surgery?

I have been flaring for a couple years now. I was on prednisone for about 3 years straight. I have tried asacol, lialda, prednisone, uceris, entecort, humira, and everything natural you could think of. SCD diet for 3 months, juiced for a couple weeks. Nothing has worked. I am currently on entyvio for a year, and 6mp for 2 months. I have tried basically everything except remicade. Entyvio is supposed to be like remicade, but focuses on the gut only. The only way that my symptoms are good is when I'm on 40mg prednisone. Me and my doctor have decided to do surgery if I don't get into remission by 2016. We are going to try Entyvio infusions every 4 weeks instead of 8. I am nervous about the surgery, as I have read you still go to the bathroom 4-8 tines a day. But I'm currently going about 12-18 tines a day now. I don't even care about the frequency, it's the urgency that ruins my life. Are there any members that have gotten the ipaa surgery?

I had j pouch surgery five years ago and it was the best thing I ever could've done in regards to treating my UC. I tried it all as well with no luck. I go about 4x a day. Some days less, some days more. There is no urgency. It's not like having a bm with a sick colon. You just sit and go....as quick and painless as urinating. I eat whatever I like and I'm off all drugs which is such a great feeling. It's scary to face surgery...no one wants to have to do it but I'm so grateful for this procedure. If you have any specific questions, please feel free to ask. Best to you.

However 95 percent of patients are happy with the outcome of their surgery

This statistic gets bandied about all the time on this site.

We have no idea whether 95% of patients are happy with the outcome of their surgery. We know that the rate of pouch failure bad enough to result in returning to an ileostomy is in the region of 5% or so.

Basically some people have an excellent outcome, others not so much. It's a lottery how anyone will do afterwards, so there is no point in trying to predict it in advance - it's utterly random. That said, I guess if even the ones with less than sterling outcomes choose to stick with their j-pouch, it can't be that bad.

While 4-6 bathroom trips a day is common with a j-pouch, it's quick and usually done when you pee.

This literally is the best possible outcome you can have with a j-pouch; not everyone will achieve that outcome - certainly not 95% of people who have the surgery. Some people will have more like 8-12 BMs a day (or even more if they are really unlucky), night time visits, seepage, urgency, etc.

There's no guarantee with any type of surgery. All we really hear from on this site are the tiny number of success stories, who assure everyone thinking of surgery that they will have the same optimal outcome.

I'm not anti-surgery: sometimes it's really the only thing left and even a subpar outcome is probably better than active UC for most people. But it just baffles me at how surgery is pushed as a panacea; it really does baffle me. Nobody proselytises about Remicade or mesalazine (apart from perhaps quincy <_<), even though those drugs have given thousands their lives back.

Post Edited (NiceCupOfTea) : 12/22/2015 6:00:17 AM (GMT-7)

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.

The 'failures', for want of a better word, aren't acknowledged, but they exist all right - mostly on the Ostomy board on this site and over at j-pouch.org. It's just that here at least they don't post a lot. I'm the only one too stupid or stubborn to know when I'm not wanted, and so I keep on posting.

(And before somebody else points it out, no, I don't have a j-pouch, I have the next closest thing to one. My original rectum with my small bowel connected to it. I got unlucky and the Crohn's returned almost immediately. Nobody could have predicted that, when I had remained Crohn's-free for 2 and a half years prior to that. I don't have fistulas or abscesses and it's still hell.)

timras,

I am four weeks out from my takedown surgery, so I've been using my jpouch for about a month now. Similar to Marianne, surgery has been a big relief for me. Even though I am in the early phase of adapting to my jpouch, I only make 4-5 non-urgent trips to the bathroom and as mentioned above, it is as quick and painless as peeing -- nothing like my bathroom trips when I had UC! I am also sleeping through the night. I had some seepage at night for the first week - I also happened to have my period this week so I was wearing pads to bed anyways - but it was nothing the pads couldn't handle and its no longer an issue for me. I do not currently take any meds, my energy level is great, and I'm very happy with my decision.

