J pouch versus permanent ileostomy

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julieann
Posts: 6
Joined: 2007-02-17 21:25:14

J pouch versus permanent ileostomy

Post by julieann »

I'm trying to decide between a J pouch or a permanent ileostomy. I was diagnosted with ulcerative colitis in 1998 and have tried a variety of meds since then. My doctors and I finally decided that surgery was necessary in 2005 to improve my quality of life. I was having frequent (10 to 20 a day) bowel movements that were very runny with a lot of cramping.

In October 2005, my U of Michigan surgeon remove my colon, constructed my J pouch, and gave me a loop ileostomy. I was suppose to have the surgery to connect the J pouch and take down the loop ileostomy last January or February (2006). Since then I had a variety of problems and the surgery was delayed and delayed. I had some medicine complications/interactions and also found out that after years of steroid use, my endocrine glands were no longer working. I am currently on a low dose of steriods - possibly for life.

I am 'healthy' again and we are now looking at the second surgery in about four weeks. The surgeon is giving me the option of connecting the J pouch or just going with a permanent ileostomy. I'm 50/50 whether the J pouch will be successful. Since October 2005 I have also had a couple of cases of pouchitis. My ostomy output also continues to be high 1800 ml to 2200 ml in 24 hours. I have been told its best to be around 1200 (maybe 1500 max.).

I'm trying to decide if connecting my J pouch will make me miserable like I was with the UC. I worry about the high output and the past cases of pouchitis.

I was so happy when the surgeon was able to construct the J pouch in 2005. Part of me really wants to give it a try. However the ostomy hasn't been so bad. Its so much better than having the UC problems.

My surgeon will do either surgery for me. Its up to me to decide. I've been warned that the J pouch might not be successful in my case. However, if we don't try it we will never know.

I don't want to be miserable with the J pouch though and have to have yet another surgery after that to go to the permanent ileostomy. I'd like to get on with my life.

Any opinions on my situation? I'm 39 years old and never really had any health problem before being diagnosed with UC in 1998. I'm new to this discussion board.

JulieAnn
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mdg
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Post by mdg »

It's a very personal decision that is based mostly on personal values. Generally, J-Pouches are successful.

However, I chose not to have a J-Pouch. I did this for many reasons that were unique to my situation.

I was worried that I really had Crohn's (15 to 20% chance for everyone, slightly higher chance for me, of that being true). I was concerned about the potential for pouchitis, which sounded similar to UC. But most importantly, I wanted the UC portion of my life to be over.

I thought an ileostomy had the best chance of that happening. What I hated about UC was not being able to plan anything. Everything revolved around how I felt--which varied from day to day. I really wanted stability in my life, so I chose an ileostomy.

All this said, there are many valid reasons for a J-Pouch. However, it wasn't right for me.
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bbcopper
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Post by bbcopper »

Hi JulieAnn,

Welcome to the boards! Just a little bit about myself.....I am 32, was diagnosed with UC in Aug of '05, ileostomy in May of '06, j-pouch constructed in Oct '06 and reversal Jan of '07.

There was a few things I was a little confused about in you post. Why do your doctors think the jpouch may not work for you? and how did you have pouchitis, when your pouch was not connected?

The choice of having a jpouch or permanent ileostomy is not an easy one and one that only the individual can make. In your case though, since you have the pouch already constructed and the reversal surgery is much less invasive than the others, I would say that you really have nothing to lose in giving it a shot.

I am 3 weeks out from the reversal. Overall, I feel great! I have realized though that the jpouch is a process and one that takes some time. I am averaging about 10 trips to the bathroom in a 24 hour period. Babywipes and desitin cream are musts to keep the tush in good shape. My hope is that within another month my trips to bathroom with drop to 5 or 6. I have heard from a good handful of folks who are ahead of me with their reversals and they are doing great. The key is to stay positive.

I wish you the best of luck. Whatever decision you do make will be the right one for you!

Take care

Bri
julieann
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Joined: 2007-02-17 21:25:14

Post by julieann »

Here's a little more about my situation.

All I know is you can have pouchitis without having the J Pouch connected. I still have some minor BMs without being connected. (I assume others have experienced this too, but I've been between surgeries for almost 1.5 years now which appears to be fairly unusual.) I've been told that the unconnected portion of my system still collects some waste (not from food) and your system needs to get rid of it. I have a BM every day or every other day - just a couple tablespoons or so. When I get the pouchitis its more BMs per day. I've been treated with antibotics twice now for pouchitis.

I guess my surgeon didn't really say the J pouch would not work. She's more concerned that I will not be happy with my quality of life with it. Physically the J pouch is healed and ready. However with the past experiences with the pouchitis already and my higher than typical volume of output, I may never get my bathroom trips down to a reasonable number. I may never get to the 6 to 10 trips I hear others talk of. It may be liking having the UC all over again and in six months or so, I could be going back to get the permanent ileostomy.

