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I was originally diagnosed with Ulcerative Colitis in 1992 within nine month of first symptoms which at the time of diagnosis was life threatening.  Over the years I’ve had pouchitis, stenosis, a perinatal abcess, and an anal fistula through my external sphincter that the surgeon cut which caused 10% loss of fecal continence.  I am now 51 years old.  On August 29th 2020 I went to the ER due to  and high fever and was admitted to the hospital for peritonitis and sepsis due to a fistula forming in my j-pouch that leaked into my abdominal cavity.  I pleaded with the on call surgeon to consult with the surgeons from hospital where I had the original surgery to save my j-pouch which the on  call surgeon at the ER did. This left me with a loop diversion ileostomy to give my j-pouch rest.  To make matters worse, after spending 20 days in the hospital I developed a kidney stone which required another surgery to remove.  I was discharged and sent home with a PICC line to infuse  antibiotics at home. A drain was inserted in my lower back to drain the abcess under my j-Pouch and another drain in my side to drain my abdominal cavity.  So I’m not getting much sleep with two drains, an ileostomy, a stent in my urethra and a PICC line in.  I have an appointment with a specialist 3 hrs away and from what information I have been able to find on the intranet I am questioning whether or not salvaging my J-Pouch is a viable option.  I am having a difficult time with all of this and there is no one around that can relate to my situation.  My wife wants me to keep the ileostomy however it was not place in a good location and will require another surgery to move. The loop diversion stoma and the location interfere with the appliance adhering to my body and the home care nurses haven’t been able to find a product that works. I am conflicted with keeping what I have or risk further complications   If I pursue salvaging my j-pouch.  Is there anyone out their with a similar senecio?  Here is a link to some information I have found regarding salvaging j-pouches.

https://academic.oup.com/ecco-...ticle/9/7/548/467843

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This is a brutal choice, and I’m sorry you’re going through it. If your fistulae are believed to be due to Crohn’s disease then you might not be done with them, unfortunately, but it sounds like you only form them occasionally (two times in nearly 30 years, right?). Since you need another surgery anyway, that helps focus the decision a bit, on *which* surgery. In that context I’ll offer a few thoughts, though you may have already considered most or all of them already.

  1. If you opt for an ileostomy with an appliance you are much likelier to have a good result with an end ileostomy than a loop ileostomy. Because of your fistula situation I think you’d probably be better off with pouch removal than leaving it in place in this case.
  2. Your best possible result with a salvaged J-pouch is compromised by your sphincter status, as well as your body’s underlying risk of fistula formation. I think your failure risk is likely higher than the average rate in the (excellent) article you cited.
  3. You’d probably have a bit better outcome spectrum with a K pouch or BCIR than with a salvaged J-pouch, because of your compromised sphincter. @BillV has been a superb resource for folks considering one of these continent ileostomy options. There could still be some risk of fistula formation (if you have Crohn’s), so this is best considered if you hate having an external appliance. Your upcoming appointment could be with a surgeon who isn’t experienced at these, so if you read about them and are very interested you might choose your surgeon accordingly.

Good luck, my friend. You’re on a hard road, but we are are here for you to help in the small ways that we can.

Scott,

I appreciate your insight and rapid response.  Exchanging information with others with similar health issues carries a lot more weight than it does from people with no experience to draw on.  I like the way you laid out the options.  I’m thinking through things but reading through things helps solidify them.  Very much appreciated your response.

With our complex procedures, it is best to consult with and have surgery performed by doctors who have extensive experience in performing them.  There is a list of surgeons who are familiar with continent ileostomies in the Quality Life Association website (www.qla-ostomy.org).  This website also has articles and videos about surgical options.  In addition, this website contains an article that I published entitled, “Researching My Options” that you may find to be helpful in your situation.

If you are considering a J pouch reconstruction, you should definitely have a manometry test to determine if your anal sphincter is strong enough for your J pouch to function satisfactorily.  I would get a good opinion about whether a pouch reconstruction would yield satisfactory results before going to an ostomy option. Once the anal sphincter is removed, a future J pouch is not possible.  Please send me a PM if you would like to talk.

Bill

Hi Kid,

I am sorry for you - you have gone through hell - but you sound tough and you will get through this.  There are some very experienced JPouch surgeons that can reconstruct problematic JPouches.  They typically operate out of big JPouch clinics like Mayo, Cleveland clinic or NYU.  I don’t know if you can salvage your JPouch, but I would look for consultation with one of those large outfits.  As far as Crohn’s, I hope you don’t have that in the JPouch, but I wonder why it would take so long for it to show up so aggressively.  In the long run, if you had to go with an end Ileostomy- many people do great with it.  I was sick for exactly 25 years with a bad colon, took every drug known to man, finally went for a JPouch surgery this year.  My surgeon is Dr. Feza Remzi at NYU - I love him.  I am just finished step two - and living okay with a loop - other than dehydration.  He may be a good guy to check out.  Best Doug

Thank all for taking the time to offer up some options for me and to encourage me.  I am trying hard to keep my spirits up and remain optimistic but it has been hard.  I am a problem solver by nature like most men.  However I have to rely on the expertise of physicians.  These past month has taken a toll on my marriage.  Not a lot of outside support for my wife and I am trying to hold it all together.  These diseases are a horrible life long curse and can be very debilitating.  It is unfortunate but comforting to know I am not the only person dealing with issues as a result of these diseases.  Thank you for reaching out.

