Choosing the best surgery for me

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hope4uc
New Member


Date Joined Sep 2006
Total Posts : 5
   Posted 5/8/2007 1:02 PM (GMT -6)   

This is my first posting and it may be somewhat wordy, but I will try to be as concise as possible.

 

I am 62 years old and have had chronic UC (mild to moderately active) for at least 17 years.  I have gone through a variety of pharmacological and dietary treatments as well as several clinical studies including the relatively recent one with the adacolumn apheresis.  I have avoided (and will continue to avoid) prednisone but I have used steroidal enemas and continue to use them as my treatment of choice whenever my UC becomes active.  I have had several remissions along the way but the symptoms always return.  I have two first line family members (my late father and my older sister) who have had colorectal cancer.  I have had several polyps (adenomas) removed but thus far there has been no sign of dysplasia.

 

I consider my gastroenterologist to be an excellent doctor and very easy to deal with… I have a good deal of faith in his “gut” feelings.  He has recently suggested that surgery (removal of the bowel) is something I should seriously consider because of the increasing odds of me becoming a cancer patient.  I recently consulted with an established colorectal surgeon who highly recommended that I consider surgery as opposed to continued close monitoring (semi annual colonoscopies).  Both doctors feel the cancer risk is getting too high.

 

After considerable thought on the matter I have more or less resigned myself to having the surgery done within the next 6 months.  My dilemma now is deciding whether to opt for the J Pouch or Ileostomy.  Though the pelvic pouch procedure has become the “gold standard”, it seems the permanent ileostomy is still considered the safest with the least number of risks and long term complications.  Most of the research I have done is related to the restorative (J Pouch) option.  I have many concerns about the complications despite all of the positive things written by patients and doctors alike.   Many of the research papers on the J Pouch surgery indicate poorer results (more complications) in older patients.  Pouchitis, anal strictures, anal fistulas, pelvic sepsis, intestinal obstructions, leakage / soiling, incontinence during the day and night are all matters that can be dealt with but they require ongoing treatment with drugs, hospitalization, and possibly further surgery… all of which I would like very much to avoid… it is for this reason I am currently thinking more and more about a permanent ileostomy.

 

 I am not as well versed in the possible complications resulting from a permanent ileostomy and would appreciate any feedback from people who have had this surgery done.  In particular, I would be interested in hearing from people close to my age (62) that have opted for a permanent ileostomy… what were some of the factors that influenced their decisions?… has anyone out there had the J pouch surgery done and subsequently required a permanent ileostomy.

 

And finally, any recommended reading or websites related to the permanent ileostomy would be greatly appreciated.
 
 
 
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/8/2007 2:23 PM (GMT -6)   
You are wise to consider the surgical options but I don't think your age will have much do to with the outcome. I know of several j-pouchers who have had the surgery in their late 60s and early 70s and are doing very well. You can meet them at www.j-pouch.org There is risk with any of the options including a straight ileostomy. The beauty of the j-pouch is if it doesn't work for you, you can go to a permanent ileostomy. However, once you have a permanent ileostomy you can never go back to a j or k pouch. I did exactly what you are doing, I researched all the options, talked with people who had each and then took my lifestyle and added that in the equation and came out with a j-pouch. Good luck with your research and your eventual decision.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2007 4:17 PM (GMT -6)   
I went through all the info also, and all the pros and cons and talked to people and all that, and I decided on an ileostomy.  Because of the complication with the j-pouch and because of people talking about going to the bathroom all day long after having it, and then finding out you still have to go 6-8 times a day, and that was what I was trying to get away from!  But not everyone has that problem,, I also talked to people who had their j-pouch surgery, and still went alot at first but now only go 2-3 times aday.  So, Ithink you should talk to lots and lots of people, like you are doing now. 
Good luck!

Nancy1
Regular Member


Date Joined Nov 2006
Total Posts : 125
   Posted 5/9/2007 6:38 PM (GMT -6)   
My husband is in somewhat the same situation as you.  He is turning 56 and has had ulcerative colitis for 33 years.  He has had routine visits to his GI in Michigan and everything was ok until last fall when he had a severe flare (second one in 33 years).  He was in the hospital and given steroids and advised to go on Remicade.  He had an allergic reaction to Remicade and we made an appointment at the Cleveland Clinic for a second opinion.  The GI at the Clinic advised my husband that after having UC for 33 years, his chances of getting colon cancer were about 99%.  He advised him to have surgery and we made an appoint with Dr. Stocchi at CC.  Dr. Stocchi said that having J-Pouch surgery was not as successful with someone over 55 but he said he would want my husband to try to have the reversal and then if it didn't work, he would have at least said he made an attempt.  The final decision won't come for six months after his colon is removed and in the meantime he will have an ostomy bag.  My husband is comfortable with knowing that he may or may not have to have a bag for the rest of his life.  He is just grateful that the CC doctors took as much time as they did with us and explained all of the cancer risks etc.  Apparently my husband did have some polyps that were indicated in his GI report that we had sent to CC that were precancerous and we were never told by our GI in Michigan.  He is due to have the surgery on June 11th to remove his colon.  We feel we are lucky to be seeing the best group of doctors. 

