Is K Pouch an option for horrible uncontrolled Proctitis?

I was diagnosed with Chronic Proctitis (which I think eventually turned into UC).  Anyway, I had an emergency colectomy (after my colon burst) and ended up with a J-Pouch.  Overall, I have had very few issues (short-term pouchitis twice) and my pouch is now 3 years old.

<<I don't want a j pouch cause i just know I'm going to have horrible issues!  So was looking and doing research into the K Pouch.>>

Sorry to hear about your proctitis. How do you know that a j-pouch would still give you problems? Has your surgeon said that? If you get a j-pouch, you'll only have a short piece of rectal cuff. I had pretty horrendous pancolitis and now have a j-pouch. I have a very small rectal cuff, but it hasn't given me any bother so far. 

<< I would be the happiest person alive if i never had to use my bum ever again!>>

I remember feeling like that in the time I had my ileostomy. It was such a relief, given how I was having 20+ urgent bowel movements a day. Now, with the j-pouch, my stool isn't as formed as it was pre-UC, but it's actually quite nice to function pretty normally in that regard - no urgency, no blood, no mucus, that combination is the game changer for me.

i had a j pouch that didn't function properly--pouchitis and SBIO and fissures and so on--which required me to have either a bag or k pouch.  i chose the k and am a happy camper.  that said, i think you should explore the j option more as many people are pleased with it.  they don't happen to frequent this forum as ofter as those of us with problems, so you read a skewed population.  when the j works it is great.  good luck

My j-pouch has worked really well so far (3.5 months in). I go 4-5 times every 24 hours (when I get up at 7, then before lunch, before dinner, and before I go to bed), and usually sleep through the night. I have never had any urgency issues, can hold on for ages if necessary, and apart from a little bit in week 1 I haven't had issues with night-time leakage.

I eat a normal diet, drink coffee and moderate amounts of alcohol - none of which seems to upset my pouch. My stool isn't 'normal' compared to my pre-UC days, but it's much more formed than it was for most of my UC years. Overall I'm delighted with how normal j-pouch life has felt so far.

Sorry to hear that yours had problems, JLH. I'm glad to hear that the k-pouch has worked well though.

Lesandiego, I have a friend who has a j pouch and he still goes to the bathroom up to 8 hours a day! I couldn't even fathom still feeling like this. I have spoken to my doctor and he suggested a j pouch wouldn't be suited to me.. which was why I was looking for another option. Thankyou  for your response.. it's nice to know sometimes it all works out

jlh - that is a huge fear of mine. Having all these surgeries when il end up in the same situation all over again and need more. If i can get it all out of the way then actually live like a semi normal person..

albannach.. also so nice to hear it has worked so well for u.  My friend gets the night time leakage also so another fear of mine.

thabkyou again for your responses 

8 times not 8 hours sorry

I go about 3-5times a day (depends on what I eat).  I'm going to go to Knotts Berry Farm today (about a 10-12 hr. Day) and will probably only need to go twice.  I had night time leakage the first year.  I really think it's more about passing gas with stool while sleeping... then actual leaking.  I just make sure I empty my pouch before bed and lay on my side to expel gas before falling asleep.

<< I have a friend who has a j pouch and he still goes to the bathroom up to 8 hours a day! I couldn't even fathom still feeling like this.>>

For the first month I was going 6-8 times every 24 hours (once in the night, 6-7 times during my waking hours). To be honest, it really didn't feel like a big deal at the time. I still had total control, and no urgency. They were 6-8 bathroom visits where and when it was convenient for me. Emptying the j-pouch takes seconds, so it wasn't a big part of my day.

It's not really comparable to 8 bathroom visits a day with UC, where you're not able to hold on, etc. (I've been there, many times). Life is definitely a bit more convenient now that my frequency is down to 4-5 times a day, but when it was still 8, it 'felt' fine.

