Hi All! My name is Ross and I am a 57 year old male that has had UC since 1998 with no flareups until June, 2008.

After my most recent colonoscopy (September, 2019) my GI called (his nurse) and said the samples were benign and during my follow up with my GI he told  me he was giving me massive probiotics to try and reduce and possibly get rid of the inflammation that was present. If it didn't work he said there were other meds we could try and hold off surgery for futher down the road.

About a week after my last consult with me GI, his nurse called and told me that I needed to consult with a surgeon and gave me his number. During the consult, the surgeon was able to speak to my GI and told me that one of the samples was precancer. I was floored and pissed. The surgeon said that both he and the GI would rerun the pathology to be sure. 

On Tuesday (Oct. 29, 2019) surgeon called and said it was still positive and the he recommended surgery. I am in the process of getting a 2nd and possibly a 3rd opinion. Any recommendations of who to contact....I live in Fairfield, CT.

If it turns out that I do indeed need surgery my biggest fear and or concern of going with J pouch is how much control does one have.....I fly to Brazil once a year and I also am very passionate about American Rev War reenacting and it would devastate me if I had to give that up.....

Thanks for any advice...... 

Original Post

Asa, I’m sorry you got disappointing news. After 21 years with UC colon cancer (and precancerous lesions) are very common. Others can recommend surgeons in the Connecticut/NYC area. I’d like to reassure you that for most J-pouchers with healthy pouches there is generally no urgency to find a toilet unexpectedly.  Since my surgery I have taken up scuba diving, which is about as far from an accessible toilet as you can get. Good luck!

Hello, Ross.

Every body is different and will respond differently to surgery and recovery. I was in the same situation as you: UC for many years but very few flares. I was diagnosed with cancer by my gastroenterologist after a colonoscopy. It was confirmed by a surgeon. My two step surgery took place within three months.

Recovery for me was routine. First few months were difficult with frequency, urgency, bum burn, ointments, sitz basin and bidet rinses, plus the usual pain and recovery from surgery, like most people here. One day around the eighth month my pouch matured and I don't have any issues now, very healthy. You'll usually get some warning, slight pressure, before you search for a restroom. Your food choices will be very important, crucial, to your recovery. I don't eat anything raw, no raw vegetables or salads, no sugar (can contribute to pouchitis), eat low carbs, no deep fried foods. Soluble instead of insoluble foods are important. And there are restrooms everywhere so your air travel overseas should not be too worrying -- just book your seat near the restroom. And there are products you can take to slow down your output if you are reenacting an event in a rural area with no facilities!

I didn't wait for or need a third opinion. And I didn't want to wait too long. It's like holding a ticking bomb. When you've had UC for longer than 10 years, your risk for cancer goes up by many percentages. You want someone to take that bomb from you. I hope that precancerous means yours is contained within the colon walls. Mine was. You don't want it to grow through the walls and travel through the lymph system. I don't want to scare you, but this is reality. I think you are so fortunate that your specialists caught it early and it can be dealt with swiftly. One thing that did help me, before I joined this group, was the opportunity to chat by telephone with three of my surgeon's patients so I could ask my long list of questions, since I would have the same surgeon, be in the same hospital, and likely have the same team of nurses. Ask your surgeon if he has a roster of peer patients willing to talk. The same thing you are doing here, which is very smart. Good luck to you.

Each of us is indeed different. Unlike Winterberry, one of my favorite things is to book a window seat on the airplane far from the bathroom. I enjoy every possible food with no restrictions. It can take a while though.

If you are looking for a second opinion from a surgeon I would recommend Dr. Vikram Reddy at Yale.  He is my surgeon and is excellent.  Very down to earth.  I had my surgeries, 3 Step, the first surgery at 61 and my last just before I turned 62.  I have good control and when I travel, I make sure I have extra Lomotil with me.  I had my done laparoscopically. with no complications and very good recoveries.  I’m sure he could connect you with other patients to speak with as well.  Unlike you, I wasn’t diagnosed until age 60 with moderate to severe pancolitis that did not do well with medications or biologics.  I made the choice to have the surgeries partly because of my age and because I wanted to have it done when I was reasonably healthy.  Good luck with your search for another opinion.  

