laparoscopic surgery dilemma- are there risks with a J-pouch?

I had an adrenalectomy done laparoscopically. I believe that the primary factor regarding your risk is the experience and skill of the laparoscopic surgeon. An excellent surgeon would not dismiss the possibility of a laparoscopic approach just because of presumed adhesions. He would, however, inform you that laparoscopy could revert to an open procedure if there were so many adhesions that he could not safely visualize structures. This is true for any laparoscopic surgery when there has been prior surgery in the area.

Jan

I had a partial nephrectomy (removal of part of the kidney) done laparoscopically. This is a particularly complicated procedure to do laparoscopically, so I had to choose a younger urologist than I might have preferred (the older ones would either remove the whole kidney laparoscopically or do an open procedure for the partial removal). As Jan says, I was warned that if the adhesions from my prior abdominal surgery were too troublesome he might not be able to complete the procedure with the laparoscope. Adhesions can occur with any abdominal surgery, not just a J-pouch.

Thanks to both of you for your replies.

I think they are afraid of both the adhesions - and also for making some kind of damage to the intestines and the pouch in particular. They would be operating in the area of the pouch, so that may be the reason for their concern.

I have been told that it could turn into an open procedure and I guess they would really like to avoid that - and so would I.

As both of you say, the skills of the surgeon are crucial - but it would not be a gastro surgeon but a gynaecologist (obviously). Isn´t the problem often that they simply don´t know enough about a J-pouch and possible problems - or am I being naive here?

My surgeon for the adrenalectomy was not a colorectal surgeon or specifically an expert with j-pouches either. He was a general surgeon, with a special expertise with laparoscopy. Any surgery involving female organs would be involving the area around the j-pouch or the rectum, if you had one. So, anyone needing GYN surgery would have similar issues if there had been prior pelvic surgery.

So, my concerns would be that if your current doctors were hesitant to do the surgery because of worry about your j-pouch, then you either need someone with more experience or they need to consult with your colorectal surgeon. I would not want someone to operate on me who did not have the confidence to proceed.

Are they saying they don't want to do do surgery at all, or just a laparoscopic approach?

Jan

I had a hysterectomy last year and my surgeon wanted to do it laparoscopically. I kept telling him I was afraid of having it done that way and would prefer he just opened me up. Well, he tried to do it laparoscopically and couldn't because of the adhesions. He ended up opening me up along the same scar line as was left from my colectomy. Whew!

I have a k pouch (abdominal pouch with stoma) and have had a lot of open surgeries so when I started having repeat hernias and other pouch related problems I found a general surgeon who was specialised in laporoscopy...he has done 3 on me thus far with success (1 strait hernia repair with removal of a few small adhesions, 1 mix hernia repair + pouch repair and a galbladder + hernias)...I was extremely pleased with the short and long term outcomes...shorter hospital stay, no scars (if you don't count the tiny little stars shaped scars where they went in from) and a very quick recovery time...
The downside? Gas. Mountains of gas. Takes about a week for it to all dissapate..until then you feel like you are going to float away like a hot air baloon.
Sharon

@ Jan:
They are saying they would prefer not to have to do laporascopic surgery basically because they are afraid it would end up in open surgery - and because they are afraid of damaging the intestines and my ovaries.

I have this feeling that it´s because they think I have been through too much already and they don´t want to risk further "damage".
I tried to contact the surgeon who made my J-pouch 13 years ago today, I will try again tomorrow.

I have this situation when they cannot determine from the scannings if they see liquid IN my fallopian tube or right behind it. 3 different doctors have scanned me now and they say they cannot tell what it is before they have a look inside. Maybe everything is ok - and then why take the risk? But - I´m going through IVF, and if there is liquid in the fallopian tube, that can make it more difficult/impossible to have success with ivf because of leaking liquid.

I have developed cysts during this IVF-proces and they want to remove them IF we decide to go ahead.

I have had the HsG (a test of the "passage" in the fallopian tubes) about 3 years ago and it showed passage - whick makes them think the liquid is not in the fallopian tubes but some liquid as a result of the old scar tissue - but they are not sure.

It´s a huge dilemma for me and I don´t know whether I should take the risk.

Thanks for the input, it´s really helpful.

@ Ceecee - that´s almost the reverse situation!
I guess he insisted trying first because of the quick recovery time, as SKN69 mentions?

