After checking out this page for a couple years now, I decided it was time for me to participate and ask the experts. 

It has come to the point in my UC life that I have reached the end of my medication rope.  I have had it for 8 years and every drug under the sun has been tried and has eventually failed on me. I have had anywhere from 2 years to 4 months worth of remission.  I told myself Stelara was the last drug I would try and then I was done being a guinea pig to this disease.  I am a new mom so playing the "escape from a room as quick as possible to get to the bathroom" game is no longer in the cards for me.  The side effects no longer just effect me, I have my family to worry about and my health is more important than ever now.  I mentally gave myself one more year and then I would get the surgery.  That one year would help carry me to my wedding and hopefully another pregnancy! Well, that 1 year timeline I gave myself has abruptly ended two days ago when I started flaring just 1 month after Stelara put me into remission (the fastest any drug has failed me).  I literally do not have any other options of medications, and even if I wanted to go on prednisone (which I am also DONE with) it doesn't even touch me anymore.  

So here I am, no medication options, 1 year away from my wedding and my son just turned 8 months. Do I get the surgery and risk becoming infertile, complications and all of the above?  Or do I tough it out, fight it with diet, do every holistic approach under my belt to get me until I can have another baby and then give up my colon? 

I have been to many consultations with surgeons and doctors and half say hold out as long as you can and the other half told me they would have taken my colon out years ago.  Confusing to say the least ... 

Original Post

These are hard decisions, balancing risks, benefits, and costs, each with murky probabilities. If you try to simplify the decision by focusing on one part of this you  end up with a simple-but-false conclusion. A good decision requires allowing all of that information in without becoming overwhelmed by it, but that’s easier said than done.

The risk of infertility from the surgery is real, but it’s not enormous. The fact that you are (sort of) in control of it can exaggerate its importance. The risks (including to fertility!) of not having the surgery are just as real, but may seem less like the result of a decision you control, and more like the result of a disease that you don’t control. That perceived lack of control can cause us to underestimate the risks from the thing we don’t do. It’s important to compare the paths as honestly as we can manage, which means risks against risks, and benefits against benefits. For example, the path you describe as “tough it out” could instead become “emergency surgery while pregnant.” I hope not, but UC doesn’t care what either of us hope. It’s particularly important to not simply compare the best possible result of one choice against the worst possible result of the other.

The surgery would reliably consume months of your life, but UC can (unreliably) do that, too. Is this better (less overwhelming) with one baby at home or two?

The risk of colon cancer from UC becomes quite enormous as the years go by, eventually becoming similar to risk of lung cancer from smoking. Colectomy eliminates that risk, by and large. But the real decision you are describing is the risk of delaying surgery a bit, which is more nuanced.

I’ve jumped around a bit here, but I hope some of this is helpful as you consider your choices. You have described a case of UC that just won’t quit, with likely-ineffective management strategies left to you. When I ran out of medical options I moved on to the next best choice, but your mileage may vary. I hope you do very well on whatever path you choose.

Scott’s post is a good summary of the cost-benefit issues, but in my mind the colon cancer risk looms as much larger and more concerning than the risk of infertility- at least as time goes on with no surgery. It was ultimately the decisive factor for me. However I had poorly controlled UC for 20 years, not 8, and the cancer risk was greater, and I also had dysplasia. Your post is silent on the results of biopsies/dysplasia. However it doesn’t sound like your treatment is headed in the right direction despite biological drugs and that is, and should be, very concerning. Good luck with the decision.

Well I had UC for 16 years. I started having my surgeries in November after a 6 month flare. I was done and I knew I wanted to see a surgeon. I had my last surgery a month ago. You could be done with it all within the next year and still have your wedding.

Not sure about infertility as I'm not trying to conceive. Passing on my bad UC genes would be devastating to me. I would forever feel guilty. 

My GI also tried to get me back on to prednisone before surgery which I refused. I already have osteoporosis. I need to think long term. 

This is a tricky one, my personal opinion is don't give up on your colon if there is a chance.  I had UC for 10 years, then got it sorted through 'holistic' means... I was completely normal for 15 plus years until the docs recommended preventive surgery as they thought I had dysplasia, second opinion confirmed so I had the op, but once out there was no dysplasia found in the tissue they removed... Bit annoyed to say the least... 

I have a good jpouch outcome, I can eat everything, I need minimal meds, but I pine for my colon every single day.  Jpouch or ostomy is a way of coping rather than a solution.  It will probally be better than where you are, but a good day is far from a good day with a colon.

That said it's unclear why you waited this long to try all avenues to resolve your situation?  Maybe you haven't been ill for that long? Personally I did everything at the same time, diet, supplements, exercise, outlook and also meds from the docs.  If you have suffered for any length on time, when you hit a certain age (around 40 on the UK) docs will probally start advising you on the advanced risks... Personally I didn't want the op, in which case the docs didn't see the point in continued scoping if I wouldn't follow their advice, obviously I couldn't risk it without the scopes, so I was kind of forced into the op.

