Do you have dysplasia? It's not really clear from your post. Depending on whether it is low or high grade it is a sign that surgery is indicated.  I was strongly recommended to have surgery after a finding of low grade dysplasia coupled with UC for 20+ years.

 

You will get better feedback if you post some additional facts like whether you have dysplasia and whether it's low or high grade, how long you have had UC and where in the colon the inflammation is located, medication regimen and responsiveness to same, etc.  Cancer/Dysplasia is not the only reason to have surgery.  If inflammation progresses or you have that history, your colon can eventually perforate and you will then end up with toxic megacolon which can be fatal.

From your profile I see that you have had dysplasia for two years and it has been 44 years since your UC diagnosis. If your dysplasia is high grade, then no doubt about it, you need colectomy. Low grade is more debateable, but with the many decades of UC (even if it was mostly remission), your cancer risk goes up with each passing year. It is not that uncommon to find cancer in the colectomy specimen when dysplasia was present before colectomy. That finding of dysplasia is your fair warning, and you'd be wise to heed it.

 http://www.healio.com/gastroen...we-follow-flat-low-g

 

I think it all boils down to what risks are more acceptible to you. Sure, your age might be a factor in how well you adapt to j-pouch surgery, but your overall health and vitality matter more. A very high majority are satisfied with their outcome and many lead very active lives. This includes strenuous sports. 

 

Bottom line, if colon cancer develops, it may be advanced by the time it is discovered, even with frequent monitoring. You'd still wind up with a colectomy, and it could very well kill you. Still, it is a decision only you can make.

 

Good luck with the second opinion.

 

Jan

CT;   Yes I do have dysplagia. Not sure of grade . Will leave message for my doctor to find out level. I have had UC since 1971. Dysplagia is located nearest rectal beginning of colon (last 8- 10 in.) I take 4    1.2 gram tablets of Lialda daily. Used to take Asacol. two Kaiser docs have advised I have colectomy. Generally have normal bowel movements for many years but now those years with UC have taken a dyplasia toll. This coming Thursday I am seeing a surgeon outside the Kaiser system for another opinion. Seems like a good idea . My records have been sent for review. I am 73 and fit. Did have a triple bypass 2 1/2 yrs. ago. Quite successful and still very active. Biggest concern is quality of life after such a procedure. Appreciate your interest. Didn't know about toxic megacolon so thanks for that info.     Rich

Jan;   What you are advising makes sense. I sent a message to my Kaiser doc about high or low grade but likely that won't matter. The surgical outcome for quality of life does. As a nurse I am very receptive to your opinion. I have taught at a community college in Orange Co. as a substance abuse teacher for 30+ years and within the division inc. Nursing so love that aspect of what you say. If I could ever call you after my 2nd opinion this week Iwould like that. Thank you so much. I am at 949 525- 7186.    (:   Rich

Rich, I have decided not to get involved with phone calls, since I already devote a great deal of time here. I hope you understand that I just have to draw a line, otherwise my personal and family time suffers. 

 

However, I would be happy to communicate via private message (dialog). I will start a dialog. If you don't have email notifications activated, look for the dialog alert in the upper right corner. Just click on it and you'll be taken to your active dialogs.

 

Also, be wary of posting your personal contact info here, as this is a public forum.

 

Jan

Jan;   My considerable thanks for your reply. Taking heed of your advice.   Rich

Rich-

 

Given all of the circumstances you have outlined, quality of life is a bit of an unknown.  But quality of life if you don't have surgery and get cancer is something you must consider as well. I think Jan gave you some real good advice. Good luck to you.

Rich......I, too, live in Orange County.  Who are you going to see for a second opinion?  I had my proctocolectomy in 2001.  I had my takedown in 2002.  I consider my experience a very positive one.  Best wishes!

Dear CeeCee;   14 years and you are positive. That helps. Somehow and probably irrationally that you are in the O.C. is also consoling. Is the term pull down meaning the creation of the J pouch?   Thank you.   Rich

Well I am 23 years out and I am positive, but you are you, and I am me. I was 29 when I had the surgery.

Rich, I think you misread take down as pull down. Take down is "taking down" the diverting ileostomy. Pull down is a very old term for ileoanal anastomosis and even predates the j-pouch!

