Removing J-Pouch and rectum - Do it or Hold off?

Deathstalker, I’m so sorry for all you are goi g through.  Sadly, my son Is dealing with similar issues.  The surgery to remove the pouch is a bad surgery for. What I understand.  Going back to an Ostomy is a tough surgery as well, but you can do that and give the pouch a rest for an extended period of time.  You need to find out where then,Ray is though.  And there is a leak if you are having abscesses and fistulia.  My so. Has been going through that for four years.  He has been diverted once already and is goi g to be diverted again next week.  We were fortunate to see Dr Remzi in NY.  The plan for my son is divert next week, lose weight, because he is seriously overweight even though “he eats nothing”; bullshit on that!  But he needs to lose weight then Dr Remzi will go back and create a new pouch.  Let that heal for several months and then hopefully reconnect.  If that doesn’t work then a permemenant Ostomy.  By diverting, it will clear up the infections, fistulia, etc.  but as I said, if there is a leak they will return.  You need to find out what is causing the problem first then make quality of life decisions.  FYI, Jeffrey is up every hour at night.  He gets no sleep.  

All I know from conversations is that all of these surgeries are rough.  The bag can stay in for a while before removal.  Jeffrey was diverted for 10 months before they put him back together in 2016.  The last two years have been hell for him.  I feel your pain, I’m watching it happen at home..so sorry.

I'm sorry that your son has had to go through this. The fistulas, fissures, abscesses I've gotten over the years began before the J-Pouch surgery so their not leaks from the pouch but rather issues with the anus / rectum that have been ongoing. One of the reasons I'm wondering if it's not just better to remove the whole damn plumbing down there. 

I've heard the whole divert option and let the pouch heal but I kind of think it would be best just to go with plan B and do a permanent bag. I'm also much older than your son too though so lifestyle makes a difference in decision making. 

Yes, I don't know much about going with the permanent bag and removing the pouch altogether. This surgery would be completely new to me but I can't imagine it's worse than steps 1 and 2 of the original J-pouch surgery nor the countless minor surgeries I've had for the abscesses, etc. 

Before having your J pouch removed, you will want to be satisfied that nothing can be done to make it work to your satisfaction. You may want to consider getting a second opinion.  Once your pouch is gone, getting another one is no longer a possibility.   There are two surgical options that do not require having an external bag:  the K pouch and the BCIR.  These similar procedures involve creation of an internal pouch with a button hole size stoma located below the belt line.  The pouch is emptied at your convenience 4-5 times a day with a small catheter and the stoma is covered with a small absorbent dressing.  With these procedures, you can wear the tightest clothing, eat almost anything you want, participate in active and strenuous activities, and experience intimacy with no embarrassing problems. Significant medical problems made removal of my j pouch necessary and I chose to get a BCIR. I very strongly did not want the bag with its associated issues.  Removal of the J pouch and creation of the BCIR were done in one operation and I was doing many of the activities I enjoy within 3 months post-op. I now lead a normal life and have had no problems with my pouch.  Both of these procedures have a high success rate and high user satisfaction.  Please feel free to send me a PM if you have any questions.

Bill

I have not really considered to BCIR or K pouch. There’s are some things I will definitely discuss with my surgeon.

When you talk with your surgeon about the BCIR and K pouch, you should know that many of them are not knowledgeable about these procedures or may have outdated knowledge about their success rates. Don’t be surprised if you get some negative opinions.  Although these procedures can have complications (like any major surgery), the failure rate (defined as the need for the pouch to be removed) is less than 10%.  There is a lot of information about these procedures on the internet.  While your surgeon’s input is important, the selection of a surgical option is your decision alone to make.

What is BCIR?  

A BCIR (Barnett Continent Intestinal Reservoir) is a modification of the K pouch in which a "living collar", a piece of small intestine, is used to better stabilize the valve.  The pouch is sewn laterly to reduce the amount of sutures used to create the pouch.  Both procedures work in the same way.  More information on the BCIR can be found at: www.bcir.com.

Thanks Bill!  I never heard of it.  If Remzi is not able to make a new j-pouch for Jeffrey, I wonder if this is an option.  Guess I will find out next week.  Thanks again.

dianne

Would having a K pouch or BCIR reduce the occurrence of fissures, fistulas, and abscesses? That's what I need to know since this is reason #2 that I'd go with the end ileostomy and remove the rectum. 

If the reason a J-pouch is removed is believed to be related to Crohn’s disease then I think the risk of complications of a K Pouch or BCIR (continent Ileostomy) may be too high for the surgery to be recommended. If the complications are purely from the anastomosis (and not Crohn’s) then a continent ileostomy might be a good replacement. The diagnosis helps predict the risks.

