Schedule Surgery and having second thoughts..

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zoom
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Date Joined May 2010
Total Posts : 20
   Posted 3/9/2011 4:11 AM (GMT -6)   
I was diagnosed last April with UC, after lialda failed in June my GI put me on Remicade. In August I was put back on prednisone and my next dose of Remi was doubled 10mg/kg. Now my remi seems to stop working after 4-5 weeks, which my GI was concerned about because I am on a higher dose. At that doctors appointment surgery was brought into question again. In January I finally wrapped my mind around the thought of having major surgery and living with a bag for a couple months until undergoing a second surgery and the possibility of decreased infertility. So with this decision I went back to my GI and was referred to a local surgeon as it turns out this surgeon was only board certified as a general surgeon and not a colon and rectal surgeon even though it is his speciality, I didnt feel comfortable with this so I looked for a different surgeon.
 
Well.. I had my appointment today with a surgeon from Boston, and now I'm scared. I was confident in my decision before I had met with this surgeon, and then he started talking about failure rates, and how he's worried I could possibly have Chrons even though all the tests indicate I have UC. At the time none of the scary stuff he was saying sank in so I went ahead and scheduled my surgery, and now less then 24 hours later I'm worried I'm making the wrong decision. With Remi starting to fail I'm not sure I have other options...
 
I'm not sure if I need someone to talk me down from being nervous or if my gut is telling me I need to slow down my decisions. Any input is more then welcomed.

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 3/9/2011 4:26 AM (GMT -6)   
Have you researched this surgeon? I am sure there are some very qualified surgeons in Boston. That being said, I do remember them telling me lots of very scary stuff. Did he say you specifically may very well have chrons or that when they go in there they might find out there is chrons? I wasn't too concerned with that because no gi (had three) had ever said I might have chrons.

What did he say failure rate was? Between 90-95% of people who have the j-pouch surgery are happy they had it. I think the other percentage is people who end up having chrons or who didn't have a qualified surgeon...that's just my opinion.

I say go to the j-pouch.org board and see if someone recommends a surgeon in your area and talk to them. It is normal to be scared, but if you are this uncertain, you may want to talk to another surgeon.

The sad thing is if remi is failing pretty soon you may not have a choice...you can't stay on pred. forever. You don't want to be in a situation where you have to have emergency surgery and then get the local surgeon who botches it.

Good luck. I was terrified before my first surgery. I am actually looking forward to take-down since it has all gone so well. I had mine done at the Cleveland Clinic...world renown for the j-pouch surgery.

Post Edited (Disneynut66) : 3/9/2011 2:29:48 AM (GMT-7)


ICallHimSteve
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Date Joined Mar 2011
Total Posts : 4
   Posted 3/9/2011 4:38 AM (GMT -6)   
Cross posting this in the UC board as well,

I was d/x back in aug of 2000 with UC and for ten years lived through hell, with every medication (I personally want to shoot the guy who invented prednisone) they could throw at me to try to bring it under control. There were some remissions, but mostly it was just different levels of bad.

Having had a total colectomy with an ileostomy in Oct 2010 was the best decision ever. If you have the surgery, there are options of trying the pouch later on or just sticking with the bag. Personally I don't mind sticking with the bag for awhile because it's brought some normalcy and for the first time in a LONG time I am feeling normal again.

Lots of us have been there when a doctor is telling us he's going to rip us open and remove a large part of us, and it is scary. If you weren't scared, that's what I would be worried about.

You can try to hold out on the meds a bit longer, but if you're at 10 mg/kg of Remicade and/or prendnisone and you're still flaring badly, surgery might very well your best course.

On surgeons? Shop around and ask around. Make sure he is a colo-rectal surgeon. DO NOT SETTLE!!! If after meeting the surgeon you don't feel assured, move on if possible. You are trusting the rest of your life to this person.

Don't worry right now about failure rates, I assume he was talking about pouches. That's to worry about later on. Worry about living right now.

Best of luck, hope this helped.

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 3/9/2011 9:26 AM (GMT -6)   
Calm down.........

Yes, surgery is scary and all your surgeon is doing is pointing out the risks. I think that is wise. Now read this very carefully, all of us who have been dx with UC are at risk for manifesting Crohn's later on. It's because there is no definitive test to rule it out. So, even though I was dx with UC and really felt I had UC, it would not come as a total shock to be dx with Crohn's one day. If you are sick enough to warrant surgery, then the colon has to go no matter which disease you have.

