Total or Partial Colectomy?

[TGOLD]

I just found this forum today; please bear with me if I make newbie mistakes. I am a 57 year old male with a very strong familial history of colon cancer. I still have a 16 year old kid at home. My sister tested positive for Lynch Syndrome, and, though the results of my test are still unknown, the assumption is that I have Lynch as well.

Because of my family history I have been having colonoscopies about every four years since I was 30. My colonoscopy last month found two precancerous polyps, and one flat, cancerous one in my transverse colon. The margins can not be determined to be cancer free.

My gastroenterologist told me I needed a total colectomy and sent me to a surgeon. The surgeon said I only need a partial colectomy, removing about 60% of my colon, from the small intestines to past when the cancerous polyp was found. That sounded better to me, but I went for another opinion.

The next surgeon said it was up to me, and presented me with pros and cons of the total versus partial colectomies: basically, quality of life versus chances of cancer recurring. He said that either option was defendable- neither was a crazy choice.

I have read some horror stories from total colectomy survivors- ten or more bm's a day, all diarrhea, urgency issues, painful or burning bm's- none if it pleasant. Many who have had the partial colectomy report almost normal bathroom habits, by comparison.

I am waiting for the results of the Lynch test: if it is negative ( which is extremely doubtful ) I will do the partial. But, assuming it is positive, I am looking for input from people who have had a colectomy- which way would you go if you were in my shoes? I understand the decision is mine, but I'd like to hear what you think.

So... Total or partial colectomy?

Thank you very much

[bathroom_tile_blues]

Hey there,

You can look at my post history but I, a 32 year old guy with lynch who opted for the total colectomy. I honestly didn't think twice and just opted for the total over the partial. I had the surgery done laparoscopically and the recovery was rather quick (I was eating a steak within two weeks after surgery). As far as bowel movements go, I can't say I've ever really been inconvenienced by them. If you eat or drink aggressively, you can surely expect to feel some consequences the following day. However, for the most part I eat what I ate before the surgery, and feel pretty normal. Prior to surgery I averaged maybe 1 a day and now I'm about 3 or 4 max a day. I dont regret my decision at all. Trust your doctors. If they leave it up to you, know that the total colectomy isn't so bad (at least from my perspective).

If you have any questions, don't hesitate to reach out!

Good luck!

[Nik Colon]

Very sorry. I see one reply, hopefully others with experience will let you know of theirs. Best wishes

[TGOLD]

Hey there,

You can look at my post history but I, a 32 year old guy with lynch who opted for the total colectomy. I honestly didn't think twice and just opted for the total over the partial. I had the surgery done laparoscopically and the recovery was rather quick (I was eating a steak within two weeks after surgery). As far as bowel movements go, I can't say I've ever really been inconvenienced by them. If you eat or drink aggressively, you can surely expect to feel some consequences the following day. However, for the most part I eat what I ate before the surgery, and feel pretty normal. Prior to surgery I averaged maybe 1 a day and now I'm about 3 or 4 max a day. I dont regret my decision at all. Trust your doctors. If they leave it up to you, know that the total colectomy isn't so bad (at least from my perspective).

If you have any questions, don't hesitate to reach out!

Good luck!

Thank you. I'm gonna wait for the Lynch test, even though it is about 95% certain that it will be positive. The second surgeon wants to do another colonoscopy to make sure he can see the scar and/or tattoo and tattoo it some more if needed. If he can't find where the cancerous polyp was, it'll be a total. He also wants to do a ct scan to see if it has spread but I'm seriously considering refusing that, as there is a ton of evidence that ct scans can cause cancers.

[Wonderfullymade]

I had a total colectomy since I was concern the cancer would return being "probable Lynch" at the time( blood work wasn't back when my colon decided to explode). I don't regret my decision. The surgeon said he left enough to do a reversal later, but I am not sure about that after reading some things, and I have a high output so I might be a trapped at home. It isn't the time for me to consider that yet, and since I really don't have an issue with the bag (except for $ reasons and some eating habits) I am content with myself the way I hope that helps you. I am on an osotmate forum as well and it seems about 50/50 about how people feel it.

