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Posted 4/8/2013 5:51 PM (GMT 0)
Well, I'm late in this thread, but I wanna throw in my 2 cents, cause I feel like it. I might be facing surgery in the near future also, but I vehemently do not want a bag, so the only solution would be a J Pouch.

The way I am, I KNOW, I wouldn't be at peace with a bag and dispite all the possible complications I still have to go for a J pouch or whatever else that exists that doesn't include a bag.
Posted 4/8/2013 6:10 PM (GMT 0)
Do they ever do the j-pouch surgery in one so there is no need for a bag?!
Posted 4/8/2013 6:18 PM (GMT 0)
"Do they ever do the j-pouch surgery in one so there is no need for a bag?!"

Probably, but I would go with the two steps. All I want is to not get stuck with a bag for the rest of my life. 3-4 months I can deal with it.
Posted 4/8/2013 6:34 PM (GMT 0)
Some people are candidates for a one step j-pouch but it is very rare for UC. J-pouches are used for some other issues where a one step procedure is more appropriate. I believe that over the years it's become clear that one step procedures for IBD patients are associated with increased risk of complications so it's no longer an option except with some specific surgeons who have their personal reasons for doing it that way.

I've said it before, I'll say it again, and I'll continue to say it: ostomies may be an additional hassle in some respects, but if surgery is in your future, take the time to read about it, watch YouTube videos, and preferably meet an experienced ostomate who is the same age/gender as you. There is no reason to dread "the bag" as much as it seems so many people do!
Posted 4/8/2013 6:43 PM (GMT 0)

Minners said...
Do they ever do the j-pouch surgery in one so there is no need for a bag?!

It can be done for certain candidates....usually FAP or cancer patients that are not ill going into surgery. Most surgeons just don't do it because they want the newly created j pouch to heal inside before it starts getting used. I had a two step surgery so I only had my ileostomy for 3 months. But in short, yes it's done....just not as often.
Posted 4/8/2013 6:46 PM (GMT 0)
Well I don't see I have any other option but to get the surgery now. My azathioprine isn't working and my Dr says that I cannot have infliximab as maintenance med as in the UK it is only licensed for 3 infusions to induce remission. He wants me back on steroids which is absolute bullcrap, seeing as they have never worked it's ludicrous to put me on them again, and I absolutely refuse! How the hell does the NHS pay out for boob jobs and gastric bands and other self inflicted ailments and yet they won't give me the medicine I need to have any sort of quality of life!

I have appointment with my GI doctor tomorrow, I'm going to make clear its either infliximab or surgery and put the decision into his hands.
Posted 4/8/2013 6:57 PM (GMT 0)
WAT?!?! 3 infusions and that's it. What the f... is the medical system smoking there. It's a maintenance med. Some have been on it for over 10 years with infusions every 8 weeks or so.

You know, I used to look at those handicapped people in wheelchairs and knowing they have a bag, well some of them, and then thinking it would be one of my nightmares needing to have one of those bags.

Maaaan, life is cruel sometimes when I reach a point where a bag, albeit, temporarily might be in my near future.

And it's not even the surgery part that scares me....

I wanna take a gun and shoot myself....I'm so angry....at many aspects of this situation.

*Oh and I prefer to post my feelings about the bag here. On the ostomy forum, if I'd posted something bad about the bag, they'll rip me a new one. lol *

Posted 4/8/2013 7:10 PM (GMT 0)
Curious, why are so many uc people so darn against living with a permanent bag? Is it just vanity? The bag is safer with fewer potential complications. I mean uc makes us run to the bathroom many times a day, even more when flaring, and the thought of being freed of that need forever sounds like a sweet reward/dream to me. Yeah the bag needs to be emptied from time to time, but that is an entirely different situation than with active uc inflammation where if you don't get to the toilet in time then the poop is in your pants. To me the j-pouch seems like only a partial solution as you still have to poop 6-8 times a day given the urgency supposedly isn't there but still...

I don't need to worry about this yet, but I fear someday I might...
Posted 4/8/2013 7:11 PM (GMT 0)
Yeah this is ridiculous! I'm fuming, I called the NACC (national crohn's and colitis charity in UK) and cried down the phone to the volunteer for the last hour (hate to see my phone bill!!)

I'm seeing Dr tomorrow for emergency appointment so hoping I will make him see sense! He doesn't know what he's asking me to do!!! Take steroids for a few weeks (even though I'm steroid refractory!?!?)...continue to deteriorate until I get admitted...AGAIN...and then what!!!!??? They'll be forced to put me on infliximab and give me only 3 infusions and then maybe up azathioprine to over the max limit for my weight, then i'll flare again!