I hear more complaints from surgery patients who's surgeons DID not explain the risks to them. I think you have found yourself a good surgeon but if you want to see if he is recommended, go to www. j-pouch.org and ask.

Jpouch surgery has a 90% satisfaction rate. You will be fine.

Sue

Collicat
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Date Joined May 2009
Total Posts : 827
   Posted 3/9/2011 2:20 PM (GMT -6)   
I totally agree with everything Sue said.

In our experience, we found the best colorectal surgeon that we had access to and went into my son's consultation feeling very uplifted, sure that this was going to solve all his problems. We left, an hour later, terrified and greatly disliking this surgeon that would tell us so many bad things.

Any honest surgeon MUST tell you the full list of all possible complications. This is very major surgery and a lot of complications can arise. They will not sugar coat the experience. The important thing is that you have a fully qualified surgeon that can make the needed judgement calls on how to deal with any such issues.

If this surgeon is a respected colorectal surgeon and did not feel that you should be having surgery he/she would not agree to do it. It also sounds like your GI is in agreement and that says a lot. Most GIs want to put off surgery as long as possible.

To make our long story short... My son, Dillon, did have surgery and did have more than his share of complications. In retrospect , it was so important that we knew of all the possible problems and that nothing was a surprise. Dillon is now a year post his J pouch takedown and, like 95% of people that have gone this route, is VERY happy with the outcome.

As a side note....Dillon and I grew to love his surgeon , whom we so greatly disliked at the beginning. To our family, she is our GOD.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 3/9/2011 4:55 PM (GMT -6)   
Are you having second thoughts about surgery or just about the surgeon? It sounds like a second opinion might make you more comfortable? I am scheduled for surgery on the 22nd and while I am freaking out a bit about a myriad of things, I am confident I'm doing the right thing and I trust my surgeon 100%.

Did the Boston surgeon say he wanted to do anything to eliminate his concerns about Crohns? I would think he would want to be reasonably sure before moving forward.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/9/2011 7:26 PM (GMT -6)   
My surgeon is Pat Sylla at Mass General. She is massively impressive, and very into doing things laproscopically. There are also other very highly rated colorectal surgeons here. If surgery is what you want to do, and you're in Boston, you're in a great place to find a good one....

I would say, though, that you are pretty newly diagnosed. Perhaps humira or something else would work for you. I went several years after where you were at before deciding on surgery.... course, the things I tried didn't work so well, but for some they do. I know some people decide earlier on surgery than I did and are happy about it. It is a big decision, and something you don't want to rush.

Good luck.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/9/2011 7:28 PM (GMT -6)   
One other thing -- the CCFA in Boston runs a "Power of Two" program, where they hook people up with others to talk to. My friend coordinates it, and its great. If you call in, they could hook you up with people who have had the surgery, have decided not to have the surgery, etc. It's very helpful, and you also get some good tips on particular doctors and how people feel about them etc.

zoom
Regular Member


Date Joined May 2010
Total Posts : 20
   Posted 3/10/2011 4:05 AM (GMT -6)   
They have done the blood test, which indicated UC, but both my GI and Surgeon are concerned it could be chrons due to my symptoms. In a case of UC the failure rate is about 10 percent, but if it turns out to be chron's he told me that my j-[ouch will fail and I will end up with a colosotmey bag, and at 22 years old I'm not ready to face that reality. My GI has mentioned surgery to me from the very begining, always adding that he was "confident I wouldn't get to that point" but with Lialda and then Remi failing it looks like he was wrong. I am not currently on pred., my GI didnt prescribe it bc I said I was ready for surgery and didn't have severe bleeding. I guess I could try another round of it, but I am also scared to become pred dependent esp because it makes my hair fall out in big handfuls and I become the moodiest person you'll ever meet. I'm still not sure what to do, but I am a bit more calm, thanks for all the input.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/10/2011 7:20 AM (GMT -6)   
Have you had a second opinion from another gi doc? One who is not affiliated with yours (although, they all do seem to know each other). Also, is your gi doc an IBD specialist? My first gi doc was part of my HMO and I didn't even realize there were IBD specialists.... my friend from the ccfa program strongly urged me to see an ibd specialist, and I switched all my doctors in 2007, the day before I went in the hospital, to get under his care. It was a very good switch..... my other doctor was competent, although I didn't like her that much, but my current one goes to ibd conferences all the time, does ibd research, and just knows so much more.