@ SKN69: What a story...
Yes, the positive side is definitely the short recovery time.
I had a hysteroscopy just one week ago and I have had a quick recovery compared to most examinations/operations I have had (it IS a minor exam but my body usually reacts with inflammation every time they do open surgery (or after egg retrieval during IVF). The thought of a long recovery period is not appealing!!

As for the gas - that doesn´t sound comfortable at all!!!

@ Jan - you are right - I also don´t want someone operating on me who is not feeling confident about it! I should try to understand who the experts are over here.

@Solaris
I'm now facing what you were facing and I wondered what you decided. I have a j-pouch, but recently got really sick due to hydrosalphinx, fluid in my fallopian tubes - they need to do surgery because otherwise I will just face getting ill again and again, but they are worried because of all the adhesions that they won't be able to get to my tubes because they are so close to the pouch. I can't go back to an ileostomy. Any advice gratefully received. Thank you

There's a world of difference between "I might not be able to complete the procedure laparoscopically" versus "I might destroy part of you." The first one is reasonable, and applies to anyone having a second abdominal surgery. You simply might wake up with a bigger scar and a longer recovery time, and must have contingency plans. The second one is unacceptable, and probably calls for a more carefully selected surgeon.

@ POPSY: I'm sorry to hear you are facing surgery. I talked to the surgeon who made my J-Pouch and he said that of course they cannot know what they find when doing lab. surgery but if the gyn. advices me do it, I should go ahead. As he said: A lot of people have had to get lab. surgery even though they have had extensive abdominal surgery. So far, several gyn. have had a look, and if possible at all, they prefer to do the surgery until after a pregnancy (I'm still hoping that it will happen, still going through IVF). That's because the cysts are in the ovaries. As for the fluid they think is in the left fallopian tube, they are still hesitant to do surgery because they say that as long as there are no symptoms of it (liquid coming out in larger quantities every now and then), then they will not operate. As my surgeon said: Just make sure that it will be a surgeon who feels confident enough to do it - get the best that there is!!! Please let me know how it all turns out and best of luck.

@Solaris
Thank you so much. I'll let you know how I get on. My surgeons said the same about it's best not to operate until there are symptoms and avoid surgery at all costs. Then unfortunately I got ill, but it was further complicated with blood clots. Right now, I'm on 6 weeks of 3 antibiotics in preparation. I'll face anything but I can't accept going back to an ileostomy. It just didn't suit me, I was constantly unwell with it and I've been so happy with my wonderful pouch, which I have to say out of everything that's going wrong, it's still working really well. Huge luck with your IVF, I'll be thinking of you and wishing success.

@Scott F
Yes, you are right, very wise words. I wouldn't mind bigger scars or longer recovery time, but I don't want my pouch destroyed. I'd love to know if anyone had multiple adhesions but still had successful surgery to remove tubes (and/or ovaries)...

I had an ovary and fallopian tube removed about 10 years after having my j-pouch. I guess I was lucky in that the GYN/oncologist wanted to be sure that my j-pouch surgeon would be working that day when he performed the surgery "just in case". It made me feel a whole lot better, I can tell you that! The procedure was done laparoscopically but I was told afterwards that he came really close to opening me up because of all the scar tissue. Now, 8 years later, it looks like I might lose my other ovary & tube.
I would definitely make sure my j-pouch surgeon is around if I need another surgery.
C-jay

@C-jay
Thank you so so much for writing that. It is really comforting to hear that you had successful laparoscopic surgery on your ovary and fallopian tubes without it compromising your pouch and after 8 years and all the scar tissue. That gives me great hope. I am so sorry that you face surgery to your other ovary and tube. Was the first surgery on the side of your pouch?
Popsy

Popsy, I am not sure what you mean by "on the side of my pouch". I have a J-pouch, which I presume is pretty much well centred in my pelvic cavity. I never had an ostomy (in case that was what you were referring to)as my j-pouch surgery was a one-step.
Still have tons of scar tissue though,as noted by the surgeon who removed my ovary and tubes.
As if we didn't have enough to deal with already, right?