What do I have to lose? Well another year of my life. Six months to try the J pouch and then go back for another surgery for the permanent ileostomy if the J pouch is not significantly better than living with the UC was. I've been fighting this UC for 10 years now. I've basically been robbed of my 30's. A whole decade gone. I've been in and out of hospitals, through tons of testing, and I'm never really able to plan to do anything. Vacation? What's that? I'm not sure I have a lot more fight in me. I'd like to get on with my life.

In case you can't tell, I'm leaning toward the permanent ileostomy. However, I think I would always wonder about the J pouch and if it would work. I'm going to be doing some more soul searching, and gather even more information before I actually schedule surgery.

I really appreciate the replies from both of you. Its very helpful to hear about other people's experiences.

Thanks,
JulieAnn
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Lynne
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Post by Lynne »

Julie,

Have you given any thought to a Kock Pouch ? The pouch is internal and emptied with a catheter. I empty mine 3 times a day. I'd be glad to answer any questions you might have. Post back here or email me.

Good luck in whatever you decide,
Lynne
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Charles_in_Tx
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Post by Charles_in_Tx »

julieann;


Have you checked the forum on J-Poulch.org?

http://www.jpouch.org/
erica
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Post by erica »

I completely agree with MDG that this is a personal decision based on your own values. However, it has helped me to hear the factors others took into account. Please don't think for a second that I think my decision is right for you, or anyone else. In fact, my surgeon thinks I'm crazy!

After a lot of thought, I've come to the decision to keep my ileostomy and not go for the J-Pouch construction. Since I still have my rectum, I could still change my mind. But, I don't see that happening. Two things I really hate are surgery and medication. I also HATE feeling sick. So, the idea of enduring two more surgeries, just to risk pouchitis and more medications isn't worth the payoff for me. Right now, my health and quality of life are excellent. I do realize that eventually my rectum will have to come out, but my surgeon has discussed a less invasive sphincter-sparing surgery where they just strip away the mucosa. I think it's rear-entry only, without a frontal incision (but I really need to learn more about it.)

I mentioned the "payoff" for J-Pouch surgery. This is different for everyone. For me, it would be purely vanity. My ostomy behaves very nicely. Insurance covers 100% of my supplies and I don't have leaks or skin problems. Vanity is becoming less and less of an issue for me. My clothes still fit and look fine, my sex-life hasn't been effected, and I even have some cute bathing suits to wear. Also, I have a two year old and a baby on the way. My family is top priority. I don't want to lose any more time with them. Plus, if she's going to do a J-pouch, my surgeon wants me to have a another C-section- so that's one more surgery to add to the J-pouch list!!!

Of course, you have a different situation. You've already had the J-pouch constructed and it would require a more invasive surgery to remove the J-Pouch than to re-connect it. If it worked well, as most do, you might really like it. Not having a bag hanging off of you would be nice too.

So, alas, I wish you luck in finding the decision that works best for you. These are big decisions and very hard to make. Keep us posted so we can send you encouragement for whatever decision you come to.

Erica
Paully's5.0
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Post by Paully's5.0 »

When I had to make this decision I asked myself 2 questions which sealed the deal for me:

1. Could I see myself being "happy" with an ileostomy?

( I was 24 at the time, in college and single, I wanted to keep my ability to romp around naked without having to explain things....it's college, never know where you could end up!) - this was not the only reason!!

2. Would I regret not knowing what "could have been"?




After thinking about those two questions................the decision to go with the j-pouch was made, I haven't looked back since!
erica
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Post by erica »

Good points Paully! This is such a freaking hard decision!!!
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mdg
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Post by mdg »

On the what if thing, I really don't think about it. I actually don't think the question should even be posed (especially by doctors).

So let's say you're single, find a date, and really like a person. The person dumps you because of the bag. Or if friends no longer include you because of your ileostomy. A better question would be, "what if you didn't get sick, would they have still thought of a shallow thing, and used it as an excuse?"

The "what if" thing--especially if it comes from doctors--doesn't put the patient on realistic grounds to make the decision. I have no doubt that there are physical, psychological, and professional reasons as to why a J-Pouch is better for some. But the "what if" question just causes many patients to dream of "normal" days, which a J-Pouch can come close to but not really duplicate (3-5 times a day under the best of circumstances is what I read when I made the decision).

The question also assumes, whether it intends to or not, that ileostomates sit around griping about how bad their life is, and day dream of things turning out differently. On bad day, I day dream of what life would be like if I hadn't got sick, but those day dreams are fewer now than they were when I was ill.

I've been able to do lots of things I love to do since my surgery. Instead of fretting about whether or not I made the right choice, I've enjoyed them, and my relative good health, while it lasts.

I think a lot of the "what if" questions, and assumptions about quality of life that come from doctors, are caused by a lack of follow-up. If one has UC and an ileostomy that works well, there's technically no reason to see the GI anymore, as the disease is gone. We go off and do what we like to do, and the GI only sees the people who are having problems. J-Pouchers have to go semi-regularly to get scoped, so the GI sees a better sample of patients with that operation.

