the car. (Sadly my mind still thinks I'm a night person but my body doesn't.)

Today my body seemed to be making up for lost time, 12 total unless another sneaks in before bed. (Not d, just firm little ping pong balls, all day long.) 11 of those were fine, at home or mostly at work without any meetings or badly timed phone calls, but <em>one</em> hit in a drug store I've never shopped at before, stuck in line behind a woman obsessing over her coupons... How do you explain that kind of torture to someone who's never experienced it?

Anyway I was researching tonight... I know I don't want a j-pouch - if I have surgery it's to be <em>done</em> with pooping the "normal" way. I assumed that meant an external bag, and he was honest enough to admit he'd have to think about how he'd feel about that. Then I read about the k-pouch... seems like the best of both worlds! No more pooping the old fashioned way, but no external bag for the ick factor.

Has anyone gone this route? Why do we only hear j-pouch?
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*

Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily

Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 21765
   Posted 8/16/2011 5:55 AM (GMT -6)   
The K-pouch is a more difficult procedure but we used to have a member who posted on here. She had the K-pouch done and we have not heard from her since. I am sincerely hoping it's because she is out enjoying life again! :)

As far as I know, there is only one hospital/one doc team that does it. They are located in Florida. If I was to ever have surgery, this is what I would want too. But the travel to Florida would be stressful, not to mention I KNOW my insurance wouldn't cover it. I have a strict HMO :(
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis~GAD-Klonopin (.25mgs)~Rosacea~IBS~Diverticulosis~Fibromyalgia

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5302
   Posted 8/16/2011 7:46 AM (GMT -6)   
There are 2 procedures that empty through the abdomen; the k-pouch and the BCIR. The BCIR is a proprietary procedure (valve) and is only practiced in 2 hospitals; one in FLA and one in CA. The k-pouch is more widely practiced but not as widely as the jpouch. The k-pouch is not often the first choice of surgery but it is a viable option. I was very close to getting a k-pouch instead of a j-pouch but after much research I opted for a j.


Sue

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 2828
   Posted 8/16/2011 9:13 AM (GMT -6)   
Hope this bit of info helps:

The K pouch is also known as the "continent ileostomy." Unlike the J pouch, which is attached to the anus to allow you to go to the bathroom the usual way, the K pouch is a fancy form of an ileostomy. Unlike a usual ileostomy which needs to be attached to a bag outside the body, the K pouch provides a reservoir for the stool and adds a nipple valve to prevent the stool from leaking. The pouch is emptied by inserting a stiff catheter through the stoma, which is covered with gauze in between emptying. One problem with the pouch, and the reason it is not very popular among surgeons, is that the valve often comes undone, or slips, and another operation is needed to repair it.

In my opionion, the J pouch is the much better way to go and it is performed a lot more often. There are many skilled surgeons out there that do the J pouch surgery. The more skilled they are at it, the better your outcome will be.
 
Marianne
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6551
   Posted 8/16/2011 4:31 PM (GMT -6)   
you don't have to be sick enough, its your choice regardless.
I read about the kpouch and thought about it, but like was said it has complications and if you are out somewhere and it gets full how do you empty it? I guess you would have to take the tubes with you, Ick!
I chose a bag, I didn't want a jpouch either, didn't want the extra surgery or dealing wih possible complications. Anyway, your husuband shouldn't have any problem with anything that makes you healthy! If he has reservations have him read some of our stories.
Good luck
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Hoshi~
Regular Member


Date Joined Jan 2011
Total Posts : 189
   Posted 8/16/2011 5:51 PM (GMT -6)   
[quote]you don't have to be sick enough, its your choice regardless.


This is actually reassuring to hear. I'm curious what my doctor is going to say since I have an appointment coming up in a week. (I'm so *impatient*... I know obsessing over something that's still so far away.)

Carrying supplies wouldn't be a big deal to me. I'm already known for my backpack-of-everything that I carry everywhere. I even have one of those travel-size rolls of toilet paper, which funnily enough wasn't UC related but I picked up after twice in the same week ending up in a tp-less stall in a public bathroom to pee.


As for my husband - I had a conversation with a friend last night, sort of an email pen-pal who is the only person outside this forum who knows the full icky details of what I go through, because it was determined a long time ago that it's impossible to TMI each other.

What he told me is that in a way I'm withholding information from my husband by not giving him the same level of detail, so he can't be on the same page as me about this decision.

He (my husband) knows that I have bad days, that I'm always concerned about being away from a bathroom, etc, etc. but he doesn't know things like - while I've so far never had an accident (my biggest fear) there have been multiple times in recent memory that I've contemplated pooping myself in public and hurrying to a safe place because the urge was so great. (Not exactly an "accident" because I consider that completely out of your control, and in the end I've made it so far, but it's still a traumatizing experience and this was just everyday *shopping*.)