I went to the bathroom far more often each day when I had my stoma. I didn't like my bag getting too full, because I didn't want to run the risk of a blow out, and also because it was less comfortable and far more obvious when it had stuff in it. I could have probably left it to fill to the max each time, and only emptied it 4-5 times a day, but then that would have meant large parts of the day with a full bag stuck to my side. So I usually emptied my bag 10 times every 24 hours. 

A full j-pouch feels more comfortable (to me, at least) than a full bag: it doesn't weigh down my side, it doesn't show externally, etc. 

(I should say, I was really happy with my stoma as well - it was so liberating and I seriously thought about keeping it).

I held "it" in for 11 hrs today.  I had a bagle for breakfast,  popcorn around noon, onion rings around 2pm and chicken dinner around 5pm.  then I let "loose".

Wow all these responses are making me think maybe it wouldn't be so bad! Maybe I can convince the docs that I should give t a go. Thanks everybody 

Hi Chute,

Well, it is such a sad and torturous story and so terribly familiar.

Yes, I understand that you never want to have to pop out of the chute again...that that area of your body is a huge source of pain and has been forever.

I came from a different place than most of the people here. 

I had undiagnosed UC my whole childhood and adolescence...the famous cycle of bloody diarrhea, constipation, cramping, pain and in my case, no anal sphincter...so uncontrollable incontinence.

I tried 1/2dz different surgeries. None worked. 1/2dz stints in ER to isolation in the hospital for 'gastroenteritis'...no one ever gave me a diagnosis. I lived off of so many drugs it wasn't funny.  (My mom was a very well known and liked surgical nurse with lots of pull...so no diagnosis...she thought that it would prevent me from finding a husband if something was put on paper).

By 18 I was inconsolable...I couldn't imagine a life lived housebound and in horrendous pain. So I ended up in the office of the 1st K pouch surgeon in Canada...he offered me 12 kinds of ileostomies...From bags to plugs...And I refused them all (I had had a colostomy at age 2 that was closed a year later)...

He refused me for 3 months (it was the human trial stage, I was #13) until I threatened him (I was a forceful kid) and begged and pleaded for my life...a life. 

After going through a board of surgeon and a psy I was accepted. He still refused to do a 1 step and it ended up being a 3 step. 

Although it was a long war with endless battles I have never regretted it. 

Your surgeon might fear that your UC is so low down onto the cuff that you will not have any control...may fear that you will end up with chronic cuffitis that would compromise your healing or lifestyle further on. 

Talk to your surgeon, ask him why he doesn't think that a j pouch would be a good fix...then discuss your options...what a k pouch entails...it is not the easiest road...it is a harder surgery...it has more risks of complication and the valve is a very fragile thing...so they will push 99/100 times for the easy fixes like end ileos and j pouches.

K pouches are orphan surgeries. There are so few surgeons who do them that they do not even know about them sometimes or offer them if they don't do them themselves. 

You become and Edsel...no spare parts...no mechanics to do the simple upkeep...so it takes courage to say yes and go for it.

Think hard first. I do not regret my choice because I didn't have one...j pouches didn't exist back then and I had no sphincter anyway.

Good luck and keep us posted.

Sharon

The manner in which you've suffered with your proctitis is very similar to what I endured for many years with Crohns.  Unlike most individuals with Crohns, whose disease affects the small intestines, my disease was limited to the the lower portion of the large intestines and the rectum.  One doctor even characterized it as Crohns colitis; mixing both IBDs together.  Like you, enemas and suppositories worked for a brief period of time but I was constantly on and off prednisone to relieve my symptoms.  Towards the few years prior to my surgery, my rectal disease was so out of control that I would repeatedly get rectal abcesses.  When I finally just could not endure any more pain, bleeding and running to the bathroom, I succumbed to the idea of surgery.  I KNEW that I did not want a colostomy bag so I sought out other options.  Fortunately, I was referred to a surgeon who had done numerous K pouch surgeries.  As someone stated earlier, the recovery period from the surgery was horrendous but I can truly say that the K pouch has given me my life back again.  Its been six years since surgery and I have had some minor issues but I would do it all over again even now knowing all that it entails.  I hope that my story helps in some way. 