****ing insanity! Tomorrow is judgement day, either infliximab or the road to surgery. God I wish I were in America where I could get the medicine I needed to have any sort of quality of life
Posted 4/8/2013 7:15 PM (GMT 0)
I think it's a postcode lottery when it comes to infliximab for UC unfortunately. I have heard that you can appeal to your local NHS trust - did they say anything about that at the CC foundation? It makes no sense at all - either they should offer it or not but to offer only an induction series when that practice is outdated and potentially dangerous (allowing the patient to form antibodies when discontinued) is stupid. I hope you manage to find a way to get it soon.
Posted 4/8/2013 7:19 PM (GMT 0)

Somedude said...
WAT?!?! 3 infusions and that's it. What the f... is the medical system smoking there. It's a maintenance med. Some have been on it for over 10 years with infusions every 8 weeks or so.

You know, I used to look at those handicapped people in wheelchairs and knowing they have a bag, well some of them, and then thinking it would be one of my nightmares needing to have one of those bags.

Maaaan, life is cruel sometimes when I reach a point where a bag, albeit, temporarily might be in my near future.

And it's not even the surgery part that scares me....


I wanna take a gun and shoot myself....I'm so angry....at many aspects of this situation.





*Oh and I prefer to post my feelings about the bag here. On the ostomy forum, if I'd posted something bad about the bag, they'll rip me a new one. lol *

You need to seek out therapy. I know it isn't a pathological mental condition to not want an ostomy and I know that you tend to kid around a lot, but I honestly think you would benefit GREATLY from talk therapy with a therapist who is familiar with IBD. Your GI might be able to refer you.

Really sorry to derail your thread B and hope you find a good resolution soon (obviously more steroids are not the answer).
Posted 4/8/2013 7:27 PM (GMT 0)
Just another reason why I don't like national health systems. The US has a lot of healthcare problems but I certainly don't want a national health system rationing the type of care I get strictly due to cost. I'm a Sarah Palin hater and she is usually just full of crap but "death panels" are a real possibility with Obamacare. Certain people, especially the elderly, will not be able to get expensive experimental care for cancers, etc. because it will be deemed not worth the cost. Of course we get some of that even now with some insurances refusing to cover certain treatments for certain things but it will get a lot more widespread.
Posted 4/8/2013 7:30 PM (GMT 0)
Thanks killcolitis, I'm definitely going to appeal tomorrow. I'm going to write down all these points and make the Dr look stupid for even suggesting steroids. I shouldn't be forced to suffer the way I am at the moment. In a perfect world I should be given the infusion and be on my merry way to remission within a couple of days and then once I'm well I can seriously think through having surgery. Its sick and cruel to drag out my suffering by them telling me to try things again which have always failed in the past and resulted in me becoming dangerously unwell.

What sort of country is it where self inflicted obese people are given gastric bands and all the other treatment that goes with being a greedy fat beast free on NHS - draining it's resources. As a result people genuinely ill through no fault of their own can't have the medicine they desperately need in order to have any sort of quality of life because there isn't enough money in the pot... this country is messed uppp!
Posted 4/8/2013 7:35 PM (GMT 0)
i'm a hippie - i like natural - let the boobs and the hair down - everyone be happy and content - let's just live like God intended - no factory raised food - no big pharma drugs - no bags -

i'll do what i have to do for as long as i can to stay away from drugs and the knife -

am i an idiot - most of the time !

as popeye and any good vegetarian would say, "i yam what i yam" !

but for all of you considering or facing surgery, the best of luck to you - you've got way bigger balls than i do !

Posted 4/8/2013 7:36 PM (GMT 0)
" but I honestly think you would benefit GREATLY from talk therapy with a therapist who is familiar with IBD."

lol, there is no therapist in the world that will make me change my mind. At worst, I'll change their minds.

I don't know man, it's thing. I can't stand wearing jewelery. I don't wear rings, watches, necklaces, I hate stuff "dangling". I like to be "free". Maintaining stuff like this would be chore for me, it's difficult to explain..

I once posted the advantages of J pouch vs bag on the ostomy forums, there was a grandma there up in my grill the whole time for basically thinking J pouch was better. lolololololol

I forgot her name now....she doesn't seem to post often anymore.
Posted 4/8/2013 7:40 PM (GMT 0)
gary - these decisions are actually based on evidence - as much as patients may want infliximab it's not as effective for UC as it is for CD (and it is funded fully for that, meaning that no one in the entire country with insurance or not has to pay a cent for it). It's also not a long term solution and in their eyes there is a solution, which is surgery. We may not like it but it's perfectly rational. Having lived in both the UK and the US I'd take the NHS with all of its serious flaws.
Burdeboo - I hope you manage to get it. Please keep us posted.
Posted 4/8/2013 7:56 PM (GMT 0)
killcolitis:

