Update - Cleveland Clinic Drs. Remzi and Shen

Gee, it seems like it is one of those "good news/bad news" things. The good news is that you are getting some solid opinions on what is going on and how best to proceed. The bad news is that it involves more surgery, a lot of it.

You seem to be taking this in stride. Possibly, you were just given confirmation of what you suspected. If Dr. Shen's conservative treatment is not going as hoped, then that leaves little else.

I agree that the diverting ileostomy is a good interim choice to get you in shape for the next step. It takes away the problems that have been plaguing you, so that you can really make the next choice that is right for you. Either way, pouch redo or removal, it is a big, involved surgery.

The main things I would be asking myself (and Dr. Remzi) is whether the cause of your sinus was due to acute disease at the time of your surgery, or some ongoing condition that will still be there if you have a reconstruction? An example would be ischemia. I would want some reasonable certainty that reconstruction would be successful, not just an experiment. The other question would be, if you opted to scrap the j-pouch, would you be a good candidate for a k-pouch (if that is something you'd be interested in).

Good luck with this next phase toward health!

Jan

You sound good. I'm glad you had your options assessed by top doctors in the j-pouch field and you know you did everything you could to resolve your pouch problems. I'm sorry it's come to this but happy that you are going to feel better soon. Please let us know how everything goes and all the best!

Jan: Thank you for the reminder that pouch revision or excision is not a minor surgery! After talking with the surgeons I have had no indication at all that there is an underlying problem - just a "sinus." And yes, not a fan of an "experiment" at this stage.

Thanks, TE! Jeane, thanks for following my saga and hope it helps others by being so frank about our conditions! My understanding is that Dr. Remzi would create a diverting ileostomy in the first surgery; the second would involve freeing up the pouch and checking it out, etc., and the third would be to reconnect with likely hand-sewn anal anastomosis.

I have asked for clarification if after the first surgery/ileostomy, if that presents me with some time to decide whether or not to do revision or excision and Dr. Remzi's office indicated it would allow.

I am debating whether to have an end/final ileostomy on Feb 7 and be done with it OR having the loop to give me time to heal/decide if I want pouch excision later. If the loop can be reasonably easily turned into an end I might go that way. Not 100% sure what I'd like to do.

For those that have PMd me, thank you for your support and stories about going back to ileostomy and "getting your life back." As indicated, I think sometimes doctors and others in our life have a harder time with us having ostomies than we do, ourselves!

You know, it is possible to have an end ileostomy now, leaving the j-pouch to deal with later. They just close it off with a "blind end" inside. The primary issue with that choice is that the pouch loses what little fecal stream might come down with the loop ostomy. This is pretty minimal, so I don't think it would be a factor.

Primarily, the loop ileostomy is easy and quick to do, without getting into the deeper abdomen. There are a number of folks here who have an end ileostomy and retain their pouch. Cataja is one that comes to mind. She has Crohn's, and the ileostomy changed her life for the better. So far, she has not seen the need to remove her pouch.
http://j-pouch.org/eve/persona...profile&u=3331032271

Jan

Dr. Remzi has given me an 85% success rate -- The sinus is at the anastomosis and advancing might work. But I have to be honest, the "15%" is staring me in the face right now.

Also interesting that we could do an end ileo and not remove the pouch. I need to look that up a bit more closely. No danger of harboring infection or becoming gangrenous or cancerous?

Thanks.

i am going in for my 4th kneedle/knife treatment on my sinus at the anastomosis next week with Dr.Shen. Last one he did 6 weeks ago he said we are making great progress

Poucho, it would be great if it works well for you! The very best of wishes. It is an amazing technique.

The main issue with leaving the pouch intact with an end ileostomy is that you still would need periodic surveillance. If you had issues with ongoing inflammation (pouchitis, cuffitis, etc.), this may or may not improve.

Having the pouch bypassed for a prolonged period could lead to diversion pouchitis (because of the loss of the nutrient stream to the mucosa), but it is not a given.

But, you are no more prone to infection, gangrene or cancer than you are now. The blood supply is not interrupted, so it is still living tissue, the same as if you had a diverting ileostomy.

Your local surgeon may not be interested in this, but it is worth looking into regardless. Everyone knows that an end ileostomy is easier to care for than a diverting one.

Jan

All I can say is "wow" and "thanks!"

KNKLHEAD, why not continue with the kneedle/knife procedures with Shen? it may take up to 20 procedures but very non invasive and he has had great success with it. Is this Shens suggestion to you? he doesnt think his procedures will work??

Hi, Poucho.

