HealingWell
Search Close Search
☰

SUEBEAR? GOT A MINUTE? j-pouch vs. illeostomy

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/10/2011 1:36 AM (GMT 0)
Hey,
I know you've been asked this over a million times...I just got back from the Mayo Clinic in Jacksonville...I'm definitely going to have my surgery there..anyway, the Dr. there (just like the surgeon in Orlando) tells me I'm a good candidate for a j-pouch. Well, I don't think I want a J-pouch after reading all the stuff on j-pouch.org, plus what I've read about them here and on talking with other Dr.'s......I'd much rather get an illeostomy and have everything out and over with...no internal connections or sutures...So, my questions to you are as follows:
1) how long did it take for your j-pouch to be "normal" (that is, when did you finally start going to the bathroom only 4-6 times a day)?
2) Have you had pouchitis? what happened?
3) I"m not looking to climb Mt. Himylaya, or run a tri-athalon.....just work/home/some ballroom dancing/work in the yard/minor exercise/etc. would having a j-pouch really make any of that easier?
4) if you compared your time with the illeostomy (temp) vs. having your j-pouch (when finally) working, what would be the biggest difference?

Thanks,
j!
Posted 2/10/2011 2:55 AM (GMT 0)
Hey there...hubby had his surgery there - Dr Metzger was the head surgeon along with several assisting. He tried very hard to try to do the pouch surgery but it was not meant to be...hubby had a lot of issues and different things explained up front that could possibly interfere with the success of same. The surgery took 7 1/2 hrs due to various complications. For that we are VERY appreciative we had him for the surgeon. Hubby is not upset or bummed out about it and accepted it. He just wanted to try and go for it if it was viable. We did a lot of research beforehand to know what the ostomy would be all about so we were totally prepared for what we thought would be 3 months or so.

His anatomy and small intestine is such that even thinking about the BCIR surgery as an alternative is something we have decided not to even think about pursuing.

At his age, surviving such a complicated surgery, adjusting very quickly to the appliance and changing process he doesn't want to think about any more surgeries.

If he were younger he would probably feel differently about this overall. We have been together for 42 years and have a strong secure marriage so it's not that important.

I don't know how young you are, If you can allow for the time that is required overall for the recuperation and healing process for the 2 surgeries you might want to try to go for it so you won't have any doubts or regrets later.

I assume you have also done a lot of reading and research too. Good Luck with your decision. I know SueBear will be a great resource for you.

We had a 3+ year association with the Mayo Clinic in Jacksonville and have nothing but the highest praise for them. If you are not from the area and have any questions I might be able to help. It is about a 3 hr drive for us.
Posted 2/10/2011 3:07 AM (GMT 0)
I have to tell you that the first time I looked at jpouch.org was last week. It really freaked me out. I am having my reversal in April. I think
the people who go there are the ones having problems...I wonder how many of those didn't have very experienced surgeons. 95% of the people who have the surgery are happy they did it, so the majority of people must be out living their lives. If you are a good candidate and you have a very skilled surgeon I think you should try it. You can always go back or wait awhile until you have it reversed. I'm not a big fan of my ostomy and can't wait for reversal. I know if something happens, I would be able to adjust and there are many here who are very happy with their ostomy...I just want to try it.
Posted 2/10/2011 3:27 AM (GMT 0)
Just like HealingWell's UC board, most people that visit j.pouch.org are having problems and looking for answers. The board does not represent all the healthy happy jpouchers out there. My surgeon does over 2,000 jpouch surgeries a year and I have never seen one of his patients on that board complaining. A top surgeon is everything.

But, you need to decide what surgery is best for you. I sat down with pen and paper and wrote up a list of pros and cons for each surgery (jpouch, kpouch, ostomy). I compared my lifestyle with it and picked the one best suited for how I lived. There is no perfect surgery, each surgery has it's pros and cons. It's a matter of what you can live with.

