I know I haven't had my pouch removed, but thought I would try to help.

IPS is a tricky one. Some form of ileostomy should take care of your incontinence, but maybe not the IPS/IBS symptoms. An end ileostomy would probably relieve those symptoms better than the continent ileostomy because of the lack of a reservoir. My understanding is that if the stool does not "sit around" in a pouch, there is less risk of bacterial overgrowth leading to gas and other IBS symptoms.

You may want to read Liz's FODMAP diet thread and see if there is something there that might help you before you take the leap to scrap your pouch. She did have her pouch removed and is having digestive problems. Your symptoms sound pretty terrible and I probably would be having the same discussion with myself.
http://j-pouch.org/eve/forums/...1071921/m/9287054136

Jan

Got rid of my pouch for a perm end ileo in 2001 and 2003 (pouch disconnected in 2001, removed 2003). I considered BCIR and eliminated it as an option because of having to travel if there were issues. Also eliminated k-pouch since you can still get pouchitis (which was my problem) and because it is less known throughout the world. We like to travel and I wanted the security of knowing that anywhere we went drs would know what an ileostomy was.

Have had zero GI issues since pouch came out. Have also conceived and delivered two kids. Love, love, love my ileo and my life since. I eat anything, take only immodium at night when I remember, can sleep through the night...

Please let me know if you have questions. Pouch removal was the best decision I ever made for myself.

Thanks so much for the advice. Jan, I am checking on the link that you gave. Jill, I will probably be contacting you. I know this may sound weird, but I am turning 65 and I worry that one day I may end up in a nursing home. Do I really think that someone will be willing to help me keep clean enough not to have all kinds of skin irritations? There is not a day that goes by that I do not leak at least a little. I even have to weigh this eventuality in making my decision.

Wow! I'm so sorry you're going through all of that.

I think if I were in your shoes I'd opt for a permanent end ileo. I had a 3-step procedure so got to experience 3 different plumbing options. The end ileo really allowed me to do anything I wanted.

There are several people here who've gone to an end ileo while retaining their j-pouch but that doesn't seem like it would be the best option in your case.

kathy

There is a good surgeon that works where my son does. My son is a nurse and works in the GI lab in the hospital so he really knows who the good ones are. Thanks all, and keep responding. I really am weighing all the options.

I agree with Kathy. My loop is OK and I manage with it but the end was really "easy breezy".

Skin irritation can definitely be scary. From an ileostomy standpoint, standard ileostomies/colostomies are the most common diversions particularly in nursing homes, so if you're concerned about receiving adequate care as you get older, I would lean towards that as opposed to something like a BCIR. I don't really know what I'm talking about, but that's my thought process.

I agree. A mature end ileostomy would be much easier for a nursing home to deal with than a K pouch or a BCIR, if that's your long term worry. If you'd ever be bedridden, and stool was liquidy, there are ostomy bags that allow connections to drainage bags, so your appliance "blowing up" with stool and gas wouldn't happen, as it'd have a larger bag to gravity drain to, if need be.

I agree too - if your concern is long term care, and ileo is second nature to those in assisted living and nursing homes. Ileostomies are quite easy to manage under those circumstances. Frankly, care of an ileo is less troublesome than caring for elderly with "regular" plumbing (I know my Dad is in assisted living for memory care and needs help toileting and it is a major issue; an ileo is far less work for staff than what my dad needs).

Were you happy with the J pouch until the IPS began? If so you may want to try to get the IPS under control before making a change. That said I briefly considered a K pouch or BCIR, It seems that when they work people are pretty happy with them. It just seemed to me too complicated particularly after my J pouch was a failure (primarily incontinence) and a really big surgery. I opted for simplicity, an end ileo. I would not recommend just disconnecting the J pouch that didnt work for me, though for some it does work. I had large amounts of excretions from the disconnected pouch. I, 6 months after disconnection had the J pouch excised and am quite happy with the end ileo. The J pouch excision surgery is nor simple and you need an experienced surgeon , not just experienced in general but one that has excised J pouches.

Oh, okay. Thanks. I guess I was thinking it would be a simpler surgery than the original j-pouch. I have been on Cipro for years keeping infection under control. I have also dealt with fissures and fistulas. And I am incontinent a lot. I wear pads all the time and I have butt burn a lot. I spend a lot of time in the bathtub soaking.
I will check around for surgeons if I decide to go the end ileostomy route. Luckily this is not an urgent matter, so I have time to weigh all the options. I appreciate all the input.