My local surgeon was very excited about the sinusotomy procedure that Dr. Shen does, and the office visit with him right after the first sinusotomy he was ecstatic, that Dr. Shen said one-and-done. He knew of other patient(s) that could benefit, and was watching me closely.

When the issues redeveloped, I went back to Dr. Shen for a second procedure. This time I had lots of bleeding and painful night from the procedure. He was still confident we are on the right path. However, I had further CT scan and testing and my local surgeon and requested I see Dr. Remzi for his second opinion and was lucky enough to have both the talented Dr. Remzi and Dr. Shen performing my pouchoscopy. Dr. Remzi didn't suggest I have more sinusotomies, he recommended pouch revision. Additionally, I sent a note to Dr. Shen to get his opinion, but I haven't heard from him yet. My surgeon agreed with Dr. Remzi and he felt that the more we opened up with sinusotomies, the more potential area for leakage to drain into while we wait for healing. Needless to say, it appears as if Dr. Remzi nor my local surgeon were as optimistic that Dr. Shen's technique would work for me and my current situation.

Additionally, I've had a pretty rough last several months with leakage and pain and, sadly, my patience may not be quite what it should be to go through X more number of open-ended procedures.

Trust me, it was great to be witness to Dr. Shen's optimism and knowledge and I would have loved for it to work, but it's my opinion my issues may not have presented me as the best candidate for his procedure.

aka.. I am a patient of the shen/remzi tag team also. I am thankful everyday for that privilege.

All I wanted to say is that I have found shen to be extremely anti-surgery. He wants to spare our body from any more damaging kind of stuff that can happen in surgery. Even if its just our body developing some freaky autoimmune problem affecting some other part of our body than the gut. that's shen's take.

Remzi.. wants to get things over and done with and he wants to get you out and about and on your merry way. But with that said... remzi is an extremely conservative surgeon. He does not do things that he does not believe will work. He goes by what his experience has shown him works. Whereas shen is more of a "scientist" kind of guy.

So even though I call them a team, they really are from different sides but with full respect for each others position. In the end.. they both are doing what they believe will get you the best resolution.

Both of these doctors have done so much for me. And I too have been in your situation having to decide which path to proceed. I think for me what helped was to simply think about "quality of life". With that you are forced to think about procedure times, risk, travel, potential complications, etc...

whatever you choose. I know that you are in the best four hands you could ever be in to get your health back on track.
best best wishes.
ps. as for a disconneted pouch with a diverting ileo... beware. Its worth a shot just to get you to a better place right now. But that diversion pouchitis is an animal. Shen has some tricks for it. but be prepared to make a decision if they dont work
good luck

After having a tough week last week and feeling better the last few days, I think what I'd like to do is have my local surgeon put in an end ileo in case I want to keep it forever and leave the pouch for some resting time, give it six months rest for a decision for Dr. Remzi: Remove the pouch forever or do the pouch redo.

I know the preference would be for a loop ileo (for the third time!) but I'm leaning toward forever ileo. My surgeon indicated a loop ileo is easier to reconnect -- but has anyone done an end-ileo and had it reconnected to a j-pouch for revision? Input is appreciated. Thank you!

I think 3 step surgeries involve an end ileo at step 1 and the j-pouch is made during step 2 where they get a loop ileo.

I don't know about you but I had a difficult time with my loop ileo and have the impression, from people on here, that the end ileo is better to live with.

Best Wishes

Thanks, update: Since Dr. Remzi is very confident he can fix my otherwise "very nice" pouch by doing an advancement, I am going to be having a loop ileo here in Buffalo on the 7th, see if I can regain some quality of life. Then I will likely put my inerds in Dr. Remzi's hands for pouch repair.

After three years of trying, as my buddy put it, I am lucky to have the resources of Dr. Remzi available to me and he's absolutely right.

Hi KNKLHEAD

I had a loop with my two step j pouch, and now have a permanent end ileo.

I do notice a bit of difference with stoma shape, but I didn't have any issues with my loop ileo. No leaks, nothing bad happened. You just have to find a "setup" that works for you...the good thing is that if you call the manufacturers they will send you TONS of products to try. There is a lot of support on this board under the "ostomy" section, and as well if you go to healingwell.com and search the ostomies section you will find many people who have tips, tricks and general support during your recovery.

Bravo on taking the big step of getting your health back. Best wishes.

aka - I am going through the exact same situation; the only difference being that my surgeon is Ashburn (Remzi's protege).

I had chronic inflammation around my cuff with an otherwise healthy pouch. I also had occasional fevers and bad tailbone pain.

