Which surgery to have? (Major dilemma!)

[Gutsy]

Hello. I need to have surgery soon, but I have a complex situation going on and I could really use any feedback on how to proceed. This gets complicated and it's long, but I will be very grateful for any suggestions. This is a real mess!

I was diagnosed with colon cancer a couple of years ago and had a partial colectomy. After the surgery they did a genetic test and found I had MAP polyposis so I need to have the rest of my colon removed or I'll just develop cancer again. I also have a (seemingly benign) mass in my messentery, and I've been told I need to minimize my number of future abdominal surgeries because surgeries increase the odds of MAP patients developing messentery growths which are non-cancerous but still dangerous and inoperable.

I am trying to decide between a J-pouch with some rectum remaining, a J-pouch with no rectum left and K-pouch/T-pouch/BCIR/whatever. For various reasons I consider a long-term colostomy my last resort. I have seen Dr. Lin at UCLA (who did my previous surgery) and Dr. Kaiser at USC. I am also trying to arrange an appointment with Dr Schiller at Olympia Medical.

Here are the pros and cons of each.

1. J-POUCH WITH SOME RECTUM REMAINING: This would apparently give me the best daily function. Dr. Lin tends to be conservative and does not recommend this, feeling that my rectum already has too many dangerous polyps. Dr. Kaiser at USC wants to go this route. He did a flexible sigmoidoscopy so he has seen my insides, but he's not as familiar with my case as Dr. Lin. If I go this route there is always the chance of more cancer or that it will fail and I'll need more dangerous surgeries.

2. J-POUCH WITH RECTUM REMOVED: My understanding is that this has a significantly worse quality of life than a J-pouch with some rectum left. Also (I think?) there would have to be SOME tiny bit of rectum remaining for the connection, so I could still develop cancer. There's also the risk of eventual failure, more surgeries, etc. Dr. Lin at UCLA suggests this option.

3. K-POUCH/T-POUCH/BCIR: Dr. Kaiser does the T-Pouch but feels it is only a last resort. Dr. Lin does not do them at all and feels that they are too risky. Dr. Schiller does the BCIR and I haven't seen him yet. I keep hearing that these procedures are risky but I can't get solid info on HOW risky. To me it would eliminate the colon and rectum, thus giving me a much lower long-term risk for cancer. It also seems like the quality of life may actually be better than a J-pouch in some ways. (Instead of using the bathroom constantly and at random, I'd have some control over when.) I also get the feeling my diet may be less affected than with a J-pouch. And it would be one surgery, instead of two like the J-pouch.

I am very, very eager to get this whole mess done and get on with my life. I'm trying to do whatever is most likely to have the best quality of life and the fewest complications long-term. (And as I said, a colostomy is a real worst-case scenario for me.)

NOTE: I am very tall. All of my doctors are cautiously optimistic they could make a J-pouch work, but my height is an additional concern.

[cbsmith]

I have FAP, familial polyposis, which is similar to MAP but with potentially more polyps. I had surgery in 2014 and had similar choices as you do. Because of the polyps already in my rectum I was advised there was a good chance that they would come back and could cause cancer if the rectum wasn't removed. FAP also increases the chances of the Desmoid tumors after surgery you talk about.

I chose to have the complete colon removed as well as my rectum and have a permanent ileostomy now. I didn't want to take the chance with leaving my rectum intact and having to have another surgery in the future.

[MissMolly]

Gutsy:
You are facing an important and major decision, but I have to think that you are doing yourself a grave disservice by harboring such a negative outlook on an ostomy/stoma.

I am trying to decide between a J-pouch with some rectum remaining, a J-pouch with no rectum left and K-pouch/T-pouch/BCIR/whatever. For various reasons I consider a long-term colostomy my last resort

I comment on this forum in memory of my beloved friend, Belle, who asked that I continue in her legacy to enlighten awareness of ostomies. Belle chose to have a permanent colostomy after a problematic reversal from treatment of rectal cancer. I have a permanent ileostomy owing to an expensive perforation due to high-dose corticosteroid use.

Having an ileostomy, for me, is simply No Big Deal. That I have a small, quarter-sized stoma sitting on my abdomen is a non-issue in my day. It is not an overwhelming piece of intestine projecting from my abdomen. My stoma is small, looking much like a button on a shirt sleeve.

My ostomy is not "gross" or "yucky" to see, there is no "eewwww" reaction. It is a part of me, just as are my fingers and toes. Care for my ileostomy takes but a few minutes a day. Emptying the pouch is simple and does not disrupt the flow of my day. No one would know that I have an ostomy pouch. Modern pouches are discrete, low profile, completely odor free, and do not rustle or make any noise.

