Difficulty of Pouch Redo

Dan
Others on the board have had this done while others like myself have been recommended for it. I have never been told my cuff is too large though, but I do have cuff iris and an issues. Do you mind if I ask who did her redo surgery? If do e right she stands a good chance of things working out for her. I'm sorry she has to go through this.

Her surgeon was Dr. Tonya Young-Fadok at Mayo Clinic Scottsdale, AZ.

Her specialty is pouch surgery and laproscopy. On the correct patient, she can do the entire J-Pouch surgery using only the stoma incision. She can pass all instruments through the one hole and removes entire colon from incision as well.

Amazingly we actually got our insurance company to pay for operation. Have Aetna as insurance co and they negotiated a 6 month contract just for my wife.

Dan

We are currently considering this surgery for my 13 year old son who has a 6cm cuff. (His surgery was done at a top medical center in NY, surgeon hand picked for us by pediatric GI). Dr. Remzi at CLeveland clinic would do the re-do in an open surgery. He has told us there is 85% chance of success. 15% chance that this may not work if it turns out my son has crohns during the interim period (on an ileostomy) and for other reasons that he would not know until he gets into surgery. So anotherwords my son could wake up with a permanent ostomy. Were you given similar odds? Was there that risk for your wife? Also did your wife go to a temporary ostomy first? I hope she has a quick and smooth recovery. The surgeon told us it can be very painful. My son said at least the pain would be "temporary"....

I just read your post again. I am amazed you were able to do this laproscopically. Was there talk of having to do it open if that did not work?

She must be one hell of a surgeon wow! To do all that laparoscopic and in 6 hours is amazing. Just wanted to send my well wishes to you and your wife that it all works out. Sounds like she was in awesome hands. All the best to you both.

First, thank you for all of the thoughts.

To be honest, we were never really given odds of success. We had people around us that were confident in their ability and the plan. I do know that pouch redo does have almost as high of a success rate as original op.

Our first surgery was also performed by one of the best docs in town. He had an incredible reputation for pouches, but our outcome was awful. I am still trying to process what happened with the first surgery and why we were left with such a long cuff.

Anyway, in regards to the laproscopy, it is remarkable what can be done through cameras and non-open procedures. However I spoke with the surgeon and Fellow afterwards and it sounds like open surgery would not have made anything easier. The pelvic region is a very difficult space to visualize. Having a zoomed in camera on the area can actually help.

So in the original J-pouch surgery the goal is to make the cut on the rectum 1 cm above the anal canal. To do this the tissues have to be teased apart and dissected all the way down to the pelvic floor. This are is extremely difficult to work in. It sounds like my wife is an even more exceptional case. The working theory is that after 4 hours of dissection in the original surgery the surgeon made a decision that he was far enough down and made the cut. This left her with the extra cuff. I can guess that the anatomy of peds can make this area very difficult as well.

Finally, yes, my wife went to a temp ileo 2 months before the pouch redo. The thought was that by diverting away from the defunct pouch all symptoms should resolve. If they did, which they did, everyone could be much more confident in the 2nd major surgery. If the symptoms did not resolve, they may have suspected some other upper GI issue including Crohns. If this was the case I am sure end ileo would have been up for discussion.

Dan

I have one question for you. At what point were you told that your son had a 6cm cuff and that was what was causing the problems. Our original surgeon performed several exams and post-op endoscopy and never said anything. It was crazy! I feel like he knew what he did, knew he couldn't do anything about it and just hid the information.

So happy that you made it to Cleveland, so many people are not as fortunate to have these incredible life-changing options. Wishing you the best.

Dan

Dan
Does your wife have a narrow pelvis? Seems those if us with narrow pelvises sometimes have issues. Also is the 6 centimeters the length from the very bottom of the anus ( anal verge ) up to where the anastomodis connects? I can never figure this one out. When they measure the 6 cm cuff is it from where the anastomodis connection is and and area above it or length below the anastomosus connection (anal transitional zone)? Sorry if stupid question. It seems if above then that may be why he had a hard time passing stool?

Not sure if this answers your question but the measurement should be from the top of the anal canal to the anastamosis site. I asked after the surgery what the measurements ended up being and they said 3cm anteriorly and 7cm posteriorly.