Thank you again so much for your responses!

My consultant and ibd nurse are discussing surgery options!

Can you elaborate on how the recovery was horrendous for your k pouch tooth fairy? did you just have 1 surgery? i know recovery is quite slow with the k pouch sometimes, and you need to take it easy for longer but how long until you were somewhat functional again?

I too am so happy with my KPouch after numerous surgeries & failures with my j-pouch. Although an ostomy was the 'end of the road' with my UC, I did not want it and found a surgeon at Cleveland Clinic to do the Kpouch. I would add to tooth fairys post the following:

healing is horrendous because your entire abdominal area is pain. You also have a catheter in for a month or so to let your valve/pouch heal. 

The Kpouch is a commitment, it doesn't solve our problems of a j-pouch or ostomy. It has its own set of challenges & I was a bit naive about it at first. 

I have had my Kpouch 1 year and had a valve repair already. I now suffer from pouchitis since my repair and overall trying to get back to good health after having  bleeding ulcers in my pouch. And yes, this would happen whether I had a Kpouch or not. But I am cognizant that issues/repairs 'usually' equal surgery.  I don't want my valve to be affected- that is what makes my awesome Kpouch continent. 

You will know what's best once you are fully informed by the experts. I found this forum to be helpful to learn the clinical & non-clinical aspects of the situation. Meaning, what the experts don't really tell you because they haven't experienced it. 

So read this forum, research options, find/trust your expert and you will determine your next step. All the best to you- Kara

Chute, 

I have had my k pouch done and redone about 10xs in all over 37yrs...not bad at all.

I can only say that it effects your whole body...but that you heal a lot quicker these days than 37yrs ago...Then we did 1 month in hospital, now it is 1 week...they manage the pain so much better too...they get you up within 24hrs, have you walking hallways by day 3 and as long as you have no fever or ileus (the dreaded ileus is when your bowel refuses to wake up after the anesthetic...mine didn't try to pull that stunt until surgery 6...so it is not systematic) then you go home and learn to care for yourself until the end of the month.

It is scary but not really painful, just a pain. 

You have an indwelling tube that is either taped in or held in with a belt appliance or a flange (sort of a plastic ring) and attached to a bag to collect your output...just empty the bag whenever needed and you are fine...no chunky food, chew well and keep hydrated and walk as much as possible and everything will be fine.

If your body is essentially healthy then you should be fine.

I found that a good checklist and planning ahead of time made my recovery a lot easier.

I made sure that all of my shopping was done, my house was clean, my sheets changed, my groceries all easily accessible without bending or stretching or having to carry them across a room...and friends, family, fast food joints, doctors and pharmacies were all on speed dial, that I had fresh batteries in my tv channel changer and that all of my laundry was done. 

Pain is pain and it is transient...you get past it...the boredom is what gets you.

I had friends come by just to check on me from time to time and a couple of phone calls made the time pass quickly.

The k pouch intubation is a learning curve...it is a bit scary at first but if you have a good stoma nurse, a few people who you can call in an emergency and some patients then you will be just fine. 

Plus we are all here.

Sharon

Chute, 

I agree with everything SKN69 and Kara said about the recovery period after the surgery for my K pouch.  I was in the hospital for 11 days and then took a leave of absence from work for 2 months.  In the beginning when the pouch was trying to heal; while at the same time trying to increase in how much it can hold, I had a lot of discomfort a few hours after eating.  Over time as the pouch was able to accommodate more, my pain went away.  My pouch is 6 years old and I have not had any other surgeries. Unfortunately, I too have episodes of pouchitis which I typically treat with antibiotics.  Just last week my GI Doc scoped the pouch and noticed signs of Crohns in the pouch so we have decided to try Humira.  Hopefully, not only will it help the inflammation in the pouch but my Crohns related arthritis as well.  Even with this minor setback, I am still happier with the K pouch than I would have been suffering with the rectal issues. 

