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Posted 12/22/2015 12:10 PM (GMT -5)

notsosicklygirl said...

It's not a guarantee that you will have a good result. It is a roll of the dice in some ways. All you can hope for is that you're in the 90% with a satisfactory result & 90% isn't too bad a chance. If you could make a million dollars for a jump off a bridge with a 90% chance of survival, would you take it? I probably wouldn't. just saying... 90% sounds like a lot but being in the 10% is also quite possible.

There isn't much of back-up plan of jumping off of a bridge, with my j-pouch I can always go back to an ostomy. After living with an ostomy it something that I could do again. Do I want to go through more surgeries? No, but I will if I have to and I'll have no regrets about it.
Posted 12/22/2015 12:37 PM (GMT -5)

NiceCupOfTea said...

ks1905 said...
It's always the same tired rhetoric with you; because someone says that they are happy with their surgeries you pick a fight with them and tell them that they are overstating everything.

I'm not picking a fight; you said a few days ago you were on cipro and augmentin.

Single antibiotics have never worked for me, I've always had to use 2 types of antibiotics at a time (combo) and rotate them every couple of weeks so they don't lose their effectiveness. Right now I am on Cipro and Augmentin, which is the best combo for me.

Those are your words, not mine.

I don't know how long you've been on Cimzia for; all I know is you've had Cimzia listed in your sig for weeks, maybe even months by now. I naturally assumed that by "meds working", you meant sulfasalazine and Cimzia: I didn't know that you were waiting to go on Stelara. You have probably mentioned it, in which case I genuinely missed that post of yours.

At least it's clearer to me why you are taking the antibiotics now; thank you.

If we are talking about my signature then I also have this in it above my current meds
"Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be"

This is my opinion of my pouchitis; I might have had surgery sooner if I knew that pouchitis wasn't nearly as bad as I thought it would be.

I will change my signature per your suggestion. I have gone through the loading doses of Cimzia and it gives me the same side-effects as Humira, Simponi and Remicade (only after I was on it for almost 5 years) of Peripheral Neuropathy. So I am looking to change to Stelara; I can always go back to antibiotics.
Posted 12/22/2015 12:49 PM (GMT -5)

NiceCupOfTea said...

ByeByeUC said...
Contrary to what the above poster believes, it's not a lottery on whether you have a good outcome or not. That's just ridiculous to say. If that were the case, the procedure would not be performed. It does indeed have a high success rate. I don't know or care what the exact percentage is. I have talked to so many people who have undergone this procedure and are happy. That's what I go by....not some statistic on a web site.

Of course it's a lottery.

I've never been in a lottery with 90+% odds of success or positive outcomes.

I think it is misrepresenting and offensive to call this a lottery, there is no winning or losing with this; these are people's lives. It is also borderline fear-mongering with the lottery reference.
Posted 12/22/2015 1:02 PM (GMT -5)
I think there's a lot of good information in this thread from both sides. I'll see if I can writeup something in the Resources thread that's at the top of the forum. Surgery is a common question and having a resource to point to would be beneficial.
Posted 12/22/2015 1:45 PM (GMT -5)
I agree with Keith. Calling it a lottery infers your results are up to pure chance when there are ways to mitigate risk, like choosing an experienced CR surgeon at a top facility. When I made the decision to have surgery, I did not feel like I was "rolling the dice"; instead, I felt I was making the best decision for my overall health and well being.
Posted 12/22/2015 1:55 PM (GMT -5)

atwoodt said...
I agree with Keith. Calling it a lottery infers your results are up to pure chance when there are ways to mitigate risk, like choosing an experienced CR surgeon at a top facility. When I made the decision to have surgery, I did not feel like I was "rolling the dice"; instead, I felt I was making the best decision for my overall health and well being.

These threads always get so side-tracked, unfortunately it takes until the 30th post on this thread for someone to point out the best ways to improve your outcome for surgery and that is to find the best surgeon available at a top hospital. Some of the vocal critics of surgery that actually j-pouches have mechanical issues which "could be" the result of their surgeon's inexperience or fault...I am only saying "could be".

I'd also add that the healthier that you are the better your recovery time and experience will be. I had to have a 3-step surgery because I was so sick and my surgery had to be open instead of laparoscopic.

You can minimize the chances of pouchitis by using a good probiotic after your reconnection.
Posted 12/22/2015 2:00 PM (GMT -5)

ks1905 said...
I think it is misrepresenting and offensive to call this a lottery, there is no winning or losing with this; these are people's lives. It is also borderline fear-mongering with the lottery reference.