Scott and Winterberry - thanks for your input as it made me feel a bit better about my situation.  I am more optimistic about the the possible surgery than I was before finding this group. 

The only reason I am seeking a second opinion is because of the complete 180 my GI pulled on me. Guess I'm really pissed he didn't call me to let me know that he changed his mind or diagnosis before sending me to see a surgeon. 

Just a side note about my handle Asa Lay.....he was a lieutenant in the 6th Connecticut Regiment (the Regiment I belong to) and I read a newspaper article that said he and 15 men crossed Long Island Sound and captured 2 ships laden with supplies bound for NYC and brought them back to Greenwichz CT.....2 ships with only 15 men....amazing!

Ross you are welcome to PM me anytime.  I am also prior military, retired from a hospital unit in West Hartford.  BTW one of my physicians also had Dr. Reddy.  When I last saw him, he told me he would refer patients to him even though he is supposed to recommend surgeons within his network. He speaks very highly of Dr. Reddy.

Hi Ross, I'm near your age and had my surgeries last winter.  Like CTB I decided to have surgery before I got any older or sicker  (or developed cancer).  I also had laparoscopic procedures.  I was supposed to have a 2 step surgery, but unfortunately developed a leak & peritonitis and wound up with 4 surgeries.  I still recovered well and am 100% continent.  I can even *fart*at*will*.  I run and weightlift and plan to ski this winter.  Not everything is great, and I envy people who have a healthy colon, but it is not the end of an active life.  I do eat a low volume diet and also skip meals when I expect to have limited bathroom access.  

Hi Everyone! Thanks for all your input. Just an update on my condition. It turns out my GI has very bad communicating skills as there was a major miscommunication between us. He did not stress the fact or even recommend seeing a surgeon when I last saw him simply telling me surgery was down the road. In his mind several months, in mine several years. I made sure that I was not happy about him not communicating better (with both barrels, LOL).

I have an appointment with Dr. Reddy on February 20th at Yale New Haven. I'm hoping to schedule the operation then but was told by my GI I will to examined by my GP before hand. Probably because of my diabetes, high BP..... 

This is still very scary for me as I cannot know what lies ahead. My wife is acting nonchalant about it basically saying "Just have it removed" She never really understood my feeling about having this major surgery. I truly believe she doesn't really understand the magnitude that surrounds it......Maybe she is just trying to put a "happy spin" on it.

The only bright spot I see that right after surgery I will about 10lbs lighter! LOL

Good luck with your consult with Dr Reddy.  The first time I saw him for a consult, I wanted to be able to choose my surgeon, just in case I needed surgery in the future. That was in July, I returned a few months later and had my first surgery that November.  No regrets!

I scheduled right away with Dr. Reddy and had my blood testing that day.  I had a quick visit with my GP and a pre surgery visit and phone call with Yale from what I remember.  I brought my colonoscopy results from my latest scope also.  He had one that I had done 5 months earlier as well.

Hi Ross,

I also live in CT, am same age as you (56) and actually grew up and lived in Fairfield and now live in New Haven County the last 20 years. I have heard very good things about Dr. Reddy. I actually had my thyroid cancer surgery at Yale in 2015 and my care there was excellent. My colectomy was done in 1992 in NYC. I had UC from 1972 - 1992 (ages 9-29) and was facing the same prognosis as you- 20 years with UC plus dysplasia = significantly increased cancer risk. Do you really want to wait until you get cancer to have surgery? I think you will be in good hands with Dr. Reddy. Be careful about shopping for multiple opinions, they will likely be the same, unless you haven’t tried biologics. 

The high BP is a concern - hope you can get that down. Dr. Reddy will want it down. I have same issue now but didn’t at age 29. Good luck 

Do let us know what Dr Reddy suggests! 

You will have a period of time with an ostomy, since I'd doubt you are a candidate for a 1-step surgery.  I actually wound up with 2 separate ostomies, and had to deal with the bag for almost half a year.  It is hard, but you'll have no choice but to manage.   The loop ostomy (my second one) was much, much harder than the end ostomy I got when the colectomy was done.  

