Calmo
Visbiome

Skip to main content

10 replies

Total proctocolectomy recommended even though UC symtoms are mild

N novovoxMember
I originally posted this issue on Healing Well but it was suggested that I put it on j-pouch.org for additional insight...

I've had UC/PSC for 23 years and I've been "fortunate" in that it has been mild and previously easy to manage flares with a quick burst of Prednisone. Latest colonoscopy showed low grade dysplasia for the first time. Doc says that, in someone with over two decades of UC/PSC, LGD is an indicator and there is a high risk of developing cancer. Leads to a recommendation of total proctocolectomy with j-pouch.

Met with surgeon today and he said majority of colectomy candidates are easy to recommend surgery because symptoms are so bad that quality of life will be dramatically improved with surgery. The thing is that I don't feel too bad at all - my symptoms are really mild and I don't have discomfort or urgency. Effectively, if I have surgery my quality of life will be diminished - which is counterintuitive logic for having any kind of surgery. The 0% risk of CRC is why the docs are recommending surgery. But is one test result sufficient to remove the colon?

Has anyone been in a similar situation (US/PSC case history and faced with recommendation for surgery when you don't feel too bad)? Did you defer surgery initially, only to have to go through with it as time progressed?

I have booked surgery for end of this week because my (non-medical) circumstances absolutely require this to be done right away or else delayed 6-12 months minimum - if at all - with ongoing scope surveillance every 3-6 months as alternative course. But I'm now freaking out because I could be one of the 50% (statistically) who never develop cancer in this type of case. and should never have had the surgery!

Any insights are welcome.
Last edited {1}
Original Post

Replies sorted oldest to newest

GinLynGinLynMember
I don't have a case history with PSC, but I do have two thoughts to share -- please keep in mind I am not trying to push you in any direction, just sharing a couple of thoughts.

First, the surgery is actually better done when you are not ill; generally a much easier surgery, easier & fast recuperation, fewer side effects, higher chance of complete healing, etc.

Second, please keep in mind that those of us who write on this page are quite often those having problems or side effects, or who are in the throes of the immediate post-op effects. All this to say: we do NOT represent the majority! The vast majority of people with J-pouches are very happy, healthy, and active. So I would suggest that an assumption that your quality of life will deteriorate with this surgery is not necessarily accurate.

All the best,
Gin
J jason411Member
Like you, I suffered from UC for over 20 years. Three years ago I had a spot that showed low grade dysplasia on my scope and had another one done six months later that was clear. Then in June I had my 2 year scope and it showed a few spots with low grade dysplasia and another with high grade, so I opted for surgery because the risk was to great. It is a tough call to make because you are under the gun insurance wise. If it wasn't for that fact I might wait and do another scope in 3-6 months, but the odds are certainly against you. The worst part is the fact that with scopes, it is really dumb luck that they found it because you can't really sample the entire colon. With me, who knows, maybe the second scope six months later just missed the spot that had the low grade dysplasia three years ago. I will say this, being healthy and off prednisone or any of the biologics is certainly an advantage, because you can then get a 2 step procedure instead of three.
ATXGuyATXGuyMember
I'll play Devil's Advocate a little bit here.

I went from UC diagnosis to total colectomy in less than three weeks because my first flare ended up in toxic megacolon/bowel perforation.

I didn't go through the years and years of flares that many people have. In retrospect, there might have been mild symptoms off and on, but who knows; I never had massive blood loss or even more than a day of loose bowel movements here or there, but did have urgency issues from time to time.

In any case. I went into the hospital to treat my first UC flare and left a month later without a colon, but unlike a lot of folks I didn't get to choose this route, and if I didn't have to do it to live, I wouldn't do it.

If I was in your shoes, I would wait. Given your non-illness timetable, if you can have follow up scopes, etc, I don't think it's a terrible idea. This is a tough surgery and it's difficult on your body.

Just my 2 cents, but really, follow what your heart and head are telling you -- you probably already know what you need to do.
suebearsuebearMember
I was one of those that had surgery for a low quality of life due to UC but something you said I feel I need to comment on. You said that 'if you choose surgery, your quality of life will be diminished.' That has not been the case for me or most of us. I do everything I did prior to surgery. I'm a long distance international hiker (100-200 mile thru-hikes), and backpacker. Having surgery has not prevented me from doing the physical activities I enjoyed even when I had UC in remission.