Dr. Shen suspected the inflammation was to due to a sinus which he "fixed" with the needle-knife procedure. However, the inflammation/pressure/discomfort persisted, and I opted to explore my surgical options.

After performing a pouchoscopy under anesthesia, Dr. Ashburn determined that it would be best if they re-did the pouch. She said that they found inflammation outside the pouch, which indicates a leak.

The first step was to give me a loop ileostomy. Then, after at least six months time, they would perform the redo with a hand-sewn anastomosis. She described the redo procedure as being quite brutal. The final step would be a take-down.

I had the loop ileo performed last November and am currently doing well, though I still feel some inflammation down there. Still, there are a number of things that don't make sense to me. As far as I know, they never actually identified the sinus/leak that is causing all the inflammation. They only suspect that I have something of that nature. I wish they knew exactly what was wrong before deciding to put me through such a gruesome procedure. Also, wouldn't it be possible that a sinus/leak could heal on its own after >6 months of diversion?

In any case, the loop ileo did help me get my life back on track. I currently take no meds and have gained a substantial amount of weight. I had an end ileo for two years prior to having the jpouch, and it was much easier to deal with than the loop.

Best of luck, and I hope the ileo provides you some relief while you figure out what your next steps are.

Thanks, Nomoremeds. Very good information. I will look to you for your pioneering! Best wishes to you, as well. When I was on the loop (twice) I did pretty well. I used the Convatec product and kept the model numbers in case I'd ever need them again. I'll order some more and hope the same setup will work with my third loop ileo!

the leak could heal with rest, but a sinus will not.

I know I'm late to the game and it's been stated already, but I have to also chime in and say what great doctors they both are. Dr. Remzi performed all of my construction surgeries and did a wonderful job. Dr. Shen has been my follow-up doctor for 4.5 years now and has always known exactly how to treat all of the minor hiccups that have come up along the way.

I'd personally trust Dr. Remzi if he feels surgery is the best option.

Thanks, James.

I am heading in to my local hospital tomorrow to give my innards a rest with a loop ileo. Look forward to the possibility of living without antibiotics for several months and building optimism for a possible second of three step with Dr. Remzi in the fall and an updated pouch.

Good luck tomorrow! Sending positive thoughts your way for a strong recovery and keep us updated!

P.S. Don't forget to bring some slippers that are easy to take on and off, and consider earplugs - it was always too loud at night for me to sleep without them

Just in the off chance that someone is still reading my novel, since my last surgery in the spring of this year (2014) with a loop ileo I have felt phenomenally well and perfectly normal (albeit a bag of poop on the front of me!) I have gained about 35 pounds, had comments like "are you lifting weights," and truly feel like a normal human. The ileostomy for me is very easy to deal with and tough decision for me to decide to go to a revision knowing how much "fun" I've had dealing with J-pouches for 4 years.

I met with Dr. Remzi last week in Cleveland, very well prepared to stay status quo, but have put quite a bit of thought into a new investment -- going through surgery to give a revision or correction by Dr. Remzi -- some more thought. Their strategy of letting you get your health back to make the right decision before consideration for further surgery is a good one.

Believe it or not, I am considering what it must be like for my loved ones, who, I assure you, are more burdened than I that I have an ileostomy! But I am young, feel young and I think I might be wasting the blessing that I'm near Cleveland and have access to one of the best surgeons in the world. Additionally, he has invited my local surgeon, whom I love, to be present at any revision surgery that I have. I am hoping he can attend since he knows me so well and they can share their skill and talents.

I guess the good news is that I have two great options; one is to have revision and a successful new j-pouch and the other is to stay with an ileo -- but the bonus is that if the j-pouch fails I STILL can resort back to the ileo. Kind of like buying a stock that can go WAY up .. but if it doesn't, you still get to keep the original investment.

Not 100% decided yet, but getting ready to make the investment in about March of 2015. Happy Holidays, everyone!

I am 99.9% sure i wont go through with revision cuz the odds are there that the 2nd pouch will have issues as well. I have had my loop ileo since February and I am giving Shen one last shot at closing this tip of j leak, which he gives a 50/50 chance. Odds have not been in my favor since initial surgery in 2008 so not giving this much hope it will work but i will let him try it. If not I think I will stick with what i have for now, i'm in no rush to have any more surgery. I hate this bag but the bag hasnt tried to kill me, the surgery has.

Wow, Poucho, sorry about that .. I think I understand -- this will be my "third" pouch, pretty much and the bag has been kind to me, honestly!