hope4uc
New Member


Date Joined Sep 2006
Total Posts : 5
   Posted 5/10/2007 8:30 AM (GMT -6)   

Thanks for the responses...

Sue:  Hope I'm not getting too personal but I would be interested in your approximate age (30s, 40s, 50s, etc) and the most significant criteria that made you opt for the J-pouch... I know you are very active, but I also know some very active people with a permanent ileostomy... in the 6 years since your surgery, have you had ANY of the commonly cited complications related to J-pouch surgery and if so, how were they resolved?... how many stools a day are you averaging at this point and what is the general level of your urgency?  I understand that unsuccessful J-pouch surgery allows for another option (permanent ileostomy) but the real possibility of another surgery at my age (the body does tend to deteriorate with time!) is exactly what I would like to avoid.  I am aware that people in their 60s and 70s undergo J-pouch surgery but all of the literature on the subject indicates a higher rate of complications (not necessarily failure leading to ileostomy) in patients 50+.

cattieos: as above, I hope I'm not getting too personal but I would be interested in your approximate age (30s, 40s, 50s, etc) and the most significant criteria that made you opt for the permanent ileostomy. What if any problems have you had since your surgery and how were these problems resolved?  How often do you need to empty you bag and do you have problems finding appropriate places to do this?

Nancy1:   You are right, your husband and I seem to be in very similar situations.  I am somewhat puzzled as to why Dr. Stocchi wants your husband to try having the reversal instead of going straight to a permanent ileostomy, even after saying that the J-pouch surgery tends not be as successful in patients over 55... was this decision based on your husband's preference (if so, why?) or on the doctor's advice (preference?).   It's good to know you feel you are now in good medical hands... that is so important.  Good luck to both of you with the upcoming surgery.  I look forward to hearing the good news.

 

 

 


hope4uc
New Member


Date Joined Sep 2006
Total Posts : 5
   Posted 5/10/2007 8:41 AM (GMT -6)   

Thanks for the responses...

Sue:  Hope I'm not getting too personal but I would be interested in your approximate age (30s, 40s, 50s, etc) and the most significant criteria that made you opt for the J-pouch... I know you are very active, but I also know some very active people with a permanent ileostomy... in the 6 years since your surgery, have you had ANY of the commonly cited complications related to J-pouch surgery and if so, how were they resolved?... how many stools a day are you averaging at this point and what is the general level of your urgency?  I understand that unsuccessful J-pouch surgery allows for another option (permanent ileostomy) but the real possibility of another surgery at my age (the body does tend to deteriorate with time!) is exactly what I would like to avoid.  I am aware that people in their 60s and 70s undergo J-pouch surgery but all of the literature on the subject indicates a higher rate of complications (not necessarily failure leading to ileostomy) in patients 50+.

cattieos: as above, I hope I'm not getting too personal but I would be interested in your approximate age (30s, 40s, 50s, etc) and the most significant criteria that made you opt for the permanent ileostomy. What if any problems have you had since your surgery and how were these problems resolved?  How often do you need to empty you bag and do you have problems finding appropriate places to do this?