I had my surgery 10 years ago. I can't remember the specifics of frequency but I did return to work 3 weeks after my reversal. I went camping/hiking in the Sierras 6 weeks after surgery, and I traveled through Europe at 3 months and did a half marathon at six months post surgery. I was 42 when I had surgery and had been really sick for 2 years prior to that.

I have had pouchitis once, in year 7. It was easily treated with a 10 day course of Cipro.

It's very hard to compare a temp ostomy to a jpouch. Temp ostomies are hard to manage. I had horrible skin problems with the temp ostomy which is common, not so much of a problem with a permanent ostomy. I am grateful that the ostomy gave me my health back very quickly but love my jpouch for the freedom and it's cheaper.

It really sounds like you've made your mind up. If you are okay with an ostomy there is nothing wrong with choosing one. No matter the surgery choice everyone who has had surgery is WAY happier than they were living with UC!!

Sue
Posted 2/10/2011 3:47 AM (GMT 0)
Suebear, what difference is there between a temporary ileostomy and a permanent one that makes skin problems less common? Just wondering.
Posted 2/10/2011 10:54 AM (GMT 0)
enigmawrap, It is hard to give much ideas about recovery from j pouch, because it is not perfect surgery, and everyones outcome will be different. The sucess rate is fairly good with the j pouch, but that means nothing if you end up being one of the failures, and now face more sickness and surgery because of it. You just have to be mentally prepared to accept that if you decide for a j pouch.

Post Edited (gmark) : 2/10/2011 4:23:56 AM (GMT-7)

Posted 2/10/2011 8:49 PM (GMT 0)
     Enig....I have a permanent ileo and it is NO big deal.  My surgeon would not do a j-pouch on me because 1. my age was 63 at the time (64 now) and 2. Extensive use of prednisone.  He said it was worse than open heart surgery.  As a matter of fact, he insisted I go through a cardio stress test before my operation.  My surgeon is head of colorectal surgery at Univ of Pa Hospital and has been performing operations since 1978.  I came to the conclusion he is not a big fan of j-pouch anyway.  He served his residency at the Cleveland Clinic.  I think he is just fantastic.

     This decision is totally yours.  I agree with suebear, the people who are doing well are out living their lives.  Mostly, the ones with problems are the ones posting.

     I had a few blips after surgery but nothing major.  I feel FANTASTIC!  Before surgery I took 17 - 25 pills daily plus rectal meds.  I only take one pill a day now...25 mgm of Toprol for my blood pressure and really wonder if I need that yeah .  Whatever your decision, I wish you the BEST of luck.  God bless.

Posted 2/10/2011 9:11 PM (GMT 0)
But to clarify, age is not a factor for getting a jpouch but overall health is. My friend Gloria got her jpouch at age 69 and she is now 81 and doing fine. Many other candidates have had the surgery in their 60s and 70s. Don't ever think you are too old for this surgery; it's more about overall health.

Sue
Posted 2/11/2011 3:34 PM (GMT 0)
True - hubby is 64 and although the odds are more in your favor if you are younger - plus females have larger pelvis areas to work in, his surgeon set out to do the j-pouch for him. Of course all the different reasons why it could possibly not turn out that way was told to us in finite detail before the surgery.

As it turned out for many reasons it was not meant to be as hard as he tried to give him what he hoped for he could not. Dr Metzger was also disappointed as he knew we were hoping for a shot at it even with potential additional surgery and other issues that could occur. It was a long 7 1/2 hr surgery - something I hope never to endure again and grateful he survived it with no complications.

In retrospect and dealing with the reality of it all and the day-to-day living with the permanent ileostomy "life is good again". It is 7 weeks ago today and we thank God every day for giving him his life back.

Good luck with whatever decision any of you make. It is not an easy one no matter what. You have to do what you feel is right for you. Simply put insofar as surgery goes....my husband was "sick and tired of being sick and tired" is the way he puts it.
✚ New Topic ✚ Reply