Since nobody has replied I figure I would.

Are you doing better?

Hi Aggie,
I just read your post (been off of the grid for a bit) and am concerned...sounds like you might have 3 small problems: the old stoma site opening up...not a biggie...certain surgeons don't even bother to close them but just leave them to heal on their own because they can very easily form fluids under them and need to drain...so allow it to drain, keep it clean and as dry as possible and as it heals you may wish to bring the edges together with steri strips...to make for a neater scar in the end...
the water blister around the stitch is normal (at least for me) happened every time that they stitched my tube in...(now they use a flange/rubber band/belt gizmo that is better but has its limits too but at least it doesn't hurt)...just keep it clean and dry...
As for the mainline incision...well you seem to have a triple header going on with weepy wounds, building fluids and infection...you may have fluid pockets behind that too and it will either leak out slowly or it may just open up a bit (or more) and drain completely...walking around will not make it worse or better, if it has to open up, it just will...again, keep it clean and dry...cover it with clean gauze, change it regulary and watch out for fevers...how is your pouch output doing? Keep it liquidy and avoid fibers and chunky foods so that you don't block the tube and just lay back and heal...keep us posted on the progress
Sharon

After going through a valve revision for my Koch pouch in Feb., and coming home with an infection and opened incision that JUST closed in June - I have now returned to the land of leaks. This is what I went into the surgery to repair in the first place! Very upset and searching for answers. Also had both ovaries & tubes removed at the time of the valve revision and pouch redone.
Had my redone pouch & valve scoped last monday. I was told it looks beautiful. No adhesions, blockages or fistulas. Brought the report and pictures to my surgeon. He called the GI dr. and also checked the stoma with a catheter to see how it was going in (fine). He's surprised and has no answers either. Had watery stool leaks & gas leaks every day and I'm emptying every 2-3 hours again to avoid accidents. I was advised to get "pure methyl cellulose to add to my diet to keep my stool firm & watch what I eat - similar to an IBS diet. I was told that with a K-pouch that doctors don't even concern themselves with gas leaks. So I handed the dr. a picture of my stained shorts to help him visualize my point. When I went to the pharmacist to see about getting pure methyl cellulose I got concerned with the chance of blockages. RX won't give it to me without first talking to surgeon & getting a prescription. My stool is not always watery (mostly in the morning after taking meds or after eating or not eating for awhile) but it is a hit or miss situation. I'm back to square one but worse because since the stoma was moved I can't feel a leak happening. The other disappointment is the dent left from the incision healing from the inside after it reopened post-op. Trying hard to keep my head straight and work on fixing things and not fall into major funk of self pity.

Hi Aggie,
I am so sorry that you are back on the roller coaster again with the leaks...there could be many causes other than valve slippage or rips etc...you may have a functional shift in your abdominal muscle structure, meaning either an incisional hernia caused by or following the abdominal scar healing funkily or a peristomal hernia (around the stoma) that is shifting the position of the stoma so that it does not close properly or is pulling at an funny angel...third possibility is that your pouch might be 'down' or slipped off of the abdominal wall...so that the pouch is no longer anchored to the abdomen other than by the stoma which in turn gets pulled and pops open...all 3 are easy fixes through laporoscopic surgery and what I wish most for you is an easy fix right now...they need to do an opacification or contrast study with you laying flat, on your side, sitting and standing up...you also need to be able to chart your leaks...when in the day (before or after meals?), in what position you were when they happened (mine were only when I was overfull and squatting down to pick something up, so squat and lean forward...that told the doc that my pouch was down and twisted)...they may, in spite of it all not see the problem and therefore need to look closer but you need to get them to start with that.
Hope that this helps
Sharon

Thanks Sharon, Your information will be very helpful for my next visit to see the surgeon. I'm keeping a chart of leaks and now adding the position I'm in too. Not finding a pattern yet but I'm hopeful and determined to get this fixed once and for all.

Aggie,
Twists can be very difficult to diagnose and tiny hernias can too...they did every exam in the book on me, MRI, Cat Scan, x-rays, opacification etc but nothing showed until my surgeon went in through laporoscopy and saw the hernia himself... and fixed it...he did mesh and it worked quite well...after all of the major surgery for the smallest problem it was nice to have a minor surgery for a major one...do not let them give up until they find what is wrong.
Sharon

Thanks so much - I'm keeping notes on all of this. You're so right, it can only get better!

