aka KNKLHEAD
Thanks for your support and input.
However, I'm curious, have you had a J pouch created in the past and reverted back to an ileostomy ?
Yes, I'm an anomaly. Here'w what I had:
1. Temp ileostomy and j-pouch formed.
2. Takedown to j-pouch
3. Redo of temp ileostomy, some procedures to plug up hole(s) in j-pouch.
4. Takedown to j-pouch again
5. Visit to Cleveland Clinic due to infections and obvious leakage, recommend revision surgery.
6. Temp ileostomy that I may convert to permanent OR if I get the guts, another j-pouch revision with the "best j-pouch surgeon in the world," Dr. Remzi.
I hope that makes sense! It's good to feel good again!
1. Temp ileostomy and j-pouch formed.
2. Takedown to j-pouch
3. Redo of temp ileostomy, some procedures to plug up hole(s) in j-pouch.
4. Takedown to j-pouch again
5. Visit to Cleveland Clinic due to infections and obvious leakage, recommend revision surgery.
6. Temp ileostomy that I may convert to permanent OR if I get the guts, another j-pouch revision with the "best j-pouch surgeon in the world," Dr. Remzi.
I hope that makes sense! It's good to feel good again!
Yes, makes sense, however doesn't fill me will confidence. I was actually looking forward to my surgery and life with a j pouch, now I'm not so sure.
Not every J-pouch surgery goes well. Most do. When it doesn't go well, folks often come to this site for support and community. Every kind of surgery can sometimes end up with a poor result. J-pouch surgery is complex, so the skill and experience of the surgeon are very important.
Still not filling me with confidence, especially if such complications can arise during Surgery performed by the best J pouch surgeon in the World.
Regardless of possible complication and the realality of surgery, for those who have already had surgery, I bet your love ones never reminded you of such facts prior to surgery, it's certainly something I dont want to reminded of.
Mind you, you probably wasnt stupid enough to share such details on a web forum.
To think, I was full of vigour and excitement when I posted my update on here, certainly not feeling like that now.
Regardless of possible complication and the realality of surgery, for those who have already had surgery, I bet your love ones never reminded you of such facts prior to surgery, it's certainly something I dont want to reminded of.
Mind you, you probably wasnt stupid enough to share such details on a web forum.
To think, I was full of vigour and excitement when I posted my update on here, certainly not feeling like that now.
It is possible to overthink this. You get into a sensory overload sort of situation, where you simply become paralyzed from making your decisions. The reality is that there are no guarantees, other than the guarantee that your situation will worsen if your decision is to not decide. Sure, you can have unrealistic hopes, but fear can be unrealistic too.
Many people choose to unplug from all the advice and information, and just go with their intuition.
Jan
Many people choose to unplug from all the advice and information, and just go with their intuition.
Jan
Sometimes you have to throw the what ifs out the window and go with the odds which are certainly in your favor. Don't let your decision be ruled by fear.
My apologies! My post was confusing ... my pouch redo if I choose to have it, will be with one of the best surgeons in the world at Cleveland Clinic. That is not to say, however that my surgeon was in any way not up to the task and an excellent surgeon. He's had great success, I think the body I brought "to the table" may not have been as suited as others.
I can still honestly say that I believe I made the right decision to give the J-pouch and shot .. and the fact that I'm still considering going back after all I've been through might also be telling!
I can still honestly say that I believe I made the right decision to give the J-pouch and shot .. and the fact that I'm still considering going back after all I've been through might also be telling!
Hi Strange
Wow sounds like uve made a decision then. I also went through the...am I doing the right thing thoughts and one day feeling very positive about having surgery and the next thinking what the bejeezers am I doing !! Its all completley normal, I agree with Jan too that you can over think things.....I like u did a HUGE amount of research about pouches, success rates, complications etc... then in the end I thought well if I dont opt for a pouch I know that I will always be thinking maybe I should have given it a go....I had no issues living with a loop ileo and I thought at the time If Id had an ileo for longer I think deciding to have a pouch would have been a harder decision..
Theres no denying that pouch training is not for the faint hearted but you have to believe that things will get better, I'd have gladly traded my pouch in for an ileo a few weeks after takedown but now I am soooooo glad that I have a pouch. The first year after takedown was tough, Im generally a positive person but a few weeks post op I found myself feeling quite low and fed up as it felt very reminicent of UC days with the frequency and a bit of urgency...You have to believe though that you will get there, try and stay positive, use forums like this fantastic one and the IA one in the UK ...
One things for sure by going to St Marks you have given yourself the best chance of getting a great pouch, who is your surgeon there ?
My way of coping a few weeks prior to surgery was to do a partial shutdown of my brain and not allow myself to have any deep thoughts about surgery, I stopped reading the help posts on forums and went on auto pilot and kept myself busy....
Take Care
Wow sounds like uve made a decision then. I also went through the...am I doing the right thing thoughts and one day feeling very positive about having surgery and the next thinking what the bejeezers am I doing !! Its all completley normal, I agree with Jan too that you can over think things.....I like u did a HUGE amount of research about pouches, success rates, complications etc... then in the end I thought well if I dont opt for a pouch I know that I will always be thinking maybe I should have given it a go....I had no issues living with a loop ileo and I thought at the time If Id had an ileo for longer I think deciding to have a pouch would have been a harder decision..
