Has anyone been told they aren’t “sick enough” to have the j-pouch surgery? How elective is the surgery I guess is my question? I’m 31, 17 years with UC. First 4 years I was horribly sick. In and out of hospital. High doses steroids, blood transfusions. Then for some reason my body adapted I guess? I’m not as sick as I once was but still flare a lot. I have a flare probably every 4-6 months. Take steroids to get it under control. Never been in a substantial remission. Never had one year where I didn’t have issues. Yearly colonoscopy always shows inflammation. Told I have a colon full of pseudopolyps. I’ve tried every drug. Remicaid worked but then had allergic reaction. I’m terrified of getting colon cancer. If I was told I could have the surgery I’d do it but my GI is being difficult and is acting like she won’t refer me to a surgeon. I’d just like to talk to one I guess and see what they say but gosh...

Original Post

Yeah, my GI wasn’t at that point either, so I did my own research, got a consult with a surgeon and brought my last colonoscopy results for him to see.  He took me on as a patient to follow just in case I needed surgery.  Three months later, I had another flare even though I was on Remicade and had surgery about 2 months later.  I would not say it was elective.  My colon was a mess.

 

 

I’ve had UC since 2001. First 5  years were hellish. Remicade gave me 7 years of remission, then 2 years of minor flares until nothing worked anymore—even prednisone which always worked. I ended up in the hospital for 6 weeks and had 5 blood transfusions. Because it was an emergent situation I didn’t have much choice with selecting my surgeon and feel I was lucky to have the surgeon who was available. We’re all ticking time bombs in my opinion and sooner or later anyone with UC can find themselves in an emergent situation that could their make life and their recovery much more difficult. Experienced docs understand this.

Mine was certainly elective. 

Yes I had flares. Remicade along with everything else quit working. I was so exhausted after an eight hour shift I collapsed in the bed after work most nights. 

And being a man prostate cancer was a possibility being that my uc was right at the end of my colon and I had had it so long. Hard to believe my uc affected such a small part and caused so many problems. But it did. 

So in my mind I elected to have the surgery to avoid cancer first and get rid of the uc that was making me so sick. 

In my case it was elective. Although I mentally and physically couldn't go on with it much longer had I not had the surgery. 

R. 

CTB23 posted:

Yeah, my GI wasn’t at that point either, so I did my own research, got a consult with a surgeon and brought my last colonoscopy results for him to see.  He took me on as a patient to follow just in case I needed surgery.  Three months later, I had another flare even though I was on Remicade and had surgery about 2 months later.  I would not say it was elective.  My colon was a mess.

 

 

Thanks for your reply, I think that’s what I’m going to try to do....get a consult on my own without a referral. 

Jfill21 posted:

I’ve had UC since 2001. First 5  years were hellish. Remicade gave me 7 years of remission, then 2 years of minor flares until nothing worked anymore—even prednisone which always worked. I ended up in the hospital for 6 weeks and had 5 blood transfusions. Because it was an emergent situation I didn’t have much choice with selecting my surgeon and feel I was lucky to have the surgeon who was available. We’re all ticking time bombs in my opinion and sooner or later anyone with UC can find themselves in an emergent situation that could their make life and their recovery much more difficult. Experienced docs understand this.

So sorry, that sounds terrible. I agree with you that we are all ticking time bombs! That’s why I feel like I’d like to have surgery now while it’s not an emergency. I think I’d have a better recovery and better chances the surgery would be successful. 

Mysticobra posted:

Mine was certainly elective. 

Yes I had flares. Remicade along with everything else quit working. I was so exhausted after an eight hour shift I collapsed in the bed after work most nights. 

And being a man prostate cancer was a possibility being that my uc was right at the end of my colon and I had had it so long. Hard to believe my uc affected such a small part and caused so many problems. But it did. 

So in my mind I elected to have the surgery to avoid cancer first and get rid of the uc that was making me so sick. 

In my case it was elective. Although I mentally and physically couldn't go on with it much longer had I not had the surgery. 

R. 

Thanks for your reply, yes the prospect of cancer is so scary which is one of the big reasons why I want surgery. A lot of my UC is at the “end” as well...causes so much problems! I feel like you did, don’t think I can continue on like this. It’s just the same thing over and over again for past 17 years. Im tired of it. I don’t work, but stay home with my 2 young children and I’m just exhausted all the time. 