 

jan

Rich, don't wait until you have cancer!  My 23 year old son found out last year that he needed to have his entire large intestine removed.  He has had UC since he was 6 years old.  During a colonoscopy they found three pre-cancer polyps.  Told us that within the year he would develop cancer.  Second opinion said the same thing.  They both told us that when you have IBD, and then get colon cancer it is more aggressive, and more difficult to treat.  It is always better to treat pre-cancer than when you get it.  You never will know when it started, and you could go CIS to stage IV very quickly.  Yes the surgery is rough, yes it's painful, yes its anoying.  Yes having a ostomy bag is rough to handle mentally but you are alive and you will live.  If you get colon cancer, who knows.  And I think the treatments are worse than having an ostomy.  It is a major decision that only you can make, but your quality of life with cancer is far worse than with an ostomy.

 

good luck to you.

 

dianne

Hi, again, Rich!

Jan described the takedown.  You are doing all the right things.......asking questions and weighing options.  Most of us with a J-pouch are doing just fine.  It is an adventure at times!

Hi Rich,  

I am close to your age and also was initially diagnosed with UC in 1971. I had my 2 part j-pouch surgery 7 years ago. I had some complications with an abscess and hernia, but it all worked out and I function pretty normally now. I am very active, run, bike, work out, etc. Go for it!

(also) Richard

HI Rich,

IMO alive trumps dead all the time...cancer is a whole other can of worm and if you can avoid it then please do...a colon is a colon and with a cute little J pouch you can live a wonderful life (about 90% of J poucher are too busy living their lives to post here...personal statistics...not official)...do not allow us and our problems to terrify you...

I personally believe in preventive surgery instead of curative so I would honestly get it removed out now before you have no choice...

I know that this is such a tough desicion...good luck no matter what you decide.

Sharon

skn69;  Thank you.I love your positive attitude. I will probably go for it after the spring semester ends. The brochure Kaiser gives you says you will be back to "normalcy" in a few months. My surgeon says 6 months to a year. Him I am more apt to believe. (:   Rich

I saw a 2nd opinion M.D. yesterday (one outside Kaiser)  who agreed I need surgery but unlike the Kaiser doc felt I could do just as well with a permanent ileostomy bag or a J- pouch. Needing to hear the pro and cons of both. Seems like I could be more active outdoors with the ileostomy bag. Any advice? Thinking of the surgery next month.  Thanks.          Rich G.

Either surgery will generally solve your basic problem. They vary in ways that only you can judge the importance of (a key one is body image). Suggesting that a permanent ileostomy is better in terms of outdoor activity is incorrect, though. *Some* activities are much easier with a J-pouch, IMO (e.g. I took up scuba diving and martial arts after J-pouch surgery).

Both options are good options, and it all depends on what inconveniences you are willing to deal with. Neither one is perfect. 

 

With the j-pouch there can be many months before things settle down to where you feel you can anticipate your toilet needs. You can get pouchitis, but it usually responds quickly to a course of antibiotics. After the first few weeks or months most people do not feel urgency, and can delay a bowel movement for hours. Typically, I empty my pouch about as often as I would urinate.

 

With an ileostomy you avoid the risk of anal incontinence, particulary nocturnal, which is more common (but usually temporary). But, there can be a challege of finding the right appliance system that does not leak, having to shave the wafer area, allergies to the adhesive, etc. Plus, you need to bring those supplies when traveling. 

 

Bottom line, they both work. To help you decide, you could opt for a 3-step procedure, where the first step is a subtotal colectomy and end ileostomy. Then you'd know if the ileostomy was good for you. Then the rectum could be removed and you are done. Or, if you wanted to go for the j-pouch, it would be an option. However, if your dysplasia is low, in the rectum, they may not want to wait to remove it. Still, something to discuss.

 

Jan

Who did you see for a second opinion?

 

CeeeeCeeee;   Dr. Elvira Krause in San Clemente , Ca. She was rec. by a nursing faculty friend of mine. She answered what I asked with intelligence and compassion. Best I could hope for. A colectomy is looking more realistic now.    Thanks, Rich

Hi Jan;   Your knowledge is helpful to me. Your last paragraph especially. Like test driving an old car for 2 months, then deciding to buy or go with the J- pouch model? Rich

If the jpouch is an option and you have good surgeon options then absolutely do it in my opinion. I did but then again i had no choice and am much younger. I can say that i don't even think about having no colon because you still empty bowels "normally" so besides the few months with the bag its not that bad. Changing my bag every few days upset me more than having and adjusting to a jpouch.  Bags annoying as hell. Aside from a few scars i feel like it never happened.  I can't say for surr youi have same outcome as you are older than me but im just saying while it is a major surgery once ur adjusted it has potential to feel like u have a colon.