[TGOLD]

I had a total colectomy since I was concern the cancer would return being "probable Lynch" at the time( blood work wasn't back when my colon decided to explode). I don't regret my decision. The surgeon said he left enough to do a reversal later, but I am not sure about that after reading some things, and I have a high output so I might be a trapped at home. It isn't the time for me to consider that yet, and since I really don't have an issue with the bag (except for $ reasons and some eating habits) I am content with myself the way I hope that helps you. I am on an osotmate forum as well and it seems about 50/50 about how people feel it.

Thank you. So, you had a colostomy? I'm told that is unlikely for me, though not impossible, as my cancerous polyp is in the transverse colon, nowhere near my rectum. What they would plan to do with me is either attach about 2 feet of my colon to my small intestines or attach the small intestines to my rectum. I wish you all the best and thanks again for your answer.

[Lydia666]

I don't know about total vs partial but please don't refuse the scan of fear of cancer. One ct scan won't give you cancer!

[Wonderfullymade]

I had all but a small portion of my colon removed, enough to attach the small intestine to my rectum. My tumor was in the ascending part of the colon...way on the other side, but since it was probable that I had lynch syndrome and I was told it had an 80% chance of reoccurrence I asked the surgeon if he could just remove it all. When I woke up from surgery I had an end ileostomy. He said he had left enough that if I wanted to be reattached later I could. Other then having a bag and not being able to just eat whatever I have been good with it. In the beginning I had a few leaks, but after we figured out what type of appliance worked best for me I haven't had any troubles. I feel fortunate to not have had much because the trouble I did have was...awful! But...my issues were resolved fairly quickly by some good WCON nurses!

[NoFear32]

Hello,

I am 32 and one year ago from this April I had my entire colon removed. They attached my small intestine to my healthy rectum and so far so good! Recovery from the surgery was another story, but that was because I developed an illeus that went undiagnosed for 3 days.
I was diagnosed as stage 3b as I had 6 cancerous polyps all over my colon, and one 6cm cancerous mass in my sigmoid. 2/55 lymph nodes came back positive after the surgery pathology was done. I went through the genetic testing after my surgery and do not have Lynch or any other genes that would pre-dispose me to further cancer. I also just finished 8 rounds of chemo (FOLFOX).
As far as living life without a colon - it's really not so bad. I use the restroom 3-4 times a day, and eat pretty much everything like I did before. There are certain foods that pass thru faster and will make my 'guts' a little noisy, but I have never had urgency issues or bowl problems that I couldn't control. My doctors have all told me to take Imodium if I want to decrease my restroom frequency (like if we go camping, etc), but so far it has never bothered me that much.
The decision to remove your entire colon or not is obviously yours, but as someone who just had it done I can tell you that from my experience it is nothing to fear. Life is obviously a little different now physically because of it, but it does not stop me from doing or eating anything that I want!
God Bless and good luck with your decision!

[elise]

I see value in both. I was also given the option and I chose a partial. I regret it in some ways (still need scopes and the anxiety that comes with scans/scopes etc) and I knew going into my first few scopes after surgery that I may wind up with many more polyps and may have to do a full colectomy after having a partial. Not fun.

But in the end, 4 years out, I'm glad I chose the partial. I'm not growing polyps at an alarming rate and scopes every 2 years is manageable for me. And though my bathroom habits aren't perfect, they are very easy to work around. I definitely have urgency and definitely have 3-4 BMs per day but it's manageable and very predictable.

Know that in either case, you made the decision that made sense at the time.

Elise

[GreenLakeGirl]

In considering a partial, you should ask what kind of surveillance you will receive to make sure that the remaining section stays cancer-free. For me, my surgeon and oncologist were recommending colonoscopies every three months for the first year, followed by six months for three years (so basically, as often as I would get CTs). That was too much for me, and I was willing to trade the risk of more bathroom trips for fewer scopes and less physical surveillance.

I had a rocky first year or two with my j-pouch, but the last three have been awesome. I'm not shy with the lomotil, and my surgeon encourages me to take it when I need it...so i take a dose 3-4 times a day most days. (It's like imodium, but easier for me to take.)