No, we were never told that my wife had a narrow pelvis. Surgeons did say that she had very large ovaries that constantly were in the way....very fertile family :-)

Dan

I had a pouch redo with Dr. Remzi. I have a long horizontal incision below my pubic line and he agreed to use that. Although, he did tell me at any point he needed cut me vertical he would. In his words I was not allow to tie his hands. All said and done he did not have to open me any other way. The surgery took 9 hours. The recovery for me was only a couple of weeks.

Yes Dan this makes sense. Thanks. I really hope this operation sets things straight for your wife. Btw I just viewed a video on YouTube from your surgeon showing the operation. Soundsike you guys found a great one!! Keep us posted as to her progress. Best wishes.

Dawn. How are you doing now? I saw Dr Remzi for redo consult also. My GI highly recommends him. He suggested advancing my pouch due to constant anal ulcers and stricture at anastomosis. Why did you have redo and how long ago ?

4 months after surgery, another hospital told us that his cuff was too long. We asked our surgeon and he told us - all that stiff about how it depends how you measure it - and it is a 2.5-3.5 cuff which is a little long. Ultimately the original hospital put him on crohns medicines - but now Cleveland Clinic thinks he may not have crohns - rather he is dealing with UC issues from the cuff. We have contradictory opinions and are trying to sort through them. It has been a very confusing and difficult journey....Please keep us posted on your wife.
It was very interesting to hear that about the camera - that is different information from the Cleveland Clinic. Has your surgeon done a lot of re-dos? Did you consider Cleveland Clinic too? Thank you.
Also, look forward to hearing more from Dawn. How does your pouch function now? Thank you.

The reason I had a redo, is because 7 years ago I had my colon removed and jpouch created the same time. The surgeon had not anticipated the amount of disease and never should have created the jpouch the same day. Since he did, he also severed my ureter and cut a hole from my vagina to my jpouch when he was stapling the anastomosis. Two days later I had surgery to repair the ureter, which is why my scar is longer than the usual hand assisted lapro scars. The hole from my vagina to my pouch formed a never ending fistula with multiple unsuccessful surgeries. Remzi finally did a redo May of 2012 and I am hoping to have takedown soon. I know it's quite the story, but I have to say, I always feel well.

This is also the reason I say haste makes waste, better safe than sorry and all that stuff. As far as I see a person with UC should have a 3 stage with no exception. Since my surgery, every surgeon and especially the ones in Cleveland would only do a 3 stage.

I had a severely inflamed rectum at the time of my two step surgery. Thankfully, I haven't had any troubles. I was off prednisone for quite a while though. It really all depends on the health of the patient. I agree people on steroids going in should always have a three step. But so many two steps go off with out a hitch. I've been hearing a lot about one steps lately. That would make me nervous.

Boys Mom,

Yes our surgeon has relatively a lot of experience performing redos, but again the most difficult part of the surgery is the pouch excision. All pouches get stuck to the surrounding structures, but it varies from case to case. Essentially the surgeon looks at the tissue and has to decide where the pouch tissue ends and the other structures begin. This is also the reason why they can't remove the extra rectum and move the pouch down. By the time the pouch is removed it is very beat up and they end up making a new pouch from fresh small intestine.

We fortunately live 10 miles from Mayo Clinic so did not consider Cleveland Clinic, however I have heard very good things.

My wife was also given a Crohns diagnosis for 2 weeks. It was changed back to UC with severe proctitis after our first visit to Mayo. We tried suppositories 2-3 times a day for several months before throwing in the towel.

Dan

When my daughter had her original surgery in 2003, her surgeon at the time, Dr. Daniel Von Allmen, did her 1st of a 2 step surgery through her stoma site. She was 15 at the time.

I didn't know at the time that her surgery was any different than what other surgeons were doing. No other incisions, just the stoma and the lapro scars, amazing.

Hoping for the best recovery for your wife.

Her surgeon left a rectal cuff for the connection with the pouch. It definitely surprised us that she chose not to do a mucosectomy. She said before hand that if she saw tissue that was horribly inflamed that she would not hesitate to do a mucosectomy.

We did ask about transit time and stool thickness and she said the difference will be very little. She lost about 1 foot of intestine which I don't think is a lot...relatively.

Post op update: lots of pain, but home on day 3, pretty incredible, will post update after take down and probably several before.

Dan

This is really great news, Dan! I know you guys have really been through the wringer with this, and I hope this is the end of her troubles.

