Everything you say is true, right up to your pointabout the outcome being the same. Either the studies you read were very old, or they were not in regard to those with UC. I believe all modern data indicates IRA is not a good choice for UC. It is only if Crohn's is suspected and if there has been rectal sparing of disease (not drug induced remission in the rectum). Every person here who had UC, opted for an IRA, later had to have another surgery for proctectomy.

But, if you are seriously adverse to IPPA,then I guess IRA is better than the alternative... I just think you're kidding yourself thinking it will work out.

Jan

To be honest, I don't believe so much it would work; perhaps, the new medicines, biologic (humira, infliximab and so on) can preserve the rectum, but there are no studies for Ulcerative Colitis; there are for Crohn's:
https://www.ecco-ibd.eu/public...ract-s/item/189.html you can see that, for Crohn's colitis, people who had ileorectal (IRA) will keep the rectum, and only 7% will need an ostomy.

The study I refer is this: http://www.ncbi.nlm.nih.gov/pubmed/20013930

I also read that young women who want have childs, can perform IRA; make children, then have IPAA, and see probably if they go to IRA with UC, it's always better than nothing (than keeping the entire colon disease);

I feel that, being IPAA so attractive and succesful, at least if we believe to stats (95% success rate), noone considers IRA, and so we've got no statistics today for IRA.

We must keep in mind that the treatments are improved nowadays, so, what in the past could be worse, perhaps, today, is good or acceptable.

I was prepared to go for IRA as at first, they said I had Crohn's, and the J-Pouch is controindicated in that case (although someone go for it); my doctor, I don't know if he joked me, said that I could have a good life with IRA although I had a diseased rectum, as rectum would have rested for 8 months, and then I could have treated with local steroids (they are not bad as sistemic), suppositories, and perhaps other treatments.

Nevertheless, I think I'll opt for IPAA as everyone do nowadays. Yes, it's in a way more complicated and more demolitive, but, quality of life seems to be good, if not excellent, and perhaps you have to be much unlucky to fail a pouch if you had Ulcerative Colitis.

Yes, if you notice, the study was small, and clearly indicated that it was for "select" patients. I just read an article the other day that stated that new medical treatments have reduced the rate of colectomy, but IPPA remains the gold standard if colectomy is required.

In regard to women who opt for IRA for their childbearing years, it is with the understanding that removal of the rectum would eventually be necessary. Lesser of two evils I suppose...

Good luck, I know it is not an easy decision to go forward with surgery, with no guarantees of success.

Jan

Thanks!
I wait for people who eventually got IRA.

My daughter has UC and has not had surgery yet. A few years ago we lived in Italy and were referred for a surgical consult by her pediatric GI. The surgeon was very in favour of the IRA as he felt, as you were told, that his patients who have had this as opposed to the jpouch have better control/continence and less frequency. He said the same thing - colectomy, wait, check rectum and then decide. Control the rectum with the enemas etc. We later moved to North America and the surgeon here said no IRA for UC absolutely (even though she is a child and some surgeons do perform them on children instead of jpouches). The reason is the rectum is always the most diseased and if you are in bad enough state to warrant surgery it's very unlikely you'll be able to control the rectal disease. Anyway, that's just our experience - I wonder if we saw your surgeon as it sounds very familiar.

I think there will be little response from UC people that have had an IRA. The protocol just doesnt call for it in the US. I am not sure you are wrong if you go that route, there just isn't much data. That surgery is more common for colon cancer patients, but not always successful even with them. Do you have an ostomy now?

The additional surgeries are nothing to take lightly and while everything looks "good on paper" every extra surgery is a risky business.
Frankly the 95% success rate is a pretty relative number in my opinion, it probably refers to the number of pouches that are eventually excised. Some people do really well, most do OK by adapting to their pouches, for some of us it just doesnt work. Many people stick with badly functioning pouches because they just cant stand the thought of an ostomy. This site is no indication of success rate because most people here have problems.