I had UC which had been quiet for many years and aFAP with really no symptoms from the UC. Having the yearly colonoscopies to remove the polyps was getting to be too hard. After constantly being told that the colon would have to be eventually removed and complications after each polypectomy, I started thinking more and more about surgery. Fortunately my GI gave me the referral without a problem. My intent was just to talk to understand what the surgery would entail, but a few months later decided to move forward. Im glad i did it when i was “healthy” and not at a time of crisis. I agree with the other comments...try to get your own referral.

KH1988, did you get a consult with a surgeon yet. Make sure you do your homework on him. Not a lot of the colorectal surgeons do j pouches. Not sure why they call it elective surgery, it saved my life. My GI told me it was time for me to start thinking about losing my colon. Let us know how it all comes out

Aimc posted:

KH1988, did you get a consult with a surgeon yet. Make sure you do your homework on him. Not a lot of the colorectal surgeons do j pouches. Not sure why they call it elective surgery, it saved my life. My GI told me it was time for me to start thinking about losing my colon. Let us know how it all comes out

Aimc, I have an appt with a surgeon on April 10. I had to ask my GI to refer me...he didn’t really want to but did anyways. He wants me to try entyvio first but I’m just hesitant. The biologics scare me. I had serum sickness to remicaid. I told him I wanted to consult a surgeon first before thinking about entyvio.

I don’t know what the surgeons going to say!? He may think I’m not “sick” enough for surgery. That’s what I meant by elective. I would prefer surgery over biologics at this point in my life, even though I’m not severely sick. I will definitely keep you all posted!

thanks for your replies!

Kh1988 posted:. I would prefer surgery over biologics at this point in my life, even though I’m not severely sick. I will definitely keep you all posted!

This is not really a sound analysis in my opinion. You are making an assumption that surgery will cure you of IBD and you will never need biological drugs in the future. This is not true in a not insignificant number of cases of which I am one. I had a colectomy as a TRUE elective surgery in 1992, when biologics didn’t exist. Had biologics existed, I might never have needed surgery. My only effective treatment was prednisone. However higher dosages didn’t stem the inflammation and when dysplasia was found in 1991 the surgical decision was made. I then deteriorated while trying to lose weight for surgery to the point where a legitimate elective surgery nearly became an emergency surgery. By the time I lost weight and was in the OR my colon according to my surgeon was dissolving in his hands as he removed it. Toxic megacolon was in my immediate future but for that “elective surgery” which was a legitimate elective surgery that took out a highly deteriorated colon.

I don’t agree with your analysis and I instead agree with your GI who apparently believes the biologics should be implemented as a treatment modality and exhausted (there are many to try) before attempting surgery. You seem to think surgery is a panacea. I would suggest reading the many “this surgery was not what I signed up for” threads on this board, mostly authored by persons who didn’t realize surgery wouldn’t cure them of autoimmune disorder or other manifestations of it and get them off meds. This is of course In addition to all the other things that can go wrong with surgery including Pouch failure.

I will say my surgery was a success because the Crohn’s I have now is much more treatable than the UC which led to my surgery, which spread and engulfed my colon. But according to your criteria or reasoning, my surgery would be characterized as a massive fail, because now I am on Remicade. My quality of life is the reason why I consider it a success.

However I am not the only J Pouch taking biologics to treat Crohn’s or Pouchitis. Many on here are, including our Moderator.

One other thing; you can visit as many surgeons as you want. Most will advocate for surgical treatment because if they didn’t, they would be looking for work. Some are straighter shooters than others, but if you want a true second opinion on effectiveness and risk-reward analysis of various treatment modalities including surgery, I would see another gastroenterologist with your last scope pics and results. Otherwise you are just shopping for an opinion that agrees with yours, as opposed to a true second opinion.

I think if I had been younger at the time I was diagnosed, I may have considered trying other biologics.  However, I was in my 60’s at the time, was diagnosed with severe pancolitis and had just had a follow up colonoscopy with dysplasia.  I was also very ill for several months.  When I first saw my surgeon for a consult, things were looking okay, but within a few months, I was back to square one.  So we made the decision.  I did not expect things to be perfect, just better.  And that’s exactly how it’s been.  I have no complaints.  I really think all of our situations vary and we make our decisions based on our individual circumstances.  Also, in my follow up colonoscopy, it was indicated by my GI that a j-pouch should be considered.  