All this isn't to say that J-Pouches aren't right for some. They are. But I think matching a patients goals, and choosing the operation that givens them the best chance of achieving those goals, is the better way to go than "what if."
Paully's5.0
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Post by Paully's5.0 »

I think the "what if" question is the fundamental basis for any elective surgery. If you're considering surgery, you're probably looking to improve your quality of life, surgical solutions are never guaranteed, so you are looking at your options from a "what if my quality of life can improve from this....." context. Or is there a "possibility that my quality of life can improve......" context. Same question, just different words.

With that being said, any time you have a 'choice' in life, you need to weigh the "what ifs", or "chances" or "risks". So in my opinion the "what ifs" of life are a constant presence. If someone choses to only view the "good" or the "bad", then they have severely hindered their ability to make the best decision for themselves.

It's a very hard decision to have surgery, even harder to know that it could be the biggest decision of your life, and no matter the outcome, you need to be ready to live with that decision and move on. I couldn't imagine making this decision without considering the "what if" possibilities.

I agree that a doctor should not use the "what ifs" to drive a patient to make a one decision over another, but I do feel it is their responsibility to inform the patient of the lifestyle that they could achieve, and it is their responsibility to be willing to have a realistic discussion about the possible outcomes. I firmly believe that it is the PATIENTS responsibility to educate themselves so that they can have a constructive discussion with their surgeon.

If a doctor or surgeon says a you'll be just as "normal" with a j-pouch as with a colon.....................you need to run. And if you believed him, you'd both need to re-take a basic math course that explains the concept of VOLUME.

If a doctor says that bathroom trips between a person with a ostomy and a person with a j-pouch is vastly different......again you need to run. J-pouch and ostomys are going to be similar in volume....only differences are comfort levels and control.

I only made my last two points to re-enforce my stance on how a patient must properly educate themselves before they should even consider making a decision as life changing as this.

So I'll make a revision to my original response:

1 - Determine the "Quality of life" that you want to have

2 - Make a decision based on what you believe gives you the best opportunity to achieve your desired quality of life based upon the amount of good and bad risk you are willing to take.
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mdg
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Post by mdg »

Paully, well said. When I had my surgery, the doctors all wanted to know what I wanted to do; what I cared about, etc. After that, it was clear that an ileostomy was the better option for me.

By the what if thing, I meant anyone (including doctors) suggesting if you have an ileostomy you might wonder, "what if..." I misread your your original post. I'm sorry about that.
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redhead_1978
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Post by redhead_1978 »

I totally have to agree with Paully on this one. All of the points that he made described how I came to reach my decision exactly. I don't want to ever regret not having tried. My first surgery will be done over the summer to remove what's left of my rectum and to form the pouch...talk to me Paully... :wink:
Scars are tattoos with better stories.
Ileo Oct 1996
J-pouch Summer 2007
Paully's5.0
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Post by Paully's5.0 »

redhead_1978 wrote:...talk to me Paully... :wink:
Anytime Red :o :o
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LOLO12366
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Tough Decision

Post by LOLO12366 »

Julieann,
You do have a tough decision to make!
Although we all have our own stories & reasons for the decisions that we have made - I wanted to share my thoughts with you...

I lost my 20's to UC & had an "S-Pouch" constructed at age 32. I wore a temp ileostomy for 12 miserable, horrible weeks :evil: , then had my plumbing reconnected. I thought my problems would all be solved! I was wrong - it was worse than the UC. I suffered for 8 years with chronic pouchitis (took antibiotic, Cipro, for all 8 years), constant pain & butt leakage, the worse case of "diaper rash" known to mankind & I still lived in the bathroom!!! :cry:

My surgeon was so upset that my "S-pouch" wasn't working & said my only option for any quality of life was a permanent ileostomy. After living with a temp for 12 miserable, horrible weeks, I knew I could not live with one for the rest of my life! :x

I finally figured out last year that the life I was leading was anything but "normal" - how bad could the ileostomy be??? :?

I got my permanent ileostomy on Sept. 19, 2006 & have never regretted that decision. I am not sick anymore, have no "diaper rash", don't "live" in the bathroom & my quality of life is SO MUCH BETTER!!! :D

In closing - I do not reget having tried life with the "S-pouch" - the "S/J pouch" seems to work for many, many people. If I had not tried it, I would have always wondered if it would have worked. I do however reget waiting 8 years to get my permanent ileo. My surgeon told me my "s-pouch" would take a year to work properly & when it still didn't work at that time, I wish I would have given in to the permanent ileo sooner.

If you decide against the permanent ileostomy right now & the "pouch" doesn't work out for you (which I pray that it does work!)- don't wait & suffer & think it will get better tomorrow, as tomorrow can turn into 8 years...
Keep us posted on your decision & hope the best for you,
Lori
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