Here is the link to the full article for the second link posted. It better explains the pitfalls and drawbacks to the IRA for UC and the need for careful patient selection. Very few have rectal sparing, and if you do, it is more likely to be Crohn's.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134806/

Jan

When you were waiting the j-pouch surgery, were you a bit afraid of the technical difficulties of the surgery? That is, at the moment, my major concern. I don't know if it's a trivial concern, but considering the work they have to do into my bowel, I'm a bit afraid of the possible outcome. I am not saying I don't trust my surgeon, he appears, and says, he's enough experienced; but, considering the difficulties, I always suppose something technical could go wrong, and there's only a chance for a succesful j-pouch surgery; the IRA is simplier, that's the reason I have those doubts.

Noone of you had those thoughts, when was scheduled for j-pouch surgery?

I was so damn sick that I didn't give a hoot what the outcome of the j pouch surgery was. That's how bad I was. I just knew I wanted my diseased colon out of me. I was literally losing my mind. Thank goodness it all worked out well.

In my opinion, I would ditch the rectum as well. Chances of you being disease free are much better in your favor that way.

Sure, I had my worries, but like many others, once I made the decision to pull the trigger and have surgery, I wanted it done yesterday! My greater concerns were of NOT having surgery, as I had been actively bleeding for six months, very anemic, weak, and exhausted from 30 bowel movements a day.

To be honest, IRA was not offered to me as a choice, but I can't imagine considering keeping my rectum at that time. On scope it looked like raw hamburger, and that was on 80mg of prednisone, and using hydrocortisone and mesalamine enemas.

So by the time surgery was my best option, it was j-pouch or ileostomy, and I just hoped for the best while preparing for the worst. My surgeon gave me detailed information about possible complications, including nerve damage. I had plenty of complications, but my nerves are intact. The newer surgical techniques preserve the nerves.

My thinking is that it is easier for the surgeon to do that rectal dissection early, rather than years or decades later, because scar tissue sets in and can complicate it later on.

Jan

I recall that IRA is more often successful when the surgery is performed on young children. Members here who've opted for the IRA have had problems and then converted to another pouching system.

As you mentioned, you could try the IRA and see if you're satisfied with it. If it doesn't work you could probably go to a j-pouch or ostomy. However, nothing is guaranteed and multiple surgeries aren't always the best thing.

There's a member here from Italy who now lives in the United States. You might want to PM him. His name is emi73. He has a j-pouch and he's now a doctor. He might be able to offer some good advice.

kathy

thanks to all, you were very nice in detailing your feelings at the time of surgery.
I feel I'm more and more convinced towards the j-pouch route.

Kathy, great advise, good to know there are italian pals here.

I echo Marianne's words. I was so damn sick I didn't care anymore and wanted surgery.

Then, 2 weeksbefore my 1st surgery, my surgeon calls me and said he cannot do the surgery because of how much blood I lost. He said the pre-testing showed I lost a lot of blood based on my blood count, I think that is what he said. I went into a state of panic and asked, now how much longer do I have to wait? I am tired of waiting and I have already prepared myself for this mentally. I told him that right now, I am not living, just existing, and at this point, I would even welcome my own death as I am so exhausted from living this way.

He calmed me down and said I would have to have a blood transfusion and I had to bring some relatives and friends to do this for me prior to my surgery.

Anyway, I had a transfusion of two pints of blood. I had UC for over 8 years and the only mistake I made was I waited too long. Oh there were times where I felt better, but the longer I waited, the frequency of feeling rotten increased and lasted longer each time.

Rocket

Ok, but what about your surgeon esteem?
You looked for a particular surgeon, or trusted the surgeon that the convenience (hospital, your ge., etc.) selected for you?

As I said, I'm quite convinced my surgeon is great. He made j-pouches from years. But who knows, it's not just a matter of how many pouches the surgeon has done. it's also a matter of quality, and who knows if he makes good quality and functional pouches?

Ikh,

That is a great question, but one I am unable to answer because I am not familar with where to go in Italy.

There are many on this site who could recommend hospitals and doctors throughout the United States. I wish I could give you better advice but I just don't know which surgeon or hospital I can direct you to.

My only advice to you is if you are not comforatable with your surgeon, then you will have to search the website and get as much information as you can. Jan Dollar gave you some great advice so you have a lot to think about.