I can understand your reticence; I think you have to ask yourself if you are willing to live with UC in remission but with the possibility of cancer growing? I'm personally not much of a risk taker so if your diagnosis was mine, I'd probably opt for surgery.

Sue Big Grin
W wsh6745Member
It is a very difficult decision for you to make. I didn't have much of a choice either. I was on max doses of Humira, Imuran and Prednisone to keep my UC in remission. Finally, my dr said he could no longer prescribe Prednisone because it was causing too many other symptoms and he was worried about my long-term health. (I was consistently increasing to 60mg/day to stay in remission).

I had my surgery at the beginning of this year and it's been rough. When people say it's a rough surgery, I never contemplated this rough. It truly does take 1+ years to heal. As far as getting back to "normal" - I wouldn't agree that's possible. I do think it's possible to live a healthy, happy life after surgery but it's not normal. I still have 5-10 BM's per day and the surgeons say 4-6 is the best they really expect. It isn't "normal" and I'm still worried about travel, boating, public restrooms, etc.

It is hard to say what you should do because cancer is about the scariest diagnosis there is, but please just go into it with a more realistic expectation than I did.

Do you have a strong support system at home? I needed a lot of help with the ostomy and with emotional support throughout this entire thing. This surgery is very very difficult physically and emotionally. My husband was absolutely awesome every step of the way which was very helpful.

Please keep us posted on your decision and feel free to message me if you have specific questions. So many people on this forum are happy to help and have great wisdom and information to share.

Good luck with your decision.
ElmerFuddElmerFuddMember
It is the LGD that is troubling. Keep in mind that your cancer risk goes up 1% a year with each year you live with UC. But only you can make this decision, and I am assuming you are a day away from surgery if you have continued down that path.

One other thing to ask about is the % certainty your doctors have that you have UC and not Crohn's. The PSC makes me wonder if there are other digestive issues that may emerge after surgery (pouchitis, Crohn's-like symptoms, etc.). Then again, you say your UC is pretty mild and well managed.

My UC was pretty much the same as yours - mild and manageable. I would never have considered surgery at that point. In thinking about what I would have said if they had found LGD, I probably would have tried to hold off. I ended up in the hospital at 36 years of age with little choice. We actually opted to try and save my colon first, but things went south and I was forced into surgery - essentially to save my life.

Not sure what I would do. I probably would have put it off at the time. With hindsight, knowing that things would go south and force me into surgery at some point anyway - I might have changed my mind.

I have not been disappointed with my j-pouch in the 8 years I have had one (well, the first year was rough Smiler )

Steve
Jan DollarJan DollarModerator, RN, retired
My primary concern would be the large increase in cancer risk with both UC and PSC. So, there is less room for a wait-and-see approach. This is why the colectomy is recommended for just LGD, when HGD is the typical mandate. Still, this is an evolving issue and opinions vary. But, for now, the consensus is to err on the side of caution. By the way, PSC is mostly associated with UC, so Crohn's is less likely.

Bottom line, I'd probably opt for the colectomy.

Jan Smiler
EndiEndiMember
I believe if it is mild and you don't really feel that bad, then wait and take the time you need to make that decision. I think you need to consider second opinions and take the time to research and self educate. If my symptoms were only mild, I would have NEVER opted for a colectomy. But the facts of your last colectomy throw a curve ball. If my doctor told me i was at high risk for cancer, I would probably lean toward getting it removed. But that's just my personal opinion on the matter.
TE MarieTE MarieMember
I think that you are postponing the inevitable. In your case I would be getting the surgery now instead of later. That is just me as I know I would be worrying about it all the time if I didn't have the surgery.

I opted to have my colon removed when I could have probably squeezed a few more painful years out of it with some nasty drugs. I thought it better to do it while I was still healthy and not wait until I had another grandchild. In my case age played a part in my decision too.
ccpouchoccpouchoMember
I had UC for 30 years and had not had any flairs in the past 3 years. But I had developed mushrooming polyps and the biopsy after the total colectomy revealed beginnings of colon cancer. I followed the GI's advice and was having regular colonoscopies. Had I waited it would have developed into full blown cancer. They caught it just in time. If I were you, I wouldn't take the chance. Have the surgery now while you are healthier.

Add Reply

Views: 229
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×