Aggie,
I had a full day of leaks yesterday...started after a water aerobics class and continued until later last night...seems that my pouch flopped up and over during an over strenuous movement...everything that went in poured out so I kept emptying every chance I got ( luck would have it that I was out all day)...it seems to have flopped back into place today because I have very liquid output and no leaks...a twisted or flopped over pouch can do that to you...make sure that your doc knows it when he is examining you.
It reminded my how very stressful it all is.
When I am in leak mode I stick a full panty liner onto the inside of my undies and then add a folded up Kleenex or paper towel over the stoma to absorb the leakage...the panty line protects my clothing from those nasty stains and I just throw out the soiled paper towel as needed.
Don't forget to keep yourself clean, dry and bacteria free or you will get red-rashy burn on and around your stoma and tummy.
Sharon

Sharon,
Your day sounds as bad as mine have been. I'm glad things straightened out. Amazing! I have been doing the same with the panty liners for leak protection. Still soaking my clothing. Unlike before surgery, I'm not able to feel it coming on till it's too late. Doing a lot of laundry & showers and staying close to home or not eating when I go out. Trying like hell not to let this get me down.

Hi I just saw your post. I was wondering how you are doing with your k pouch. I'm using the same surgeon. Just finished my third surgery for a fistula in August. I'm still leaking all over and probably heading for a fourth surgery because it can't stay like this. Second surgery was a valve revision. 3 surgeries since June 2013. Leslie

I am reading all of your answer to Angie story and much information. sometimes I wonder if the success rate they say is real or based on what criteria. However , surgeon must continue to look for real solution to all IBD patient and post-surgery...

For leakage, I used to buy the breast feeding pad...they absorb lots of liquid...you my want to try it. there are many brands, usually the most expensive works better or are larger...

After reading all I worry even more about my state and what will I do. I have to go see back the specialist. Also I hear of no one with stone in the pouch... I am looking for way other than ultrasound (I heard it has many side effect on kidney and high blood pressure after)... I wonder if this is not increasing the problem of stenosis of the stoma and all. But Dr are so busy, that I have lots of difficulty being able to TALK to surgeon about option etc... I am frustrated, even discussing with department team... I am not in Ontario so for me to go there...and not have time with Dr to evaluate all is demoralising. I have much difficulty pulling myself up morally as ever in my life.

Since I was young I went through many surgery and continued to university and worked my way but now I am out of the system and I have no physical and morale strength in me. I cry regularly, I feel Dr don,t care and a surgery is highly risky and have no guarantee on anything anymore...beside I am scared of dying on the next one...so I want to evitate. I wished I could see 2 different Dr and have their full evaluation and opinion...

Anyhow, I think people with this illness must certainly unherite paradise in the other world because the suffering is so immongous...sorry for my French English typo...

Anyhow' don't give up, hope is essential to survival and things can change and I do believe in miracle and prayer!

Hi, To all my fellow pouchers who responded to my last entry, It's been a year and eight months since my valve revision,reconstructed pouch and removal of my tubes & ovaries. The surgery done at Mt. Sini Hospital in NYC by Dr. Bauer was in their opinion a success. Unfortunately my opinion differs. I'm living with a "****ty" quality of life with leaks worse than before this surgery. I do use the breast pads along with a cut mini pad and a cotton round and t.p. and 3 pieces of paper tape. I sleep with a washcloth on top of all this too. I was continent for a bit more than 2 months after the surgery. From than on the leakage returned... gas, watery outflow, and regulayr poo too. I had 2 scopeings and a barium contrast study done sitting, standing and on my side by 2 other specialists who reported no leakage cause found. While at the office of these specialists, both doctors witnesses leakage but did not see where it was coming from. Dr.Bauer also filled my pouch with water and it did not leak while I was on the examination table. Here's my problem that I told to my surgeon...First, the camera used with the scope may have misses another fistula and the barium may be too thick to show a fistula. I do not have a medical degree but, the fact that the surgeon was not looking at my test results himself nor did he consult with his associates before throwing his hands up bothered me to tears. I haven't seen another doctor about this problem since last year when I was told that my doctor would not operate blindly ..without definitely seeing where the problem was. I had such a bad experience with the anesthesia and recovery ...my incision stayed open for three months and got infected and left a huge scar...I'm very much afraid to go through more of the same with no guarantee it will be any better than it is now.