What part of Italy are you from? My father was born in Lioni which is in the province of Avellino, about 1 1/2 hours east of Naples and my mother is a first generation Italain American whose parents are from Avelino. So I guess that makes me a Napoltano.

Rocco

If you have the luxury of being able to shop around for a top surgeon, I recommend it. For me, I was too sick to even pretend to want to do it, and living in the San Francisco Bay Area probably gave me options I did not know about. Still, my Kaiser coverage was somewhat limited to Kaiser doctors, and at the time, there was only one doing it in my area. I could have requested second opinions from other providers, but that would have wasted time I didn't really have. I felt lucky that the surgeon available to me was confident, well liked by his peers (and the nurses too!), gave personal attention to his patients, even calling at home to check on me. But, he was not a rock star in the surgical world, just a guy doing his job, and doing it well.

Still, if you do have that luxury, it is perfectly reasonable to ask for a second opinion, especially if you think it might make you feel better about your surgical decision. You can ask your GI or nurses for who they would recommend for their family (usually a good place to start). Otherwise, if you have confidence in the skill of your surgeon, you should be OK. Having the best surgeon in the world will not guarantee your outcome, but it does help reduce your risk for complications.

I would think that the total number of procedures done is less important than how frequently a procedure is done, meaning current skills are better than a very old surgeon who has racked up a number of procedures, but seldom actually performing surgery any more.

It sounds like you are in pretty good hands!

Good luck!

Jan

rocket, to be honest, I'm quite informed about the surgeon panoramics here in Italy.
My surgeon is not in the top #2 rank, but I have read a few nice references on the web, but just one for ulcerative colits, a man said he was operated for j-pouch at my hospital, and, although he didn't mention his name, there's only a man tho makes j-pouch in my hospital and he's him. He already cut me once (mine is a three-steps surgery) and I like him, he appears very self confident. For sure, he doesn't have a huge advertisement in our ibd-communities, but it doesn't necessarily mean he's worse than the top #2.

Moreover, if I'd change my surgeon, I should wait months and months for the second step, and I'd have to move far, while my surgeon is located near to me.

So, I definitely would like to give the maximum trust to my surgeon. But, knowing myself, I'm anxious and I feel this as the most important thing could happen in my life, so I'm a bit doubtful about, just because I have not numbers, and although I could ask for numbers, I don't think they'd tell me if their success rate is under 95% (or worse). When they thought it was Crohn's and advised me the IRA, they always (and perhaps right) was positive about the good success of the surgery. But, in reality, perhaps it was not so sure I would have felt well after IRA. So the words of the people who will cure you, are not perfectly objective.

PS: I know Avellino but never been there. My origins are southern Italy but live in the deepest North.

Jan, it seems you described my surgeon
And also, the nurses and peers feelings about him. He's a kind person, he have lunches together with the nurses, but self confident and professional. I also like the nurses. I generally loved my first experience in the department.

I say the truth, your surgeon description had the power to make me calm about mine.

Sometimes I think having time to ponder all of this is more of a curse than a blessing. You could perhaps get a second opinion, without actually signing up with another surgeon. The wait should not be that long for a second opinion consultation. But, it does not sound like you are anxious about which surgery to choose and if the current plan is appropriate, but wanting the best possible outcome to the j-pouch.

That is a perfectly reasonable concern and I really do not know how to help you get around it, other than to trust your instincts with your current surgeon. The fact that you have already established a rapport with him and know first hand about his skill and bedside manner goes a long way. The main thing is to have faith in him and your ability to weather what may come your way. If you go into a major surgery with doubts or negativity, even minor mishaps will take on a more ominous tone and you'll feel like you were cheated.

Nobody, and I mean NOBODY, comes out of j-pouch surgery feeling like it was a day at the beach and their troubles are forever over. There will be challenges, disappointments, and surprises. Hopefully, there will be pleasant surprises, that it was easier than you expected. But, if you prepare for trouble, it does not blind-side you. Stuff happens, and it does not mean your surgeon was lousy.