Jan

pouch4wf:
Congratulation on being home. I hope all goes well in recovery.
I reread your post (again) and it sounds like you understand that they always excise the old pouch if there is too much cuff. I thought my son was getting a combination of advancement and revision but there was no talk of excising old pouch. Am I correct in understanding you believe that is the normal protocol (excising the old pouch) when you need to shorten the rectal cuff? Thank you.

question two - so your wife is on a second illeostomy? This is a 3 step procedure to redo the pouch? I thought it was one to divert and then one to advance/revise the pouch?

There are two types of surgery when the cuff is discussed.

There are some people who have a normal length rectal cuff of 1-2 cm and have a lot of difficulties with chronic inflammation (cuffitis). There is a surgery called pouch advancement that can sometimes be done through the anal canal. Cuff is removed and pouch is moved (pulled down) 1cm and reattached.

For those who have over 2cm of retained rectum the distance is too great for the pouch to be moved. The pouch is completely anchored in place and cannot be moved much at all. For these people (my wife) the pouch must be removed, the rectum shortened, new pouch creation and then reattachment....complete redo.

Dan

Yes hers was a 3 step surgery.

Her first surgery was a simple diverting ileostomy. In her case they wanted to divert away from the old pouch and make sure that all symptoms went away. If they did not, they would have to question if the pouch was really the problem. This step also allowed her to reduce her pain meds to zero. This was important going into the major 2nd surgery so that she would better respond to pain meds. This first surgery had no functional role in getting her pouch fixed.

Surgery 2 was just completed. Due to intestinal logistics she ended up moving the stoma location higher up in her intestines..same location on abdominal wall. Purpose of this stoma is to allow healing time of the new pouch.

3rd step is takedown.

Dan

Thank you pouch4wf. I had not understood that previously. It sounds like this would also be a 3 step surgery then for my son as the first step is also to see if his "crohns" goes away once we divert him back to illeostomy. I am surprised they did not explain that - maybe they assumed we knew because he had a 3 step the first time. I guess you always have to let the pouch heal before connecting. How is your wife? Is she able to sit down. I heard that can be painful after this surgery. Wishing you all the best and appreciating your sharing your knowledge.

boy's mum.
has your son seen DR. Remzi at CC. TOP in the world for jpouch redos. He does about 4-5 a week right now. So many that he is in process of trying to make initial jpouch surgery a board certified surgery because he is disgusted by how many patients have poorly built jpouches.
Regardless.. you are so close to cleveland. Trust them. Dr. REmzi is my surgeon. He and Dr Shen figured out right away my jpouch had been built wrong by a "top doctor" elsewhere.

He immediately disconnected because I was so sick. I felt so much better within one month and started gaining weight even before that. Unfortunatlely I suffered from untreatable horrid diversion pouchitis. So after 15months I had to choose ripout or redo. I chose ripout.

anyways... if your son hasn't seen Dr. Remzi. Get him there. He will take care of him.
best wishes

Hi All,

Had a pretty insane day yesterday. Currently my wife is doing great and has no fever, hemodynamically stable and is on schedule to be discharged tomorrow.

Diagnosis: Severe Adrenal Crisis

Steroids Background: On and off for several years. Last steroid dose was 1mg prednisone 2 weeks before surgery. For surgery they gave her a 3 day course of stress doses and then nothing. Surgeon said that for her, the dose schedule is what is typically used and should cover her adrenals sufficiently.

She presented yesterday morning at the ER 5 days post-op (J-Pouch redo) with fever, 101.8. She had been discharged on post-op day 3. All tests were negative for infection, however small amount of fluid accumulation in pelvis. Intial CT report was that fluid was not abscess and was not significant. Her white cell count was elevated but was actually a little lower than her post-op discharge. The fluid in her pelvis was not of concern until her fever spiked to 103 degrees. At that point everything changed. Her blood pressure was dropping to 75/40 and pulse at 147. They were withholding pain meds and rushed her to have the fluid drained under guided CT. Horrible procedure with no pain meds laying on stomach.

Fluid from pelvis was removed and no one was impressed. It was a typical fluid that they would expect after surgery. This along with blood was sent for culturing.

Rushed her to Intermediate Care unit and were in process of taking her to ICU. Doc comes and says that nothing is adding up and they think this could all be due to adrenal insufficiency (not enough steroids in system)

They gave her 100mg of hydrocortisone and started IV antibiotics. Within 30 minutes everything began to improve. HR and blood pressure quickly normalized and within 3 hours temperature went to completely normal.