That's the kind of thing that feels like it crosses the TMI line, that he doesn't need to think of when he looks at me but I think I'm going to have to sit down and explain in detail...
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*

Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily

Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)

ElephantPipe
Veteran Member


Date Joined Jun 2009
Total Posts : 1799
   Posted 8/16/2011 8:03 PM (GMT -6)   
I agree with your friend. My boyfriend knows everything, even about my accident after my first scope. Try telling your husband that (slowly, not all at once, lol) and see how he feels then. And you can talk about the options together. I think if I got surgery I'd go with a J-pouch. K-pouch sounds promising but it sounds like it needs some refinement or something.
21yr old female diagnosed with UC-pancolitis in 2005 at age 15
150mg Azathioprine Rowasa nightly7/15-40mg Prednisone
Vitamins D3 & E, turmeric
Little mucus, softish but formedArthritis
Also: asthma, acid reflux, and Raynaud's Syndrome

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2631
   Posted 8/16/2011 8:14 PM (GMT -6)   
If your doctor (GI) opposes surgery but you want it, just go see a top colorectal surgeon or two and do a consult- they are surgeons and will be pro-surgery, and would approve the surgery, as its ultimately your body and your choice. I personally am a surgery-as-last-resort type but we are all in charge of our own body and if you have had enough of this d*mned disease, go for it. But I think you should consider the J-pouch- it seems to be the gold standard.
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb. 
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5302
   Posted 8/16/2011 8:27 PM (GMT -6)   
It is not up to the GI to give the green light for surgery. Surgery is a decision made by the UC patient in consultation with a CR surgeon. Never let your GI tell you what is in your best interest when it comes to choosing between quality of life or surgery.

Sue

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6551
   Posted 8/16/2011 10:39 PM (GMT -6)   
I think you would have to carry around tubes and stuff and I don't know how you would get them clean.
I wasn't like deathly ill I was just tired of wastng my life. It comes down to that,is it worth wasting your life on uc, when you could get it back with any of the surgery options available. As for your husband, maybe you do need to explain it more. Is his problem that you may end up with a bag?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 8/16/2011 11:03 PM (GMT -6)   
Same here. I would go with the J-pouch.

Hoshi~
Regular Member


Date Joined Jan 2011
Total Posts : 189
   Posted 8/16/2011 11:35 PM (GMT -6)   
Well I had the talk with the husband tonight... feel a lot better. I was able to give him some more specifics of what I'm going through without getting into gross detail, which made him see why I'd see surgery as something I want to pursue. He also said he wouldn't think any differently of me if I *did* have an accident or anything. In the end we were thinking similarly but in different terms. For me it's a lot more comforting to think in 3 years (give or take) I can have surgery and be done with it - but if in three years I decide I feel great and don't want it after all, it's not like I've put down deposits or committed myself. On the other hand, saying "wait three years and then see how you feel" feels biased against it, and I don't see surgery as a last resort but as a way to get my life back.


As for the specific type, I'll of course have to do much more extensive research if/when the time comes, but as it is I'm quite sure I don't want a J-pouch. To me it's always looked like the same issues for different reasons (and I guess I can say I'm not truly sick enough to go through surgery for *that* experience). I can't help laughing at carrying extra equipment being the downside to the K since I'm already a virtual pack mule and expect that to just increase after I have kids. My backpack of infinity already carries all my meds, prescription and OTC, toilet paper, wipes, a book or two, notebooks, reusable shopping bags, granola bars, tea, powdered wasabi, a can of coconut milk.... okay those last couple are what made it infamous among my friends, as well as once pulling out some guacamole after a friend said some sounded good.
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*

Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily

Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6551
   Posted 8/17/2011 9:14 AM (GMT -6)   
I'm glad you talked to your husband and it eased your mind, stress over that is the last thing you needed! Sometimes it ishardfor a family member, not because they aren't supportive but because they are scared. Like when I told my grandma, she got realy upset, not because she thought a bag was gros, but she just said she was so upset I had to go throguh it and how she wished she could and would do it for me. You have kids, you know how that is. But she was totally supportive, my son even lived with her during my recovery, and my other family helped a lottoo. It will be good if you can line up some help for your family, if you have children that can't take care of themselves, my son wasn't even 2. If he had had been 10 it wouldn't have mattered as much. Anyway get as much info as you can and get as much settled as you can, so if you do decide on surgery you will be alittle less scared!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Hoshi~
Regular Member


Date Joined Jan 2011
Total Posts : 189
   Posted 8/17/2011 11:33 AM (GMT -6)   
Just to clarify, I don't have children *yet*. Ideally hoping to get pregnant next year. I don't want to have surgery before that because I know it can affect fertility, so it also puts a good timeline out there for me to aim for.

I know that going through recovery with toddler won't be an ideal situation but in the long run it means he or she will grow up with a mother who's healthy not afraid to go out spontaneously or always be noncommittal to plans.
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*

Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily

Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6551
   Posted 8/17/2011 7:00 PM (GMT -6)   
Oh sorry I misunderstood what you wrote! Having uc while pregnant is very scary, all the dangerous drugs teriffied me, I worried every minute. And then having an infant while in the bathroom all the time is really really hard. I should have had surgery beforehand, I wouldn't have missed so much of his life. And yes it can affect fertitly, but many many women have babies after surgery! And the healthier you are, the better off your children will be
And btw babies and kids are crazy! So be prepared :-)
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6625
   Posted 8/18/2011 6:17 AM (GMT -6)   
Actually, I'm pretty sure that the j-pouch surgery affects fertility, but an ileostomy doesn't. I'm sure the k-pouch would affect it too, though. It's my understanding that the formation of the pouch creates scar tissue, therefore affecting fertility, and since there is no pouch formation with an ileostomy, there is no scar tissue to worry about.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 2828
   Posted 8/18/2011 6:41 AM (GMT -6)   
Having j pouch surgery done laparoscopically greatly reduces scar tissue therefore making it more easy to concieve than if you have open surgery.
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5302
   Posted 8/18/2011 7:23 AM (GMT -6)   
I think the best way to get female fertility questions answered is by going to the www.j-pouch.org site and looking on the pregnancy thread.

Sue
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