I recently posted this message on the Healingwell.com ostomies forum and was advised to try the j-pouch.org forum for more feedback, so here it is. I apologize in advance for the wordiness, but I wanted to provide as much info as I could on the first post.

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 using 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... my sister has had a colostomy for the last 8 years. 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 j-pouch procedure has become the “gold standard”, the permanent ileostomy is still (according to the literature I have seen) 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 for either the j-pouch or permanent ileostomy… what were some of the factors that influenced your decisions?… has anyone out there had the j-pouch surgery done and subsequently required a permanent ileostomy?

Any advice/info would be appreciated.

I had the first of two steps of the J-pouch procedure when I was 61 and the second step a year later. Once I had the temporary ileostomy and figured out what products/methods worked best for me I was VERY reluctant to give up the ileostomy! I never felt so good and could eat and drink everything. My son convinced me to go ahead with the "takedown". He said if I didn't try the J-pouch I'd always wonder. Besides, if I didn't like it, I could have a permanent ostomy as an option. Well, I took his advice. That was five years ago this coming July. I love my J-pouch and would never think of going back to an ileostomy unless I had to. Age is not necessarily a deterrent to successful outcomes of this surgery. My surgeon has done plenty of J-pouches for those of us more senior than others. One man was 70 years old! He still plays golf and has no problems with his pouch! Mine is my best friend! Best wishes!

Hi Hope4UC,

Welcome to this wonderful forum. I am a little bit in your boat, insofar as I function fairly well with my UC most of the time and expect that (apart from the crucial issue of preventing cancer which is necessary for life) my quality of life couldn't be worse after surgery (whichever method I choose)... except insofar as I have low grade dysplasia and have used prednisone as needed in flares (and in mostly very low doses even as maintenance).

Around 20 years younger but thinking along the same lines as to the pros and cons of j vs permanent ileo, given that complications seem to be so common on this forum.

On balance, aftre hanging out on this site for awhile, I am inclined to risk them (when the time comes- I am thinking 50/50 in terms of the next 6 mos vs the next year for surgery depending on what the next scope shows) and cross my fingers that I get a reasonably good outcome.

I am not the least bit concerned about the aesthetics of a permnanent ileostomy but I can see how a "good" functioning pouch would allow me to keep up my very active athletic and professional life compared to the extra workload involved with bag hygiene etc. and just having that weight fdangling there all the time ... but as was said, ultimately it is a bit of crxp shoot I guess.

Christopher

I'm about the same age as Christopher,so not one of the oldest pouchers, but my advice is that if you've decided to go for surgery, give the pouch a chance. I love mine, too

Hi

I was in two minds about answering your post mainly because l am younger than you so cant comment about age/surgery question.

But l would like to mention that most of the people posting here are having issues so are looking for advice or place to let off steam.

I have had my j-pouch for 14years and never had any issues at all and l eat whatever l like. The only issue l had was the one time l ate a couple of raw carrots which caused a minor obstruction but it was cleared in a couple of hours with no hospitalisation.

As others have stated you should give the pouch a go and if something unforseeable happens then go back to the ileostomy. The majority of people are very happy with the pouch and feel it is the best thing that ever happened.
Because of my good outcome l always wonder why people put up with UC for so long.

Sorry to ramble, just remember do what you feel comfortable with and see a surgeon who has done lots of this type of surgury.

In your position, you have another option - although I don't know if I'd tell your surgeon this is what you are considering Why not go ahead and plan to have the j-pouch surgery? If you do it in 2 steps, you will need a temporary ostomy after step 1 - and you should have enough time prior to step 2 to adjust to the ostomy. During that time you can get a feel for what life would be like with the ostomy if you kept it for life. If you liked things enough with the ostomy, you could always back out of step 2 and keep it.

That being said, of course, you can also go forward with step 2 and complete the j-pouch surgery. If things don't work well for you, then you can go back to the ostomy. However, from what other people have said, this option is harder to take than just keeping the ostomy after step 1 (doctors will be reluctant to take out the j-pouch for the ostomy).