Jill, I am sorry about your father. My dad,too had those kinds of problems and it is hard to deal with and I guess that is why I am looking down the line to when I might conceivably need that type of care. I have had friends say, you shouldn't be worried about that now, but of course they don't have pouches and have no idea what it is like to be incontinent in the way that we are. They are usually thinking of urine not enzymes that eat your skin.

Holly-
I have always joked with my Doc that my plan is to manage as best I can for as long as I can, and that I will get an ileo when I am getting admitted to the nursing home In the meantime, I have incontinence due to fistula surgery post-pouch and now chronic pouchitis. Joy. Do you know what your incontinence is due to? Mine is both issues-I use a lot of fiber, immodium, and codeine to thicken the stool to help with incontinence. I also take antibiotics, Entocort (which I am weaning), and recently added Immuran to help. I am better than I have been in years and it feels wonderful! It could have gone the other way and not worked, and if/when that happens, I will be looking at an End ileo. I go to Mayo, and they do not do BCIR or K pouch nor do they recommend them-too many "repoerations" they said. So my plan is to keep fighting for the best "management" I can achieve, and when my options are out, go to ileo. I think that is the only way I will really feel OK with it and able to accept it. Based on my temp ileo years ago, I know that ileo will solve several of my current problems, but itself still requires supplies, time, physical and psychological adjustment, has potential for skin issues, leaks, accidents, too. So it is not like a full on "cure" for the challenges we are experiencing. You may have other medical options before you have to make this decision, that you could consider.

Oh yeah-and also, get a bidet-it does wonders for the butt burn, and will save money on TP and creams and keep you out of the tub. It will make you feel like a new person. I got one for $200 on ebay-just replaces the toilet seat and hooks up to the cold water of toilet and hot waterline of nearby sink. Really easy to install. Mine is a Biobidet i3000, but there are many models available, and you don't have to spend alot-I bet mine paid for itself in less TP and desatin in year 1 alone, not to mention no more chronic anal pain and improved quality of life. Try it-no regrets!

I just told my husband he can get me a bidet-it for my birthday. It sounds like something I really do need.
I have been on Cipro for years fighting what I though was pouchitis. But a new gastro doc I saw diagnosed me with IPS. I was taking 25 mg. of elavil for depression. He said that was the drug of choice for IPS so he upped it to 50 mg. Of course that has helped me gain a lot of weight because I stay hungry all the time. Whenever I have incontinence it is usually due to something I have eaten that causes a temporary partial blockage. Diarrhea runs around it and until I can get it to move, I will have a lot of leakage. I do irrigate (give myself an enema) twice a day and that can usually make it move on through. And of course I never know when something I eat will give me instant watery diarrhea. I am like you as far as an ileo is concerned. Sooner or later I am going to have one. I cannot fathom going to a nursing home or some other place and have this leaking. You know that no one will keep you clean enough to keep your skin intact.
Thanks for you input. I will keep holding on for a while and we will see how it goes. Keep in touch and let me know how things are going with you. And I am definitely checking on the bidet-it. Thank You

I find it annoying that people think us with continent ileos can't get help. It is VERY easy to take care of and scope. If we were to be in a nursing home the thing can just be left with a foley catheter if it was hooked up to a bag type of situation. I have had flex sigs done in ERs where nobody knew what I had. They just had instructions I gave. If you educate your care taker there is no issue and these things are not rocket science. Hell, I am awake for my scopes and get to see it all on a screen.


Pouchitis is easier to maintain with a continent ileo. I know of a guy that suffered with his jpouch on this board actually with pouchitis and booked a surgery with my BCIR surgeon in Florida and is good to go.

A friend of mine just switched to the kpouch from a failed jpouch and feels like it was a great decision.

It is really up to you. I think all of these surgeries are horrible and the options aren't great for this day and age. I say go with your gut because you never want to doubt yourself down the road and live in a state of 'what if'.

I had c.diff and thought about ripping my pouch out because the gas and pain was unbearable. I am glad I got tested for c.diff and treated. I have issues now with food going through me and bad bacteria bowl infections but a bag won't fix my issues. You really need to get to the root cause of it all before surgery IMO.

