To J-Pouch Or Not To J-Pouch?

Didn't read all the replys so pardon me if I am repeating. One of the worst feelings in the world is facing every day saying to yourself "I had a wonderful working ostpmy. Why did I have to mess everything up by getting a I pouch. ". To go from being healthy and pain free with an ostpmy, to an absolutely brutal recovery from j pouch surgery, along with cramping, soiling oneself, and no more good sleep about put me over the deep end. I almost committed suicide over the J pouch. Most people do ok with their pouch (although I don't believe at all the success rates they claim) I wouldn't want my worst enemy to have a j pouch. Knowing all that I know about pouches, if one of my underage children had to have a colectomy, no way am I letting them have a j pouch.

Silent, I am biased because i lost all interest in a jpouch after my subtotal cokectomy, but I empathize with being paralyzed by indecision because I went through it agonizingly before that surgery and indeed for several years prior to my surgery. If you like your ostomy, what is it most that makes you agonize over also considering a jpouch? Is it the image thing, the ability to wear tight clothes, or sime abstract fear that you will one day regret not having tried? Trying to help your decision making by drilling down to what it is exactly that makes it a tough decision. My advice would be that if you are wracked with indecision, cancel and reassess in another year or two if you so desire. It sounds to me that you would now be making a hurried decision based on a deadline that is artificial and arbitrary. Just my impression.

I'm not just saying this to be contrary, but I don't believe the success rates for j-pouches for a moment either; a "95% satisfaction rate" sounds almost as believable as a dictator in a third world country who gets 98% of the vote in "free" and "open" elections.

I still remember what my stoma nurse said about the j-pouch patients not doing that great. Don't get me wrong; I know that there are many people who are completely satisfied with their j-pouch. But if you're seriously expecting me to believe that it's as high as 95%, get away with you.

For whatever it's worth, I'm starting to accept my ileo, I think.

@Silent - In my experience, UK GIs literally don't mention surgery, let alone sell it. In 14 years of Crohn's disease I've been to 4 different hospitals. Not one doc flagged up surgery to me at any of them, despite having severe Crohn's colitis for most of that time.

In fact, I was the one who broke down and practically begged my current GI for surgery. I was in hospital for the 3rd time, Remicade hadn't been doing a thing for months, and I was at the end of my tether. At that stage I thought I would be able to have a hemicolectomy. My GI looked as serious as I'd ever seen him and told me, no, it would have to be a full colectomy.

He must have been dreading me asking about surgery, but agreed to refer me to a colorectal surgeon.

Funnily enough, after surgery, he seemed to forget his previous reservations and enthused about how much better I looked. He absolutely was not keen on ileorectal anastomosis (where the ileum is joined to the rectum) when I asked him about it, though. In FAP patients, the functional outcome of IRA is slightly better than the j-pouch, so it isn't like the IRA is an inferior form of surgery to the j-pouch, 'cos it ain't. (Well for UC patients it would be, but not for anyone who didn't have rectal inflammation.)

On the whole, my GI's attempt to scare me off IRA surgery worked. I'm not even sure I'd be a candidate anyway; likely have too much rectal inflammation. But if I were to have reversal surgery, that would be the only possible one.

I still chuckle when I remember the (pro-surgery) US GI who told his patient that if she had lived in the UK, she would have had her colon removed by now instead of being on all these expensive drugs. I was on Remicade for a year and Humira for a few months after that before I ever had a colectomy.

It's just a different culture in the US, I think. Heavy-duty drugs like Humira are advertised on TV, which I find weird: why would anyone advertise a non-OTC treatment? Healthcare is a business in the US; it is everywhere in the world, but more blatantly so in America. Would be interesting to know how surgeons get paid actually; do they get a salary or are they paid per surgery? I know they make a mint no matter how they get paid, even UK ones.

Well, it's no longer a mystery why Humira is advertised on TV!

www.fiercepharma.com/special-reports/10-best-selling-drugs-2013

Look at what's number 1. I'm absolutely amazed that it's all biologics in the top 3: I wouldn't have thought there were that many people suffering from inflammatory conditions like RA and Crohn's, but there must be.

Thanks for the info about surgeon's pay, windy - it was interesting. $600 does seem astonishingly low, especially as I have read some crazy sums about how much j-pouch surgery costs. (Can't remember the figures now, but we're talking tens of thousands of dollars, easily - think it was something like $50K just for a colectomy.)

Looked up UK surgeon salaries. Lower than I thought with an average wage of about £60K, but the senior surgeons earn more like £100-150K. Also many hospital consultants do private work on the side, and top up their income that way.

I'm not sure why there's arguing for and against in this specific thread. If someone is happy with their ostomy bag and they are healthy, I personally see no reason why they should go for the J Pouch.

However, if they are unhappy for whatever reason, then it's worth investigating the other options.

As far as I see, SL seems to be happy with his choice, so I'd stick with that and re-assess in 1-2 years time.

--------------

For me, there are a few things that deters me from permanent bag. First and foremost is the image issue. I don't like to know there is a bag attached to my stomach. Sometimes it could show when you're wearing only a t-shirt and what if I want to walk around or bike shirtless. I'd have to wear some sort of ostomy secret belt to cover it.

In the summer, you can probably start sweating around the whole apparatus. I need to lift heavy things, I believe with the ostomy you're limited in the weight you can lift, I think, I sometimes use my whole stomach area for support when I lift. You're always dependent on ostomy supplies. You wanna go for a 4 week cruise or vacation, you gotta carry your supplies, etc. (Bear in mind that I am comparing a perfectly functioning ostomy system to a perfectly functioning J pouch).

