Jeanne, by sinus, do you mean a fistula?  I have no idea how they develop.  I just know that my son has one with an abscess.  And it is extremely painful.  

I'm not sure what the report means. I'm waiting for cd w images and report.  I was having extreme anal pain from anal stricture.  My pouch is just shot from chtonic pouchitis.  I have had mri's before and never this finding.  What are they doing to help your son? 

Just my experience. 

Had it removed 5 months ago. 

Tired of all of it.  Pain... Dr's... Tests... Done.. Done.. Done. 

And happy to be done with that end.  I don't miss it at all! 

Have not felt this good in decades! 

Now that's just me.  

Richard 

Thanks Richard.  Did you have the same issues? I'm feeling the same way. So tired of drugs, tests, dioctirs,endless money and feeling horrible.  

my first pouch in 2008 I developed an ecoli infection that pretty much killed me. I spent 10 weeks in hospital. several open wounds they had to keep cutting and cleaning out, I had a leak at the anastomosis. finally after recovering had my takedown about 4 months later, I dealt with cuffitis, and mild pouchitis before Dr Shen found a sinus. He did the needle/knife procedure several times that were working. The sinus actually led back into my small loop of bowel so not a huge concern. Then a few years later I started getting lower back pains and on next scope Shen found a leak in the tip of the jpouch. He tried several endoscopic procedures by using a bear claw to close it.Both failed. I started getting sharp zaps down my legs and it was found the leak was leaking into my spinal column and had spinal infection so i went back to an ileostomy.He tried a fairly new experimental procedure called an endostitch, but the scope was too rigid and could not get to that area to repair so ended up having surgery that failed as well. then several months later Shen tried a procedure endoscopicaly with a Fibrin glue to close the hole but had difficulty with the glue drying up to fast before he could get it all at the hole. So I consulted with Remzi to make a decision to redo or remove. He said all my issues were mechanical and he felt confident he could make me a functioning pouch. I agreed. In October 2015 had the redo and all went well.Long difficult surgery that was over 8 hours long. He also did the mucousectomy which worried be due to incontineance. I spent 9 days in hospital and I was back to work part time in 4 weeks. On March of this year I had my takedown and spent 5 days. after day 2 I had a slight blockage at connection sight due to swelling from surgery which is common,but it cleared. For the next few weeks I dealt with really bad external hemorrhoids I think were caused from the horrible gas I had and I was pushing too much to expel it. It took some time but they are better. Then about 2 1/2 weeks ago I woke up with horrible abdominal pains and went to ER, CT scan revealed severe inflammation 20cm above the ileostomy connection site. It is uncommon for this in that area so they are not sure what caused it. I spend 2 days in hospital on antibiotics and it got better enough for me to leave. Then last weekout of nowhere I went to toilet and had a very bloody bowel movement. The next day barely any blood , and now the past 4 days or so there has been no blood at all. I believe it is an internal hemorrhoid. They checked for stricture in anal area when I was there and stated it was fine. I still get a slight pinch in anal canal especially when going to bathroom, but not an extreme pain so I doubt fissure. I still have that pain in my side, but its a dull crampy pain, especially after eating a lot. My guess is I still have some inflammation in that area. I scheduled a scope with Shen this Thursday just to get things checked out to make sure nothing bad is going on. The CT showed no leaks or anything of that nature which is good.

and I too was very worried about incontinence because I was leaking mass amounts of mucous from my butt and sometimes wasn't even aware of it, since being hooked up I keep a small gauze pad pressed up against my anus and I having a small spot of stool a little bigger than a pencil eraser after several hours. not too bad I guess. I just change it when I go to bathroom. my average is 5-6 times a day

Thank you poucho. I am sending prayers the new pouch will work or you. Please keep us posted.

I am not sure I have the courage to endure all you have. Dr, Remzi did not even offer the needle knife for me as Dr. Shen was not there when he did my EUA last week. He recommended perm ostomy or temp ostomy for 6 months and complete pouch redo with mucosectomy and hand sewn pouch. 

I went from a surgeon at Yale (and my GI) who felt confident I have no crohn's feeling both could help me with a strictureplasty and advancing the pouch and restapling it,  to zero hope to save my pouch due to mechanical issues and possible crohn's question. Dr Remzi does not want to deal with restapling pouch etc he feels it would make his life more difficult to extract the pouch and create a new one if I choose to do this..

