Peace and prayers. Keep us updated..

Jeffsmom,

 

So sorry things aren't improving. Fistulas can unfortunately be very slow to heal. I wish you had better news to share with us, but I agree, it may be time for the pouch to go if there is absolutely no improvement. Jeffrey needs to have some better quality of life back - removing the pouch may possibly be a move toward that. Sending goods thoughts your way.

I'm so sorry, but is it great that you read the results before you can get hold of a doctor. I'm being sarcastic. Do you at least have any follow ups booked?

Ally yes and no. We have a pouchoscopy next week with Bosworth and a barium on the 30th with shurukla or however u spell it!  I may have one of my doctor friends read it for me and explain further. But either way its not good

GI fistulas in IBD folks are notoriously, NOTORIOUSLY hard to heal.

A fistula becomes "part" of you, so your body sees no urgency to make it go away. It just reads it as part of your GI tract. My fistula isn't big, but left alone without intervention, it'll never, ever just disappear.

Add IBD in the mix, and it's even worse for us.

Certain fistulas can exist, yet give little issue. Abscesses, though, need intervention with draining, generally.

I feel your pain, I really, really I do, but I'm not surprised from some personal and nursing experience. Hope they have some new info for you!

Rachel, I still don't understand why they can't remove it, the abscess, and close up the micro tear in the pouch.  oh, there is also possible pouchitis.  thisnis part of the report.  Can someone explain?

 

 

No definite communication with the lumen is seen, but the
collection immediately abuts the 
anastomosis and such a communication be excluded on MRI

I of course am not a surgeon, but GI abscesses often leave fistulas, and they're just evil and difficult to eradicate. Doesn't mean some can't be treated successfully, but they're often involved and complicated.

I constantly yell at my colorectal surgeons that we can go into a woman's uterus and micro-surgically repair a hole in a baby heart, but we can't fix GI fistulas with much more than medical treatments created thousands of years ago?!  Madness!!

"No definite communication with the lumen" most likely means they couldn't trace a definite path (leak or fistula) from the collection to the pouch, but an MRI may reveal it, most likely at the anastomosis. 

Scott, what is anastomoses ?  And does this mean the fistulia when away?  They why is the fluid collection still there?  I tried to copy the entire report but was having a hard time.  Oh, God I hope that damn leak healed, that would be such great news!

 

dianne

Rachel, yea, why is that?  That's got to be much more complicated that this!

 

can someone translate this for me.  I follow must of it, but the more I read it, the more confused I get.  

Findings:

I wish there was something that I could explain to you Jeffsmom.  Hopefully Scott will know more as he is a man, I'm not as familiar with male parts as I am female ones. Hopefully you can discuss this with one of his doctors tomorrow.  I hate it when they spread tests over so much time and leave us wondering what is wrong.

Thanks for posting the whole report - it's now a bit clearer. The anastomosis is the circular "seam" where the pouch is attached to the rectal cuff. That seam sometimes leaks or can be where a fistula starts. They're saying that they see what looks like an abscess right next to that seam. Even though they can't see a leak at the seam, they are saying there may well be one anyway, and it might still be open (they didn't see that, though, so it's a best guess). The abscess had to come from somewhere.

Scott, thank you.  what about the rest of the report, like the prostate thing.  So does he have another leak in that thing? Because he has a micro tear somewhere not on a seam.  They think it is in the back of the pouch not visible. When prior studies have been done, they have seen the fistula, don't know where it is connected.  Fluid goes into the pouch on a fistulagram, but on a pouchoscopy, nothing leaks.  Go figure.

 

Hope all is well with you. Thanks for your help 

d

The report does describe evidence of pouchitis, which you probably already knew. The prostate information sounds like irrelevant noise you should pay no attention to, IMO. It's almost certainly of no importance, and you have much bigger things to address than focusing on an incidental finding like that.

 

Here's an example: A few years ago I had a chest CT scan for a problem that eventually turned out to be asthma. The bottom of the CT scan happened to capture the tops of my kidneys, and they saw a mass as an "incidental finding" (something they weren't looking for). Based on the way it looked on CT it was deemed "suspicious," and I went on to have kidney surgery to remove what looked like a serious cancer. After the surgery, the pathologist reported that the mass was completely benign. The surgery was the best choice once they knew about the mass, but in this case I would have been better off if they had never seen it in the first place! Some incidental findings are important, but I don't think this prostate observation is one of them.

