Hi everyone! I've never posted before, but have been reading through alot of posts and I have to say that I am so intrigued to hear more about the Kpouch/BCIR surgery and life after. As a 21 year old that has struggled with UC for 10 years, finding this site was such a relief! I had no idea that there was support like this out there.

I was diagnosed with UC after having an emergency total colectomy in 2001 when I was 11. I had a conventional Brooke ileostomy for about a year and then got a j-pouch. I had incontinence with the pouch every once in a while, but no significant problems until 2009 when I was 19. I was diagnosed with a presacral abscess due to a leakage in my jpouch. My surgeon went in and did a pouch revision only to have another abcess that was discovered in May of this year after dealing with "pouchitis" (that was actually an abscess). I am now 21 years old and suffering with this problem.

About a month ago I got a temorary loop ileostomy. My surgeon told me that I could have it reconnected to my jpouch, but it's pretty clear to me that chances are, it won't work. My pouch, which is supposed to be muscle tissue is apparently completely scar tissue and very damaged, as is the site where my small intestine is connected to my anus. Another surgeon has suggested creating a whole new pouch, but I have a gut feeling that another jpouch is not the right thing for me---I do not want to risk dealing with the pain, constant incontinence, and terrible abscesses that I dealt with before.

So basically my two options are a permanent Brooke ileostomy or a kpouch/BCIR. I have lived with the Brooke ileostomy before, I am living with it now, and I am confident that I can get through the rest of my life with it if I have to...but I don't want to just "get by," I want to actually live my life. I HATE having the external bag. I would give anything to go to the beach with my girlfriends or wear a tight dress for a night out, but the huge bulge caused by the bag just doesn't allow it(I'd even give anything to be comfortable in anything besides pajamas at this point!). Not to mention the constant fear of the bag leaking. I want to be a normal 21 year old! I want to do what I want, wear what I want, when I want.

I've done my research and I have my heart set on a k-pouch/BCIR. I would really like some feedback from people who have one. What is recovery like post-surgery and how long does it take to feel "normal" again? What are the risks? Can I have kids with this type of pouch? For those of you who have had a jpouch before--how does it compare and how is your life different? Are there any restrictions (besides the obvious diet restrictions)..especially in terms of working, going to school, traveling, intimacy, etc.? Is a kpouch noticeable like a Brooke ileostomy?

I have an appointment with Dr. Beck in New Orleans the beginning of August and I am really looking forward to talking with him about this option. I'd like to go into the appointment knowing everything I can and being as prepared as I can to have this operation if I am a candidate.

Thanks y'all!

Hi KW,
You are 21 and in need a of life free of pain, incontinence and bags...I get it. (been there)
So, the K pouch is made out of your small intestine just like the J pouch but they use an extra 20-30cms of intestine to create a continent valve at the end and bring it out to the skin. The stoma lies flat against the skin, looks like a pink bellybutton or tiny rose ( ) and you use a special tube, lube and eventually a syringe (to irrigate if things aren't flowing right) to empty your pouch; I cover mine with a folded mini kleenex and tape if I feel like it. I keep my kit in a soft $store pencil case in my purse...I takes me 5 mins in and out to empty my pouch when I am good (drink my prune juice/fluids/chew well/avoid certain fiberous veggies)...if not well it can take longer. I empty between 6-12 xs in a 24hr period and only get up in the night if I eat late or go to bed too early.
I eat most everything other than the veggies in my personal no-no list (mushrooms, corn, peas, pineapple...) but other do just fine with them. You just need to chew.
Over the past 30 yrs (I was 18 when I got mine) I have skied, scuba dived, climbed moutains, lifted weights, run, traveled in unmentionable conditions in abysmas places with almost no facilities and have even gone camping and emptied into a hole.
So pretty much anything goes.
I am married but due to disease and pouch related problems I could never carry a baby to term (but I did manage to concieve) but many pouchers have no problems whatsoever other than increased frequency during pregnancy and a good OBS/gyn.
You need a good doc to do this procedure and you have a satelite Cleaveland Clinic right there in south Fla beside the highway (I drive right by it often!)...You also have Palms of Pasedena who do the Bcir not far...so you are spoiled with possibilities with 2 place that are close at hand...
Just as a P.S. I was single for over 20yrs with my k pouch and had few or little problems with dating and the pouch and most were in My head...most of the men in my life couldn't have cared less...it was me who was paranoid.
As for marriage...my nasty still single girlfriends still can't figure out how I (with all of my medical baggage) managed to catch a great guy while they (the perfectly healthy ones!) couldn't!
The pouch won't stop you from living your life any way you choose...
That said...you NEED a very good doc who will have a great team to follow you for the rest of your life and help you if you ever need it.
Hope that this helps.
Sharon

