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when is it time for UC surgery?

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Posted 5/11/2012 9:47 PM (GMT 0)
Hey all, new to this site, I have had pan colitis for over 30 yrs , a dysplasic show 10 yrs ago, opted for wait and watch over j-pouch surgery, continued flares and periods of remission . During flares it is manageable on 30 -60 mg of prednisone, sometimes enemas. I am 52 yrs old . My cancer risk is getting higher and higher. I had a 3 yr period of remision but have had 3 flares this year and am presently in one and reconsidering surgery again. This disease will never leave me and should I get this out before I am say 70 and in worse health. My surgeon is a yes , I am in total anxiety at making the wrong decision . I am fully aware of the not so nice problems with j-pouch surgery, having said that not so crazy about life with uc.

Anyone who can give some thoughts on this would be great to hear as others who do not suffer from this really have no idea.

thanks,

sick and tired of being sick and tired.

confused  

Posted 5/11/2012 9:58 PM (GMT 0)
honestly ellie, i think about getting surgery all the time and i'm 30 years younger than you. if you feel like flares have outnumbered healthy times, maybe it would be best to get surgery. only you can decide how far your body can be pushed until it's just enough. personally, i'd get an ostomy bag and just go with that instead of the risks of getting pouchitis. i think i'd be happy never using my butthole again.

have you tried any of the heavy duty drugs like remicade or humira? they could help you and you could at least put off surgery if they work.
Posted 5/11/2012 10:02 PM (GMT 0)
wow you lasted 30 years with this crap....


Just tell me something, how are you making a wrong decision? You spent 30 years with this crap without long lasting remission...is that a good decision?

I mean, what is a good decision in this case...you stay this way, it's a bad decision, you get surgery and it's not successful, it's a bad decision.
Posted 5/11/2012 10:35 PM (GMT 0)
Ellie1234- I feel much the same way as you- I still manage to feel opti istic that I can buy myself anither ten year total remission one day, but Every time I flare (fighting one presently, after a 10 month remission that coincided with LDN)- but I do get discouraged that every new UC drug js either a mesalamine (i'm allergic to all) or a biologic (they terrify me- got crazy things haooening to me on them like nasty joint pains and unexplained bursitis).

Have you consulted with a top GI surgeon? I did- gave me the peace of mind to have it at short notice if I ever throw in the towell. But as I recently discovered, one has to see them every year or two to stay on the "short list" without having to do another consult. On the whole, even with stupid flares including pred, I am fearful not just of pouchitis but also that I coulf end up being rediagnosed as Crohn's a few years after surgery... So that keeps me resisting surgery if at all possible. But flares sure do get old.
Posted 5/11/2012 10:51 PM (GMT 0)
My son was 21 at first flare,9 months later it was time to remove the colon.
He baacame steroid resistant, and rescue thearpy did not work.
Crapping blood about 35 times a day,sleeping by the toilet,he had lost 30 pounds real fast.
As for me I am at 32 years with UC,still here.
My best advice is if the drugs stop working,or you are fed up with the meds,also you do not want to be too sick
and weak going into surgery.
Old Mike
Posted 5/12/2012 12:23 AM (GMT 0)
Hi ellie,
I believe it all boils down to quality of life. At least thats how it played out for me. I was just so tired of being sick, taking all the nasty drugs that were not even effective, making mad dashes to the bathroom and not making it in time, missing family functions and things at my kids school. The list goes on and on. I think it's time for surgery when you have exhausted all the drugs and things you are willing to try and your quality of life is in the toilet. (No pun intended!)

I am so happy I went ahead and had surgery. It's tough and it's scary but my goodness it is SO worth it. Best wishes with all of your decisions.
Posted 5/12/2012 4:56 AM (GMT 0)
I have only recently decided its time for surgery, taking both remicade and 6mp can't and won't last forever and like you say the cancer risks are higher.  (So could mean life of death really when you think about it) The surgeon says I'm a prime candidate because the medication is keeping the uc under control and I refuse prednisone so I am on the waiting list now...Looking forward to not having to take medication.  Good luck with your decision...
Posted 5/12/2012 6:08 AM (GMT 0)
Thankyou for all who presentlly replied to my previous post re:how to know when to have UC surgery, It so helps to hear from people who understand.
Posted 5/12/2012 7:55 PM (GMT 0)
     Totally understand where you are coming from Elie.  I suffered with UP (mine was proctitis) for twelve years.  Became prednisone dependent for last two years with the disease but on it far too many times.  Took 6MP for seven years, never kept me in a long term remission.  Remicade failed after 3rd infusion, Humira...no change after three months.  My life was being glued to the toilet.  I had three portapots stationed throughout my home and I live in a rancher.  I missed my grandson's First Holy Communion, two funerals of close friends and my niece's bridal shower.