I know it's a bit crazy to get advice online from strangers who aren't doctors etc.... but I agree you're only 22, you've only been diagnosed a while, and you shouldn't do anything permanent without an informed decision (unless it's an emergency). Pred is awful, but it;s also kind of miraculous, and there are a lot of other drugs out there besides remicade. Have you tried 6 MP? It takes a while to kick in, but holds some people in remission for years. It seems weird than any gi would be confident in Lialda, that's just asacol, right? That only works for people with very mild disease. There are a bunch of new drugs coming down the pike that might be worth waiting for (it wasn't worth it to me anymore, but i'm older, I tried more things, and I had some terrible complications)

Do you have a parent or other friend/relative helping you navigate the medical system? If not, and there's someone you can trust, please ask. It's a whole lot to do yourself....

And definitely, you're in Boston. Get a second opinion, and make sure it's from an IBD specialist. If you need names, if you can give me a way to contact you individually, I can help you access them. It can be a pain to get insurance to authorize the second opinion, but it's worth fighting for.

Glad you're feeling better about things.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 3/10/2011 8:51 AM (GMT -6)   
Unfortunately, some patients do not have the benefit of time after their diagnosis:( These diseases, whether it's UC or Crohn's, affect each patient differently so a blanket statement that you haven't had your diagnosis very long, can't really be applied.

Only consider a Colo/Rectal Surgeon! You will save yourself a lot of heart ache later.

I don't think any of us saw ourselves with ostomies or j-pouches. BUT the fact is they do happen and I don't think many of us have regretted the decision. Quality of life is the real factor and sitting on the sidelines watching the world go by isn't fun. Maybe you could ask Collicat more direct questions about your concerns since Dillon just went through his surgery?

I'd suggest a pro/con list to help visualize the items in your life that the disease is getting the in way of. One pro would be no more Meds!

Let us know how things go!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/10/2011 9:30 AM (GMT -6)   
We are always happy to answer any questions concerning our journey
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/10/2011 9:41 AM (GMT -6)   
Hi,

Definitely didn't mean to be making blanket statements, sorry if I came off that way, this medium is not the best for subtlety. I am sure all of us who have been at this for a while favor getting the best medical advice possible and making informed decisions.

I also think it's hard not to see other people's stories in terms of our own.... both a strength and a limitation. So full disclosure, zoom, I started out a lot like you, initial diagnosis of UC, although I became indeterminate after my first scope .... only diagnosed as Crohn's for sure six plus years later. I tried what you tried, and a whole lot more things, many of which work for others for years..... they worked for me some, generally not that well.....

I had my surgery two weeks ago, and despite that I am back in the hospital with complications, I am very clear about the decision and happy that I did it. But it took me a long time to make the decision. Perhaps after I am healed, I'll wish I did it years earlier (when I asked my gi doc if he thought it was a good decision, he said yes, two years ago it would have been too).

I hope you find clarity and good medical advice.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/10/2011 11:05 AM (GMT -6)   
I had my surgery to have an ileostomy done 2 years after diagnosis after all drugs failed. This was 20 years ago and then didn't have the drugs that are avilable now. However looking back if someone had offered me the option of having those 2 years back I would have grabbed it with both hands and had op earlier. I was 20yo when I had my op and never regretted it.

However it is such a personal decision, only you know when you have had enough and whether any further drug will make any difference. Your GI, one that specialises in CD and UC will know best whether further drug treatment is recommended. If you are failing to respond then it does reduce your options, there is no need to make any sudden decision. Discuss fully with your doctor, GI and in necesssary second opinion and ensure surgeon is well versed in this type of surgery. Even if you put decision on hold for a few months so you feel more confident with whatever you decide, it can be a lot for some people to get head around having a bag but sometimes it is the best way to give quality of life back. Having a bag has never bothered me, as far as I'm concerned some part of me wasn't working right so best thing to get rid of it.

Oh, ironically my surgeon is a general surgeon (I'm in UK) and he has never let me down and after each of the surgeries I have had I've never had an complications/infections.