Jeffsmom:

 

There appears to be an abscess right behind the anastamosis (what Scott explained). Pouchitis as you know. Inflammation is happening probably due to both of these.

The prostate is likely completely normal. The T2 thing sounds more like MRI zoning issues vs anatomical issues. If you're really interested, next time I'm in MRI with a patient, I'll ask the MRI nurse and tech.

Thank you everyone.  Your input has been a relief.  How the hell do you get pouchitis when you don't even have a working pouch!  I just hope they can fix this!  Jeffrey is fighting g tooth and nail to get this ostomy reversed and is willing to do just about anything to do so.  Next week he goes in for a pouchoscopy.  

 

Thanks again!

you can get whats called "diversion pouchitis". Its caused from having no fecal stream into the jpouch. I just saw Shen for this issue a month ago. Started bleeding from the butt pretty good. He knew what is was before he got in there. Sprayed dextrose in there and plugged me up. said it will clear up in 2 days and it did. Sometimes it can happen every now and then, or it can become chronic. Only way to fix it if chronic is to reconnect the jpouch or remove it. Iwill find out next friday when i have my barium xray if Shens fibrin glue procedure worked to try and close my jpouch leak. He didnt get as much glue to the area cuz it was drying up before he got most of it there, therefore not feeling very confident at all.

Poucho, thank you! Thank you!  I can't believe all this stuff is going on with my son.  He can't cut a break!  We were going to see Dr. Dietz in Cleveland.  I was told he was the fix it guy.  Now I'm hearing a lot about Dr. Shen.  Because of the PSC we need to stay at Weill Cornell.  But Jeff and I decided that if Dr. Shulka with the help of Dr. Milsome can not fix this pouch then we are going to go to Cleveland.  Who is better at the fix it stuff?  My surgeon in NJ was going to try the glue stuff.  His other thought because we can't find the leak, was going to go in with a wire (along with interventional radiology) and then get the glue in that spot.  But this sounds like a new leak.  I'm thinking that maybe the old leak dried up. But it sounds like there is either the original fistulia and a new abscess or and new fistulia and new abscess.  Which for the life of me have no idea how that could happen since he has been diverted since March.  I just wish one thing would go right!

 

thanks again.

I don't know what is best but have a question, maybe you know Poucho.  Everything that Dr. Shen or other GIs do to repair j-pouches can probably be done by a C/R surgeon.  The difference being that there is anesthesia and the procedure might be more invasive, thus leading to other problems.  I don't know if I would be able to have these GI procedures over and over again.  A while back someone was talking about Dr. Shen doing a sinus procedure to make it part of the pouch.  I'm probably not explaining this well enough. I think the procedure didn't work so they operated.  

 

I'm glad I'm not in your place Jeffsmom.  He's an adult but needs you.  No matter how old they become they are still our babies.  Please take care of yourself too.

 

Pouchomarx, I think you are a trailblazer.  I would be too scared to allow these cutting edge procedures do be performed on me.   Good Luck

Thanks Marie!  I wish I wasn't in my shoes either!  Of course even when I take my shoes off .....  My luck I'd step on a reclusive spider or a nail!

 

i don't know how. Ugh more Jeff can handle.  He is exhausted.  This nonsense has been going on for 14 months.  We are all so exahusted as you can understand.   

Lol...thanks. That post was probably me. I have a sinus that Shen performed 3 procedures I think, its called needle/knife therapy. He opens up the end of sinus into the the pouch so nothing can get trapped in the sinus and get infected. That procedure was a success. And Shen attempted a new never done procedure with a special tool called an Endo stitch that they have used for upper endoscopy procedures. I had like 20 people from the manufacturer and other medical people there as well. My surgeon was there on standby too. Well apparently the endo stitch tool was not flexible enough for the jpouch and it went very wrong. My surgeon took over and cut me open and ran a suture just under the tip of the jpouch where my leak is, hoping to close the leaky tip off. I went in for scope 6 weeks later i think and Shen ran a wire into that area and it was found that the hole/leak was still there. Said the tissue was probably too friable and the suture did not take. Fast foreward like 8 months later and the Fibrin glue procedure was attempted by Shen. Concern was the glue might start to freeze up before it got to the leak. It had to run through a long cathetar and the scope. Shen stated he only got about 1 cc to the leak, he wanted a lot more though. I go for barium xray next friday to see if it worked or not. Not feeling good about it though. Shen said hes looking into another type of glue that they use for vein bleeds and will look into further if this fibrin did not work. In the meantime, I have a consult with the best pouch surgeon in country at Cleve Clinic, Dr Remzi on the 27th of this month. I want him to look at my history and issues and get his opinion on all this. I know he will probably want to try and redo it or remove it, is my guess. I almost died from original surgery in 2008 from complications and infections and spent 10 weeks in hospital. I am not a good healer apparently. I honestly dont want to go through of trying another jpouch. If no hope left i guess i will have it removed and go perm ostomy. But i will put off as long as I can. I dont have the financials or time off from work to have it done. I told Cleveland Clinic that I will be their guinea pig and i will try anything at this point. Not only do I want to be fixed but maybe i can help others down the road as well. If only these experimental procedures were done for free.. lol