I  have no fistulas, but sinus and anastomsis stricture leading to chronic pouchitis...still waiting to find out whether sinus is in presacral space or in the pouch itself. I have lots of,upper left sided pain even on 1000 mg of Cipro for 10 days and often endure tailbone pain. The anal issues (fissures)  have subsided since recent dilation but I do have narrowing of the anal canal. 

what exactly is difference between a sinus and a fistula? cuz sometimes my sinus was referred to as a fistula..

I wish I knew.  My sinus is in the presscral  area and I have no leakage from it per Se.  

A fistula connects two (or more) things, and has at least two openings (one at each end). A sinus has one opening, sort of a "blind alley."

Scott

what causes a sinus? Is this where stool leaks into the presactal space with a tiny leak at anastomosis?  I can't seem to get answers from my surgeon other than 'what does it matter'. He feels corrections to my eexiting Jpouch  as is, is futile due to stricture and sinus. 

Jeanne, so sorry you are going through all of this.  You asked what they were doing next for Jeffrey.  He is having exploratory surgery on May 12th. I think that the surgeon is thinking about glue if possible.  Otherwise it's TPN for a few weeks and back to a tempory ostomy.  I'm not sure how much he can handle. Or me for that matter.  I'm just plain worn out.  

Dianne

jeane posted:

Thanks Richard.  Did you have the same issues? I'm feeling the same way. So tired of drugs, tests, dioctirs,endless money and feeling horrible.  

I didn't have issues with a sinus or fistula.  But the seemingly endless tests.... Dr's... Fatigue... . All the pain and worry. And no answers to what was going on was enough.  I couldn't physically or mentally do it any longer.  It was slowly killing me.  Now I am getting my health and mind back because it's all gone.  And I don't miss it.  I have a bag but it is so much easier for me to go in a bag.  No pain.. No meds... No Dr's... No stress.  This is just my experience.  I didn't expect my self to adjust so fast but I did.  I am in a good place.  I don't even think about it.  Most times I forget I'm even wearing it.  No big deal now. 

My pouch was healthy.  Just never works and all the time I had it... Two plus years... It was worse than the UC.  Way worse. 

Richard. 

I'm so sorry Dianne. I know how awful this is when things don't go as hoped.  It is so hard as a patent to see our child suffer and  you wish you could trade places. I'll keep him in my ptayers. So young to be going through all of this.  

Thank you Richard. I keep thinking of all the money I will save medically and no more doctors ( I hope). If adjusting to the ostomy is that easy then it's time.  I'm mentally and physically worn out and have lost five years of living since I had this pouch that has never worked right from the start.  At 53, I don't have five more years to waste.  I'm thankful for the inspiration from others on this board. 

My surgein has bee gently persuading me and I appreciate his honesty and candor. 

jeane posted:

Scott

what causes a sinus? Is this where stool leaks into the presactal space with a tiny leak at anastomosis?  I can't seem to get answers from my surgeon other than 'what does it matter'. He feels corrections to my eexiting Jpouch  as is, is futile due to stricture and sinus. 

Jeane-

According to Bo Shen, "Pouch sinus is typically a later presentation of an initial anastomotic leak." So a sinus can indeed develop from a leak.

jeane posted:

I'm so sorry Dianne. I know how awful this is when things don't go as hoped.  It is so hard as a patent to see our child suffer and  you wish you could trade places. I'll keep him in my ptayers. So young to be going through all of this.  

Thank you Richard. I keep thinking of all the money I will save medically and no more doctors ( I hope). If adjusting to the ostomy is that easy then it's time.  I'm mentally and physically worn out and have lost five years of living since I had this pouch that has never worked right from the start.  At 53, I don't have five more years to waste.  I'm thankful for the inspiration from others on this board. 

My surgein has bee gently persuading me and I appreciate his honesty and candor.

My surgeon did the same but I lingered.  She never pushed me into it.  She knew I would come around eventually.  

I will be 60 next month and time was a huge factor. 

Did I want to waste more time.  Nope. 