There's success and failure, which to my mind is pretty much the same thing as winning and losing. I'm making absolutely no value judgements here. Nobody's a better person for 'winning', any more than they are a worse person for 'losing': For whatever it's worth, I class myself as a loser in this particular "lottery" - or whatever you would prefer it to be called.

atwoodt said...
Calling it a lottery infers your results are up to pure chance when there are ways to mitigate risk, like choosing an experienced CR surgeon at a top facility.

Experienced gamblers can most certainly increase their odds of winning. But we're always being told that 95% of people are happy with the outcome of j-pouch surgery. Does this include the entire j-pouch population or only those who were able to choose the best possible surgeons, etc.?
Posted 12/22/2015 7:21 PM (GMT -5)
^I've mentioned this before but I'll mention it again: that 95% satisfaction rate was a stat from the Cleaveland clinic for their patients in that facilty only. I believe it's more accurately around 90% for the bigger picture. Still great odds for a good outcome.
Posted 12/22/2015 7:45 PM (GMT -5)

NiceCupOfTea said...

Experienced gamblers can most certainly increase their odds of winning.

So if we take your gambling analogy then everyone should be having surgery since the 90-95% odds (that you dispute), even if it was 80% that would be much higher than any other UC treatments on the market right now. So any rational gambler would have surgery to increase their chances of winning this supposed lottery.

Your lottery/gambling metaphor sucks and is ridiculous.

I stand behind what I said earlier "I think it is misrepresenting and offensive to call this a lottery, there is no winning or losing with this; these are people's lives. It is also borderline fear-mongering with the lottery reference."
Posted 12/22/2015 7:55 PM (GMT -5)

ByeByeUC said...
^I've mentioned this before but I'll mention it again: that 95% satisfaction rate was a stat from the Cleaveland clinic for their patients in that facilty only. I believe it's more accurately around 90% for the bigger picture. Still great odds for a good outcome.

My PCP is also a GI and he told me that out of all of his J-pouch patients (8 patients), that the patients who have pouches due to Cancer like their pouches the least because of their increased frequency which they are not use to. With UC it was never the frequency that bothered me as much as it was the urgency (same with OP) and maybe that is why most patients with J-pouches due to UC mostly like pouches; I do not have urgency with my pouch.
Posted 12/22/2015 8:36 PM (GMT -5)
I went a lot when I was flaring, but when I was in remission, I only went once a day. I felt like I would never get remission again so the decision to have surgery made sense for me. If I had any hope of getting back to 1x a day, I would take that over a pouch in a heartbeat. I don't particularly like going to the bathroom all the time. I like it better than going a lot + urgency, but I'd prefer neither. The one really amazing thing about surgery, that you don't get with remission, is the ability to be free of medication and free of a future of uncertainly. Those are 2 things I am very thankful for. They make the extra toilet trips worth it for me.
Posted 12/22/2015 8:37 PM (GMT -5)
Yeah, these kind of posts do go sideways sometimes but as long as we remain respectful to each other and our opinions, this won't get locked.

There are always going to be Pros and Cons to any surgery. Heck I just had tear duct surgery and 2 out of 10 patient stories were successes, the other 8 were horror stories. I'm just glad to be 3 out 10 for successes. We never truly know what our future holds. We don't have crystal balls to predict our outcome.

But when considering surgery you have to weigh your quality of life. If you have tried every med out there and nothing is working, if you're a shut in or have no social life then it might be time to consider surgery. We all take chances on a daily basis and who knows? Maybe your surgery will be a happy ending and maybe it won't. Surgery is such a personal decision and regardless of what people say here on the forum, it is YOUR choice. Read all the information, learn and then decide.
Posted 12/22/2015 8:48 PM (GMT -5)
Firstly,

the most important thing is to get off of steroids, consider seeing a specialist who deals with this as it will be difficult the end of your taper will yield bad side effects but you need to get off as those are very bad for you.

