I planned surgery due to dysplasia and it was done on elective basis. However my surgeon wanted me to lose 10 pounds and I struggled to do so due to Prednisone. When I finally lost the weight, scheduled surgery, did all surgical pretesting, banked sufficient blood for surgery (was not done laparoscopically), 9 months had gone by and I deteriorated BIG TIME. My surgeon told me that when he took my colon out it dissolved in his hands, and that had I not had surgery when I did, I was weeks away from toxic megacolon.

All of this is to illustrate that you can go from elective surgery due to LGD to a big mess in a very short period of time. Truth is I was in a downward spiral for years before the LGD test came back but never thinking about surgery until my doc reviewed the test and recommended it. It went from elective to life saving in 9 months.

Wow CT! What a story!! So glad you made it through. I have spoken to a few folks who were also very sick but yours sounds the worst...I am fortunate to not have to lose weight and have been told I am a perfect candidate for Lapro (given you are wanting to have it!) It is weird to have such a big surgery when feeling fit as a fiddle. But four out of four gastro docs said I am playing russian roulette to not have it so here I go. Wish me luck!

Miss CB I wish you the best with surgery, but your chances are good being "fit as a fiddle" - that is when you want to have the surgery, as you will have a much better chance for a great result. In my case, deterioration was rapid and this does happen in some cases, but to be honest I was SHOCKED when he told me what condition my colon was in. I did have some pain but my main problem was very poor continence as I got closer to surgery. I had my surgery in 1992 by the best in the nation colorectal surgeon at that time (the legendary Dr. Irwin Gelernt at Mount Sinai NYC), and to have him cut me I was happy to do whatever he wanted. However even he seemed shocked by the deterioration I had.

My main motivation in scheduling surgery was the cancer risk, due to 20 years of UC plus LGD. My then GI told me 20 years UC + LGD = very high cancer risk. A lesser concern of his was the state of the colon although he did tell me the inflammation had spread throughout the colon. That, perhaps, was the harbinger of things to come.

I think Prophylactic means intended to prevent disease? I think you are doing it the smart way! Its hard to find a doctor that will do that without you being sick, you are soo lucky!! It should be easier for you since you are doing it in a healthy way, I wish more doctors did it that way. You choosing that is pretty smart! I see you are intelligent

There are risks with doing it with one surgery so definitely be careful! I had a two-step and I was VERY sick. 

I had a colectomy because of low level dysplasia and 4 DALM lesions. I had no idea I was even sick until I had my first and only flare in a September. Five weeks later, I was told I had IBD and needed a colectomy. I was shocked. I had been quite healthy before that and had never been hospitalized before. I saw top doctors and scoured the Internet in the hopes of finding out I didn't need surgery. I would ask the doctors if they were 100% sure I needed surgery. Unfortunately, I did.

So, I walked into the hospital early on a Tuesday morning feeling fine. It was strange because I knew I was going to leave feeling awful. One of the most striking memories was right before surgery, a nurse put a yellow bracelet on my wrist that said "fall risk." It was surreal knowing I would wake up in a very different state.

When I woke up, I was quite nauseous. I was immediately given anti-nausea medication through my IV and felt immediately better. I didn't have any abdominal pain yet, but my shoulders hurt. The nurse said it was gas pains and heating pads helped alleviate it. While recovering in the hospital, I was given a fresh gown every day and underwear. The pads didn't stick well to the underwear, so I suggest buying some cheap, dark underwear. I didn't realize that I would have leakage, so wearing a pad is necessary while recovering.

I suggest you get some Depends, feminine pads, wipes and a barrier cream for when you return home. 

I had a 2 step procedure, and know very little about the 1 step. But if I could have safely avoided the ileostomy, I would have. I was only offered the 2 step.

It has been almost 4 years, and I consider my j pouch a complete success. Although I empty my pouch around 7 times a day, it's a very short experience and it takes under 10 seconds the majority of the time. I always pass gas easily and safely and I could always differentiate the need to empty my pouch and gas. The only issue is I need to take 2 Imodium before bed in order to prevent nighttime incontinence. I have never had pouchitis, fissures or any other issues.

My advice to you now is to relax and think positively. I got an essential oil diffuser before my surgery. I also got acupuncture and acupressure in order to prepare my body for major surgery. (Though that might not be possible with Covid). Don't read too many negative threads because they will unnecessarily scare you. I've read some negative threads after my surgeries that I'm really glad I didn't read beforehand. Beware of threads that say something like "all j pouchers experience ...." We're all different.