I am sorry to hear about your suffering. I am glad to see you have not given up and are passing your trials and tribulations as we are suppose to do. I agree with your wife, if I were you, I would get an ileostomy permanently. A lot of people may disagree but I am giving my personal opinion. Both of your options due offer risks, but a permanent ileostomy might be a better choice and in my opinion worth it. I know having a permanent ileostomy can be scary and depressing but look at it as a second chance of life. When you get it, i would recommend giving your bundle of joy a name. Giving your ileostomy a name can deepen a relationship and a friendship with it. I am sure everything will be fine with it

I can appreciate where you are coming from Lauren and have considered that option.  I need to look at all of my options and considers the risks associated with each of them before I can make a decision.   I have not received treatment for 27 years nor have I been seen by a specialist for my j-pouch regularly.  That will change going forward.  I want to be sure my original diagnosis is correct or see if I do actually have Crohn’s.  Without a conclusive diagnosis, I can’t feel confident in making any decisions. If the specialist infers that an ileostomy is safest and most reliable option to improve my quality of life, I can rest easy knowing I explored all of my options. I don’t like feeling I am at the mercy of a disease.  At least to some degree I will be empowered to choose how I will live with it.  Up until this point I didn’t get to choose my stoma sight which is too low.  It was originally placed low because i was young at the time and it was only temporary while my j-pouch healed.  During the recent emergency surgery the surgeon just used the old loop diversion stoma from 1993.  It would need to be moved to a better location to create an end stoma. This is a process, and I know I will get through it.

@THE KID posted:

I can appreciate where you are coming from Lauren and have considered that option.  I need to look at all of my options and considers the risks associated with each of them before I can make a decision.   I have not received treatment for 27 years nor have I been seen by a specialist for my j-pouch regularly.  That will change going forward.  I want to be sure my original diagnosis is correct or see if I do actually have Crohn’s.  Without a conclusive diagnosis, I can’t feel confident in making any decisions. If the specialist infers that an ileostomy is safest and most reliable option to improve my quality of life, I can rest easy knowing I explored all of my options. I don’t like feeling I am at the mercy of a disease.  At least to some degree I will be empowered to choose how I will live with it.  Up until this point I didn’t get to choose my stoma sight which is too low.  It was originally placed low because i was young at the time and it was only temporary while my j-pouch healed.  During the recent emergency surgery the surgeon just used the old loop diversion stoma from 1993.  It would need to be moved to a better location to create an end stoma. This is a process, and I know I will get through it.

I totally understand everything you said! If you feel that is right for you, I support it!! How old were you when you got your first stoma at the lower sight???

Hi Kid,

I re-read your posts - and I feel your frustration having to rely on surgeons and doctors to help fix this problem.  I have probably spent years researching medicines and different surgical scenarios- it is exhausting and scary - and the right answers are not clear. For me the thinking about what to do is almost as bad as the disease in some ways.  This may sound crazy, but when I personally get overwhelmed with the myriad of paths to take - I write them down as a game plan- not in my head - literally on a piece of paper.  This way - it prevents me from returning to the scenario analysis.  I have it on paper.  If I could take literary license here..

1) Write down your recent history of problems and medicines taken - so you have it.  A list of phone numbers of pharmacies used and doctors seen.

2) Write down the date of the future meeting with JPouch reconstruction specialist- and write down all the things that you are going to ask him/her.  Your path forward will depend on the data around fixing the JPouch.  For me, if it was an 80% chance of fixing it - I would try to fix it.  If it was 50%/50% - maybe it’s a no go.  Without the data - Crohn’s - no Crohns -  hard to know what to do at this juncture.  Maybe line up a second opinion also.  Write that down.

3) After you get the data on JPouch salvage - you create data on end ileostomy.  New ostomy position..etc.  

A written list is always helpful to me - because I feel like I am doing something.

In the long run - either you will fix the JPouch or go with the end ileostomy - either way you will be okay.   Best Doug

@Doug K posted:

Hi Kid,

I re-read your posts - and I feel your frustration having to rely on surgeons and doctors to help fix this problem.  I have probably spent years researching medicines and different surgical scenarios- it is exhausting and scary - and the right answers are not clear. For me the thinking about what to do is almost as bad as the disease in some ways.  This may sound crazy, but when I personally get overwhelmed with the myriad of paths to take - I write them down as a game plan- not in my head - literally on a piece of paper.  This way - it prevents me from returning to the scenario analysis.  I have it on paper.  If I could take literary license here..

1) Write down your recent history of problems and medicines taken - so you have it.  A list of phone numbers of pharmacies used and doctors seen.

2) Write down the date of the future meeting with JPouch reconstruction specialist- and write down all the things that you are going to ask him/her.  Your path forward will depend on the data around fixing the JPouch.  For me, if it was an 80% chance of fixing it - I would try to fix it.  If it was 50%/50% - maybe it’s a no go.  Without the data - Crohn’s - no Crohns -  hard to know what to do at this juncture.  Maybe line up a second opinion also.  Write that down.

3) After you get the data on JPouch salvage - you create data on end ileostomy.  New ostomy position..etc.  

A written list is always helpful to me - because I feel like I am doing something.

In the long run - either you will fix the JPouch or go with the end ileostomy - either way you will be okay.   Best Doug

I always like to make a list for everything too. Its very helpful!!!

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