Bottom-line is that she presented as a very dangerous septic patient that was going downhill. At this point (can't confirm until cultures come back) it looks there was never any infection.

Surgeon said that she had never seen this in all her years and is going to consult with endocrinology. Looks like we will be on a very slow steroid taper and will always know that steroids are in play when illness presents.

Will post an update when cultures are finalized, but at this point looks like we will have taught some of the most experienced surgeons in the world that everyones adrenals act differently and the recommendations in the NEJM may need to come with a disclaimer.

Dan

Wow. How scary. So glad to year she has improved and hope she continues as such. I am not sure how often, how high or how long her steroid dosages were, but I was on them chronically also on and off for years prior to surgery, as have my jpouch patients been. If I recall I was at a much higher dose and my steroid taper was over a course of a few months after takedown. Amazing what we learn every day. Best of luck.

Some of your wife's story sounds so familiar to my daughter's experience with her colectomy and jpouch formation surgery. Seemed great for day or so after surgery, then just crashed with low bp and elevated heart rate. To ICU, gave her tons of fluid. She did develop an abscess about 8 days later but we feel her septic like symptoms were from no steroids during surgery after being on and off them for year prior. Docs didn't really discuss and we were so shell shocked we just settled for the answer, "we don't know what caused it". Hope that your wife is getting what she needs and will do just great with a slow taper. Sorry she and you have had to experience such a scary thing.

Dan, sounds like a rough few days. I, like her docs, am at a loss. They did all the right things. They gave her stress steroid doses for the perioperative period. A taper is not typical when she had been off regular steroids for a prolonged period. Many surgeons are now of the opinion that the covering steroids during surgery are not necessary and are "overkill" to prevent the rare adrenal insufficiency up to a year after stopping them. But, her surgeon did give them. I certainly had covering steroids during surgery within the first year, and I felt that the benefit outweighed any minimal potential risk.

I think that the fever was sort of a red herring, since it pointed them toward the notion of sepsis, especially since it continued to rise. In all likelihood, it was a separate issue. Like you mentioned before, it may well be her innate reaction to surgery.

But, when she crashed while all the while there was no evidence of sepsis, adrenal insufficiency is a good suspect. However, the crash scenario with sepsis is similar and they often give steroids for septic shock.

So, I think the jury is still out on this. I also think it is an excellent idea to bring in the endocrine specialist to consult.

The problem is that physiology is so complex that there are any number of things that go wrong to set you on a course of rapid decline. It is not always easy to figure out what set the cascade in motion. Often, the treatment is the same regardless.

You guys have my sympathies. I know exactly what that percutaneous drainage with fluoroscopic guidance is like. Even nearly 2 decades later I remember it like it was yesterday. They had to go in twice because they said my fascia was "extra tough" and would not puncture with the larger drain. I did have an abscess (about the size of a grapefruit), so it was quite tender in there.

The adrenals are interesting glands and they do not react the same in all of us. They are mediated by the pituitary, and it is difficult to tell if you are suppressed, since it does not become apparent until you are under serious stress, like the trauma of surgery. It is not uncommon for individual patients not to follow the rule book!

Jan

pouch4wf - I am sorry about this scare and additional pain.

Liz11 - yes Remzi will do the revision. However when we saw him last week - I did not understand from it would be 3 step, though makes sense.

There is a huge debate going on between our doctors though whether my son really has crohns or not and whether he should go off humira and methotextrate when he is diverted to ostomy. cleveland says yes. Other doctors think stay on the drugs through reconnection no matter how long to be safe and give the reconnection the best chance. And others say do not even go off the drugs indefinitely because my son, while not a classic crohns presentation was so sick and was on TPN with malabsorption until he got on humira. Additionally he has already proved allergic to remicade - so trying to understand, among other things if he goes off humira and needs it again - will he have built up antiodies and then be without a medicine. The new med coming out , Vedilozumabob (sp?) is likely not being approved for children yet. (My son is 13).

So while it seems we are getting agreement about pouch disfunction - we do not have agreement yet on best other steps - so we are trying to sort this out and come up with a plan.

I can answer some of your questions. I was on Humira myself for a few years, and even had some surgery while taking it.

First of all, Remicade is a mouse based anti-TNF drug, and that is why so many people develop antibodies against it, causing severe allergic reactions and/or loss of effectiveness. The antibodies are what keeps you from resuming it after a hiatus.