Good luck and I would be happy to answer any questions.

Kangaroo - Thank you for responding. You are exactly my story. It feels surreal being told you need this insane surgery when you feel just fine. Like you I scoured the internet and had 4 gastroenterologist who all said the same thing. Have the surgery. It is like Russian roulette otherwise. Playing with fire. This cancer spreads quickly and by the time a colonoscopy finds it - it may be too late. I am heartened that you live a normal life...yes? I mean can you exercise and keep your old schedule? What if anything is effected four years out? I also wonder what recovery will be like. I’ll be thrilled if I need just one surgery. Surgeon said he won’t know till he is inside looking. Everyone says the bag is no big deal...that you get used to it and 12 weeks goes by quick enough.

I don’t know where you live or if you are up for it but I’d love to have a zoom call or phone call if you have the time. Even if not just your response being so positive is so helpful. I am calm and super freaked out at the same time. Surgery is on the 20th.....

Carole 

Hi Carole,

Yes, my life is pretty normal. I can exercise and work a full time job. I feel the same as I did before surgery. My biggest issue is that I must take 2 Imodium or I will have an accident at night. Also, if I'm going to be out all day, I will take Imodium to slow my system down so that I won't have to empty my pouch as much. I don't think of my j pouch very much. I just got used to the bathroom visits and taking meds and night.

I had a terrible time with the bag and it was a long 2 months. My problem was an overactive stoma so I constantly had a bag that leaked and I needed to be hospitalized twice for dehydration. There is so much talk about getting your stoma working that I had no idea the stoma could lose too much. My stoma was producing more than twice the maximum amount it should. Once I realized that was the problem, my doctor said I could take Imodium, and the final 2 weeks of having a bag were fine. (My doctor wouldn't let me take Imodium before that because there is so much concern the stoma will be slowed down). Though, if I didn't have an overactive stoma, I think the bag wouldn't have been a big deal.

Recovery was tough, but it helped me to realize that it was all temporary. 

Yes, I would love to talk to you about my experience. I live in California. I will private message you.

@Miss Carole B posted:

It feels surreal being told you need this insane surgery when you feel just fine.

It's exactly why so many people die from colon cancer.  They feel fine and do not go for colonoscopies.  Look at the tragic example of Tony Snow, the former White House Press Secretary.  His mother died of colon cancer and then he died of colon cancer.  Despite having UC for quite some time, from what I read he was too busy to have colonoscopy.  Very sad end for him:

https://en.wikipedia.org/wiki/Tony_Snow

I felt awesome and had no symptoms when my stage 3 thyroid cancer was discovered.  Feeling fine does not really count for anything when it comes to cancer.  What your doctors said about playing Russian Roulette is true. Once you have LGD, that's exactly what it is.

One other thing- the surgery is not "insane" the way it is done these days.  I would not call it "insane" even when I had it done and was cut open like a suckling pig in 1992.  I would say it was rough- many complications and the 3 months with a temporary ileo were an ongoing 3 month nightmare for the same reasons as Kangaroo. But it was all worth it and I have had 28 somewhat imperfect but great years since then.  It sounds like Kangaroo had a similar situation to you, and I am sure can help you through all of the process including the mental part.  It is shocking to hear that you have to have surgery, but it's a lot more shocking to hear when you are told you have stage 3 cancer which has metastasized, and I speak from experience on both.

I was fortunate.  My doctor discovered a couple of polyps in a sigmoidoscopy and followed up with a colonoscopy.  That exam disclosed no additional polyps.  A year later, I had significant bleeding when using the restroom and I then had another colonoscopy that disclosed hundreds of polyps and produced a diagnosis of FAP.  That’s an example of how fast cancer can progress.  Fortunately, none of the polyps were malignant and I got an early version of a J pouch in a 2 step procedure.  I hated the temporary ileostomy with a passion. Just after the first operation, my wife distanced herself from me and then told me to leave after I had the reconnection 5 months later.  An ugly divorce followed and I lost my two daughters in a court hearing (but was successful in my effort to get them back).  The original procedure was later modified into an S pouch which I had for 30 years.

Due to the risks of future malignancies with FAP, I require annual scope exams.  A malignant polyp was found near the anal sphincter and successfully removed.  A few years later, high grade dysplasia was found in the same area and my S pouch had to go.  Fortunately, I was able to get a BCIR (similar to a K pouch) which saved me from getting an external bag with its quality of life issues.  My quality of life has been very good with the BCIR and am happily married and now retired in the Wisconsin Northwoods.