This is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - http://www.ncbi.nlm.nih.gov/pubmed/14501509, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2709047/?tool=pubmed
There are also some good blogs out there that really helped me get a handle on what the process is like - http://ronnielee-fightingforit.blogspot.com/, http://itslikethisuc.blogspot.com/ - my own blog http://fyouuc.blogspot.com/

It also helped me to know someone who has had a jpouch for a long time. One of my friends dad had his jpouch surgery in the early 1980's at the Cleveland Clinic. He's had no issues since his surgery and leads a healthy, active life.

Let us know if you have any specific questions. Now that I am feeling well, I don't check in to this site as often as I have in the past, but I will check this thread when I log in next. Good luck with your decision.

I had jpouch surgery 14 years ago after a 2.5 year flare. I was steroid dependent, as it sounds like you are. I finally became more afraid of the long term irreversible side effects of prednisone, than I was of surgery. If I were in your shoes, instead of waiting another full year I would go for a surgery consult now. Giving up one more full year of quality life isn't living. And those years you will never get back.

I have never regretted surgery, it gave me a full life back. I hike, backpack, do lots of international travel, and eat anything and everything. It's been a blessing. Oh, and no more medication!

Sue

NCOT,
It is absolutely ridiculous to say it's a lottery or a crap shoot. So all the men and women who aspire to be surgeons and specialize in the j procedure are going in saying "Hey I'm doing all this because it's the roll of the dice whether my patient has a good outcome or not". Come on now. You know darn well there is more to it than that. There are risks with any kind of surgery. Anyone who has two brain cells to rub together already knows that. You weigh your options, and make an educated decision by researching, interviewing surgeons and talking to real people. In so many cases the benefits far outweigh the risks.

You talk about not misleading people. To make a statement like that is misleading.

NCOT said: I'm the only one too stupid or stubborn to know when I'm not wanted, and so I keep on posting.

Please keep posting, your surgery outcome reality is as much needed as other peoples. I continue to post my reality that current mesalamine based meds never helped me but diet modification does (after multiple efforts with diet and supplements). I may be stubborn like NCOT but neither of us are stupid.

We may be the outliers and not the majority experience but frankly the "majority" are not coming to this forum because they have achieved remission with current RX meds. This forum offers information for people who have not gotten remission from what current medical practices have to offer.

NCOT has tried many of the alternatives (all?) posted here in her search for better colon behavior. She has a place here and her posts are informative.

I don't expect to change anyone's mind about diet modification if they've tried it and it doesn't work for them. I respect people's choices and surgery is one of our choices.

OP may get a broader spectrum of responses in j-pouch dot org and the Ostomy forum. That's where pre- and post-surgery people hang. UC forum is a mixed bag (joke-insert wince) and we all try and get along with our different remission paths.

OP: good luck with your choice in 2016. A surgery consult should be done ASAP so you have some more information. Getting the best surgeon is always a good idea.

NiceCupOfTea said...
You talk about not misleading people. To make a statement like that is misleading.

I respectfully disagree, unless you can explain to all the people who had a bad outcome why they had a bad outcome. They don't know, I don't know, and their surgeons don't know.

I am simply pointing out that there's much more to it than saying its a roll of the dice. I am well aware of the fact that there are less than satisfactory outcomes. But I truly believe for someone suffering miserably with UC (not Crohns like you have) and the meds not working that they focus on the much higher percentage of happy j pouchers than the unhappy ones. The happy are the majority. That is a fact that you cannot dispute.

Surgery has a better statistical outcome than any other UC treatment currently available. Any medical procedure has it possibly side-effects and negative outcomes.

I'm one of the unlucky who has chronic pouchitis, maybe CD. I still like my j-pouch better than any one treatment that I've had, it has given me back my life when other medications weren't helping me. I wouldn't recommend it to someone who is only on 5ASAs but if you are on biologicals and they are not working then surgery is a good next step.