Good luck!
C-jay

Dear C-jay, oh yes you are right, I did mean on my ostomy side. I had a temporary ileostomy for a while and this in on my right hand side. I think you had a really great surgeon. I'm going to tell my surgeon about your experience, as you have lots of scar tissue and adhesions like me. I feel like I need to give him confidence! He's worried he will damage my pouch with the surgery. It's not that he's not a brilliant surgeon. he is, he just knows how much my pouch means to me and over the years I've had the craziest complications including a broken hip, broken back, pyoderma gangrenosa, lots of DVTs including a clot in my Superior Mesenteric Vein last week, and osteoporosis - along with the hydrosalpinx are the highlights. So he sees me as difficult and hence he's unsure. I really couldn't go back to ileostomy. But equally I need the surgery to avoid getting ill again in the future. Like you say we have enough to deal with. Thanks so much for your advice, hugely appreciated. Best wishes to you too. Popsy

I had my gall bladder out,, adhesions removed, and just recently a liver cyst removed all lapro. No problems with the pouch. I'm up to about 19 holes now, lol

@AllyKat
Oh my word. It's also good how you've got over so much pouchitis. And I didn't know you could just have adhesion surgery. I'm so glad your liver surgery went well. It's great encouragement to me to hear that you had laparoscopic surgery with the adhesions and no problems with your pouch. Phew! Best Wishes, Popsy

My docs have been monitoring an unidentified cyst/tumor/whatever for about 4 years now. No one is sure what it is, but all are pretty sure there is no cancer. I am just so terrified of losing my pouch that I have avoided surgery. It is a bit reassuring to know a lot of us have had abdominal surgery successfully, but I still plan to avoid it unless I have no choice.

@ Allykat: You sure have been through a lot, I´m sorry to hear that - and glad to know you have had successful surgery. Best of luck to you

@KTA: I really do get the fact that you just don´t want to lose your pouch - neither do I! I have kind of the same situation: They can see cysts, they are not sure what is it - it´s a stressful situation. Good luck to you as well.

CJB: That was a great idea to do surgery on a day your pouch surgeon was at work. Just means a lot to go into surgery feeling a bit more "safe". They are still considering doing surgery on me since I´m still not pregnant - I just hope a miracle will happen anytime soon (please!).
Fingers crossed for you!

Solairs,

I am so lucky because my j-pouch surgeon doesn't like the idea of people opening me up when she is not around. She thinks of it as "her" pouch too. It is comforting.

C-Jay

@kta
I am exactly the same, the terror of losing my pouch, it's eVERrything to me. I spent a year and a half with an ileostomy and bag and it was the worst time in my life. I struggle keeping weight on, I was like an old woman with broken hip and back as well, and the bag kept falling off constantly. Not only that, I was constantly nauseus and getting water infections. Since the reversal (I think you call it takedown?) it's like life re-started and now a year into living 'normally', with more weight and finally healthier, they are now definitely saying I need surgery again. I got a letter yesterday, it will happen in 6 weeks. Like CJB, my surgeon is very personally invested in my pouch, as I had lots and lots of complications over the years, so he is saying that he is worried that even though he and the gynae would be in the surgery, they are not miracle workers. I am very scared. But having said that, this post has really helped me, like to you say it's very reassuring to know that so many of us have had abdominal surgery successfully, even with the adhesions. I wish you all the best and hope you can always avoid surgery. I too have cysts and they say they can stay, it's the tubes they want. Thank you everyone, you are all so brave and you give me strenght. Best wishes Popsy.

@ CJB: What a nice surgeon you have - I love it when doctors are like that! My surgeon said to me, whilst I was discussing the "should we go in or shouldn´t we" topic, that there is nothing he would like more than being present WHEN I get pregnant (!), when making the C-section (sometimes they are present so if complications should occur, the have a specialist there). As he said "That would be such a beautiful way to kind of end the circle with you - to put your baby in your arms would be so beautiful!". He made me cry, he has been such a big support for me when it all happened.

Popsy: Best of luck to you, I have my fingers crossed. Let us know how it went. xxxxx

Bless you Solaris. I will let you know in a few weeks. But in the meantime, I wish you soo much luck in your IVF and I said a little prayer for last night. Your message above made me tear up a bit too, I think you have some wonderful people around you hoping for the miracle you deserve.I'm crossing everything and more xxx

@ Popsy: Thank you, that is so nice and sweet of you, I got so touched when I read it that it made me cry! 4 years of struggling so far, just hoping so much we will be blessed with a child. I send you all the good energy I can, and keep my fingers crossed for you. Bless you xxx