You will feel much better once the diseased colon is gone.

I have to admit that Dr. Reddy was the only surgeon I consulted.  I just knew from the start that he would be my choice.

Hi Everyone!

Saw D. Reddy a few days ago (liked him from the start). I'm scheduled for surgery on March 23rd providing that I lose 10lbs.....so it's diet time until then. I had been binging on things that I most likely will never have again (tomato sauce, 

He wants to do the 2 step procedure and also wants me to see me GP and a cardiologist (because I am diabetic) to get cleared for surgery. I see no problem. Also my GI wants to take a look at my liver with an MRI. This is a problem as I have claustrophobia and need an open MRI. I tried doing it with a normal one but didn't work.  I think I would be fine with it if they put me feet first.

I do have a question though. I know that for the first month I can't lift anything heavier than a can of soda. Does this go for the rest of the recovery until the second surgery?  What about recovery for second? I take care of my elderly father and he sometimes needs help getting up. I have my sister coming to help me for the first month after each surgery but need to let her know how long she needs to stay. The shorter the better as she has clocked a lot of time away from home and hubby this past year or so (helping friends recover from surgery, our dad, and daughter who had her first child). 

Also, are adult diapers a possibility for those times when a bathroom is scarce?

I returned to weightlifting between my surgeries and again after takedown with no issues.  But I was methodical about training and started with extremely light weights.   Each person has a different tolerance for this, consult your surgeon.  

Speaking of which, you still have a few weeks prior to surgery, you may want to work on strengthening your core muscles beforehand.  Adding aerobic fitness is good too, some fast walking would be helpful.  

I am fully continent, the only time I have urgency is when I'm running and didn't start with a fully empty jpouch.  Do suggest you sleep on a chux while you have the ostomy and right after takedown.  I had some leaks with the ostomy and did have one accident right after I came home from takedown surgery.  Fortunately the chux saved my bedding from a midnight disaster.  

Hi

Glad it worked out with Dr. Reddy.  I haven’t used adult diapers since my surgeries, however I did use pads on my bed for a little while, about 2 months. I took a couple from the hospital.  Did Dr.  Reddy mention Kegels for spincter control.  They helped a lot for me and you can do them anytime.  I do eat tomato sauce, though I may have to use the bathroom during the night.  Good luck with your surgery.  Nice that it’s a two step instead of three!

Hello, Asa. 

I had the same tests prior to my first surgery: cardiologist for an ECG test (I am also diabetic) and an MRI to check liver and other organs to make sure the cancer did not appear anywhere else. I told my surgeon that I would not be able to tolerate the enclosed MRI. Even though you do go in feet first, your head also goes in all the way, trust me, we tried it and I scrambled off the table. He said he needed that MRI done no matter what, so he gave me a tablet called Ativan. I was directed to take it 15 minutes before I climbed onto the MRI table. I clutched that tablet in my hand like a lifeline, and I told the techs to let me know in advance when it was my turn so I could take the pill. I don't remember anything other than getting on the table and lying down. I fell asleep, or was so out of it I didn't mind anything. It worked, and I lay perfectly still inside the machine and they got the images, clear as a bell. You won't be asleep for hours, it's just long enough for the images, but ask your doctor if you need only one tablet, or higher dose depending on your size, age, tolerance, etc.  I don't want you to come to consciousness inside the machine. 

i couldn't lift anything after my surgeries because the tightness of the staples and adhesions inside that developed quickly, prevented it. You'll know when you should not lift because you'll feel tension and pain in your surgical site. You do not want to split open your staples or stitches. Immediately after surgery, I needed help from the nurse just to rise from my bed. Don't be shy, ask for their help, and if you're having a home care nurse for the first few weeks, they will help you manage your temporary ostomy, your bag, and any skin erosion you might have around the ostomy. When you wake from surgery in hospital and you need to sneeze or cough, remember to brace your stomach with a pillow or a book because it will hurt a bit, and it will pass. You'll be hooked up to a morphine pump. That small button to the pump is your friend while you recover. Pack a big leakproof water bottle so you can drink all the time in hospital. You will be okay!

 

  

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