Jan

Jan, that are good words, honestly. And I agree with you.
I'm not so sure about what my worries are. The main fear is that the j-pouch will fail during the surgery. In some sort, I think this is a stupid worry, but I have it.
I'm already aware about every other aspect of the post-surgery, the fact you will have to wait for some good result, and the risks right after the surgery (and I'm sure my department is much prepared).
I'm too much afraid of having a permanent ileostomy, maybe that is the problem; I don't say I live bad with it, but definitely would like not to see it anymore in my life.

Maybe asking your surgeon's office for a few referrals to patients he has performed j-pouches on would be good for you. Sure, they are not going to give you names of failures (if there are any), but do you really want to talk to them anyway? But, talk to people who went through this with your surgeon and are living their lives well and without their ostomy. Maybe that will ease your mind and give you some peace going into the operating room!

Even with the best surgeon in the world, we all get cold feet, because there is no going back, once you do this. But, you already have your colon out, so you are half-way there...

Ciao!

Jan

I have a question regarding the possible success of this surgery.

My surgeon in the past told me that there's a chance you have a too short space for creating a pouch; that's not the same of having a short small bowel, he said that you can have a long small bowel, but it could be impossible to perform the pouch; do you know many people which had this complication, and how is it managed then?

Having still the rectum do you think (it's a question I'll ask to my surgeon when I'll see him in about a month) he can evaluate this unreachability and if impossible to switch to the IRA? It would be so frustrated to have to have a permanent ileostomy if they are not able to do the pouch.

Ikh,

I have had my jpouch since 1994. Then had a major bowel obstruction in 1999 which was caused by 32 inches of small bowel was gangrene. That should have killed me.

While its true that I lost a lot of my small bowel, and food does travel a lot faster, yet I am able to hold it in longer, and I do have my ups and downs, especially when I get pouchits, I still function a lot better now then when I had Ulcerative Colits.

So you see, I lost quite a bit of my small bowel but have to admit I don't want to loose anymore.

Well, in America is 11:00 pm and I have to get up and go to work.

Buonanotte,

Rocco

Ikh, what you are talking about is mesenteric reach. It is not about the length of your small bowel, but the reach of your mesenteric blood supply. It is mostly an issue for men, because of the narrow and deep pelvis, and those with a long trunk. The good news is that it is pretty rare, but your surgeon was right to point out the risk.

If it is an issue there are work arounds in most cases. Having a short mesenteric reach can compromise the connection at the anus (anastomosis), as it it is fairly critical for the anastomosis to not have any tension. There are some surgical techniques for lengthening the mesentery. If that does not work, if there is little tension, the waiting time with the diverting ileostomy can give some stretch. If that is not feasible, then the other option is the s-pouch, which has a bit longer outlet limb.

The downside is that he won't know for sure until he is in there and trying to construct the pouch. Very few wind up with ileostomy as the only option.

Hope that helps.

Jan

Thanks Rocco, you're words are nice; but did you have a fear for a permanent ostomy where you decided for the surgery?

Jan, that's a grea tnews!
Yes I am a male, but to say the truth, I have the shortest trunk in earth, I'm serious, I think my abdomen is much shorter than other men. I hope this is anatomically good for having a good surgery.

PS: they already measured my small bowel, it's 520 cm (centimeters) long. I probably have a long bowel, but a short abdomen than the average.

Ikh,

I think everyone on this board has gone through fear, I mean after all, it is major surgery and the fear of having complications does enter your mind.

I had my first surgery, that was in Sept, 1993 when I was about 38 years old. I was diagnosed with UC back in 1985.

I could no longer function in any capacity having Ulcerative Colits. By the end, I must have had a bowel movement at least 18 to 20 times a day. Nights were the worst. I would get up so many times during the night, yet I had to work full time. I was exhausted. I would wake up, take a shower, sit back down beause I was so exhausted loosing so much blood. I could pretty much function at work for about 3 hours and that was it. By Noon, I felt like a boxer who got his bell rung. My legs felt like rubber as they would wobble when I tried to walk.

Yes I did think of a Permanent Ostomy and that is something I did not want. But I knew I could no longer live like I was. I wasn't living, I was existing.

That is the question I think we all ask. Can I live the way I am now or how much more can I tolerate? By the time I had my colon removed, even prior to go in for surgery, I felt that to live like I had been was so terrible, that even my own death would have been a relief so I did not have to suffer any more. When I say suffer, I don't mean pain. Pain is pain, but suffering is in the mind and I wanted this to end ASAP.