I have had my j-pouch for 19 years, so I pretty well know what I can handle and what I cannot. I have only had one scope without being knocked out and swore I would never have another one and I haven't. And that also includes going into the emergency room. There is no way under the shining sun that I would ever let an ER doctor scope me. Most of the ER doctors I have encountered do not know enough about j-pouches to be scoping them anyway. I am concerned with perforations that could be a result of someone who is unfamiliar with j-pouches doing scopes. And I have never fully recovered from having 200 stitches in my rectum. Even though we all have pouches or have had them, we are all different and have our own issues. I am so sorry you are having problems and you are right we each have to do what is the best for us. I would much have an end ileo and have feces running into a pouch than have a tube running out my hiney into a Foley catheter bag. But that is just me.

Sorry if its annoying Vanessa, but that was a big factor for me. I don't want to have to teach my dr about my condition. When I was done with the j-pouch I wanted the easiest, most well known option because, for me, it was important to have drs understand my condition. What if I was unconscious? What if I was in a country where they don't speak English? I tend to get all the complications and I just wanted the answer that would get me back to life the fastest and be the easiest to manage. For me that was the ileo.

I'm glad you haven't had any issues with getting care for your k-pouch. But just as you don't want a bag and its challenges, I didn't want the challenges of the k-pouch. Neither is a better choice. It's all about what works for the individual.

Holly,
Not sure if I understood your last post right or not but here goes...the k pouch has an abdominal stoma so there is no tube running out of my hinny...my hinny has been closed off and the tube goes into my abdominal stoma for about 1-5 mins at a time (3-6xs/day) (much less time than hubby takes to do his business) and the stool runs out of that tube...if need be I can tape it in or use an ostomy flang and belt or a typical ostomy appliance to hold it in...and attach either a leg bag or a normal bag so nursing homes (Goodness, May I never need one!) would not be a problem for me...And scopes are a breeze...I do them to myself under the supervision of the radiologist!
A k pouch, even when you already have had a j pouch, is a big surgery and not without possible complications that can be devastating for some...when it works well, it is a Godsend but when you have repeat difficulties like Eric did it can end in an end ileo anyway...
You need to know which option is best for you and your body...and what you want from life at this stage...I have fought for my K pouch for 33+yrs but it is a hard battle in my case...I am still winning but one day I may not and will have to choose another option...
Sharon

I do have a j-pouch with an opening to the outside through my rectum. The pouch leaks and while it is leaking the feces that has all of those enzymes hits my skin and makes me so raw sometimes that I cry. I have IPS (irritable pouch syndrome) and even if I change the type of internal pouch, I will still have that. So, if I really want to protect my skin and my dignity down the road I was thinking going to an end ileo would be the answer for me. Not for everyone of course, but we all have different types of problems and what is good for one,may not be good for anyone else. It is wonderful that you have made it 33 years. When I had my surgery 19 years ago the procedure was only done by one doctor in Jackson, MS where I had mine done. He has since retired but there is someone else I can now see, if I need to have further surgery. I sure don't want more surgery, but in my case it is fairly obvious that somewhere down the line I will go to an end ileo. I really want to search every option before I commit. Thank you so much for your input.

When my docs at CC told me my jpouch was a failure I had a few choices - go to kpouch or bcir, redo the jpouch, or go for permanant end ileostomy.

I quickly took the kpouch,bcir out of the list, because you can still get pouchitis with it, and I was already annoyed about having to explain a jpouch to almost any doctor I went to - especially an ER doctor, and I wanted more simplicity of care. In addition, I couldn't fathom carrying around anything to be able to "empty".

I ditched the jpouch redo idea.. because enough was enough. And even if the second jpouch was built correctly (as the first one wasn't) I had learned that pouchitis, and chronic pouchitis was a fact of life for many jpouchers. And as one who seems to always get the minute percentage of complications.. I just didn't think it was fair to my body to try another jpouch.

So perm. end ileo was my decision. And a good decision that was!

My biggest question for you Holly though, is if you have IPS... what's to say you won't have the same problems if your jpouch gets removed? Have you had other testing? What about bacterial overgrowth? Have you been checked for cdiff? What about crohns as you mention fistulas?

I might recommend you get yourself to a world class jpouch GI doctor to really understand what is going on with your jpouch before making a huge surgery decision.