This is some of the aspects. Others are if you are dating. You meet someone and you have to reveal eventually that you have an ostomy bag. That can have an impact on the other person, maybe he or she won't mind, who knows. Society in general aren't so accepting even if we think we should be.

Hard to tell these things, I read this board quite a lot and I've seen post where people were happy to get rid of their bag, others like SL seems happy keeping the bag, so dunno.

Silent Lucidity said...
Somedude; it wasn't a "choice", it was emergency surgery 'cause I probably would have died: when you can't even hold down water, I'm pretty sure you die at some point.
Granted; maybe I've given the wrong impression, but to say I'm "happy" with an ostomy is on par with saying NCOT is doing back flips for hers!
I've made an uneasy peace with it. But as I stated previously, there's this other option that throws in a curve ball, and I'm being literal when I say it's driving me crazy. Two weeks ago my parents dragged me to see a doc as I was having some sort of melt down. He called mental health services as I said I was in need of lock down and heavy sedation.
So, believe it or not, it turns out that in the UK, if you're not threatening suicide, you're not high risk enough to spend time on a Psych ward!
Even though I told the doc I was thinking of jumping from a bridge, when mental health turned up, I said I didn't really mean it (I did) so that was good enough.
I'm sorry to bring that subject up, think it may be against forum rules, but that's the distress this is causing me.
What I really want, is to wind back to 1993, and not start shi**ing my pants with blood, with an eventual diagnosis of UC. However, we don't always get what we want, do we?

Hmm, somehow I was under the impression that you were happy with it (not the "uneasy truce" as you state it.. I dunno what to you tell then, considering what you just wrote, you do have a dilemma in your hands.

There is no one here that can sway your decision either way. If you truly can't completely accept your ostomy at this very moment, it could be unlikely you will accept it later on. However, I concur with Probiotic's suggestion to wait a year. A year later is not that far, but you can get a better idea. If you STILL don't like it then....

Silent Lucidity said...
I may not have the option of waiting a year. I can't afford to pay for the op "privately" (as we say here), and although I have never knocked our NHS system, further surgery for me, is what's referred to as "elective", ie: not urgent or life threatening. Therefore, it has very low priority. I first saw a consultant a year ago, was told it should be done by the end of 2013. Finally got a date for May 21st, that was postponed to June 18.
If I cancel now and "wait a year", I'm getting very close to a J-Pouch being completely unviable, due to lack of strength in the sphincter.
Obviously nobody here has the magic answer, all I was asking for was opinions and advice. Let's face it Somedude, you're never short of either!

Hahaha, true true. And I try to be as candid as possible.

Silent Lucidity said...

Decision would be easier if I hated the ostomy. I'm not enamoured with it, but a lot of the time I forget it's there. It's just the fact that the choice of being a little more "normal" (some don't like that word, but it's the best way I can put it) is tempting. .......................................................What I really want, is to wind back to 1993, and not start shi**ing my pants with blood, with an eventual diagnosis of UC.

This part is interesting because it rings true to me also. The truest of the true, you want to look normal as normal as it can be, you want the J-Pouch. No amount of covering or tricks and such will result in you mentally believing you are 100% normal. I always like to post this video. Look at this guy, as normal as it can be and he has a J pouch. With a J pouch, IF it's perfect J pouch, no issues, you don't even have to mention to NOBODY you ever had a problem. It would be a distant thing in your mind about to be erased with time. Not so with a bag. A bag will always be there to be a constant reminder of things....

www.youtube.com/watch?v=EDoujZ1K8ww

     My colorectal surgeon was not a big advocate for j-pouch either.  He was head of colorectal surgery at the Univ of Pa Hospital, 30 yrs experience and trained at the Cleveland Clinic.  He downright told me I was not a candidate for j-pouch.  Could be that my age at time of surgery was pushing 64, I was prednisone dependent for over 2 yrs, BP was uncontrollable with readings of 216/110 even while on 3 different BP meds and prednisone induced diabetes.  He also wouldn't operate unless I passed a stress echo.  So, with all that to deal with, perhaps, in his professional opinion, I wouldn't make it through three surgeries. 

     Anyhoo....I had to be hospitalized for 11 days, had some post op blips...but that was almost 4 yrs ago and I am alive and kickin.  No UC, no high BP and no diabetes.  Thank you God and Dr. Fry!

I'm going to repeat my suggestion from upthread that you have anal manometry performed. The last thing you want is to go through with pursuing a j-pouch that is going to be a nightmare when you could have known in advance that it was going to be extra challenging with a simple, non-invasive procedure. I don't know much about NHS but if there's any way to do it I would seek it out.

So there is no increased risk of a hernia with weight-lifting? I thought there would be.

Still hanging onto my pipe dream that one day I will get into shape. *shakes head*

Silent Lucidity, given you are in the UK have you been in touch with any of the patient support groups and actually spoken to somebody? Whilst forums like this are fine there is no real substitute for speaking with real people who have been through everything you are going through right now. Groups like IA have trained visitors who they can arrange to speak/meet with you. They can help you organize your own thoughts and so that *you* can decide what is best for you. Unfortunately you have just recently missed two information days where you would have been able to meet a large number of people with a wide range of experience, the next one I know of is not until November now so probably a little late for you now. Pouch surgery is not for everybody but you want to be sure before deciding on any option. That risk of ED exists whether you opt for a pouch or not if your remaining rectum needs to come out (and it almost always does as some point). For what it's worth I had my pouch surgery 12 years ago when I was a similar age to you and have never had a days regret, but that's me and my result is very individual to me.
Good luck with whatever you decide.

Peter.