 

CTBarrister posted:
Kh1988 posted:. I would prefer surgery over biologics at this point in my life, even though I’m not severely sick. I will definitely keep you all posted!

This is not really a sound analysis in my opinion. You are making an assumption that surgery will cure you of IBD and you will never need biological drugs in the future. This is not true in a not insignificant number of cases of which I am one. I had a colectomy as a TRUE elective surgery in 1992, when biologics didn’t exist. Had biologics existed, I might never have needed surgery. My only effective treatment was prednisone. However higher dosages didn’t stem the inflammation and when dysplasia was found in 1991 the surgical decision was made. I then deteriorated while trying to lose weight for surgery to the point where a legitimate elective surgery nearly became an emergency surgery. By the time I lost weight and was in the OR my colon according to my surgeon was dissolving in his hands as he removed it. Toxic megacolon was in my immediate future but for that “elective surgery” which was a legitimate elective surgery that took out a highly deteriorated colon.

I don’t agree with your analysis and I instead agree with your GI who apparently believes the biologics should be implemented as a treatment modality and exhausted (there are many to try) before attempting surgery. You seem to think surgery is a panacea. I would suggest reading the many “this surgery was not what I signed up for” threads on this board, mostly authored by persons who didn’t realize surgery wouldn’t cure them of autoimmune disorder or other manifestations of it and get them off meds. This is of course In addition to all the other things that can go wrong with surgery including Pouch failure.

I will say my surgery was a success because the Crohn’s I have now is much more treatable than the UC which led to my surgery, which spread and engulfed my colon. But according to your criteria or reasoning, my surgery would be characterized as a massive fail, because now I am on Remicade. My quality of life is the reason why I consider it a success.

However I am not the only J Pouch taking biologics to treat Crohn’s or Pouchitis. Many on here are, including our Moderator.

CTBarrister- Thanks for the reply but I DO NOT assume surgery is a cure all. I’ve lived with this disease for almost 18 years. I’ve spent hours and hours and hours researching everything there is to know about this disease, the meds, the surgery. I fully understand that there can definitely be problems after surgery. I understand that people get “re-diagnosed” with crohns. I understand that I may wind up on meds/biologics post surgery anyways.

Theres always gonna be “another drug to try”. I’ve tried nearly all of them. None have worked. I’m sick of the side effects, the stress and worry that these drugs are causing more damage or that I’ll end up with some incurable condition from the meds. Why shouldn’t I be able to try surgery? Maybe it won’t work? Maybe I’ll still have to take drugs after? ....or maybe it’ll be a success? Maybe it’ll be life changing for me and my family. Trust me though, this has weighed on my mind for years. I’m being careful. I understand that surgeons want to operate. I also understand that GIs are in the business to treat. I wouldnt sign up for surgery with the first surgeon I meet. I’d have multiple opinions. 

CTBarrister posted:
Kh1988 posted:. I would prefer surgery over biologics at this point in my life, even though I’m not severely sick. I will definitely keep you all posted!

This is not really a sound analysis in my opinion. You are making an assumption that surgery will cure you of IBD and you will never need biological drugs in the future. This is not true in a not insignificant number of cases of which I am one. I had a colectomy as a TRUE elective surgery in 1992, when biologics didn’t exist. Had biologics existed, I might never have needed surgery. My only effective treatment was prednisone. However higher dosages didn’t stem the inflammation and when dysplasia was found in 1991 the surgical decision was made. I then deteriorated while trying to lose weight for surgery to the point where a legitimate elective surgery nearly became an emergency surgery. By the time I lost weight and was in the OR my colon according to my surgeon was dissolving in his hands as he removed it. Toxic megacolon was in my immediate future but for that “elective surgery” which was a legitimate elective surgery that took out a highly deteriorated colon.

I don’t agree with your analysis and I instead agree with your GI who apparently believes the biologics should be implemented as a treatment modality and exhausted (there are many to try) before attempting surgery. You seem to think surgery is a panacea. I would suggest reading the many “this surgery was not what I signed up for” threads on this board, mostly authored by persons who didn’t realize surgery wouldn’t cure them of autoimmune disorder or other manifestations of it and get them off meds. This is of course In addition to all the other things that can go wrong with surgery including Pouch failure.