     Prednisone gave me full blown osteoporosis, from which I will always suffer.  Already have three back fractures.

     My GI doctor refused to send me to a surgeon, so I sought one out online.  I found a wonderful colorectal surgeon who is head of colorectal surgery at the Univ. of Pa in Philly (I live in south Jersey and will absolutley NOT have surgery here).  I was not a candidate for j-pouch because of my deteriorating health.  I had type 2 diabetes from the prednisone and uncontrollable high blood pressure and was 63 yrs old.  I had already resigned myself to the fact that living with a "bag" was at least LIVING.  I considered myself to be just existing.

     My surgery was performed on June 28,2010 at Pennsylvania Hospital by Dr. Robert Fry.  I had a few blips but I would do it all over again.  I feel GREAT, off all meds except for only 1 pill a day for my BP (I was on three different meds for BP before surgery and it was still high).  If God spares me, I will be 66 this August.  My family physician said there is no reason I cannot enjoy another GOOD 20 yrs.

     You will know when you are ready for surgery.  The best of luck and health to you.

Posted 5/12/2012 8:27 PM (GMT 0)
I agree that it's about quality of life. You alsoo have to worry that the older you get, the more difficult surgery may be. I am not saying you should or shouldn't, I think you just need to weigh the options. One thing about surgery that scares me is the chance of a less than perfect outcome. Not to say a bad outcome is always worse than UC, because it's not always, but it can be. Most people with a j-pouch do use the toilet 6x+ a day. With my case of UC, I have been able to acheive some decent remissions but I do wonder and worry about where it will lead me in the future. Perhaps I should have had surgery a long time ago and I'd have gone on with my life but surgery is not without risks and it's not an easy surgery to recover from. I think if it came to longterm prednisone use or surgery, I personally would opt for surgery without a doubt. The best advice I can give you is to do your research, find the BEST CR surgeon you can, get referrals, speak to patients who have been through it and visit j-pouch.org and the ostomy board here on HW and you can get a better idea of what surgery entails. We have some really supportive members who have been through this. For us here with UC, we are all hoping for a miracle forever remission but in reality, UC is unpredictable. I hate missing out on life and opportunities because of this illness.
Posted 5/12/2012 8:46 PM (GMT 0)
Make sure you do your research and get a clear picture what life after surgery is really like, rather than thinking of it as a "cure"
There can be MANY problems after surgery and 40% require additional surgeries.
Surgery is no walk in the park and many GI doctors will tell you the truth about the downside. Talk to the professionals and really do your due diligence before considering this life altering removal of a vital organ.
I would not choose surgery unless it was to save my life, and that's the truth!
Posted 5/12/2012 9:11 PM (GMT 0)
Ellie,
The best thing you could do is talk to people who actually have had surgery. And of course consulting with a top rate surgeon and do not weigh in too heavily on what GI doctors have to say about surgery. I have found they do not have not a lot of experience giving advice on surgery because they are in the business to treat not operate. If you have any questions, I would be happy to try and answer them for you.
Posted 5/12/2012 9:43 PM (GMT 0)
I'm 22 years old and have had colitis for about 5 years. I've tried a number drugs (see list below) with mixed results but eventually they all seem to become ineffective. I have very few options left, in terms of medication, and I'm considering surgery. I'd love to talk more with anyone who's had the surgery or who's seriously considering it now. My email address is [see profile for email address]

Thanks!

Medications Tried:
Asacol
Lialda
Canasa
Cortifoam
Remicade
Azathioprine
Vedolizumab
Azathioprine w/Allopurinol (Currently on this)
Prednisone (Currently on this)

[I removed your email from the post. this will help prevent spammers from getting your address. I also recommend checking out the Ostomy board to speak with people who have been through surgery]

Post Edited By Moderator (notsosicklygirl) : 5/12/2012 4:42:56 PM (GMT-6)

Posted 5/12/2012 11:08 PM (GMT 0)
     Could not agree with ByeByeUC more about the statement concerning GI doctors.  They won't make the big bucks once the organ is removed.  My GI doctor was visibly upset when I told him my decision to go for surgery.  I could NOT believe he wanted me to try Cimzia and if that didn't work, Orenzia, etc.  This, after 6MP, Remicade AND Humira all failed.  I don't think he gave a rat's behind about my welfare at all!

     Yes, BeatUC, surgery is certainly NOT a walk in the park and no one in their right mind wants to have a major organ removed for kicks.  This decision is not made lightly.  You have no idea how many sleepless nights were spent pondering whether or not I should have the surgery.  But, when I saw how much, not only I was suffering, but how much my suffering was affecting my loved ones, I knew I was at the end of the line with the disease.  My 83 yr old cousin said, "Chris, I cannot tell you what to do, but you are not getting any younger, your health is deteriorating rapidly and if that disease doesn't kill you, that darn medicine will." 