I have a j-pouch and Crohn's and am being treated with Remicade. I seem to  be getting a lot of pouchitis and have lost a ton of weight. I have no appetite and think that I'm heading for surgery. The thought of having an ostomy is terrifying to me and something that I'd prefer not having. I'm wondering if I would be a candidate for either a k-pouch or a BCIR and if so, do you know if it's being done in Massachusetts? I have an appointment with my GI doctor in a few weeks and just know that he's going to suggest surgery. Any suggestions and/or comments would be welcomed.

The presence of Crohns usually rules out a K pouch or BCIR, depending on the location of the disease in the small intestine.  I have read a few posts of people with Crohns who have internal pouches and are doing OK.  This is a question you should ask your GI doctor about.  It may be necessary to have a consultation with a surgeon who is knowledgeable in these procedures and Crohns.  While it is very understandable to not want the bag, it is a workable option if a continent internal pouch is ruled out.

Thanks BillV.....I have had my pouch since 2001 and didn't get Crohn's until a few years ago. Unfortunately, I don't happen to be one of the people who is doing well with my pouch and never have. I don't know where the Crohn's is but will be sure to ask my doctor and find out if I would be a candidate. Sounds like something I could live with easily if I am.

Deathstalker - Last fall I developed a huge perianal abscess, which I had drained and a mushroom catheter installed during an EUA (I already have an RV fistula with a seton, since '11).  After the EUA, I was admitted for IV antibiotics, as it was septic.  While in the hospital, I couldn't handle all the drainage from it - it was similar to an ostomy without a bag, so my surgeon suggested surgery for an end ileostomy while I was there, leave the pouch in 'til things heal, and then remove the pouch.  They were able to create the end ostomy laproscopically (although going in she told me there'd be a possibility they'd have to open me up if there were lots of adhesions).  This surgery wasn't too hard on me, although I developed an ileus which was not fun. I was discharged 3 days after the ileostomy surgery, but back due to the ileus, for 10 days.

 

As background, my pouch is now 25 yrs old, original dx. was UC; dx was changed to Crohn's a few years back, I have 2 fistulas, ulcers at the ATZ, lots of cuffitis, pouchitis, and I've decided that enough is enough.  After the above abscess, my surgeon (I go to the Cleveland Clinic) said the pouch has to go.  I'm 61, and not getting any younger, so this is OK by me - we had already set up a date for removal of the pouch due to the abscesses/fistulas/pouchitis/cuffitis, and then the septic abscess occurred and balled things up with that timing.

Yes, it's my understanding that you can leave the pouch in place for long term, some have done that for various reasons.  With the pouch still there, just be advised that there's discharge from the pouch, as the intestines continue to produce mucous that gets expelled.  I get discharge from both the pouch and from the abscess - upwards to 4 times/day and sometimes very urgent to the point I can't make the bathroom, although this is getting a bit better.  I'm thinking some of this is diversionary colitis/pouchitis, and the rest from the abscess.  I'm not having it treated, I'm just living with it until removal.  Luckily, I'm not working so it's probably not quite the nuisance as it could be. Even with this, though, I'm feeling good, I do not feel sick like I did before - I'm feeling quite "normal" again.

I understand the surgery to remove the pouch can be a real bear, although some of the people seem not to have had too tough a time with it.  You could perhaps do a search here to get more info. on that.  My surgeon told that me the pouch grows into the surrounding tissue, so there's a lot of lysis (sp?) of the adhesions during the process of getting it out; it's a very "bloody operation" that no doubt will require transfusions.  I don't know how the fistulas/abscesses play into all this and how they will be treated.  

As a final note, having a permanent ostomy is an adjustment, but it's going well.  Having had an ostomy for 6 months during the jpouch creation process, I thought it'd be "no big deal", but kinda it is.  Knowing the ostomy is a forever thing makes things different this time around, but OTOH, feeling so much better makes things different, too, and absolutely, totally worth it, IMO.

Sorry for going on like this, but just wanted to share with you my similar Crohn's/jpouch/ileostomy experience.  I hope it helps you to eventually come to a decision that is right for you.  Let us know how the scope goes, thoughts are with you.

 

Bill, who was your surgeon and what hospital.  My surgeon didn't know about a k pouch.  Thanks

The surgeon who did my BCIR is Dr. Ernrst Rehnke who practices at the Palms of Pasadena Hospital in St Petersburg, FL.  He is an excellent surgeon and the care at Palms is superior. His website is: www.bcir.com.  This website contains a lot of information about the BCIR (which functions the same way as the K pouch) that you could pass on to your surgeon.  On this website, you can order a packet of information that contains a DVD about the procedure and a list of about 300 people with BCIR’s who you can contact for their experiences and comments. On the first Tuesday of each month (tomorrow is the next one) at 8:00 pm eastern time, there is an online chat room that you connect with on the above web site.  Dr. Rehnke also holds free seminars at various locations where the procedure is explained and you can ask him any questions you have.  The next one is on Saturday, August 11 at 11:00 am in Syracuse, NY.  His website has more information about it.  If you have any questions that you would like to ask me, please send me a PM.

Bill