On the other hand, Humira is a fully humanized anti-TNF drug, so the risk of allergy and/or antibody formation is much lower. You can stop it and restart it without concern of antibodies building up and making it ineffective when you stop it for a period.

Humira has a shorter half-life than Remicade, and that is why it needs to be taken more frequently. The bonus is that you can stop it for just a few weeks and have most of the effect out of the system. When I had my adrenalectomy surgery and cardiac procedure for arrhythmia, my doctors were pretty much up in the air about whether I should continue or interrupt my Humira treatment. I decided to stop it two weeks before surgery (I was on weekly dosing), and resume it a week post op. My decision to take a break from it was because I had a history of wound separations and infections.

I had no infections or wound issues. So I was happy. My only problem was post op fevers that turned out to just be a surgery/trauma reaction, as all tests for infection were negative.

So, my thinking is that you can compromise. Have him stay on Humira as long as possible, but stop it for a couple of weeks before surgery. There probably will be enough in his system to avoid a full blown flare, but reduced enough to avoid infections.

Methotrexate is a different story, but I would think a week or two break should be OK.

Jan

Jan- that is very helpful info about the humira antibodies.

The confusion with the humira is that Cleveland doctors think my son could stop the humira for good because they do not believe he has crohns. Doctors who saw my son so sick think it would be dangerous I guess to stop it. Though if antibodies are not such a risk I don't know why we would not try to get him off of it - go for the best scenario..

You raise a whole other issue for us to weigh to re the humira and safety issue with surgery. Thank you for detailing how you dealt with it.

Sure, makes sense to me to try giving it a rest. Plus, with your knowledge of how bad things got, it would be easy to resume it quickly at the first sign of trouble. No need to wait for failure of other meds and going on TPN.

Those guys at Cleveland Clinic REALLY know their stuff and I would trust their judgement. I have never been there myself, but they have done more research on the topic of j-pouches than any other group.

The problem is that there just is not much data out there. Most of what is there does not show much of an effect of these drugs on surgical outcome, but the data is primarily for those with rheumatoid arthritis. Still, the safety profile is pretty good. That was why I just opted for skipping a couple of doses and not completely coming off of my med. But, if the docs at CC don't believe he has Crohn's, then there is something else to think about.


Jan

pouch4wf - How is your wife doing? I hope well. Did you consider a muscetomy? We saw a local surgeon who said that is all he would do for my son>

Hi again Boy's Mom,

My wife is feeling well. She is about 1 month post-op now and has a lot of her energy back. We've been going out, she's been able to take care of our daughter and hopeful that the worst is behind us.

The first 3 weeks post-op were kind of a mess. She still has a pelvic drain in that was treating a "suspected" abscess, but hopefully that will be coming out soon. Wednesday is a big day for us. They will be injecting a die through the drain to make sure that all the plumbing is hooked up leak-free.

Thanks for thinking of us, means a lot,

Dan

Hi Boy's Mom,

Sorry I forgot to answer your question about Mucosectomy.

So, my understanding is that Mucosectomy, the removal of the mucus lining in the 1-2cm of rectal cuff, is only suggested when there is severe disease in that area.

As our surgeon told us, my wife did not have severe "cuffitis", rather she had severe inflammation of a much larger section of rectum that was left behind. It was the large 2-3 inch section of rectum that was the problem and was what needed to be removed, not the very small mucosal cuff. She said that while the mucosectomy could be performed, it is avoided due to the chance of poor functional outcome.

When you said that your surgeon would only do a Mucosectomy, was that because he felt that a pouch redo wasn't necessary? Was too difficult??

Dan

That is great your wife is feeling so much better. Glad to hear.

Right now we are holding off on a redo surgery because it is just too much to go through. The lingering question that doctors disagree on is whether he would be able to get off humira and methotextrate if he had a smaller cuff. He is also chronically on antibiotics for the past year since take down. We saw two surgeons - one would leave some cuff and the other felt it would be too much of a risk to go through redo with the chance he could get cuffitis. Because he is on humira, methotextrate and antibiotics - his cuff, pouch and rectum all look OK right now. Previously he had a very inflamed cuff ( and no one distinguished for us if that was the cuff or the rectum. The doctors also don't agree on whether he needs the methotextrate or not so we are trying to sort that out too.