I am so sorry Aggie,
This is such a nightmare!I am so terribly sorry that no one is listening to you. When having serious leaks I used cut up maxi pads or diapers...just cut down to size and held them in with the stretchy unddies.
Is it possible, since the valve was actually continent for 2 months, that your pouch slipped off of the abdominal wall and is pulling the valve open, causing leaks in certain positions?
It happened to me after the 1st surgery and then again 3 other times...each time the valve is actually healthy but is being stressed so that either I cannot intubate properly (my first sign) or leakage or both.
It is hard to see during most exams unless you are looking for it...and is a rather quick fix.
My original French surgeon didn't believe me and left me leaky, in pain and damaging my valve because he wouldn't listen.
I finally got someone else to look, figured it out and fixed it with laporoscopy...a first.
Now I am having it done again...the sutures tend to reabsorb at around 6-8 weeks and they usually don't use permanent ones because of the risk of fistulas, infections or rejection but I don't heal so once absorbed my pouch slips.
You may wish to throw this idea out to him and see what he says.
It might not be this but do not give up the good fight...you deseve to be healthy.
Sharon

I have not been here for a very long time. Let me start by saying that I am very sorry to hear of your challenges Aggie. I also have been living like it seems at least some others ( with a k pouch that has begun to leak more over the years). It has been over 18 years since my K pouch and before that I had a ileostomy for 10 years. I am almost 54. My initial surgeon that created my K Pouch passed away several years ago now it seems. I had went back in and saw the Surgeon that was working with him and as I understand it was also learning from him. Over the last 5 years that surgeon suddenly became very much distant and not acting on my needs. It was more of a disbelief that I had/have an issue that needs to be dealt with or did not want to be bothered. It is like what another member said in that all looks good in my pouch. But there are times when it will leak a lot. So much that it is though there is nothing causing any resistance at all. Then other times it seems as though I am just fine. it does not seem to matter if I have a more liquid or thicker consistency. I have never had a revision. So over the years I have gained about 10 - 20 lbs but nothing dramatic. I am now trying to find a new surgeon as there has only been one in the state I live and for reasons I am not aware of there are issues more involved with that individual and it just does not make since to set myself up for a stressful procedure with someone that is not working with me anyway. So the GI Surgeon in the Hospital/insurance group that I am in now has offered to have his colleague assist him in "doing the operation", He is a good surgeon I have no doubt but he has only worked on a k pouch twice and both with the supervision of the surgeon that was/is not only thoroughly trained but has done many of these procedures for decades. Today I got this report after I called being put off for the last few months..When I was directed to contact my primary to help refer to a qualified surgeon ( it may have to be in California or Washington...still not sure who to go to ) but the response I got from my general physician today was. " I would have Dr. "......" operate on me or any of my family. So you can imagine I feel suddenly misunderstood and also do not want to lose repertoire with my primary care doctor. I have made an appointment so I can explain to him that I am not comfortable having a revision done by someone that has only had 2 cases and admittedly in conversation has told me he does not believe this procedure is what a responsible doctor would do this day and age. "the new generation of colorectal surgeons don't do these operations for the most part." but as I mentioned I have had this for almost 20 years now and 10 years before that they had removed not only the large colon but the entire rectum as it was not in good shape..And this is true. I know that I did have issues even in my teens though being quite unaware of any of these things at that age I did not know what was going on. So I am even more stressed out than usual. I am online doing my own research and trying to read all I can on reasons for leakage and what is involved in valve revisions. And at the same time I am trying to not be shamed into allowing someone that is truly a good surgeon but not in this procedure just "make it better than it is now" I hope that members here would also understand my feeling in that this is very specialized and it is rough enough just getting the right connection with a well versed surgeon that already specializes in this surgery..and that is a proponent of it's benefits. I had to get this out and as it also has to do with what others on this thread have and may be going through I thought I would start here. I feel alone..I am alone, and when doctors and other professionals become unsupportive, impatient or even worse, just ignore you...that is what has happened for the last 5 years. And today in the present climate I am feeling the pressure. Thanks or reading. I know it was long but I have been away for some time. I really hope that in this and as it progresses it will also help others. I know there is a good resolution..just need to get the professionals to get realistic and a bit more reasonable here. Thank You.

Please be advised that there is a very qualified surgeon in LA California. His name is Dr. Don Schiller. He has plenty of experience with Koch/BCIR revisions and I am sure he would be willing to help you. His office number is (310) 204-4565.

Ray

Thanks for the referral. It is much appreciated. I just saw this a little bit ago and glad that there are people here that are involved. It makes all the difference.