Nancy1:   You are right, your husband and I seem to be in very similar situations.  I am somewhat puzzled as to why Dr. Stocchi wants your husband to try having the reversal instead of going straight to a permanent ileostomy, even after saying that the J-pouch surgery tends not be as successful in patients over 55... was this decision based on your husband's preference (if so, why?) or on the doctor's advice (preference?).   It's nice to know you feel you are now in good medical hands... that is so important.  Good luck to both of you with the upcoming surgery.  I look forward to hearing the good news.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/10/2007 9:48 AM (GMT -6)   
I had the surgery when I was 42, I am now 48. When I was researching options I looked at the j-pouch, the BCIR (a modified K-pouch) and a permenant ileo. Prior to research I was leaning heavily towards the BCIR because of the horror stories I had heard about the j-pouch. I ruled out the BCIR when I realized that I would have to carry intubation items with me. I am a woman who doesn't even like to carry a purse so the thought of having to carry something and clean these items in public restrooms was a hinderance for me. I am very active, my passions are 100-200 mile hikes and backpacking. With a permanent ileo I was concerned about having potable water on my journeys in the event of a change. Cost of supplies was also a concern as well as image. I hate to admit that but even though I am single and do not plan on marrying, I was style very concerned with how I would feel about myself with a permanent ileo. I became convinced to try a j-pouch when I met a nurse in the hospital while I was a patient on mandatory 9-day bed rest for UC. She had had UC and had j-pouch surgery some years ago. Since her surgery she had a baby, ran marathons, and worked demanding 10-12 hours a day as a nurse. She became my mentor and her story gave me hope.

As for complications, other than a couple of minor partial obstructions in the first year, I have had none. There is NO urgency with a j-pouch. I think the biggest misinformation is frequency. Yes, frequency is higher but many of those times occur during urination. I would venture to guess that no one knows how often they urinate in a day, the same is true with a j-pouch, I have no idea what my frequency is. I do know that emptying a pouch is not the same as emptying a colon. To empty a pouch is a fast as to urinate. I do not spend hours in the bathroom. If that were the case I certainly wouldn't be hiking 100-200 miles in the hills using the great outdoors as my restroom. With a j-pouch I do not need to know where bathrooms are. I am not sick, there are no accidents, and I can hold it if I need to. Other than not being sick, the j-pouch has allowed me to have a diet that is very high in fresh fruits and vegetables, something I missed when I had UC.

If you are considering a j-pouch I would recommend a consultation with a very experienced colorectal surgeon. At that time you can ask very specific questions about age and outcome. My GI was opposed to j-pouch surgery and tried to convince me to get a permanent ileo. What I later learned was that his information on the procedure was outdated and advances to the surgical technique had been made but he never followed up with the literature. He also had never, in his 25 years of practicing, had a UC patient lose a colon so he was not an expert on surgery. I thought highly of my GI but I really didn't think he was qualified to make a surgical choice for me and I went against his wishes. Since surgery I have not had to have a GI so I guess this was a good decision for me!

Again, I have met lots of people who have had the surgery in the 50s, 60s, and early 70s. Not one of them has been disappointed. Yes, life is different without a colon, I think everyone would agree, but each surgical option has it's advantages and disadvantages. Only you will know what the right choice for you is.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


hope4uc
New Member


Date Joined Sep 2006
Total Posts : 5
   Posted 5/12/2007 12:19 PM (GMT -6)   

Sue,

Thanks for your very honest, clear and helpful reply... I hope my situation after surgery (whatever option I choose) works out nearly as well as yours.  The first piece of your advice I will follow is to try posting on www.j-pouch.org... I have been reading some of the postings there (including yours) and many of the individuals (members?) seem to be going through or have gone through the decision making process I'm currently faced with.

The description of your own experiences sounds so positive that I forced myself to take the "devil's advocate" position for the following comments:

You are significantly younger than I am and certainly in much better shape (based on your very active lifestyle) than I can ever hope to be... I don't doubt that this has been a significant factor in your lack of complications... all of the medical papers I've read on the j-pouch indicate most people have more difficulty than you did and this is increasingly true for older patients.  Also, some of the long term studies indicate a number of these complications increase over time.  My biggest concern at this point in my life is to not be dealing with ongoing j-pouch problems and possible surgery as I move towards my 70s and beyond.

Regardless of which procedure I end up having, my quality of life (in terms of frequency, diet, lifestyle) will almost certainly deteriorate because my UC has, for the most part, been quite manageable over the years.  I have never been hospitalized or homebound, I have been been able to travel extensively with my wife and I have always eaten whatever foods I most enjoyed... during flares (which typically meant more difficult mornings, frequency of 3 - 6 daily with varying degrees of blood and mucous) I would medicate until I stabilized.

I am much less concerned about the vanity or cost aspects of a permanent ileo than I am about the overall management of my condition... if I could be sure that a j-pouch would be as good for me as it is for you, it would be a no-brainer... however, much of the literature still refers to the permanent ileo as being the "safest with the least number of risks and long-term complications" ... (see http://www.mtsinai.on.ca/IBD/patient/UlcerativeColitus/pelvic-pouch.htm and keep in mind that my long term is likely to be quite a bit shorter than your long term!) 

