The Devil's Choice - Surgery for a Happier Life or Enduring Agony?

(Sorry for the essay folks, I would have said less, yet that wouldn't get the point across. Further warning, mildly graphic explanations ahead. Enjoy reading at your own risk).

I met with my new surgeon today, a good guy, honest, (which was relieving), and probably the tenth I've had over these years. We spoke about the future, if I was to receive the surgeries I would need to receive to live a pseudo-normal life. I'll explain the reasons for the surgery here, since below will be the details of why this is, (was), important to me. I've been waiting for a very, very long time. Ever since I was 12. The issue is a gamble. Below are the details.

First, is a happier lifestyle. I will have more comfort, I will be able to shower again normally, and I will not have to wear some black fanny-pack-looking wrap that gets confused for a bra every time someone walks into the bathroom. I'll be able to sleep comfortably, as the pain caused by this thing will no longer bother me, and the wrap, too, won't be in the way of comfort. However, the most important thing to note is relationships, as I believe we all know how difficult that can be. This is hindered at the moment, one of the limitations, however, is also one of the reasons to lean left on this decision. Choose, perhaps, to not go along with the plan the surgeon laid out. I will get more into that momentarily.

Second, a con is that when this surgery, or surgeries for plural, is underway, there's a 60-40 ratio of success for someone in my position. As the surgeon stated, 60 is success and 40 is not. This is due to my illness being pre-cancerous, as well as extremely prone to becoming aggravated by the slightest tampering. If I do go along with this plan the likelihood of the illness returning is high, as once remission is taken out of the equation and we attempt to make the new medical plan work, (a J-pouch to be specific), there's a chance inflammation will return at a far greater expense, so much so, that we move to three,

Third, the downfall to this 60-40 ratio is for one, my situation is peculiar, as my illnesses, one that is curable by consistent treatment, (Colitis) and the other, (Chrohns), which is not at all curable, makes the situation very unpredictable. The primary issue is that once we begin with the J-Puch we cannot stop, for the first year of preparation, by this time surgery one is done and two is underway, the Chrohns, like an old man, will likely come out to yell and wave his cane around in fury. I will, from what the surgeon has told me, have 5-10 years of happiness. As 80 of the people who get this surgery are pleased with the outcome, however, most of those who do are not in my condition. I am very healthy, oddly enough, apparently healthier than the majority of people my age. Yet that one issue, that incurable illness, if it wants to come out of its sleep state it could destroy my life for good.

Let's address this more thoroughly. The first issue is that ratio, there's a 20 chance for the illness to return in full the longer I remain with it. That 20 increases yearly after the 10-year mark. 1 each year, and this is general which means my situation could be at a greater risk, possibly 40 if tampering takes place. Add 1 to that each year. At this time my current medical situation, let's call it the IO, (Ileostomy), is 7 years in. The 10-year mark, for most people with this illness, can be problematic as the illness will begin to tear at tissue once again. At this time it is already attempting to do so. The recent CT scan showed a moderate amount of inflammation, not enough to show concern. However, I did not mention this to anyone before, mostly because I'd get hospitalized if I did. There is bleeding, mild, but nothing truly concerning. It has stopped for a few months now, I will have to watch it. However, if there is already a problem, the problem will only grow worse, and if I tamper with it, it will become angry for waking it up. One of the most jarring things I was told is that if this occurs if the illness decides to return in full, I will have to revert to my current state. However, with a twist, the rectum will be removed entirely. I've already lost my large intestine, mind you. The tissue down there, as I learned on my own while studying health, is connected to the sexual organs along the prostate. (We're all adults here, right?) So, in simple terms, if this tissue is removed sexual function will be removed too. So not only will comfort and stability be ripped away from me after these 5-10 years of "happiness," but after this, I will have nothing left. One could even go as far as to say I would be less of a man, as I would lose the defining feature of one. (Except for the beard, that saves me a little). So for a recap, if I choose to live a normal life, or what is close enough to it, I will likely after some time face extreme conflict. There's a chance I won't, I could go 40 years with no issue at all, yet during all of this time I'll have to check every year with my doctor, do an exam to check my condition, and likely take numerous medications too. All of these medications cause severe side effects, which is the last thing I need. I've been given the devil's choice, as I will now call it since each option is awful. Option one is to live life comfortably for a while, 5-40 years at best, probably not even 40, and live a happier life. However, I will then have a greater chance of this being ripped away from me and everything that has happened thus far being reversed, as this happiness I was promised by the surgeon brings about the possibility that everything I was now "happy" about is used against me. I take the happier route, the route that gives me the life I have never had, or, I take the second option and choose not to get the surgery, and live in agony for the rest of my life, however, I stay content with this agony and run no risk of further conflict. What is worth more? Living life to the fullest, being happy and smiling for real, or, living life strife-free in the end and living a long, unhappy, miserable life of regret? Sorry for the graphics, I assume you all understand this by now.