If I don't have a pouch,I won't have Irritable Pouch Syndrome. My GI doctor is top notch and stays on top of things. I am checked on a regular basis.
Believe it or not my fistula was staying open because of a yeast infection. MY gyn told me I had a yeast infection and gave me Diflucan and it miraculously cleared up my fistula along with the infection. I have not had anymore, but I take a Diflucan every few months to remove any overgrowth I may have. I had a colonoscopy and biopsy every year for 23 years with my UC and then they biopsied my colon again when it was removed. I do not have Crohns.
My main problem is leakage and all the testing in the world will not fix that. If I do have surgery to remove my j-pouch I will go with ileo because I too don't want to go through dealing with another internal pouch. After 19 years with a j-pouch I am just tired of all the leakage and raw skin. I really appreciate your input. thanks

liz11
Another question. How did you know you had a j-pouch failure? What were your symptoms?

Holly,
What is the cause of the leakage?
Sphincter or other?
Sharon
ps...for some strange reason K pouches seem to suffer less pouchitis than J pouches...it may be that we need to keep our stool output liquid and thus really empty out our whole pouch every time (mostly) and thus suffer from less overgrowth and other problems...But it does happen...and can become chronic just like in a J pouch
Sharon

Sphincter pretty much right now. I went to pick my granddaughter up a little while ago. I parked and started across the parking lot to get her and I felt it running. I had to take off to the bathroom to clean myself up and put a pad on. I carry pads everywhere, but absolutely hate to wear one all the blooming time. And I know sometimes it is caused by a partial blockage if I have eaten too much fruit or something else not easily digested. I don't know how it is for everyone, but as soon as I eat peristalsis starts up and I have to go to the bathroom. Frustrating, but I guess it could be worse. I could still have UC.

Holly, yes it is typical for food in the stomach to stimulate peristalsis (they call it the gastrocolic reflex). But, what is NOT normal is for poop to be leaking out of your butt. It definitely sounds like you have weak sphincter issues and there is only so much you can do about that. People with a colon can get by better, because the stool is not loose. Lots of women as they age have sphincter weakness from childbirth (this is the reason that c-section is recommended with a j-pouch).

Anyway, if I were in the same boat as you, I would also be eyeing an ileostomy. A strong sphincter is a very important asset. Even when I have pouchitis, I can hold it pretty darn good.

Jan

holly have you ever had manometry testing! that would be the tell tale data for a weak sphincter. If you haven't had that test. you need to have it.. for sure.

also if you have IPS you can still get IBS like things without a pouch. think about it.. the pouch is made from the small intestine. get rid of the pouch, you still have the small intestine. In fact when my jpouch was removed, my op report said my surgeon resected back on about 15" of my small intestine,guessing that was from the jpouch. Something very much worth finding out more about before you went for a huge surgery.

also diflucan would only get rid of yeast overgrowth, but you could also have bacterial overgrowth. Bacterial overgrowth is very well known to cause IPS, IBS, IXS like symptoms.

just throwing out some things worth investigating.

Liz,I am going to talk to my doctor about all of this. That is why I posted the question to get input before I make a monumental decision. And all of this has helped me tremendously. Jan,I am going to check with the doctor about my sphincter problem which seems to be getting worse. I will keep checking back and let you know what I find out. Thanks for all the help and concern.

Holly,
I had sphincter problems (no sphincter after the age of 10) all of my life until I got the k pouch (that is why I got the k pouch along with severe IBD and what was probably undiagnosed UC)...it is really hard to live with, I had gracilis muscle flap surgery done to build a new one and the first time around it worked really well but snaped after a bad bout of UC...the 2nd one never worked and I had the pouch done because of it (UC + no sphincter = disaster)...
Have you tried biofeedback? Muscle stimulation? Electro reinforcement? There are method nowadays that can give you back some (maybe enough) control to get your life back without needing more surgery...
Sharon

Hi Holly,
I suffered with leakage from my j-pouch. Dilatation wrecked my internal sphincter muscles and recto vaginal fistula's as well as tons of fistula tracks made me op for a k-pouch. Problems with leakage in j-pouch can be a problems and its essential that you have really good inner and out sphincter muscles. In the end I managed for 4 years by using a medina catheter and flushing out my j-pouch via rectum whilst in the shower. I used the outer sleeve of the cath bag to push water upwards into pouch and it flushed out any remaining foods that hadn;t filled up my massive tena pads that night. Honestly it was full on whole bowel evacuation and I too had a sore bottom. I used germaloids to to help with itching and soreness as it has a local anesthetic in it.. Ointment was better than the cream. Flushing out the pouch in the evening and morning meant I got rid of a lot of stool from the pouch so accidents in the night weren't so full on and during the day was a relief as the 'drip-drip' leakage had cut right down too. the pads caused a problems during the day as they never let your skin breathe, so that will contribute to sore bottom. I used toilet paper or kitchen paper towels.
My j-pouch worsened considerably, not leakage but adhesions around it, strangulated pouch and post op peritonitis after reverse ileostomy just added to problems of living with j-pouch, so opted for the k-pouch. Early days for me as I only had the surgery done beginning of July.
I hope things get better for you and as your last post was June time I really hope things have improved and your life is back on track again :-)
Rachel