Prior to my surgery, I told my surgeon that I did not want to live with a bag the rest of my life. I would hate that and said that would make me look like a freak. My surgeon was a great and had a great bedside manner. He told me that many people live with a bag and they don't consider themselves freaks and said its all up here (pointing to his brain). He said living with a bag is better then what you have to go through. He had been telling me to have surgery for a little over a year before I actually decided to have it done.

Caio

Rocco

Oh, yes, you're so right, Rocco.
I had 11 horrible years, when I was barely surviving.
I didn't have so copious blood losses, apart last november, and about 8-10 bm per day;
But I lived almost 100% of the time at home and when I went out, I was so afraid of accidents I couldn't enjoy it.
So, I definitely need surgery.
My fears are almost all because of the fact I still have a rectum and would prefer to keep the rectum if can't make a j-pouch; but living with j-pouch, provided you don't have complications.
But it's a matter of my surgeon; I'll have to discuss those matters with him. : -)

quote:

Ikh, what you are talking about is mesenteric reach. It is not about the length of your small bowel, but the reach of your mesenteric blood supply. It is mostly an issue for men, because of the narrow and deep pelvis, and those with a long trunk. The good news is that it is pretty rare, but your surgeon was right to point out the risk.

[quote]Reply  

Yes this happened to me and not to rain on your parade having a visually short trunk doesnt really save you. I look normal 5-10 and actually have a short abdomen but apparently have a long and narrow pelvic area. This is a big reason why my pouch failed the surgery was 12 hours and the first pouch died during surgery (the pouch needs its own blood supply) and the second one was tilted and in tension. I was given 50/50 chance it would work. It didnt work well. It is pretty uncommon so I wouldnt worry too much about it
 

sorry to hear that.
so have you got an ileostomy?

Yes, as of Dec 13 I had the pouch excised, it had been disconnected in July. My experience: a good end ileostomy far better then a poorly functioning J pouch.

It's nice what you say and I feel it's true, but, unfortunately, as a single young male I feel I'd have too many psychological problems in having a permanent ostomy. Probably, if my situation were different, I'd accept it easier.

hi,
I just saw the post.i am from italy too and my pouch was made in Perugia.I am happy with it.My retto was so sick that I did'nt have much choice.Where are you going to do the pouch? If you want you could email me so we can write in italian .ciao

Yes the psychology involved with having an ostomy can be hard to accept. You seem a good candidate for a J pouch or IRA so I would probably go for it, particularly given your age. Good luck

thanks, chiromancer.
mari60, I just answered you.

Just thought I'd say I know a guy who had IRA when he was 9, he's now 30 and hasn't had the Jpouch done yet, but has poor quality of life, doesn't eat all day for fear of soiling himself, his specialist has told him to have the Jpouch, but he's terrified of hospitals so doesn't, it worked fine for him as a child, now he needs more done, the jpouch does give you a 'resovoir' so slows down output, whereas he now has a straight connection to the rectum, if this is what you mean for yourself, the Jpouch is the better option, my rectum as too diseased to keep anyway, Heather

Heather, thanks for your message.
Yes, each and every studies I've found, tell us the j-pouch is better than the ileo-rectal, but the difference is that a pouch is supposed to have the same function as the rectum, so, if you still have a functioning rectum (which is not much my case, I should continue to treat it), the pouch is useless. So it's correct to make an IRA instead of the pouch, you don't need it if you keep the rectum. The problem is the functioning of the rectum.

Yes my rectum was completely useless, full of ulceration, the whole colon was the same, and 10 days away from a major hemmorage. I go into hospital on Thursday, still trying to put right the botched bloody procedure done in Jan 09, here's hoping its put right this time, but I don't hold out any hope for that. Dont blame you for not wanting the illeo, I hated it, the whole thing was horrible, and getting rid of it was great, even with everything I've gone thru with the cock-ups by the specialist, I still wouldn't go back, good luck to you, Heather

All the very, very best Heather. I hope everything gets sorted out exactly perfectly.

kathy

best wishes, heather!