The point of my story is that it is possible to get better from ulcerative colitis, but also if you have been really ill with it, at some point you may need an op anyway, if only as a preventative measure.. if so being fit and healthy gives you the best chance of a good outcome.

I acknowledge my viewpoint is different to others because I had a fully functional healthy colon before the op.. if I was in a lot of pain and discomfort and at the end of my tether, if welcome the pouch in sure.

 

In my case, I was diagnosed with severe pancolitis (fast and furious)in 2015 and had my first surgery in November that year.  My colon was a mess and I did not do well with the only biologic I tried-Remicade.  I lost 35 lbs. in a matter of less than 2 mos., no real appetite, TPN, shingles, 2 blood transfusions, tachycardia, a few hospitalizations, including a reaction to Remicade (severe upper back pain after an infusion) and a few weeks in skilled nursing facility.  J-pouch was recommended a few times and my sister also had a situation similar to mine, with her S-pouch done fairly quickly as well.  I decided to seek a surgeon to follow my case and to be prepared for that possibility.  I was in better shape, gained back about 25 lbs. going into surgery and had a follow-up colonoscopy that did not show improvement.

 Add my age into this and I made the decision, with my surgeon to go through with it.  I was 61 when I started the process and have had the pouch for 4 years.  I got back the pathology report which showed moderate to severe pancolitis-severely active.  I don’t believe I really went into remission during this time at all.  Also wearing depends all the time wasn’t so great.  Also, going into surgery I had a case of Erythema Nodosum-a pretty severe skin condition that those with UC can get (though less than 5%).  

 Is life perfect for me?  No, but it is much better than what I went through.  Being diagnosed so much older, I had my children and a career.  I retired last year, but went back a few days a week.  I do home visits which gives me lots of flexibility and opportunities to use bathrooms.

I do remember my surgeon saying that when he has young women considering having children, he would advises performing the colectomy first, allow time for the Mom to have children if she wants and at a later time, the j-pouch.  

My sister had her surgeries in her late 20’s and was not able to have children.   She had open surgery and quite a bit of scar tissue.

Honestly having children should be a complete non consideration. I don’t believe it’s a terribly bright thing for persons with a genetically passable disorder to be planning on having children. It’s also selfish thinking and not thinking of the child’s welfare. People generally don’t think about long term financial implications in having children, anyway. In the USA right now we have a major health insurance crisis which is only going to get worse with an aging population. We haven’t figured out how to solve the issue and overpopulating isn’t going to help matters, especially with more and more jobs being lost to automation. I see how difficult it is now for children of my coworkers, and I feel greatly rewarded by my decision not to have children, as the only reason for doing so would have been selfish.

I am in a relationship with a woman for the last 2 years and she has talked about wanting to have children. If it happens, it will not be with my sperm LOL. 

Anyway I realize all of the above is just my opinion and perhaps a minority viewpoint, but I crossed that off of my list of concerns in having surgery. What was a bigger related concern for me as a man was the danger of having permanent impotence. Unfortunately there are some male members here who had that happen. I was advised by my surgeon to bank my sperm. I didn’t. As a 29 year old I was worried about it, and the first erection I had days after surgery was an exhilarating relief.  I see that as a more valid concern for males in having surgery than having kids.

Hi Charlie, wow big decision right. My UC was similar to ctbs. Fast and furious. I only had it for a year and a half. Never had remission for more than weeks at a time. Anemia, blood clots, weight loss, 6 blood transfusions in a seven month period. For me, I was sick of being sick. I opted for the j pouch.  It hasn't been perfect by any means, but I've passed the one year mark now and things are starting to go my way. I was 59 when I had my last of three surgeries. In my opinion, the only thing for me that would have been better is if I could have somehow achieved a healthy colon. That wasn't going to happen for me. I happy with things as they are now. I think above all else, you need to think of your health, and everything else will follow as it should. Even if it means maybe no more children. Good luck to you. I hope whatever you decide that it turns out okay. Keep us informed.

Aimee

Thank you all for your input! It is much appreciated to hear from fellow suffers and the crossroads we all face.  

I have been lucky enough to stay health in all of my flares.  I have only been hospitalized once and even then my vitals were great. I have not needed surgery yet and all of my scopes aside from the inflamed parts have had positive results- as I said- very lucky especially knowing how badly this disease can rip you apart.   

I have always tried to heal my gut with diet, but as we have all done before - when in remission, you try to forget your UC life and enjoy the good while it lasts (eating pizza, having drinks with friends, going out for ice cream etc). Anything to make you feel normal again.  Knowing I'm at the end of my rope here may be the inspiration I need to keep going with it. 

I have an MRI scheduled for next week and will take things from there. One day, and one step at a time. 

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