If you read till the end, my condolences.

Oh my, such conflict in trying to make the right decisions. I think I totally understand the mental anguish you are going through. I had a similar struggle regarding reversal, last September, without nearly as many medical issues that you describe. I wrote about it under the heading "My Epiphany" back then. After reading your post, you would consider me a "Lily-livered coward" and I would agree. However, my distrust of medical professionals and life experiences serving hospital time were key in my decision making. I can only wish you the best and say that "I understand"......hugs, jb

Only you can answer what's best for you. I know what my answer would be without hesitation, but that's me.

I couldn't imagine facing what you are at your age. I was 74 when my moderate colitis eventually gave way to C-diff and took my colon with it. I am waiting to find out when and if a reversal can be done. I am going to go ahead with the surgery, even if it means opening me up again. But, my situation doesn't hold a candle to yours. All I can say is I hope things work out the best for you. Thank you for the cogent and well-written post. Reading what other people have gone through and continue to experience has been a real eye-opener for me ever since I joined this great group of people.

Daniel

I cannot imagine being faced with this kind of decision at such a young age. I agree with others here, that it is really not for anyone else to recommend what is the right choice for you. My heart goes out to you and I can only say that I sincerely hope you are happy with the choice you do decide to make. Suggesting you consult with other medical professionals seems unnecessary as it sounds like you've seen plenty already.

Terry

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

The medical professionals I know have certainly led me astray, although they are the only ones to trust on this matter. At least the surgeon was honest enough to warn me.

Thanks JB,

1) The other pill was blue? I thought it was green. Guess I need to rewatch something. 2) I am horrible with math/statistics- I see things in pictures and numbers don't work well. So I've read your post a few times and finally I had to throw the statistics out the window.
Help me think through a couple of things here... you said you are miserable now? Is that physically? Emotionally? Both? Is the other condition you mentioned terminal? Are you trying to squeeze as much good time as possible into a 'what if' scenario or is it a sure thing?

I'm always (not exaggerating) the 1-2 of people this happens to statistic. So not the same, but I was given less than a 2% chance of being able to have a child naturally. Then I had a surprise... my daughter. So while you could decide based on statistics and they're full of valuable data- sometimes... pretty sure there's always, almost always a 'green' to consider.

Hi Zen,

After reading your post I'm struggling a bit as to how to answer. Not what to say, but how to say it. Let's try this...............

First, this is the wrong place to be looking for advice on your situation. Even if it was jam-packed with people in your same situation......you're unique, as we all are. So what we say here has no relevance to your situation or your decision. Second, you rely on probability and statistics way too much. Forget the numbers. Go talk to the best of the best who treat your conditions, not your local Docs. Nothing against them, and even if they are some of the best.......see what the other best ones have to say. There are no do-overs with this kind of stuff, so you need to understand what the consensus is regarding your path forward as well as the lone voice or two that doesn't agree with the majority. The reason(s) they don't agree may be very important.