Good luck in whatever you decide.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/10/2011 11:50 AM (GMT -6)   
If you can stand another round of Pred, maybe it will give you enough time to figure out what you want to do? I hate that stuff and can't wait to be free of it, but I'm glad it was available to give me a chance to find a surgeon I'm comfortable with and get my head around all of this. I'm only 33 (for 5 more days!) so yes, I understand the emotions behind the possibility of being "stuck" with the bag at a young age. I'm at a place though where I firmly believe a permanent ostomy would be better than what my day to day life is like with UC when I'm flaring. If you aren't there yet, then that's ok. Just keep working with your doctor and searching inside yourself and you will get to where you need to be to handle things. Keep posting here, too....all of this support really helps a ton.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/

zoom
Regular Member


Date Joined May 2010
Total Posts : 20
   Posted 3/11/2011 1:08 AM (GMT -6)   
Bluegrass-
I havn't had a second opinion from a GI, and I'm not sure mine is a IBD specialist so he probably isnt. I don't really know how to go about finding a new one that is a specialist. I've never tried 6MP, I wasnt ever given that option and being young and new to this I just accepted what my doctor said which is not the smartest move retrospectively. I would love any help you are willing to offer with finding an IBD specialist, my email is now active in my profile so you can email me from there. I'm actually in RI, but the trip to Boston is only about an hour so it's worth making for a good doctor.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/11/2011 6:12 AM (GMT -6)   
Zoom, I just emailed you with some info. I'm getting out of the hospital today, so might be slow on the computer as I rest up the next few days....

MH1943
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/15/2011 8:39 AM (GMT -6)   
I DON'T AGREE WITH THE ODDS YOUR SURGEON GAVE YOU. I HAD SEVERE ULCERATIVE COLITIS AND WAS BEING TREATED WITH EVERY KIND OF DRUG FOR about A YEAR. THIS WAS 20 YEARS AGO. I SPENT 57 DAYS IN THE HOSPITAL TRYING EVERYTHING POSSIBLE TO SAVE MY COLON. NO DICE. I HAD MY COLON AND RECTUM REMOVED IN 1991 AND BELIEVE ME, I WAS REALLY SCARED. BUT I HAVE NEVER REGRETTED THE DECISION.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/15/2011 9:27 AM (GMT -6)   
Zoom....Dillon was also not given the option of 6-mp. Our GI (who people supposedly come from all over the world to get his opinion) refused to give it to him. We were never told all the reasons but his words were " I'm not giving that to a young guy like this....you don't want to go that route". I never asked for more clarification since both Dillon and I were so "done" with the drugs and were ready for surgery.

He also told Dillon that "surgery was not a perfect answer but it was a pretty darn good one". Looking back I really think that says it all. Dillon's life is not back to the way it was pre-UC but he is living a "pretty darn good one"
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 3/15/2011 10:12 AM (GMT -6)   
I have had surgery and have had just about every complications in the book, BUT even so I would rather have had surgery and all, then live with my horrible diseased colon.
UC 1996

5 asa, predisone, 6 mp

Dec 26, 2000, Emergency j-pouch surgery

Multiple complications, J-pouch redo- July 3, 2001.

Take down-Jan 3, 2002

Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro

Gall bladder out-Oct 1997

April 2010 bad pouchitis flare-remicade (only 2 doses)

Aug 2010-adhesion surgery

Doing great! only canassa!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/15/2011 8:38 PM (GMT -6)   
Hubby tried just about everything over the years. He did have some short term relief (no remission) with Azathioprine and I was scared to death when I read about it. His GI at Mayo Clinic would only prescibe it on a month to month basis AFTER labs were faxed for CBC,AST & ALT (if I remember correctly)to monitor him. Even at that had to try Remicade that didn't work after 4 infusions (improvement should have been with the first or 2nd infustion but we held out hope and tried 4 of them).

He coped and lived with it like everyone who suffers with this but he reached the point in time that "enough already" and he was sick and tired of being sick and tired.

After the surgery his GI Dr. visited him and hubby mentioned maybe he should have done it 2 years sooner when it was suggested. His Dr told him "you were not ready then".

He had a GI and Colo Rectal surgeon he had the utmost faith in going into this surgery.

You honestly need to get a different doctor, 2nd opinion or whatever and once you think you have tried every thing to no avail then you will feel better about a surgery decision. If there are some things you have not tried yet, you might want to give it a shot. This is such a trial and error illness and as you can see from the UC forum there is tons of information there of what helps one and not the other.

That is what we did but the UC was not going into remission for him so surgery was what was ultimately needed.

With the exception of the surgery discomfort for a good week or so he knew almost immediately that he was finally out of the pain, constant frequency and anxiety that ruled his life. He was hoping for a j-pouch process but for many very good reasons once the surgeon was in there operating it wasn't meant to be. It has been 10 weeks and overall life is good and he is back in control.

Good Luck to you...this is a tough thing to deal with. You will know when the time is right for you and who is the right doctor that you are comfortable with too!
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/22/2011 7:12 PM (GMT -6)   
Zoom,

Get a consult at Lahey clinic. They are in Burlington and Peabody not that far from boston.

Rosemary
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