Aggie,
I am having surgery next week to put the pouch back onto the wall. It slipped sometime between 2008 (the last big pouch surgery and 2010 when the leaks and pain started. I have been living with pouch twists (causes major blockages until I can 'untwist' using a yoga ball and rolling around on it or some other miracle).
Saw the French laporoscopic surgeon on the 25th and he agreed that it is 'now or never' due to his age (over 70) and the probability that I am damaging the valve daily.
He will take down any adhesions that he finds (luckily I don't make many) and then staple, stitch or attach the pouch back onto the wall (possibly with a double mesh reinforcement) after untwisting it and finding a position that is lower but not too low.
I just took a look at the films from the opacifications that were taken in 2006, 2008 and 2012.
In 2008 the pouch was anchored and sitting up slightly to the middle of the abdomen about 3 inches below the bellybutton (picture taken with me laying on my back), and nowhere near my hipbone.
When standing the bottom of it was about an inch away from the hipbone.
In 2012 while laying down in was pushing against the hipbone and when standing it was completely down in my basin about an inch away from sitting at the bottom. NO wonder I am in so much pain. It must really be crushing things when full. (I rarely allow it to fill up completely).
He has the old films and new ones and will 'liberate it' and raise it up to just below its original position...at least that is the plan.
Am starting to panic here...What happens if there is a problem or he cannot liberate it? What happens if it has glued itself to other organs?
Crap! Scared.
Sharon

To WillLive4Ever - You Are Not Alone! I feel like we've lived parallel lives - similar surgeries at similar times and both of our original surgeons have died. This is not an easy journey and if not for the support of this forum and the K-Pouchers on Facebook, I would have really felt lost. I've been through so much, but when I hear others talk of their challenges and their strength to get through it all I am inspired. They are my heroes and I will not let them down. So, write as much as you need to get your story out, because there are so many of us out there who really care. My last visit to the doctor was in December 2014. I went for another pouch scope and evaluation because of my leakage. I feel the scope was very thorough but still no definitive cause of my problem was seen. The surgeon spoke with the GI dr. who did the scope and was very concerned about this effecting my quality of life. He suggested we go back into surgery and look and see if there is a fistula that may not be showing up on my tests that he missed during my last surgery. He also suggested if he could not find anything wrong that he would revert the pouch back to a traditional ostomy. I told him that's not what I want. He told me I shouldn't worry because there's a 50/50 chance he'll find something and besides you're 59, already married and you have a very supportive husband. My thoughts - Wrong answer. I want my pouch and I want it fixed and I want my life back.

Aggie,
Have you had an opacification yet?
I had my radiologist do mine in 5 stages:
1 just dribble a couple drops of the opac solution into the valve an visualize just the valve that way (they found a divit in mine due to my constantly pushing the tube in to the side of the valve, not tragic as long as I stop doing it.
2 slowly filling the pouch and filming.
3 Turning me on my sides, right and left, to see how the pouch rolls, turns etc
4 Sitting up on the table in 'normal position' to see where the pouch/valve sit
5 Standing up, right and left sides too to see how low it was sitting when full (that is how we found that my pouch was down and crushing my organs below.
Finally he took shots with the pouch emptying out...those pictures did a better job of diagnosising then an open surgery (practically).
You may wish to try it.
hope this helps,
Sharon

Thanks for the advice, Sharon, but yes, I had this test done and as advised by other pouchers I insisted in multiple positions for the test. I was told by the surgeon that it would be a waste of time, but prayed to God that he was wrong. I went into the test and found the Radiologist & his assistant totally confused about what they were doing. I had a bulb syringe with me and I inserted the catheter and filled the pouch from the syringe myself with the contrast fluid. I insisted on side views, sitting and standing for the test also. The valve leaked - the radiologist saw it but could not see where it was coming from. Pictures & a report were sent to the surgeon who brushed them aside and if I wasted my time and his because the report from the Radiologist said he found nothing even though I was leaking. To add insult to injury I was charged a ridiculous fee for what I myself did while the staff watched. It took over a year for me to go back to my dr. who is THE"expert" - K Pouch Surgeon in NYC. I think the sadness, stress, frustration and anger is probably the cause of much of my problems. Most of the time my output is yellow and watery no matter what I eat or how much thickener I add to my food. Of course this leaks a lot.

Darn Aggie,
What do they say is causing the yellow, leaky out put? Sounds like gastric juices to me.
Could you have c-diff or any other sort of bacterial infection? Some horrid mircrobe, germ or bug?
You need to find out what is giving you that output which must have you exhausted, dehydrated and in pain on some level...Does the output burn you?
Any specific odour?
Sorry for the questions but I can ask a couple of my doctors if they know anything that may cause that. Do you still have your galbladder?
If so do you have any back pain? Nausea? Headaches?
Just trying to get a handle on this...would you consider a long-distance consult with another k pouch surgeon?
Sharon