So...........the bottom line is that you need to gather a LOT more information before you commit to a decision like you're pondering. Talk to Docs at the Centers of Excellence for IBD, Gastroenterology, and Colorectal Surgery and use what they tell you to make the best educated decision you can. You also need to read up on the latest literature on cancer treatment (Metabolic cancer treatment) and the real cause of autoimmune diseases. With that information your "odds" will improve significantly, but you have to do that legwork yourself, as you're the only one with skin in the game. When you make your decision you want to be sure you left no stone unturned. Then, regardless of the outcome, you'll know you did everything in your power to make the right decision........and you'll have no regrets. Now get busy!

;O)

I look at it this way, what I am aware of now is not much, not even the doctors know since this situation is so abnormal. Terminal, not so much, it can reach this level, however, if tampering takes place. That's why the statistics are such a gamble. On one side I can choose not to have the surgery, the issues of course remain, stoma and all, yet safety will be higher. On the other end, I can have the surgery, (2 of them), and possibly live an 80 better life, or so I've been told. Maybe there is a green pill - I'll have to look for that option in this.

Completely agree. The surgeon himself actually made these statistics based on what he already knew, CT scans, previous treatments, etc. I certainly know the decision is my own now, yet I have to wonder how many people here have been in a similar situation with the reversal plan. (Love the hat by the way).

I only have one question -

Being very "green" as an ostomate and having no experience with most everyone else's reason for their ostomies (I only had a non-malignant growth - no pain or indications anything was wrong until a few days before my surgery at age 76), I question the urgency in your decision making.
Since joining this site, my eyes have been wide-opened in awe of the many people who suffer from the many, many issues ending in ostomies. The substantial empathy I feel for all these folks sometimes overtakes my daily thoughts, especially for young people like you. At 19, is it at all possible to delay any "fix" your medical people are offering you? You have your whole life ahead of you and scientific breakthroughs happen every day. jb

On a lighter note: when my daughter was 10, she was sitting on our kitchen counter watching me prepare a meal - with a piece of food in my hand, I said to her "hmmm I wonder if this is still good - taste it and see what you think." Her response was "you're old - you taste it. I have my whole life ahead of me!"

Hi Zen,

Sorry, I'm late to the party. I work odd hours, and my time on our site is limited, so I like to hopefully make an impact. Everyone here has your best interests at heart. The best things I've heard are: Don't overanalyze, do your research, do what you feel is right, and what you can live with.

Everyone's stories are going to be different from yours, and your story is very compelling.

I hate to do this, but I am... I've had my ileostomy (Lily) for over a year now (I'm just a baby) and Ken Butt for 9 months (still a baby). With the multiple surgeries and the chance of ED versus battling Crohn's for the rest of my life, well, you know what my choice was. I say this because, even with the chance of a reversal, I made my decision at the start of it that this is the choice I'm making and I'm sticking with it. I'm physically fit, I play basketball, lift weights. I'm mentally stable (don't ask my friends that question ;) ) and I'm enjoying my life. With everything I've gone through unless my chances are 100... I'm good with changing my bag every three to four days, waking up with a full bag after having a phat burger and fries, wearing an ostomy belt when I go out, and even the occasional leak for the next 40 years.

After all that being said... "You do you booo!!!" You know who you are and what you can handle.

Best of luck, and we're here for you.

Hi Zen, I am also a late starter on this. Not many people on this site can truly empathise with your dilemma because of the very depth of your journey and I have to commend your strength of character, but among all that information is a complete mass of unfathomable percentages and ratios with ifs and buts amounting to virtually no practical conclusions on your problem. Basic definite factual answers are not easy to form here and the lack of them doesn't promote enough confidence to give a decent answer.... but zen,.. I personally believe you will eventually disappear up your own arse if you try to make sense of that mixture of information. It's too complicated, also because you mentioned the magic word 'precancerous' I couldn't ignore that, that's the game changer for me. My personal priority would be to lay my concerns more in the directions and of how that will affect my future prospects because that's the threat that changed most lives of the ostomates reading your post.

I really wish you well,

Brian.

Then sounds like you know what you want to do. Get the surgeries. Live your best life until your situation changes. Then pray and still live your best life.