Despite what I have written above, you have given me excellent food for thought and a desire to hear more from others.  I have already seen a very experienced colorectal surgeon (at the prompting of my GI)... he strongly recommended that I have the surgery sooner than later and when I asked him what he would do iin my situation, he said he would opt for reconstructive (j-pouch) surgery...  adding that a permanent ileo was a perfectly acceptable and possibly more desirable option given my age.

Thanks again for your feedback... I look forward to seeing more of it in these forums.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/12/2007 4:49 PM (GMT -6)   
Sorry for taking so long to reply!
I am 29, and just had the surgery four weeks ago. My reason for wanting to have the bag rather than the j-pouch was that I wanted to only have one surgery, instead of the two the j-pouch requires. I have read the problems that can come with the j-pouch and the fact that you still have to go 4-8 times a day, and that some people still aren't able to eat the foods that they want to. The main reasons I wanted the surgery were so I would NOT have to go the bathroom all the time, and so that I could eat alot of the foods I hadn't been able to before, I still have to avoid nuts and popcorn and seeds, and the DR warned me several times not to eat a whole head of cabbage at one time (who would do that anyway?) Also, my surgeon flat out told me, that if he were telling a member of his family he would tell them to get a bag, and not go with the other surgies.
I haven't had any real problems, I still have some pain, I lost a little blood (some of the meds I take are like blood thinners) and had to have blood. Once I got home, I was doing really well, not taking any pain pills, having a little trouble sleeping, you just can't get comfy because of the pain of the surgery, the bag doesn't get in the way of how I sleep. Sunday night though, I had some really bad gas (FYI, don't eat pizza that early after the surgery!) and then Thursday I had some trouble breathing, which turned into me going to the dr the next day, where the nurse took my blood pressure and it read 84/54. So that meant going to the ER, however when I got there, my blood pressure was 122/78. SO obviously there was a mistake at the dr office! And they couldn't find any reason for my breathing trouble. Really other than those weird occurances, and being a litte tired, no problems.
I empty the bag when I go pee, which is often, lol. But I think I could get by with only emptying it three times a day, and then once at night. However at first, in the hosptial it did have to be emptied alot more than that. I haven't really gone anywhere, but I did empty it in the dr office and that was no big deal. Anyway, I have had a few problems with leaks, mainly because I am stupid! But all in all, even with surgery pain and tiredness, I feel tons better than I have in 8 years!
I will tell anything to anybody so don't worry about asking questions that are too personal!

aashkab
Regular Member


Date Joined Feb 2006
Total Posts : 124
   Posted 5/13/2007 12:38 AM (GMT -6)   
i'm 20 and got the first step of two done 3 weeks ago. believe it or not, i too was slightly hesitant about the jpouch. i thought why bother at all with it when i can have a perfectly normal active life with a permanent ileostomy. well the truth is, you REALLY don't know what it feels like till you wear it 24/7 everyday. don't get me wrong, even with this temporary ileostomy, my life is 9999999x better than UC. i've gone out a bunch of times with my buddies, friends, etc...eaten out...eat a bunch of different foods. however, i really do desire to have my body back to normal after my second surgery. i empty my bag on my knees so i haven't done it much in public. and it can get annoying having your bag fill up while your just sitting there in public, and have it bulge out of your shirt or pants.

i am hoping for really nice jpouch function after the second surgery, like sue. i think she said it best in that you don't really notice the times you go to the bathroom because there is no urgency and its not an exorbitant amount. I know of peopl ethat have only 2 BM's a day and i know people that have 10 Bm's a day and both are happy. Also, you can eat MORE FOODS with a jpouch than with an ileostomy. With a jpouch, you have an anus which is able to expand (granted it may take some time to get adjusted to foods). However, with an ileostomy your stoma doesn't expand.

about your age, i can not advise since you have far greater wisdom than me. i think you are doing a good job in talking to people and doctors. i hope everything works out for you.

the main thing i'd like to relay that i've learned in the last three weeks is: life isn't perfect, even after surgery, but it is certainly beautiful once again after you get it back
------------------------------------------------------------------------------------------------------------------------------------------
Ileal-Pouch Anal Anastomosis
1st Step 04/19/2007


hope4uc
New Member


Date Joined Sep 2006
Total Posts : 5
   Posted 5/14/2007 9:39 AM (GMT -6)   

cattieos and aashkab,

Thanks for your feedback.  It is obvious there is no "right" or "wrong" decision in these matters... both of you seem to have thought the issue through and come to very different yet  satisfactory conclusions... I hope both of you continue to have a positive attitiude and good luck without your UC.

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