Secondly, if you have been on entyvio for a year and have not seen any response whatsoever than it is time to move on. if you have seen some initial improvement than adjusting frequency and or dosage is in order.

you seem to have given a lot of effort and hard work.

remicade has been a lifesaver for me, although it was my first anti-tnf and you already tried humira.
there is also simponi which is given injections much like humira.

there are many trials for stelara (or other medications) i just know that there are many centers all over the world that are doing clinical trials as it is being conducted by the pharmaceutical company. it is also clear that stelara is safe as it has been used for other medical conditions, they just need to establish its efficacy in IBD.

lastly, surgery is not a bad option. it will most likely help remove you from the throes of ulcerative colitis. and having a good surgeon is key. you do not need to opt with a pouch, you can see how you deal with your illeostomy and decide if you want a pouch formed.

I would seek a second opinion for a GI becuase you have been on steroids for so long, its possible transitioning to gut specific ones and than off of them may help with your taper but I am not a doctor and I dont have enough experience to say that

good luck and update us
Posted 12/22/2015 9:21 PM (GMT -5)
I am not sure how to add value to this conversation, as our case is just one more story. But it is a journey that was well documented on this site...tried everything; had the 3 step pouch and a return to the living. Really...living. We had a day back in clinic today, and I choked up just being there, what a wild ride this year was. It's one year since step 2- a rotten loop illeo , a depressed daughter and another surgery looming. But within weeks, she returned to health. I am thankful for the experienced team she used (today reminded me) that competence matters. Seek a skilled surgeon, get all the answers you can in advance, don't be too sick going in, don't be pred dependent w/ lots of damage. Do get clarification on the exact nature of your IBD, how deep, where exactly and how biopsied. There are new ways to understand it annually. Ok, a tall order and one that is not possible for everyone, but I believe it all counts in making the right decision. My daughter's BM's are at about 6, no urgency,no meds except Lotromin, and she is back in school. Chief complaint is gas. Overall, add one to the happy side of the ledger.
Posted 12/22/2015 9:57 PM (GMT -5)

ks1905 said...
Your lottery/gambling metaphor sucks and is ridiculous.

I obviously offended you somehow, but just as you stand by your opinion so it is I stand by mine.

When you tell me why some people have bad outcomes and others don't, then I'll consider changing my mind. Until then I'm content to carry on using the word 'lottery' to describe surgery outcomes until we know far, far, far more than we currently do.
Posted 12/23/2015 9:55 AM (GMT -5)
NCOT,

I'll explain why some have a better outcome then others and perhaps we can put this to rest. There are three factors that determine success; the surgeon's skill, the patient's diagnosis, the patient's physiology.

It's extremely important to surgeon shop for this surgery. Did you know that this surgery is in the top 10 of most complex? Did you know that arteries have to be recreated? Did you know that one small misstep in the procedure can make for a patient to be permanently incontinent? I always recommend that patient's seek the most qualified surgeon, the one who has performed hundreds of these surgeries, even if it means one has to travel. It's like shopping for anything else, wouldn't you want the best lawyer, contractor, or any other professional, for the job needed? But you would be surprised by the number of people I have met who have just settled with the local surgeon who may have done 1 or 2 procedures.......and then wind up disappointed in the outcome.

The patient's diagnosis is tricky. There is no 100% proof positive test to differentiate between UC and Crohn's. This surgery does not fare well for Crohn's patients as the disease persists. All of us who have had jpouch surgery for UC will live under a cloud that our diagnosis may change in the future. My GI swore that I had Crohn's. My surgeon, after reviewing my case history, was convinced I had UC. I was also convinced I had UC so I went ahead with surgery.

Lastly the patient's physiology is important, yet this is something that is mostly not understood until AFTER surgery. If one's body is prone to making scar tissue, the patient will have life long problems with adhesions. There is no doctor or surgeon that can determine which patients will suffer post surgery.

So yes, you can better your results if you get a top surgeon, are willing to travel to find one, and understand that your diagnosis might change in the future.

Sue
Posted 12/23/2015 2:55 PM (GMT -5)
Not everyone has access to the top surgeons in the country. Even if every single American could see a top dollar surgeon in a top dollar clinic, what do you suppose would eventually happen? The incredibly experienced surgeons would retire and the new surgeons would have to gain experience by operating on hundreds of people first.

The chances of Crohn's developing in the j-pouch after surgery are relatively low (about 5% iirc) and don't account for the majority of disappointing outcomes that I read about.

Scar tissue/adhesions - well, you're just confirming it's a matter of luck, which is what I've been saying all along.

I don't really know how much having an incredibly experienced surgeon matters in this kind of thing. You all tell me it matters, so I presume it does to a certain extent. On the other hand, it's no guarantee and every other factor - known and unknown - is clearly down to luck.
Posted 12/23/2015 3:55 PM (GMT -5)

NiceCupOfTea said...
Not everyone has access to the top surgeons in the country.