Even with the short time I had the pouch I was tired of all of it.  No... I didn't want an Ostomy.  But either I just keep living in misery as my family watches or get myself fixed for whatever time I have left on this earth.  No.. I am not in love with a bag.  But I adjusted quick.  I surprise myself everyday with it.  I know now why my pouch didn't work.  

I put so much through my bag.... No way was my pouch accepting it.  Only way I can put it.   

Richard 

Yes RIshard, 

It seems when I  barely eat, I can function with the pouch, but I love all kinds of food, especially fruits and vegetables. I think many of my issues were surgically related. The pouch may have worked if I did not have those initial issues that have just dragged on and on.   I am guessing you also had a lot of pain, pouchitis, difficulty emptying the pouch etc etc etc.  Guilt does play a big factor also when your spouse is well and you feel awful for continually putting them through all of this nonsense and they feel helpless at the same time. I was hoping to get to at least 60 with my pouch, knowing if I had to unload it then, it would not seem so bad (don't ask me why).  The constant antibiotics scare me and that is the only way I can even manage these days with all my issues. 

I never had pouchitis.  I had a healthy pouch.  Just flat out didn't work.  20 percent of Pouches do not work.  No rhyme or reason.  Just don't work and I was one unfortunately. 

Now that I have the ileo my appetite is voracious.  I eat anything  and seem hungry even after a meal.  I find that to be a big perk.  I love to eat.... And I didn't realize how much I missed it.  I love food.  

I look at pictures of my self from just six months ago around Christmas and I looked like death walking.  No more.  I am steadily gaining instead of losing weight.  

I personally could not be happier with my outcome.  

I never thought I would be in the place I am now..... 

Richard. 

Wow..that is amazing. I always thought a healthy pouch would not give someone so many issues. So glad you are feeling better and enjoying life!!! 

I had many scopes.  Nothing was wrong and no explanation.  I know.  Weird.  

Richard, your doctor was using sloppy language by describing your pouch as "healthy." Something about its construction was defective, or a defect developed later, though the defect(s) weren't visible on pouchoscopy. You made a perfectly reasonable decision to get your health back without a definitive explanation, but there's just about always an explanation. Finding out what's causing the failure can be difficult, expensive, and time consuming, and fixing it is sometimes impossible (but more often difficult, expensive, and time consuming). Pouchoscopy is only one of many ways of trying to work out the problem. We each have to live within our limits.

You hit the nail on the head Scott. 

Time consuming.  But there is two more things.  The pain and uncertainty of going to appointments and doing tests while your condition is bad shape.  Which brings me to your health and state of mind while trying to find out what it is that's not working.  It can kill you while doing this.  I was down to. 128 pounds.  My body was telling me something.  Of course this is all individual.  Just my case.  And I did make the right decision to get it out.  

I had a group of surgeons and even saw two surgeon 's outside of their group.  I did not get any answers.  Couldn't find anything that would not keep it from working properly. I was miserable all the time while doing this.   I just couldn't keep going.  I was working full time.  And going through all this.  It was a lot. 

I had to work.  So I had to get better and better fast and this was the answer.  I considered my age... 60 next month.... And how long I would have to live this way.  If I were 40 I would have thought different.  But I'm  not.  I actually felt like an 80 year old man.  I wasn't ready for that.  

But as I said it is an option.  I can compare a loop to an end ileo.  I've had both.  An end ileo is so much different and easy to take care of.  You see going into this I was thinking it was going to be like an loop ileo.  I was wrong.  I had so many blockages with a loop I was dreading the end ileo.  For nothing.  I can eat anything with it.  I have had it five months and have not had a problem at all with it.  I go in for checkups but she has.. Surgeon... Not even seen it since I was in the hospital. No reason to.  I have a staple coming out.  But it's not affecting it.  I consider myself very fortunate.  I know people have had dreadful experiences with an end ileo.  I cruised though it and have adapted very quickly.  I had to.  It's what I have now and if I didn't come to terms with it that would only make it worse. 

It's a long road for anyone going through any of this.  It a miserable road.  And I can sympathize with you and all who are going through it.  But there is a way out and it should not be considered the way I see it spoke in here. 

Of course no one wants a bag.  No one wants a pouch that does not work.  It is all terrible that we have to go through this. 

Good statement Scott.  Thank you for your insight and advice to me and others.  This sight is very important to many.  Me included. 

Richard.