Questioning J pouch surgery

RoRo,
This is a support group so most of us on here have problems with our pouches plus some that have had their pouches a long time and come here to help the people with problems. Around 95% of those having the surgeries are doing fine. I've seen quite a few folks, just out of surgery, that have questions and after they get everything working well we don't hear from them anymore.

I had the surgeries when I was 55, 2 years ago. I had it done in 2 surgeries and the first one was horrible because I kept getting dehydrated. My pouch has been working well and I'm still having some problems. One of them is a c-diff infection that keeps coming back. I initially had c-diff the first time years ago before my surgeries. The other problem is cuffitis. This is really UC. I had the "double stapled" j-pouch procedure vs the "hand sewed". The surgeon left approximately 2 cm of my rectum at the rectal cuff and the j-pouch was stapled to it. That 2 cm of my rectum gets residual UC and it hurts like hell because there's a lot of nerves ect. there as well. The treatment that works for me is a nightly Canasa suppository. It's made of the same thing that is in Asacol and most UC treatments. The reason they leave the rectal tissue there is without it we might be unable to have control over our BMs. The hand sewed procedure is done without those 2 cm or they scrape all of the cells, the mucosa off before attaching the j-pouch. It is a delicate procedure and there is a greater risk of having no control.

We can also get pouchitis that is treated with antibiotics. I also have IPS which is like IBS. There are other problems like strictures, scar tissue getting in the way, partial or total obstruction by food getting clogged in the small intestine, etc.

I wish I'd been told about the two different options before the surgeries. I probably would have picked the double stapled procedure, but it would have been nice.

I've also had an abscess and an incisional hernia surgery.

In other words I'm in the 5% that have problems.

I would have preferred to have the surgery done laproscopically. I wouldn't have had the hernia or abscess plus less scaring and adhesions. I'd had a hysterectomy and already had adhesions so it's unlikely they could have done it lapro.

If I were you I'd ask what kind of surgery they are planning to do; Open or Lapro, double stapled or hand sewn. Also find out where your surgeon trained at and how many procedures s/he's performed.

There is really no way to predict what the outcome is going to be.

If your ileo is in a good location, and you are doing well with it, I'd suggest you wait a while before having any more surgeries. You can have it done at a later date.

The surgeries take a long time to recover from, you've probably already been told that.

I'm glad I went ahead with the j-pouch but I sure wouldn't want to do the last 2 years over again. I have other health problems and they got worse after the surgeries, especially my fibromyalgia.

Take Care and welcome to the group!

As you probably have an idea, there probably is no solid answer for this. Decades ago, they said there was an age cut off of 40, then it became 50, then the age limit sort of just went away. The reason is because age is just a number, and how well you will adjust or be at risk for complications has more to do with your general health and state of mind than your age.

Sure, the older you are, the more likely you are to have issues with healing, sphincter weakness, all that stuff. But, it is on a case by case basis.

The fact that you are waffling on this now that you have your colon out and living a better life, even if it is with an ileostomy you didn't bargain for, probably means you might have other issues you worry about.

Unless your rectum is behaving very nicely, you probably will have to address its removal sooner or later. Cancer probably isn't a huge weight on your mind, since your diagnosis was pretty recent (cancer risk doesn't generally even begin to go up until about 8 years after diagnosis). But, that goes out the window if you had active UC for a long time that went undiagnosed. If you do have to deal with that rectum, that is another surgery, and not a simple one either.

You can talk this over with your surgeon (but I bet he will make it seem like sunshine and rainbows). But, any good surgeon should be able to be realistic about YOUR case. Maybe have a visit with your GI and let him talk about your options.

The main thing is to be sure you are 100% behind whatever decision you make, because YOU are the one who will be living with it. I know there are many people who have the j-pouch well into the 6th and 7th decades of life, some even later (but fewer for sure).

There are no right or wrong choices in general, except how they apply to you.

Good luck!

Jan

While I was 45 when I had my colectomy/j-pouch, I follow several 60+ patients in my cardiology/arrhythmia (EP) practice who had this surgery in their 60s. I see them for heart issues. They seem to be doing quite well. I know one patient had the complete colectomy/j-pouch. One I remember has an iliostomy.

I think it boils down to having a good surgeon and what shape you are in. Having a good support structure and good local follow up also is critical.

I am 57 but I had my pouch since 1994.

TE Marie, I too have an incisional hernia for at least 7 years. Because I have had 14surgeries for other problems, I am relunctant to get this procedure.

After I had a bout with Kidney Cancer in April, 2009, I also was told I have 3 inquinal hernias, one on the left side, the right side and the incisional area which is located in my chest.