Theres no denying that pouch training is not for the faint hearted but you have to believe that things will get better, I'd have gladly traded my pouch in for an ileo a few weeks after takedown but now I am soooooo glad that I have a pouch. The first year after takedown was tough, Im generally a positive person but a few weeks post op I found myself feeling quite low and fed up as it felt very reminicent of UC days with the frequency and a bit of urgency...You have to believe though that you will get there, try and stay positive, use forums like this fantastic one and the IA one in the UK ...
One things for sure by going to St Marks you have given yourself the best chance of getting a great pouch, who is your surgeon there ?
My way of coping a few weeks prior to surgery was to do a partial shutdown of my brain and not allow myself to have any deep thoughts about surgery, I stopped reading the help posts on forums and went on auto pilot and kept myself busy....
Take Care
Hey Monkeyme,
Thanks for your impressive reply and thanks too for your initial reply to my original post.
You provided me with an insight of the options that are available via the NHS.
Yeah and a few others did too, thanks.
Thanks too for everyones messages of support.
Sorry for my delay in responding but I was feeling a little frustrated.
Thanks too, to aka KNKLHEAD for taking the time to provide an explanation.
However, once at St Marks, my Surgeon, although flippant and matter of fact, was very positive in regard to Surgery and life with a J pouch.
I left St Marks still undecided, due to my worries regarding sexual function; but on my Surgeon recommendation, I left with a date/appointment for Surgery.
Also, after that one appointment at St Marks, I left without any unanswered questions.
Yeah, I've thought of a few since, such as type of incision and recovery time etc, but at the time, my focus was on sexual function and frequency of J pouch emptying or whatever it's referred to....
Every question I raised was answered with an answer to my question and without a thorough explanation of an answer to a question I had not actually asked.
I've longed for the day to not have a colostomy bag stuck to my body.
I was advised during my late 20's, that I may need a Stoma and use of a colostomy bag and although in another long term relationship then, the thought of such filled me with dread.
To be honest, my illness has put a strain on all my relationships, although other factor eventually caused the break ups, the thought of adding a colostomy bag to the mix wasn't a prospect I relished.
However, I guess my desire for a J pouch is similar as to why some, if not all, have breasts implants; doing it for my self but for others.
However, it's still a very difficult decision and I've not completely decided; not only due to the risk of impotence etc but also because I've adapted so well to life with an ileostomy.
St Marks is the place to have it done.
I had my stage 1 done there in december last year.
I have medical insurance so will have my stage 2 at a private london hospital but the same surgeon from St Marks
There are 3 surgeons at St Marks that can do this laparoscopically and they are very good
Who is your surgeon?
I had my stage 1 done there in december last year.
I have medical insurance so will have my stage 2 at a private london hospital but the same surgeon from St Marks
There are 3 surgeons at St Marks that can do this laparoscopically and they are very good
Who is your surgeon?
although my surgeon at st marks has advised me there is a 2% to 3% chance of urogenital nerve injury
Now I am confused ?
My original surgeon quoted 10%
Same Hospital and Dept as Shainy and My current surgeon quoted less than 1%..... ?
So, it's begining look like such figures are just plucked out of the air depending on the patients anxiety.
My original surgeon quoted 10%
Same Hospital and Dept as Shainy and My current surgeon quoted less than 1%..... ?
So, it's begining look like such figures are just plucked out of the air depending on the patients anxiety.
maybe there is a 2 to 3 % chance of injury but only 1% chance of permanent damage?
I think in general, nationwide within the UK, there is a 10% risk of temporary nerve damage, although I've not confirmed this.
I read a 2008, UK specific report, posted by forum member, Jan Dollar.
Within the report, if I remember correctly, it was mentioned that the risk of permanent nerve damage and ED was as low as 1 or 2%, which is dependant of the experience of the surgeon.
Since reading the report, I've found all kind of studies, papers and reports and the vast majority, with reference to a Surgeons experience, all state the same percentile.
Prior to my appointment at St Marks, my Consultant informed my Surgeon of my concerns and such concerns formed the majority of conversation with my Surgeon.
It was during this appointment that my Surgeon stated that the risk of ED and nerve damage at St Marks is " less " than 1%.
Such a percentile was also quoted within a letter from my Surgeon to my Consultant, with an emphasis, that I'm worrying unnecessarily.
So, whatever the percentages are, I'm far happier with figure of " less " than 1% than 2%,3% or 10%.
However, as it appears different figures are being quoted by the same hospital and Dept, more questions need to be asked.
Update! update !
Had my J pouch created at St Marks, London UK; currently recoverying and doing well.
Experiencing some soreness to the skin around my loop ileostomy, but thats improved over last couple of days.
My worries in regard to ED was unnecessary and all is working well.
In fact, without sharing too much information, I was aware of nocturnal movement, so to speak, within a few days after surgery.
sounds like you are doing well strange.
do you get any pain/aches around your butt? i was getting that for quite a few weeks but its calmed down now
do you get any pain/aches around your butt? i was getting that for quite a few weeks but its calmed down now
Yeah, I appear to be doing very well.
As for pain, only the sore skin around my Stoma, otherwise none.
I was feeling totally exhausted when standing up, getting out of bed or attempting to do the simplest of duties/chores etc, however that seems to have passed now.
As for pain, only the sore skin around my Stoma, otherwise none.
I was feeling totally exhausted when standing up, getting out of bed or attempting to do the simplest of duties/chores etc, however that seems to have passed now.