Well.. here we are. I have failed vedoluzimab and infliximab and I have been referred to a surgeon... they want me off the drugs cause I'm having some complications and it's time for the surgery and to get this inflammation away...

my Gi had told me I'm not a candidate for j-pouch and my surgeon is a illeostomy guy. But there's a surgeon in brisbane Australia  who does the k-pouch so I'm getting a referral next week to see him too. Crazy times..

thanks for all ur replies and for putting my mind at ease a bit. Im pretty nervous cause I already have a trip planned to the Uk in may for a month... so I guess whatever happens, happens. But fingers gets crossed whatever they want to do won't interrupt my plans too much. It's not a terribly elaborate adventurous month planned... just more so visiting family.

FIngers crossed anyhow... it's gonna be so nice not needing  the toilet every 20mins!

Good luck...I hope that things work out for you and that you get the surgery that you need.

Keep us posted on the outcome.

Sharon

Chute

 I too used to try to plan vacations around surgeries and learn the hard way. Think of your health first, get better and then you will have a more relaxing time on vacation    Not saying you can't  recover in time, but surgery takes the shit out of you, both literally and figuratively. Getting in best shape possible before surgery is essential.

In the meantime have you looked into diet as a means of controlling inflamation/G.I.? No sugars and low carbs will make a  difference. Check out the breaking the vicious cycle, which you can get off the web.

So sorry you're going through this. Tough membership club to join! We are here for support   J

Chute, I saw that you mentioned seeing a surgeon in brisbane Australia who does the k-pouch. Do you mind me asking who they are as i am also in Brisbane and looking into surgeon that do k pouch. 

Thanks mikayla

I actually saw a surgeon called Stephen Allison at tthe Greenslopes Hospital. He seemed nice enough but I need to get well so have to have an illeostomy first for at least 6 months. Then I can decide where to next... and also with this option I will be well and truly better for my UK trip!

counting down the days (12 of them!)

Do you have private healh Mikayla?

There are a couple of surgeons also in Melbourne who will do the K pouch.. but nobody else in Aus.

if you want to go see dr Allison, call his rooms and get a referral with his name on ur and ur all good to go!

good luck

Thanks Sharon.. I'm ready for this!

Thanks  J too.. I have tried diets and all the meds I can. Nothing has helped unfortunately. I have been functioning as best as I can for months thinking this is how it is... but now I have hope that It actually can be better than this!

Chute, What a small world. He has been my surgeon for 4 years now. He is the most amazing doctor out there. Truly cares for his patient and going out of his way to make patient care his first priory!!! I have had my 3 part J pouch surgery done through him and we talked briefly about k pouch but deiced the J pouch. I have not seen him in 15 month but now having problems again, so am going back to him next week to see him but just wondered if other in brisbane had done the K pouch. I am so glad to here that he atcherley dose the K pouch. You are in excellent hand with him i assure you and the ward that all his patients go to have the most amazing nursing. I wish you all the best with your surgery and recovery!! 

Hey Chute, I hope you're doing well. I don't think I've seen an update on here about how you went. Probably resting and healing. Fingers crossed all went well.

I sent Mikayla a PM, and was about to send you one too but thought I may as well just post this here, since it's more of a general interest for me in the availability of the K-Pouch. I come from a background of a failed J-Pouch, and currently have a perm ileo, which as I mentioned to Mikayla, isn't so permanent when it comes to the K Pouch/BCIR, and am still interested in possibly going down the K-Pouch road one day, or the BCIR road for that matter(but that's a financial pipedream at this point.. lol) I can tell you that one of the surgeons in Melbourne who did K-Pouches has retired, but he may not have been on your radar anyway.. It sounds positive where you are going right now anyway so will hope for the best for you with that path....

So yeah, very interested in how both of you go with your K-Pouch journeys. I'm a QLDer too, so, was pretty surprised when I saw this thread, to be honest.

Later,

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