Hi Sharon, First I want to apologize for not asking how you are feeling. I saw that you just had additional surgery in december and I hope you are feeling better. Thanks for responding to my latest rant. I do still have my gallbladder and yes I think the yellow stuff is gastric juices flowing into & out of my pouch. I mentioned this to the dr. and must not have been heard or it wasn't of any concern. It seems to happen almost every day when I've gone over 4 hours without food or drink (like at breakfast - even though I empty before eating). Certain foods & liquids can trigger this too also stress seems to add to this and than most times I haven't a clue what caused it. For this reason I am looking for a gastroenterologist (not necessarily another surgeon yet) to figure this out. It could be one of the many medications I take or any number of reasons. All I know is I'm in a catch 22 here. If I want to leave the house, I fast - and this will give me about 4 hours before I have problems - and the longer I fast the longer the problem lasts. Life doesn't stop - travel is often necessary even just to go to the dr.'s. That alone is 5 hours round trip by car which we often have to resolve by getting a hotel. I dehydrate often which is crazy. Muscle spasms, leg cramps, racing heartbeat, wobbly and tired but no real pain (Just some discomfort on my left side under my ribs). No fever or unusual odor here but when I empty it either begins or ends with yellow bile like output that sometimes goes on & on for a long time. I take Nexium for acid reflux & I'm now trying Protonix instead. Without the proton pump inhibitor I'm worse. Nothing wants to stay inside me for very long. I also take a Whole Food supplement and a food thickener. I just want to get out of the bathroom and be able to relax when I'm not there.

Thanks for asking Aggie,
I am doing better/worse.
Better in the sense that the strangled loop that was causing the blocages is open up and flowing (occasional pain but probably due to residual swelling), the hernia is better too and the pouch is settling (kind of like a new house!).
But the lower hip/back pain is back. I think that it was the bed-rest + tramadol that had the pain in check and since I stopped taking it and went back to work (carrying a heavy backpack daily for miles) the pain feels double.
The stuff that you describe sounds terribly galbladder-ish.
It was very similar in that horrible cycle of eating and being locked into the house, not eating and running bile.
They finally removed my galbladder 2yrs ago and what a difference!
I constantly had a 'knife in my back' pain that was the galbladder backing up...I waited litterally years to have it removed (too much going on elsewhere and then never want to risk the cross contamination of removing it during pouch surgery). When it finally came out it weighed 1 Kg and was filled with 1 litre of black bile and a huge olive-like stone. It nearly ruptured.
Some of the awful side-effects were exhaustion, nausea, yellow bile, pouch running, acid burn around the stoma, sleeplessness, heartburn...
By the way, nothing really showed in most of the ultra sounds other than a slightly enlarged galbladder up until 1 months prior to the surgery (when he booked it as an emergency procedure).
Not all pouch surgeons deal with this sort of thing...so you need either a general surgeon of a G.I.
Keep me posted. By the way, I always found that bananas helped me but that's just me.
Sharon

Thanks for the info, Sharon. I finally found a G.P. who I'll be seeing in April. Maybe from there I can get a referral for a G.I. specialist to check the gallbladder. This is definitely something worth looking into. I hope you feel better soon. (Bananas are good, digestion wise, but made me gassy)

the probiotics help with the gas...
Sharon

Been using probiotics - maybe I'll give bananas a try again - for the cramping. Thanks for the good advice.

Hi,

I wanted to just make a quick post to all and especially "Ray" as he referred me to Dr.Schiller. I have just returned home after a full Pouch replacement. ( the valve revision was needed but once they had me opened up it was obvious I needed a full replacement) This is just one of the many reasons I wanted a experienced surgeon, and Dr. Schiller is indeed #1 for my situation. I was in the hospital for just less than 3 weeks. Because of the massive antibiotics and such I ended up needing cipro and flagyl (which I am still taking). I live alone so it is a bit challenging sometimes to fix my meals but have been keeping a minimal nourishment. I have a friend that is bringing me a few cans of ensure to hopefully fill the gap a bit. But my pouch is solid. definitely no leaking and I am excited to see how it heals up on the outside. I am really so thankful to you Ray for suggesting Dr.Schiller. His Staff and all the people there are really a great team. I will post later but just wanted to get this up while I had some energy. Thanks All.

Will

Your very welcome Will. Keep in touch about your progress.

 

Ray

"""Hi Will, I'm so happy for you! So did Dr. Schiller make you a new K Pouch or a BCIR? Debbie"""

 

 

Yes Debbie, Dr.Schiller did a full replacement of my pouch that was made about 20 years ago and I am starting fresh. It is the BCIR Barnett as I understand it. Dr. Schiller actually worked with Dr. Barnett so I am very happy to have this part of me made well and of course am tired and still feeling all the healing pains. There was another patient there as well that also was receiving a new pouch for the first time. A very great Doctor and wonderful Staff. And anyone that even spoke with Tillie on the phone knows what treasure she is. Thanks All.