Posted 5/12/2012 11:23 PM (GMT 0)
Its time when you don't want to be tied to the toilet anymore! I was 21 when I got sick and wasted 8 years. At 29 I chose a bag. I didn't try all the drugs, I just didn't want to. I didn't choose a jpouch cause I didn't want the extra surgery.
Surgery is hard, very hard and can come with its own set of problems. I had to have another surgery for a twist a few months ago. but even with that surgery is still worth it. I've had my bag for over 5 years now and I've done all the things UC took away from me.
Posted 5/12/2012 11:32 PM (GMT 0)
Consult with a top CR surgeon in your state. If you need referrals, go to www.j-pouch.org. I'm surprised you rolled the dice and have lived with LGD for so long. Life is so much better post colon!

Sue
Posted 5/13/2012 12:52 PM (GMT 0)
The surgeon will tell you surgery is great, the GI doc's know the truth.
I was lied to by a surgeon and almost went for it. Thank God I did my research.
Sometimes surgery is your only option, but as long as you can get some remission, I'd keep away from the knife.
Posted 5/13/2012 1:22 PM (GMT 0)
I think the people who best knowthe truth are those of us who have been through surgery. We never sugarcoat it. For all the bad and hard parts about it, a bad day with a bag beats a good day with uc anyday!
Posted 5/13/2012 1:37 PM (GMT 0)
Well summerstorm, I've seen a few who have had botched surgery try to post here & get banned rather quickly.
Anyone who posts something negative about surgery is usually ganged up on and shouted down, I've seen it again & again.
The stats don't lie, I think most people who have had their colons removed become almost evangelists about it to others, while the others who are suffering with botched surgery don't post much, -just my opinion. -this forum demonstrates that pretty well -there are post op forums, but for some reason many of theses folks choose to hang out here to evangelize about their jpoches and ostomies -isn't this a UC forum?
AND from my own experience, I was pushed toward surgery by a surgical team while in the hospital. I talked to many people who had the surgery (this was a GI center hospital) most of them (over 60%) had bad results.
Posted 5/13/2012 3:17 PM (GMT 0)
I currently still have UC , I do have a great GI surgeon , As I have had UC for 30 + yrs I came to this site to get discussion on the option of having colon removed, as explained earlier Im 52 and my risk for Cancer is in the like 40 %, especially since having pan colitis and a previous dysplasic show 10 yrs ago. Ive had periods of remission but have also been on 30-40 mg of Prednisone, 10 asacol daily and am looking for people who have understand UC. Thankyou to Everyone who has posted with or without a colon.Its soo much to think about.Looking forward to discussion with Dr. in couple weeks.
Please keep posting your thoughts, I would like to be as informed as possible.
ELLIE
Posted 5/14/2012 2:46 AM (GMT 0)
This is a UC forum, but when people ask about surgery, someone who hasn't had it isn't the best person to answer. BeatUC you are the only person who shouts negative things and bashes surgery. I never come here and say oh my god don't try ldn, don't try slippery elm, don't try whatever thing people are trying. As soon as someone mentions surgery you jump in and say don't do it, and say bad things about those of us who have had it.

Ellie, its always easiest to recover the healthier and younger you are. So even if you choose not to do it now, at least you will have consulted with a surgeon so if it comes to an emergency situation you will be prepared. Good luck!
Posted 5/14/2012 3:17 AM (GMT 0)
BeatUC is like the Ying to the Yang.

Whenever you 2 come in to speak pro-surgery, BeatUC is not far behind to speak against it.

It's a symbiotic relationship lol
Posted 5/14/2012 4:08 AM (GMT 0)
Ellie1234- what grade of dysplasia showed 10 years ago, and has it ever shown up since? And how often do you get scopes and how many biopsies? Wishing you many more years flare free whether its with or without a colon; the decisions are never easy, I agree.

I respect anyone's surgery decision- personally, I always browse the jpouch forum whenever I consider surgery and invariably it scares the wits out of me, and I often get a decent remission right after that... i'm also very scared jt will turn out to be CD masking as UC, after the fact.

Post Edited (Probiotic) : 5/13/2012 10:16:34 PM (GMT-6)

Posted 5/14/2012 1:11 PM (GMT 0)
You nailed it Summerstorm! BeatUC needs to change his moniker to BeatSurgery!

Sue
Posted 5/14/2012 1:25 PM (GMT 0)
I don't bash anything. I'm simply relaying my own experiences and telling the truth based on the facts.
FACT: 40% of surgery patients require additional surgeries
FACT: After surgery the average is 9-18 liquid BMs a day
FACT: The surgeon will tell you how great life will be after surgery, when the reality is quite different

All I'm saying is do your research aside of what the surgeon tells you, know the facts, good and bad.
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