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UC, now cancer.... time for Surgery

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Posted 11/9/2013 5:46 PM (GMT 0)
Hi Group,

I am 34 and have lived with UC for the last 13 years and have been in and out of flares. My symptoms have been moderate to severe for a long time. Recently I went on Imuran which has worked really well for the last 9 months. Unfortunately my latest colonoscopy that I had two weeks ago revealed cancer in my colon. There wasn't a tumor, but my Dr said a biopsy taken from one of the ulcerated areas showed cancerous cells.

He recommended I get my colon removed immediately as it was no longer worth saving with the severe UC and now the cancer.

I had a CT scan, did some blood work and met with a surgeon. The CT scan came back totally normal and the blood work was normal too. I am thinking we caught it early but I am still scared.

The surgeon was highly recommended by my GI and I think he is the best in my area. He trained at the Cleveland Clinic, which is suppose to be pretty highly regarded.

Anyways, they want to perform a J Pouch surgery and they want me to do it as soon as possible given the threat of the cancer.

I didn't seek a second opinion or anything, I really wouldn't know who to ask.

I am writing looking for some advice or feedback from any others that have gone through this. I am kind of nervous about doing the surgery, but at the same time I know I shouldn't wait as there is a risk the cancer can spread.

Post Edited (Matt K) : 11/9/2013 10:51:47 AM (GMT-7)

Posted 11/9/2013 6:35 PM (GMT 0)
Though I never ended up with any kind of cancer, I did struggle with UC for 6 years before I had my colon and rectum removed one year ago.  I am almost twice your age so some of our issues are quite different but I can tell you this,  it feels wonderful being able to say that I never again have to have a colonoscopy and I never have to worry about getting colon cancer as a result of my UC disease.  I opted for an ileostomy but if I had been younger like you, I probably would have gone with a J Pouch.  Either way, get rid of the danger and get on with your life.   My life is literally back to normal despite a couple of setbacks that required 2 more surgeris this summer.  Just little bumps in the road compared to my best days having UC.

You may read some real horror stories on this sight and unfortunately, no one can say for sure how things will turn out, but for everyone of those sad tales, there are tons of great outcomes.  I had a great outcome.

Trust your Journey Matt and remember that we are hear to inform and support you.

Posted 11/9/2013 7:05 PM (GMT 0)
Hi Matt,
So sorry you are going through this. I had my colon, rectum, and anus out due to severe Crohn's disease. I have a permanent illeostomy so I can't tell you about a j pouch. However, I am doing great. I feel so much energy now and can do things with friends and family. The surgery was life changing for me. I am so glad you caught this early on. I hope everything works out for you!
Posted 11/10/2013 2:18 AM (GMT 0)
Hi Matt, I second what desertsun and smd have said. I too had my colon, rectum and anus removed a few months ago after suffering with crohns for 10yrs and haven't looked back since. I had a permanent ileostomy so can't comment on a j pouch. I also didn't get a second opinion but went on what my GI and surgeon advised and it all worked out well. Good luck and I wish the best for you.
Posted 11/10/2013 7:26 PM (GMT 0)
Hey Matt, My story along the same lines. I had crohn's and was going to be in stem cell transplant study when they found precancer cells in colon. Said chances dying younger went right up with with this discovery. I couldn't be in the transplant study and went for the surgery. Colon and anus gone, illeostomy in it's place.

A pouch has it's hard moments. I didn't get choice of J pounch with crohn's.

I sure would do it all over just the same way. I am training for a marathon in Mesquite Nev. at the moment and raced in the World's Triathlon Champioships in London this last Sept. No one told me I would be able to do those things I love again because I guess the future is never clear, but I am and more. Science is amazing!!

Maybe the second opinion would make you sure it's right, then get it. Important to feel it's the best and right thing to do. No regrets when you do it. I am thankful with all my heart I didn't wait any longer and often think back on how extra long I suffered out of fear of the unknown.

Hope you figue it out soon. Times a wastin'. Good luck
Posted 11/10/2013 11:15 PM (GMT 0)
Scheduled for ileostomy takedown on 11/20. Will. Be glad to get rid of "Gertrude"...the bag, and the ostomy. Had diverticulosis an abcess May 3, 2013. Long story short I was a 24/7 caregiver to my husband who had terminal lung cancer, vascular dementia and ALZ.