Florida Cleveland Clinic does not do Kocks.
I had my first Kock at age 24 just after I was married. At 29 yrs. old, I gave birth to twins and 6 years later to a daughter. So, 2 pregnancies with a Kock. I was so problem free with my first Kock that I never saw a doctor!
I did eventually have trouble- 24 later my valve was slipping. The surgeon could not repair it and I ended up with an end-ileo.
The Brooke stayed for 2 1/2 yrs anc I was lucky enough to have a second Kpouch constructed.
There are always risks Dr. Beck will discuss them with you. My 2nd Kock developed a fistula and now I have something else but it is still a continent ostomy.

I wear lightweight Tshirts.Usually I wear nursing pads over my stoma, but sometimes I wear a something called Ampatch (a bandage made esp. for stomas). There are certain foods I stay from; this is different for everyone. i drink grape juice with lunch and dinner when I am home to help the stool flow through the catheter.

Just keep reading the previous post topics. have a good informative first doctor visit.

This message has been edited. Last edited by: lesrich1,

For my k-pouch surgery I was 10 days in the hospital and 5 weeks out of work and I went back starting part-time.
Definitively the HARDEST surgery I ever recovered from but I also had proctectomy done at the same time.
As for feeling 'normal' well... that took longer. I would say at 6 months I was pretty comfortable intubating and I was eating more normally though still working through some things. Even at 6 months though I was really glad I did it.
It probably took a full year before I really felt 'normal' again. Its just a huge adjustment, and a big learning curve.
That being said... I am just over 4 years out now. I LOVE my k-pouch. And that is something that kept me going when I was in the beginning stages, scared and stuff, that EVERYONE said that you get used to it and one day its no big deal to stick a tube in your belly.
And they're right.

I cut a nursing pad in half and use that to cover my stoma, secured with tape because I wear low-cut bikini style undies and if I didn't tape it, it would just fall off.

My husband has be awesome and intimacy is great. SO much better than the bag because I'm not self-consious at all with just this little patch on my tummmy.

Right now, I'm back in school. Nursing school actually and its challenging but I've had no problems adjusting eating and emptying schedules with each semester. Easier that j-pouch IMO because I'm not scared that something I eat will send me running for the toilet.

Traveling is fine too, just remember with new carry-on restrictions if you use lube to insert the cath (which most of us do) you will need a small travel sized container. No big deal. I've never intubated in an airplane though - I'm sure it'll happen one of these days!

well I think that about covers your questions

I want to add that I have traveled as far as Russia with my Kock. You eventually get intubating while traveling down to a science.

And as said before, it is a tough surgery to recover from, you have to be committed to working with it till it matures, but it is worth it.

Thank Yall so much!

It's so nice to hear success stories and even the negative side of things. I'm really really looking forward to the freedom Yall have described.

I am very lucky to have a boyfriend that accepts me no matter what and the external bag doesnt bother him at all. The problem is me and how I feel about myself. I think a pouch would really help my self confidence a lot.

Kaydbird- I will be starting nursing school as soon as my health issues have cleared up, I was accepted this fall but I am probably ly going to defer to the spring. It's so great to hear that you had no problems with school...that is one of my biggest fears that it will affect my school because my disease has affected it in the past.

Thank you all so much I feel a lot better after reading yalls posts!

oh...i just love my kp! I was 21 when I got my brooke end ileo.....then converted to a kp at 22. I'm 53 now and even with a few revisions been worth it.