You only get one body and go around in this life. You make it a point to go the best. Nothing is more important than your health.
Posted 12/23/2015 5:42 PM (GMT -5)
According to my GI, the surgeon is the #1 factor in dictating a good result. There has to be some truth to it, like plastic surgeons for instance, you don't want to get rhinoplasty by someone who has done 10 of them. The one who's done 1000s is going to do a better job. Same with any job really. The more you do something, the better you are at that job, the more well equipped you are to handle issues as they arise. Barring your own personal situation, if you go to the best, at least you've done everything within your ability to push the chances of a good result in your favor. Of course, if you get pouchitis or something, that's probably your particular anatomy or your IBD and I don't think there is anything that can be done to prevent that :( I am a worrier, if I went to someone who wasn't GREAT, if something happened, I would forever blame that decision on the problem.
Posted 12/23/2015 6:54 PM (GMT -5)

ByeByeUC said...
You only get one body and go around in this life. You make it a point to go the best. Nothing is more important than your health.

Obviously have never heard of surgeons or hospitals turning people away because they don't have the 'right' insurance.

Oh I get it. Just stump up the necessary half a million dollars or so out of pocket. Because coming up with that kind of money for most people is no issue.

nssg said...
According to my GI, the surgeon is the #1 factor in dictating a good result.

Right, and if that's true, only a minority of j-pouch patients will get the very best surgeons in the country. It's not just a question of money or insurance - crucial though that is - it's also a question of logistics.

Post Edited (NiceCupOfTea) : 12/23/2015 5:14:06 PM (GMT-7)

Posted 12/23/2015 8:06 PM (GMT -5)
I still agree with NCOT's "lottery" assessment. There are just too many variables to consider it anything else.

And like the lottery, the more money you have to throw at it, the better the odds. But we all know not everyone has access to the "best" - it's one thing to want the best of everything - who wouldn't - but it's
obviously not attainable for us regular folks.

So even when all the stars line up, there are still uncontrollable factors that can lead to less than acceptable results. When you're playing to get rich quickly, well too bad if you lose. But when it's a return to a relatively normal life you are after, losing that lottery really sucks.
Posted 12/23/2015 8:35 PM (GMT -5)
Shaking my head right now.

Sorry to the OP that your thread got so sideways.

I'm out....Merry Christmas folks.
Posted 12/23/2015 9:03 PM (GMT -5)

NiceCupOfTea said...

Oh I get it. Just stump up the necessary half a million dollars or so out of pocket. Because coming up with that kind of money for most people is no issue.

In reality, most major hospitals do accept a lot of insurance plans and most top surgeons practice out of these hospitals. Many top surgeons are covered by insurance and it's just a matter of traveling to their location (which could cost some $ but probably a few 1000 when you really break it down). Here in the US, you would get the hospital covered - likely 100%, and that's the majority of the cost. The fees for the surgeon would be worked out directly with the surgeon. Depending on your medical insurance, they would most likely pay a percentage for out-of-network providers. Let's say it was 5k or 15k even, isn't that worth it?

People go into way more debt than for a college education here... People go to unaccredited schools and come out with tons of debt and that's really a toss of the dice. Finding a good job can be another lottery, but you don't say, eh, forget it, I will go into it uneducated, you get a skill-set and give yourself a decent chance.

People also have elective surgeries to change their physical appearance, that's never covered by insurance, yet people spend 10 or 15k out of pocket. Life requires spending money sometimes.

It sucks to spend your hard earned money on something insurance should cover, but i'd rather spend it if that's what it takes and get the best result possible than not spend it and end up feeling like I didn't give myself a chance.
Posted 12/23/2015 9:32 PM (GMT -5)
Can someone explain, if there is no urgency and you can go when you want, then why are there still 4-5 BMs?
Posted 12/23/2015 9:36 PM (GMT -5)
The pouch is made from your small intestine and it doesn't have the capacity of your colon and rectum.. It also doesn't absorb as much fluid. The jpouch kind of reminds me of having an ileo, just internally. I would empty that 6x a day too. It's also kind of easy to empty whenever you want to, like with an ileo, so often you will just empty before going out or when you're in the bathroom peeing. It's not like with a colon where you get the urge and you go sit on the toilet.
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