He passed in August.

Now, I am looking forward to being myself again.

Regards to all. Incidentally, a Bermuda 40 is a yawl rigged, centerboard/keel sailboat.
Posted 11/10/2013 11:19 PM (GMT 0)
BTW, I'm 78 years young!
Posted 11/11/2013 12:48 PM (GMT 0)
Hello Matt,

The first thing I want to say is that you are so, so lucky they found the few cells just at the turning point. I don't know what your doctors said about chemo, but it could be that because they caught it so early,you won't have to go through that. I had UC for about 15 years before I had a colectomy. It was only the last 3 years that were getting severe, and I didn't think I could live my life if it kept getting worse because it was already becoming unliveable. On top of that, my doctor kept reminding me with each colonoscopy that he might find some changes. He seemed to think I had a good chance of getting cancer and kept preparing me for what he might find. I also had a stenosis, very unusual with UC, and it was probably going to cause a shut-down within a few months.
I now have a j-pouch and am living well enough with it. The 6-8 bm's per day, after 1 year, is a low price to pay for feeling well and not being stressed by a disease popping up again, not to speak of the threat of cancer.
So I think you can move ahead with the surgery very positively. You are saving your life and saving yourself from the long, uncertain torment of living with cancer. What you will go through - surgery and recover (two or three times) is easy, compared to cancer and cancer treatment. Surgery now will keep you on this side of safety, and you can then move on with your life without UC holding you back and sapping your energy.
Posted 11/11/2013 12:50 PM (GMT 0)
PS: I wouldn't wait, if I were you. You have the blessing of early discovery - make it work for you. Delaying surgery will only jeopardize you and put you through that much more stress.
Posted 11/11/2013 8:15 PM (GMT 0)
Hi Matt,

When I got my surgery I opted out of the j-pouch. I don't even know why they recommended for UC patient as part of your rectum is still intact and the tissue can still have the disease. I also heard that having the j-pouch was just like having UC again. It's alot to go through to find out whether it will work or not.

When they did mine the surgeon did keep my anus intact and even with that I'm having complications. I schedule for surgery again next month over a year from the first one. I kinda jumped into it myself and went with the first surgeon as I was off my meds do to serious side effects and the UC was growing fast. My surgeon also trained at Cleveland Clinic.

One word of advice make sure you get it done local. My surgeon was 3 hours away and when I got complication and went to my local ER the surgeons down here kept pushing me away. I'm now filing a completed with the health department. I getting my redone closer to home but 50 miles may be impossible to travel.
Posted 11/12/2013 3:20 AM (GMT 0)

Peace&Harmony said...
I don't even know why they recommended for UC patient as part of your rectum is still intact and the tissue can still have the disease. I also heard that having the j-pouch was just like having UC again. It's alot to go through to find out whether it will work or not.

A very small part of the rectum is left intact, and although we don't understand exactly why, in the vast majority of j-pouch patients this rectum (called the rectal cuff) goes into spontaneous remission and doesn't become inflamed again. Depending on the study the satisfaction rate for j-pouches in UC patients is between 90 and 97%. I know that is cold comfort for someone in the 3-10% that isn't happy with the outcome, but the reason they recommend it for UC patients is that it is an overwhelmingly successful procedure in the vast majority of patients.
Posted 11/12/2013 4:43 AM (GMT 0)
Hi Matt
I'm sorry to hear that you were diagnosed with colon cancer. I also had ＵＣ and that led to me getting rectal cancer. I had no choice but to get my entire colon removed and did the jpouch. I'm glad to hear that they caught your cancer early. Although it's scary at first, like your surgeon suggested, I'd get it removed as soon as possible.
It sounds like you have the right people you need right around you :) Good luck :)
Posted 11/12/2013 3:09 PM (GMT 0)
Thank you all for the comments and support.

I guess on the positive side I am kind of killing two birds with one stone, so to speak, getting rid of the colitis and the cancer.

I called the surgeons office and they are looking into dates for me right now.
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