Pouchoscopy, keep in touch with me and let me know what happens.  I most likely will end up out there, but a redo is not an option for Jeffrey.  He doesn't have enough length and mesentary.  Good luck to you!

 

I hope that your pouch is fixed and can be reconnected Poucho!  At least you know you have great doctors working on it.  No second guessing about them.  I thought it might be you with the sinus procedure but I get us mixed up every now and then. Please let us know how everything turns out. 

Question. Meow is Dr. Shen as apples to Dr. Dietz For pouch repairs?

im just planning ahead.  

Thanks for your opinions .

Dr. Shen is a gastroenterologist and focuses on the least invasive approach.

Dr. Deitz is a colorectal surgeon, so cutting is his bag.

 

The idea is to try less invasive repairs before opting for surgery.

 

They really are not comparable because they do different things (like trying to compare a cardiologist, who does cardiac cath repairs, to a cardiac surgeon, who does open heart surgery).

 

Jan

Thanks Jan. Jeffs pouch sounds like it is kind of messed up with this leak. I dont know if its the original one or a new one. And how could he develop an abscess if the jpouch is shut down.   When he went into surgery in March, the fistulia was still there but the abscess had collaped on its self but then again he had the drain in. Im so confused!

Even if the pouch diverted it is still exposed to contamination, just not as much.

 

I had a leak post op (presumably) that sealed up on its own, but a huge abscess developed within a month. There are numerous factors that go into whether these things resolve or simmer and fester. It could be inadequate circulation, ongoing IBD inflammation, undetected infections, reactions to suture/staple materials, etc.

 

The main thing is that the longer it goes on, the more difficult it is to deal with.

 

Jan

Jan,

I know the difference between a GI and Surgeon. I was suggesting that maybe Dr. Shen was trying to do procedures that could be taken care of by a surgeon.  I'm having a balloon dilation Tuesday, by my GI, who is going assess if it need to be done under anesthesia by a surgeon.  That's what I meant and I'm sorry if I gave anyone the impression that the two disciplines were either/or.  A lot of people continue with the surgeons after their surgeries for problems. For example it was my surgeon that first treated me for cuffitis.  There are overlapping areas where both can help.  

No problemo, TE.

 

I was specifically responding to JeffsMom's inquiry about Dr. Shen's vs. Dr. Dietz' repair approaches. They are in the same system and I believe Dr. Shen does the balloon dilations, needle-knife and clamp procedures as part of his endoscopic approach. Drs. Dietz, Remzi, and the others do the surgical pouch reconstructions, advancements, and more "cutting" type procedures. There could be some overlap there, but probably not much, for efficiency's sake.

 

Jan

Dr. Shen is pioneering new approaches, like trying to fix pouchomarx's leak with a glue.  That's what I was getting to.  Some of us, like pouchomarx, are braver than I am!  Some times we don't have a choice but be brave.  I remember someone telling me that if she had to get an ileostomy that visiting nurses would have to come and change it for her all the time. She was making one of those faces like "disgusting".  I didn't bother telling her about emptying it 5 times a day.

Marie my surgeon in NJ wanted to try glue also but he really doesn't have the experience. It would have been a first time for him.  He had a couple of good ideas that I think Cleveland may already be doing.  I know we are going to end up there, but the transplant team in NY wants us to stay there.  With Jeffrey's latest diagnosis, it complicates everything that much more.

 

 

Poucho could tell you.  I don't think Dr. Shen has had a lot of experience with it either. For all we know these two GI's brain stormed together about it.  We don't hear about the social side of these doctors.  They aren't encapsulated at different hospitals They go to medical conditions and am sure speak at some of them.  I watched a good presentation on U-Tube by the CC surgeon, I forget his name - might be Remzi, he is mentioned on here a lot.