I will say my surgery was a success because the Crohn’s I have now is much more treatable than the UC which led to my surgery, which spread and engulfed my colon. But according to your criteria or reasoning, my surgery would be characterized as a massive fail, because now I am on Remicade. My quality of life is the reason why I consider it a success.

However I am not the only J Pouch taking biologics to treat Crohn’s or Pouchitis. Many on here are, including our Moderator.

Sorry if my last post came off a little harsh but I didn’t appreciate your tone and your assumptions about me. You don’t know me, my life, and what I’ve been going through. I also don’t see your surgery as a “fail” like you said, just because you are now on remicaid....I know the same could happen to me, but guess what? There are plenty of others out there that don’t have to take meds post surgery. Also, I’m sure you would agree that having surgery while young and reasonably healthy is better than waiting for it to be an emergency. 

I agree with your latter point- I had the surgery at age 29 after 20 years of UC. If you feel fully informed about all the risks, then I would suggest you still get a second opinion from another GI and then if surgery is deemed your best option, make sure you pick a good and very experienced surgeon. From your earlier posts I was under the impression that your current GI isn’t advocating surgery and probably doesn’t believe you have exhausted non-surgical treatment modalities. I believe that if that is in fact true, you should proceed cautiously, and all I tried to do is reinforce that cautious mindset.

Good luck.

These are hard decisions, for all kinds of reasons. I’m very glad I had my surgery, but I definitely tried the then-available biologic drug first. I chose the surgery after Remicade failed. The decision is very different if dysplasia is found during colonoscopy, at which point there is consensus that surgery Is necessary and appropriate.

The colon cancer rate for folks with UC becomes very, very high after a few decades. The rate of serious complications from chronic prednisone use is similarly terrible. Deciding to move to a more definitive treatment before it’s “absolutely” necessary can make perfect sense.

CTBarrister posted:

I agree with your latter point- I had the surgery at age 29 after 20 years of UC. If you feel fully informed about all the risks, then I would suggest you still get a second opinion from another GI and then if surgery is deemed your best option, make sure you pick a good and very experienced surgeon. From your earlier posts I was under the impression that your current GI isn’t advocating surgery and probably doesn’t believe you have exhausted non-surgical treatment modalities. I believe that if that is in fact true, you should proceed cautiously, and all I tried to do is reinforce that cautious mindset.

Good luck.

Thanks for your reply. I am 31 and have had UC for 18 years, so similar to your age/length of time with disease at the time you had surgery. My doctor is not against surgery. He is totally understanding and knows my frustration. When I asked for a referral he said that was totally fine. It was just his opinion that I should try entyvio. It’s not that I’m completely unwilling to do entyvio...I’ve always tried every drug my doctor suggested in the past. I’ve just personally got to the point where I’m frustrated with meds not working. I know surgery is a drastic measure, but that’s just where I’m at emotionally and mentally. Another thing....every year my colonoscopy shows inflammation. Every single time. On top of that, my colon is FULL of pseudopolyps. 100’s of them from the years of constant inflammation.... While I know the pseudopolyps themselves aren’t going to turn cancerous, I’m stressed that something will eventually be missed, like a cancerous polyp hidden among the others. I use to feel hopeful trying new drugs but after years of disappointment, I just don’t feel that way anymore.

Scott F posted:

These are hard decisions, for all kinds of reasons. I’m very glad I had my surgery, but I definitely tried the then-available biologic drug first. I chose the surgery after Remicade failed. The decision is very different if dysplasia is found during colonoscopy, at which point there is consensus that surgery Is necessary and appropriate.

The colon cancer rate for folks with UC becomes very, very high after a few decades. The rate of serious complications from chronic prednisone use is similarly terrible. Deciding to move to a more definitive treatment before it’s “absolutely” necessary can make perfect sense.

I 100% agree with you. It’s such a hard decision to make. I’ve failed remicaid, simponi, and humira so far, in addition to all the oral meds I’ve tried. I do stress and worry a lot about the chronic prednisone use and of course colon cancer. I’m only 31 but have had uc for 18 years. I have 2 young children and a husband to think about....I have to be around for them. I think that’s why I’m willing to do the surgery now. 

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