I still have to take medications and if I leave it untreated then the pouchitis can get pretty bad but it is well controlled with medications; my UC was always more difficult to treat.

ks1905 said...
Surgery has a better statistical outcome than any other UC treatment currently available. Any medical procedure has it possibly side-effects and negative outcomes.

I'm one of the unlucky who has chronic pouchitis, maybe CD. I still like my j-pouch better than any one treatment that I've had, it has given me back my life when other medications weren't helping me. I wouldn't recommend it to someone who is only on 5ASAs but if you are on biologicals and they are not working then surgery is a good next step.

I still have to take medications and if I leave it untreated then the pouchitis can get pretty bad but it is well controlled with medications; my UC was always more difficult to treat.

If meds work so well for you, why do you always seem to be on a permanent antibiotic combo? What are the antibiotics for, if you are on sulphasalazine and Cimzia?

What I'm trying to tactfully say is, that your pouchitis doesn't seem to be all that well-controlled from where I'm sitting.

I hope nobody has a go at me for this post, but I feel like people have been implying I haven't been open about my Crohn's when I feel like I have been transparent about it. If sigs showed up every time, it would be obvious.

NiceCupOfTea said...

ks1905 said...
Surgery has a better statistical outcome than any other UC treatment currently available. Any medical procedure has it possibly side-effects and negative outcomes.

I'm one of the unlucky who has chronic pouchitis, maybe CD. I still like my j-pouch better than any one treatment that I've had, it has given me back my life when other medications weren't helping me. I wouldn't recommend it to someone who is only on 5ASAs but if you are on biologicals and they are not working then surgery is a good next step.

I still have to take medications and if I leave it untreated then the pouchitis can get pretty bad but it is well controlled with medications; my UC was always more difficult to treat.

If meds work so well for you, why do you always seem to be on a permanent antibiotic combo? What are the antibiotics for, if you are on sulphasalazine and Cimzia?

What I'm trying to tactfully say is, that your pouchitis doesn't seem to be all that well-controlled from where I'm sitting.

I hope nobody has a go at me for this post, but I feel like people have been implying I haven't been open about my Crohn's when I feel like I have been transparent about it. If sigs showed up every time, it would be obvious.

I said it is well controlled with medication. I never wake up at night to empty my pouch and I only empty about 4 times a day and I can eat whatever I want. If I don't take the meds then this is not the case.

I am trying Cimzia because I don't want to take daily antibiotics; Cimzia doesn't work that well for me like all of the other anti-tnf meds after I stopped Remicade. I am waiting for my insurance company to approve Stelara for me.

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 can see both sides. I think it's good to exhaust all medical options before having surgery. After surgery, there is no turning back. There is also no replacement for a working colon. The other side, is that we don't have working colons and if you've exhausted the medical options, what else can you do?

I think surgery does take a huge leap of faith. There are possible consequences and I don't know if it's something that can be prevented by using a different surgeon, different technique, individual anatomy, or if the pANCA test is relevant, I don't think anyone knows. If you end up with pouchitis, while it may be better than full-blown, active UC, it puts you back on the whole "treatment" train. I did this to get out of that cycle. if I ended up back there, I would wish I hadn't had surgery I bet. I already tried everything regardless, there are no medical options left for me.

To go through all this and end up with visible scars, to continue taking questionable medication and facing unpredictability, that doesn't seem like a great trade-off. The permanent ileo eliminates some of these possibilities but you have to come to terms with having an external pouch (which by the way sounds a lot worse than it is when you're living with it).

There are 2 sides again of course, sticking with your broken colon, over dealing with pouchitis, can be MUCH worse so far as symptoms. So even with pouchitis, it's not all doom and gloom.

You have to be realistic about the outcome. We have a user who posted recently, who is not NCOT, who is unhappy with his result www.healingwell.com/community/default.aspx?f=38&m=3263001.

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.