After my Cancer surgery, I had the left side taken car of which was the size of a grapefruit in my lower abdominen a in July, (3 months after my Cancer Surgery.

Then in 2010, I had the surgery on my right side. The doctor asked me that I should not wait too long to have the incisional hernia taken care of.

The doctor also said this was caused by all of your surgeries. I told her it did not bother me or was causing me any pain. I then asked her what risks are involved.

The doctor said you run the risk of having another bowel obstruction, especially since I had that twice before. I said and if I have the surgery, that creates more scar tissue. The doctor told me that I run the risk of having another bowel obstruction if I have the surgery or do not have it.

So that is a Catch 22 position I am put in so for now, I have chosen not to have it done.

Rocket

I believe poster Rebe1505 is close to your age and had her J Pouch surgery well past age 60. You may want to PM her. I know some other members have posted about getting pouch surgery after age 60 but Rebe1505 is the only one whose handle comes to mind at the moment.

There are obviously pros and cons and as others have mentioned there are some people who are a young 70 and some who are an old 70 so it is really hard to know but I am sure if you speak to a few doctors/surgeons, and let them examine you, and ask for feedback you will get it.

When I had my J Pouch surgery in 1992 I was 29 years old and at that time my GI told me to do the surgery while I was still young. Since then the thinking has changed, because they can do the surgery laporoscopically which was not a choice then, and for other reasons. At the time I had my surgery my surgeon's main concern was my weight, and he ordered me to lose weight. This is also a variable and probably a fatter and "older" 70 y.o. is not as desirable as someone who is a lean and fit and otherwise healthy 70 y.o. All of this is or should be common sense.

Good luck.

You may just want to put off surgery for awhile and see how you adapt to the ostomy. Alot of us do have issues with their j-pouch on this site and then so many others are out living their lives and rarely have a reason to post, some will ,just to check in. It is a very personal decision for sure. In hind sight I would have stayed with an ostomy. But again, that is only my personal opinion.

TE Marie well said. I wish I was explained that way from my surgeon. He just said I will do fine! Holly M I am with you on the ostomy at this time. Although, it hasn't been quite a year would not want to have to do this walk again and may look like that because of the rectum still being UC.
Oh boy, RoRo really do your homework on this one and it always comes down to YOUR decision! It isn't an easy walk to take. Good luck with your decision!

Roberta

Are you suffering with your cuffitis too Roberta? Sorry, I'm probably in fibro fog as I know we've talked before.

Yes...according to last scope the rectum is still diseased w/UC. They (GI and surgeon) have talked the surgery however, it has not been even a year out from the takedown 4/30/2012. Certainly very hesitant on going for that surgery...way too close! Don't want to go back to the mending part...NG tube, picc line for nutrition, etc. Doing acupuncture trying to mend this disease. Helping a little bit. Will try anything to not go back under the knife for now.

Roberta

Gloria had her jpouch surgery at age 69, and that was many years ago. She's done very well, has no complaints.

Sue

I had my proctocolectomy at age 61 and takedown a year later at 62. I'm now 72 and am very happy with my J-pouch. However, if I ever had to revert to an ileostomy, that would be fine, as well. Best wishes!

Te Marie, you mentioned that you have fibromyalgia, may i ask you what are the symptoms , i am being investigated for same and have been having severe symptoms since my last stoma surgery in february 2012.
regards kenny

There a many symptoms, the first place to start is the 18 trigger points. Please do an internet search and look at those too. It also includes a chronic fatigue feature. It can be mild or worse. There's a continuum of varying degrees. Mine started out not too bad and has gotten worse over the years. You have flares like with IBD. I have been in a horrible flare since my surgeries that I am afraid is never going to get better. The worst thing you can do, if you have it, is not get enough sleep.

There is no test for FM other than the 18 contact points. Search for Fibromyalgia Symptoms. I hope you don't have it

Good luck

thankyou i will research more

Admittedly I have a bias because I opted for an ostomy at age 30 due to chronic pouchitis, but if you are living well with the ostomy you might want to keep it. Not telling you what to do - only you can make this choice as jan said, but think about how you will handle it if you have problems - think all manner - recurring pouchitis? Antibiotic dependent pouchitis? Surgical complications? Wound healing issues? How would you handle all of these practically and emotionally? If you had to restrict any part of your life, are you ok with that? There are lots of folks here who are ok with long term antibiotics and who don't mind restricting or adapting their eating habits and maybe that's you too. I wasn't one of them and I'm much happier with my ileo, eating what I want, taking no drugs and doing what I want and only seeing my GI dr once a year to check in and chat...

Just think through it all. The more prepared you are the better the outcome no matter which way you go.