Some things to keep in mind: if you have an ostomy between steps, it will be a loop ostomy instead of an end ostomy. I had both - and like most people will tell you, the loop ostomy is more difficult to maintain than the end ostomy (like 2-3x more difficult, in my estimation).

So, move forward with things and see where it takes you. You have several points along the way to change course if you want to. It's your body.

quote:

It's your body

Hmmm... what exactly did I mean by that anyway?

i have had my j-pouch for 2 years and i absolutely hated the temporary ostomy bag between surgeries.i had more leaks than the white house and counted the days until the takedown surgery so i could be free of the stupid thing.now i can sleep on my stomach and bend and stretch without worrying about leaking disasters in public or in the middle of the night,i don't have to go through the annoying "changing of the bag"every week,and i don't have to carry a changing kit everywhere i go,whats not to love?

I i,m younger than you but know a few that are your age and myself and them perfer the j pouch Some as that get older have the perm one because they have little or no control if ya get the surgery at a older age so its better to get j pouch when your younger.

But remember you will know when its time to get j-pouch I never knew what that meant when people told me that until I had no remissions at all and was in so much pain I HAD NO CHOICE so I reached that point for surgery.

So my advice to you can you deal with uc and what your going through because having a jpouch can be good for some and bad for some so my advice if your uc is that bad then go for it. But for me jpouch was the best thing I ever did for me having some issues but i,m only 11 weeks out after take down so still adjusting to my new plumbing.

CeeeCeee, Badplumbing, Soph, RosaD, ElmerFudd, Bowtie455 and jeffm,

Thanks to all of you for your feedback. It's becoming increasingly clear that there are no "right" or "wrong" decisions re choosing the surgical procedure... it seems the most important thing is to think it through and then decide based on one's own lifestyle and priorities... from reading a number of the threads on this website there is no shortage of both advocates and detractors for both the j-pouch and permanent ileostomy.

CeeCee, if you don't mind a followup I am particularly interested in your situation... obviously you opted for the possibility of the j-pouch before your first surgery and it has worked out very well for you... what would you say are the most significant differences in your life now (with the j-pouch) and before (with the loop ostomy ileo)? My inclination at this early stage in the decision making process is to go with the permanent ileo because I want to avoid the possibility of further bowel related surgery at this point in my life... however, before I decide I want to try and better understand the downside of permanent ileo versus j-pouch. Also, what if any complications have you had since getting your "takedown" and how were these problems resolved? Thanks again for your first reply.

I am 50 and had UC for 18 years. I went through the exact same process you're going through now. I initially was determined to go for the ileo for the exact reasons you stated. In the end, and to a large degree based on the postings here, I opted to go for the j pouch. I had step one in Feb and am having my takedown on Wed. I am having a lot of trepidation about it, as I am having absolutely no problem with the bag. I am healthy for the first time in 5 years (no small thing) and I am not limited at all. There isno interference with work, I am back to exercising vigorously, including swimming, and my wife could care less about the bag.

Having said that I am going through with takedown. Most people love it. If I turn out to be in the majority then having 4-5 BM's with no significant interference with sleeping, why not? As to the complications that you stated, if they develop and become intolerable I'll go to the permanent ileo. I have a loop now and the consensus on this forum is that a permanent ileo is preferable to the loop (ie even easier bag maintenance, less leaking and there is more small bowel to absorb nutrients). I hope this was helpful, please feel free to PM me if you have any specific questions.

Ken

My case is different from anybody. I had rectal cancer and had to remove rectum, did a colonic j-pouch and temp ellio for 1st surgery in July 06. The 2nd surgery happened in Jan 17 '07 was to close my stoma (temp ellio)and remove VAP (where chemo was infused). I did not have any complications or infections. I'm a little over 16weeks post takedown and evrything is going great, no more butt sores,BM's 2 to 3/day. I hated the bag!!!