But many folks function fine with the end ileo especially having loving support. It's a big decision with pros and cons.

With the kp, we can be limited in our diet restrictions - such as skins sticking to the cath causing poo to not flow well out of pouch, chew chew chew food into very small parts so they fit through the tiny cath holes. Too much fruit or salad in one day can cause poo to be really thick. The pouch doesn't get obstructions, but it's about poo able to flow out of cath.

And, if you are going to have children, some surgeons suggest converting after. But, members here have had babies with a kp/bcir. The stoma is very low. But sometimes they have to keep the cath in attached to a leg beg during gestation.

Also, if you lost alot of weight, you should try to gain and be at optimal weight. But, over the yrs I've gained 60lbs and thank goodness haven't had issues. Same goes if you are overweight, you should try to loose and get to optimal weight. Most surgeons require this (which is difficult of course).

Alot to consider. Take your time and keep asking questions. There is no rush since you have the temp ileo....

KWilliam;

Have you investigated the BCIR in St. Petersburg FL. since you live in FL? There web site is BCIR.COM.

Ray

Hello!
First, a Kpouch is NOT BCIR. A Kpouch issimilar to a BCIR, in fact the BCIR is a modified Kpouch, but they are not the same.

I have had a BCIR since 2006 and I love it. I have met/talked to people with kpouches, and none of them were happy...I would highly advise you to go BCIR. It is my understanding they have a smaller complication rate than Jpouch or Kpouch. (My Jpouch was HORRIBLE so I'm very biased against them naturally...)

I had UC from age 12-14, had a total colectomy at age 14, and chronic fistulas for 9 years after that. I was pretty much homebound, incontinent daily, and went 25 times per day. I was miserable, in agony, and about to end my life. At age 23 I got the BCIR and it saved my life. I am a different person, people don't recognize me, I am living, back in school, I dated for the first time in my life, I got my life back!

So, Iunderstand what it's like to be so sick so young. For 5 years, I barely left my house. I couldn't leave my house. I could bareloy go to the grocery store or to a coffee shop. And now I can't even remember what it was like to be tied down with pain and incontinence daily. All day,e very day. You deserve somthing better, and you deserve to be happy!

My profile might help you. If you have any BCIR questions feel free to contact me. I've been to both FL and CA ostomy centers, and can tell you my thoughts on both facilities. (They are both great, no probs there. Just pros and cons of the locations)

-Erica

I suspect that there are as many fans of the koch pouch as there are of the BCIR. In fact, as far as complications go, there are some who say that the BCIR surgeons under-report them.

I'm sure my comment will open a can of worms on this site. But I just want you to know that the idea that k-pouches have more problems is not supported by facts.

Both can have problems.

I've had a k-pouch since 2003 and I'm 69 years old, probably older than the ideal candidate for either surgery. I haven't had the complications that have been noted by others despite the fact that post op the pathologist said I had Crohns (which is often a counter indication for any type of continent ileostomy). Further, my surgery at The Cleveland Clinic went well--it was not a horrible experience.

Sorry, but I just had to respond to anyone who rules out a koch pouch.

Best advice is to do your homework and consider all alternatives.

Just wanted to express my agreement with lynne-sa. I also have had a successful KPouch since about the same time you had yours from the sound of it (five years plus now). I have not had any problems and have been bad and not been back for a checkup for the last few years due to family, time and the fact that I am living life again (I am planning on finding my way back to the Cleveland Clinic this winter). I think the facts will bear out that both the BCIR and KPouch have similar success rates as now they are very similar. Ten years ago they were very different. Both surgeries have been modifed as doctors have learned more and now both are very similar in how they are folded and how they work. I have a KPouch, but feel very comfortable going to a BCIR surgeon and feeling confident he would know how to treat any problems I was having and vica versa with the BCIR to KPouch. I think the important point is not which of the two surgeries, but which doctor you use. Opt for the most highly regarded even if it means travel. Its worth it (just make sure you have someone local that can help if there are ever problems).