Yes, the only caveat is whether it is advised in your situation.

 

A 3-step is usually used for someone with severe UC inflammation, not for someone who is unsure of which way to go. If you are otherwise healthy, a 2-step is typical, or even a 1-step if you meet all criteria. The idea is that less surgery exposes you to less surgical risk. But, if your dysplasia is located low in the rectum or near the area of resection, they usually want to get it at first pass, with the idea being that if there is any previously undetected carcinoma, you don't want to disrupt it and possibly expose yourself to metastatic "seeding" in your body. This is why I suggested this only as something to discuss, but not something that would necessarily be appropriate for you. Honestly, I just don't know.

 

You could have a 2-step procedure, with a colectomy with j-pouch construction and diverting ileostomy first. But, a diverting ileostomy is really not comparable to an end ileostomy in regard to ease of care and use. It really is a nusuiance and a bother. Plus, if you have the j-pouch made, you may as well use it.

 

Jan

Hi Rich
I am 43 and had my two step procedures in oct last year and feb this year.  I must say I did hate the bag at first and struggled with the smell and changing it.  Before take down I was better and not bothered by it much but wow I don't miss the irritation to my skin - I am almost 3 months post take down and my skin still has a ghost like red mark where the wafer sat ! Having said that I am a happy j poucher and work all day without much bother.  I would go no more than 4 times a day and once overnight and like others have said I can hold it for hours as the urgency isn't there . Wishing you the best of luck .. After UC for 15 years I should've done this sooner

I had the same experience with the bag as Lisa. Continuous leaks, and horrendous skin irritation issues culminating in a yeast infection that was only cured by takedown. I am a suicide watch candidate if I ever have to have a permanent ileostomy ......

Yeah as everyone says honestly ,changing the bag is the worst part.  My surgeries were emergencies and i was very ill so they did 3 step. Your surgeon will ultimately decide whats best but if the 3 step is possible even if not really needed id ask for it so you have a better chance to heal.

Dear Tentacle; CT; Lisa; Jan;  You all remind me of my students, who give more than I and so willingly.. Your comments add to my ultimate decision with your wisdom. My wife appreciates it too as she has fears about being my Flo Nightengale. I however know her loving ways and how they will transfer to my benefit. This has to be hard on the caregivers!      With loving appreciation, Rich

You're very welcome.

Should you have the surgeries and have a bag either temporary or permanent let me know i can give you some advice on best bags and companies depending on your build etc. Trust me changing the bag and ultimately finding the best products and time to change really is the hardest part in my experience and many others..more so than even the recovery. Take care.

Partly because of my work schedule, I had my colectomy in the summer and kept my temporary ileostomy for a full year even though I could have had my takedown three months or so after my colectomy.  I had the very best experience with my temporary ileostomy!  Once I learned which ileostomy products worked best for me (trial and error) I could keep my "set-up" on for over a week before changing it.  All of my UC symptoms were gone and I could eat/drink/do anything!  I was very reluctant to give it (the ileostomy) up for the unknown (a functioning J-pouch) but my son convinced me to "try it" and if I didn't like it.....go for a permanent ileostomy.  That was in 2002!  My takedown experience was smooth and I credit it to my waiting a year before getting reconnected!  Meanwhile, if I ever had to go back to having an ileostomy I would be just fine with it!  So far, no reason to need to do so.  My son said I'd always wonder if the J-pouch would have been a positive experience for me if I hadn't tried it.  I'm glad I listened to him.  Having a J-pouch is fairly close to "the original issue" with a few differences.  I call it my "new normal".  For me, the differences are no problem.  I forget my internal plumbing is different from most others' out there.  I even think there are advantages to having a J-pouch over having a normal "original issue"!  Oh, it took me three years before I could come to grips with having my colon removed surgically.  I kept hoping for some medical intervention which would cure me.  Nothing worked and even though I didn't have dysplasia or cancer, I knew the longer I waited to having a colectomy, the greater the chances of my having dysplasia or cancer would be.  People told me it is best to have this surgery when you a feeling relatively well instead of when you are feeling very sick from the side effects of the disease, medication, etc.  In my case, they were right!  Best wishes!