considering getting a J-Pouch

Hallo,

in my opinion the only right answer to your questions (and whate gave me hope, when I had all your doubts) is: "95% of people are satisfied with their pouch and rate 9 or 10 in a scale 1-10 their quality of life" (it's not an opinion but a study by qualified researchers); I'm a j-poucher since 2013 and my life is drastically changed, I love my j-pouch and even if something occasionally bores me, my life changed drammatically and even with pouchitis I prefer than Ulcerative Colitis.

Trust me, the "single" answers we can give you to your question are quite useless, everyone is different and you can't predict your outcome above all because there are tons of people who simply undergo surgery and even don't know neither the "j-pouch" name neither the "ipaa" procedure, and nor this boards.

Bottom line: if you are confident with your UC, you can keep your colon. But if there's something you can't put up anymore, I advise you to try the j-pouch route with optimism!

Did I understand,  your entire colon was removed and your small intestine was simply hooked up to your anus?   I think it's great that you've done so well!  I guess the upside would be to give you a bit of a reservoir to cut down on your bathroom trips with the "j-pouch."    As far as it being an open versus a laporoscopic (sp?) surgery, that just depends on your surgeon.  I have had both, and Dr. Remzi at Cleveland Clinic did an open surgery.  I just have a gut feeling (sorry!) that an open would allow for better testing/configuration, etc., but that's my opinion!  And the standard is a two-stage; the first to form your new pouch, give it time to heal while you had a temporary "loop" ileostomy, and then take-down a while later after all is ready down below.   

you understood correctly - in 1980, medical science wasn't near as advanced as it is today.  Going into surgery back then, I wasn't sure the outcome was going to be - either a permanent bag or the direct piping.  I don't know if a 6 hour surgery is normal, but that's how long mine took.  

 

I'm very grateful for what my doctor was able to do for me, but as I mentioned, if my mobility is restricted in the future, I would be a burden to others with my current setup.  

 

I'm excited about the prospects of the enhanced life style change with the j-pouch procedure, but I don't take such a significant procedure lightly, and I want to understand as much as possible before I take action.  

 

Thanks to all for any insight on what I can expect - both good and bad.

 

Hi Jim1980

Id be very interested in chatting with you more about your condition, as I to had my entire colon removed in 1981 over 34yrs ago. Would love to hear more about what types of meds you take and just everything. If your interested my email is ytcrockpot@yahoo.com

Yvonne

It sounds like you have a direct iloeoanal anastamosis. J-pouches generally work much, much better than those. Heck, it sounds like you've been having the equivalent of pouchitis symptoms for a long time. For most J-pouchers pouchitis is an occasional, easily treated nuisance. If all goes as it usually does surgically, the only negative will be your regret for having waited so long. Life has few guarantees, of course.

 

Why not talk to a recommended colorectal surgeon and get at least some of your answers with higher certainty?

Thanks Scott.  

 

After chatting with a surgeon at a recent CCFA conference, I plan to follow up with him.  I'm hoping to gain as much knowledge as possible before hand - due diligence.  For example, you mentioned pouchitis, what are the symptoms and the causes for it?  

 

I understand that this site highlights the problems folks have versus the successes disproportionately, but it's still scary thinking about going back under the knife voluntarily.  

 

Thanks again.  

Pouchitis can act all kinds of ways, but it seems like urgency may be the most common symptom. Some develop leakage, particularly at night. Most J-pouchers don't have appreciable urgency otherwise. 10-14 days of Cipro or Flagyl tends to clear it right up. A strong probiotic tends to reduce the rate of pouchitis.

 

A fraction can have more persistant pouchitis. For example, about seven years after my surgery I developed antibiotic-dependent pouchitis, and I have to stay on antibiotics all the time. Even so, since I tolerate them well I can do basically anything I like: I scuba dive, teach martial arts, work full-time, and don't pay a lot of attention to where the bathrooms are.

Jim, would you specify if you still have the rectum?

 

I never heard about ileoanal surgery WITHOUT j-pouch, while I always heard about IRA that is the previous treatment before IPAA (ie j-pouch); IRA was a good treatment before IPAA was invented, and people had good quality of life with it. The rectum was preserved (differently to IPAA) and treated with suppositories, topical steroids, and in general local therapies. My surgeon still makes IRA for people with indeterminate colitis and crohn's pancolitis.

 

If you have done IRA I am quite sure you should benefit from a IPAA.

If you (as someone supposed) made ileoanal anastomosis without j-pouch, I don't know if now the surgeon can make a j-pouch. I doubt it.

LKH,

 

I believe my rectum was removed - or as I recall my doctor described it in 1980, it was hollowed out - it's been a long time, and I was young at the time, so I'm not sure.  

 

Since my procedure was done before the j-pouch was invented, I think the options available to me were limited.  At the time, a colostomy was the normal outcome.  

 

While my quality of life is different than what it would have been w/o UC, my current state is okay - I'm able to be active.  Two things have me now looking into available treatments:  1) I worry about growing old and the consequences of being less mobile in my current condition, and 2) I'm excited about enhancing condition in the near term (next 20 years).  

 

Thank you for your input.  I've had my head in the sand about my condition for the last 35 years, so all of the options and possible consequences are new to me.  

It sounds like you had the same procedure that I had in 1981: a direct hookup without the surgical creation of a pouch.  The thought of my surgeon at the time was that the section upstream from the anus would expand and create an adequately sized pouch.  That did not happen, so two years later he created an S pouch in one step (no temporary ileo).   There was no internal leakage or other pouch complications. That surgery reduced frequency to about 12 per day, which I lived with for 30 years.

 

You may wish to have the capacity of whatever pouch you have be measured and get an opinion from your surgeon about the expected improvement a j pouch might provide.  You should also ask your surgeon (1) if he believes he can bring enough small intestine down to create the pouch and (2) what he would do if he found out during the surgery that he could not create the pouch.  Keep in mind that everyone’s results can differ and there is a chance that this surgery may not reduce your frequency as much as you want.  Having a strong anal sphincter is a plus.

You already have a "primitive" ileal pouch so to speak. The ileum near your anus must have stretched out and become some kind of a reservoir. A jpouch would be a bigger, better reservoir.

 

That said, that would be the only improvement. There are no guarantees about stool frequency/urgency/continence for this procedure.

 

It may sound frightening, but you should consider an ileostomy bag. You haven't had one previously I understand, so it probably sounds frightening.

 

For me, it was a stable partner in assuring me a good quality of life without the GI symptoms of urgency, pain, or anal leakage. No butt problems period. It is much easier to surgically construct and does not have any risk for pouchitis or cuffitis. That said, it obviously has some downsides too. It is at least an equal option to the jpouch, and I would strongly encourage you to talk in person with someone who lives with an ileostomy and see if it is a possibility.

My husband had his entire colon removed after not being able to go into remission with steroids. The steroids were making him sicker than the colitis.  Anyway, that was close to 21 years ago.  His J-pouch has treated him pretty well.  

I am amazed that you were hooked up directly.  Fascinating!!

Just a suggestion.......in choosing a surgeon, ask how many J-pouch surgeries they have done successfully.  The more the better.  I'd certainly interview at least two surgeons.  Best wishes!