I think that was my point. Everyone is different and responds differently to treatments. Some have been doing fine on Remicade for years but in this case, where remicade was working, it is not given as an option based soley on evidence and statistics, not on individual results. Using your thinking, this poor person is going to have to go under the knife just because the statistics show that remicade doesn't work long term as well as surgery does, even though the evidence shows that remicade worked just fine on them, at least short term anyway. In other words, you are powerless to have a voice in your own treatment because costs and statistics are given more weight. To keep the national healthcare costs down you are nothing but a victim of averages and percentages, not on an individualized treatment plan based on what works or doesn't work in you. I do not want that. I want a voice and I want my voice heard and followed. If my doctor won't follow what I want I get a new doctor. In a national health system that would be pointless because they would all tell you the same thing. Remicade is 3 infusions only - no matter how well it works in you. I realize the US health system has many flaws but for those where it does work, it works much better than a national system.
Posted 4/8/2013 7:59 PM (GMT 0)
I agree the three treatments is stupid and based on old science but you can go private in the UK and access it if you want it and can afford it, just like you can in the US (and if you can't afford it there, you can't have it or anything else so another reason why I'd take the NHS. We see many posts here about people who cant afford asacol, and on the ostomy forum I've seen people who can't afford supplies and this is in the US. It's pretty shameful).
Posted 4/8/2013 7:59 PM (GMT 0)
Gary, it doesn't work this way in Canada. I can do how many infusions I want. First time I ever hear about something like this. 3 infusions and that is it. wt.f.
Posted 4/8/2013 8:02 PM (GMT 0)
I don't know man, it's thing. I can't stand wearing jewelery. I don't wear rings, watches, necklaces, I hate stuff "dangling". I like to be "free". Maintaining stuff like this would be chore for me, it's difficult to explain..

 

not to me dude !

Posted 4/8/2013 8:16 PM (GMT 0)
Burdeboo,

Good luck with however it turns out. If you cannot get the Remicade and eventually need surgery, just know it isn't the end of the world. I have a j pouch and I love it. I was on Remicade as a last resort before surgery and I am so happy now it didn't work because now I am totally drug free and UC free. So there is always light at the end of the tunnel.
Posted 4/8/2013 9:12 PM (GMT 0)
This 3 infusions rule is crap and ridiculous when it worked amazingly for me. I agree with garylouisvile that I am being looked at as a statistic and protocol and not as an individual who got her life back from those 3 infusions and has now lost it again after the effects of infliximab have worn off. I will fight this tomorrow with my GI and let you all know what is decided.

I will stay strong and if infliximab isn't offered then I will accept that surgery is my only option. I'm never wasting another second on steroids again.

Killcolitis I'm not sure I can even get it privately. As it isn't licensed to be used as maintenance drug in the UK apparently. I'll look into this if I don't get the result i'm after tomorrow

I was hoping to make the decision to have surgery whilst in remission so it wasn't a choice I was forced to make out of desperation and lack of options but more of a well thought through plan to permanent recovery. However I think i'm going to lose that choice. Bums me out, however from hearing how many have responded about how well the J-Pouch has worked for them it does give me hope and I'm not looking at the future as being so bleak. I think I could live with a "bag" for a few months if it relieves me from all this anxiety.

watched this video and it gave me hope. http://www.ihaveuc.com/a-massive-j-pouch-success-story-finally-interviewing-curtis/

ByeByeUC promise I'll keep you all posted!
Posted 4/8/2013 9:47 PM (GMT 0)
In Ireland, it is much fairer - it is all paid for regardless if you're public or private, you just have to pay a €144 a month for as many meds as you need. No questions asked; if you need it you get it.

Anyways, somedude, I totally agree. I don't know what it is about surgery, I think it's a bit of everything - from vanity to simple things like wearing fitted clothes and bikinis to self-confidence, to scars and infections to being to only one I know that would have to have it.. I've always been a scaredy cat - literally terrifies of everything from rollercoasters to doctors to dentists don't mind surgery. I get so easily grossed out too! People talk about it like its so good and easy but I just can't face it yet.. Last girl I talked to that had a temporary bag was so honest from the bad points to the good points and she was delighted she had it.. But she admitted the whole thing was horrific and she was left with no confidence to leave the house etc. I cried myself to sleep for three nights after talking to her as it really made it real!! I've achieved a lot whilst being so badly sick with terrible flares so I am stronger than I thought (even though I have down days!) so if it comes to surgery as a last option then I'll get through it!
Posted 4/8/2013 10:25 PM (GMT 0)
Hi Burdeboo,

I'm on infliximab for the rest of my life, because UC gave me ank spon (bone disease) too and that's under infliximab regulations. I was already on stage 2/3 (we do the surgery in 3 parts) of my surgery, so I had to have it completed anyway.

But, even if i hadn't had my surgery yet and i was on infliximab, i would still have it. Surgery was the best choice I've made. I got some great pictures of what they took out of me too (large bowel) and yep, glad to get rid of that.
Posted 4/8/2013 11:29 PM (GMT 0)

steve246 said...
I got some great pictures of what they took out of me too (large bowel) and yep, glad to get rid of that.

My colon looked like chopped up ground beef. After surgery my surgeon came in and asked me how the heck I lived day to day with that colon. I think if people saw what their colons actually looked like in there, they'd be like "get that thing outta me!"
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