I am very, very eager to get this whole mess done and get on with my life. I'm trying to do whatever is most likely to have the best quality of life and the fewest complications long-term. (And as I said, a colostomy is a real worst-case scenario for me.)

Why do you consider an ostomy to be a "worst-case scenario?"

Because where I sit, knowing as I do individuals with J-pouches who are miserable with recurrent pouchitis and bowel frequency and anal leakage, an ostomy does offer the probability of "the best quality of life and the fewest complications long-term" (your quote and desired end-point).

A J-pouch is not as simple as having surgery and having a fully functional and compliant distal digestive tract. The neo-rectum is fashioned for a portion of the small intestine, a soft tissue that has none of the functional characteristics of the original rectum. The J-Pouch has to "learn" to become a rectum (expanding to allow for holding capacity of feces, neuromuscular control that enables the pouch to defecate at your voluntary will). Pouchitis is an ongoing problem for many, requiring frequent antibiotics and corticosteroid foams. Clustering and frequency of bowel movements is a frequently cited issue - bowel movements 8-10 times a day are not uncommon. The bowel consistency is a loose/mushy/slurry. It is not a nicely formed and semi-solid mass as is excreted from an original in-house rectum. Bottom Line: A J-Pouch is not a simple replacement for a functional rectum.

You do not mention your age. But surgical success of a J-pouch diminishes with age, for the simple reason that the transplanted segment of small intestinal tissue is less adaptive and less able to adapt to the role of a neo-rectum.

The BICR approach has its own limitations. There are very few hospitals and physicians that are skilled in its surgical creation and after care. You will be limited in your post-operative care and, should complications arise, you will most likely need to return to the hospital and surgeon that created your BICR. You cannot go to a local/community hospital or local surgeon for ongoing care needs associated with a BICR. What if you move and relocate? How will you age with a BICR?

With an end-ileosotmy, you can be on a pathway to better health and a return to your life-style with less likelihood of additional future surgery. A proctocolectomy would remove your rectum and leave you without risk of rectal cancer and mesentery masses.

I am genuinely happy and content with my ileostomy. I had no time to consider options. Mine was an emergency procedure. Perhaps not having to anguish options has made adapting and adjusting to my altered digestive tract easier than what you are facing in having to make an informed decision. But I can genuinely tell you that my ileostomy has not negatively impacted my life in the slightest. I actually prefer having my ileostomy than an intact digestive system. It is that simple and easy to care for. My stoma is well behaved and gives me no grief.

I would suggest you go to a J-pouch form and discuss the complexities of your case with other J-pouchers.

http://www.jpouch.org is a fine support forum, well respected.

The HealingWell ostomy forum also has active J-pouchers.

http://www.healingwell.com - and select the ostomy forum and/or J-pouch forum

The United Ostomy Association Form (UOAA) would be another source of impartial information on having an ostomy. Perhaps you are avoiding the best option in your negative appraisal of an ostomy.

http://www.ostomy.org

My friend, Belle, left this world with a series of writings in which she discussed her decision to have a permanent colostomy. Her writings are archived, here, on this forum. Her narrative is a poignant reflection and worth reading. She wrote the 3-piece blog with the hope that she could make a lasting impact on others. Belle would be pleased to know that others continue to look to her writings for insight and inspiration. You can find Belle's 3-piece narrative and links on a recent thread located one back back on page 2, the thread titled "Difficulty passing stool." Belle's narrative is titled "Colosotmy Colundrum." Rest in Peace, Belle.

Do not blindly discount an ostomy out of fear or negative stereotype. There is nothing that you cannot do with an ostomy. On the UOAA forum you will find individuals who suba dive, travel the world to remote and distant places, play racquet ball and slide down the water slide with their kids, pack-back Yosemite National Park, camp, attend yoga classes and graduate school. Individuals who are tax accountants, school bus drivers, physicians themselves, stay-at-home parents, Boy Scout Leaders. Need I say more?

There is a quality life to be had with a stoma/ostomy. I have severely compromised health and receive Palliative Care. Of the numerous health issues that I toggle, my stoma/ostomy is the least of my concerns and gives me the least/no grief.
- Karen -

[Gutsy]

Thank you very much for the feedback. I'd rather not get into my reasons for my determination to avoid a colostomy. I'm glad you've been able to thrive with yours, but for myself it remains a last resort.