Thank you so much for checking on me. I went in to have a barium enema and it hurt me so badly, that I cried all the way through it. The next week, I had a scope and the doctor said it took him 20 minutes to get his little finger up inside me because I was so strictured. No wonder that dad-blame barium enema tube hurt so badly. The blockage is fibrous tissue and they want me to see a surgeon and do dilatation and biopsy. My scope showed no active disease. I have irrigated my pouch for years and years. I do believe that is what has kept my pouch functioning for so long. My leakage is better because the doctor did stretch my rectum some getting into the pouch. My body was trying to help me out by giving me diarrhea and vomiting. Otherwise there is no telling what kind of blockage I would have had. I am still leaking some, but hopefully they can stop that after the surgeon takes a look. One day at a time. I have found some cream that has helped me tremendously because you are right the pads make me so irritated. It is Burt's Bees Baby Bees multipurpose ointment. It is not petroleum based so it is so much better than something like Vaseline. I may check out the K-pouch, but if I have more surgery I will probably to with ileostomy. Let me know how you are doing. I will try my best to post more often. thanks again.

Holly, so many people here have absolutely horrible symptoms from anal strictures, while having pretty normal pouches. I hope the dilation with the surgeon works. Often, it takes multiple treatments. But, if it does not work, they can do what is called pouch advancement surgery. This is where they detatch the pouch, remove the strictured area, then reattach the pouch. It can save your pouch.

Jan

Definitely work going back to your surgeon and having further investigations before throwing the towel in.
I had no option too as even with a new pouch my fistula history and all the tracks from others, it would just of been a matter of time before another fistula popped up, plus being incontinent during the night and all the mess inside me from the peritonitis.
i only got a k-pouch becuase my surgeon likes a challenge and that was a 6 hour surgery plus 2 hour recovery, so not a quick in and out, major surgery. He even asked me if it was definitely what I wanted to do, so for a surgeon to say that, well, you know it's going to be a long one.
If it's just the one problem you're suffering with it's always worth investigating.
Good luck, hope it all goes well for you, Holly :-)

Thank y'all so much. I will see my doctor on the 25th and will go from there. I am very blessed that my pouch is still functioning well. Hopefully they can get the incontinence stopped by getting rid of the stricture. Will post after I find something out. It is great to be able to talk with folks that totally understand.

Sorry it has been so long, but I am finally at the crossroads. I have been scoped,x-rayed, had an MRI and today met with a surgeon. My GI doc said that I was so strictured that it took him 20 minutes just to insert his little finger. He did not want to do a dilation himself so he sent me to a colorectal surgeon. The surgeon refused to dilate. He said there was too much of a chance for perforation. They only thing he would do was take out my pouch and give me an illiostomy. They wanted to go ahead and schedule me, but I told them I needed to pray about it and talk to my family. But if a colorectal surgeon refuses to dilate, do I really want to try a dilation by another doctor that may help for a little while? Or do I go ahead and have my pouch taken out? I don't know how much choice I actually have.

Holly you can opt for a diverting ileo and keepthe jpouch intact but unused. HOWEVER if you get diversionary pouchitis it willbe extremely problematic because the mucousy gunk will not be able to get out if you are so strictured. But it might buy you time to think through things more.

I think what would be better for me is to remove my pouch totally and go to an illiostomy. After the last two years of leaking and having vomiting and diarrhea, I am sick of it. Apparently when I get almost blocked because of the strictures, it causes those symptoms. When I had my original surgery it was because of a blockage that almost killed me. I don't ever want to get that sick again. The surgeon says it is better to have the surgery now while I am healthy and can tolerate it easier. I told him yesterday that he was the only surgeon from Mississippi listed on this site. That means a lot, too. I covet your prayers and will post after the surgery. thank you.

Congrats on making a decision and moving forward. Sometimes that is the hardest part. Best wishes with the surgery. You will feel so much better once it is done and you have recovered.

Thank you.