J pouch versus permanent ileostomy

[julieann]

I decided I'm going with the permanent ileostomy. I called the surgeon and I'm waiting to hear back on a surgery date. I'll let you know when I know.

I decided that my quality of life will most likily be better with the permanent ileostomy. I'd really like a good J-Pouch, but with some of my other health issues (especially the steroid dependency), I think the permanent ileostomy is best for me. I don't think I'd have as good of a quality of life with the JPouch as I hear others speak of.

My first surgery was October 2005. I've had a long time to deal with the temporary ileostomy. Its not nearly as bad as I imagined pre-surgery. Once I got everything under control healthwise I was able to return to work and my hobby of riding and showing horses. It didn't stop me at all. If fact it was much better than dealing with the UC. Much much better.

I am single and worry about bringing up the ileostomy some day with a new boyfriend, but maybe it'll actually be a good thing. It'll weed out the shallow guys much faster

I do really appreciate all your posts here. Its good for me to read how others came to the decisions that they did. I also belong to an local ostomy support group. I was terrified to walk in there the first day, but they are really a great bunch of 'normal' people. I'd never guess any of them have ostomies. They don't have meetings in the summer (but are always available by phone) because they are all too busy living life and having fun in the summer. I like that.

Thanks again and I'll keep you updated on my progress.

JulieAnn

[julieann]

My surgery was suppose to be in late April, but it got moved up to next week. There was an opening sooner due to a cancellation so I took it. I'm convinced that permanent is the way to go for me. I just have too much output. I just don't believe I'd be able to control it satisfactorily with the J-Pouch. Plus that pouchititis...............

My surgery is Wednesday, March 28 at the University of Michigan Hospital in Ann Arbor. They don't tell you a surgery time until the day before. I don't know if other hospitals are like that too or not. They are planning on a six hour surgery for me. I will be in the hospital one week to 10 days afterwards.

I'm looking forward to getting it done and getting on with life. I'm happy I could get in sooner. That way I'll hopefully have more summer to enjoy..............

I'll update you again when I get home from the hospital.

JulieAnn

[LOLO12366]

Julie,

I think you will be very happy with your decision! You will probably have the best summer you've had in a long time. You'll be back to showing those horses in no time!

Please remember I'm only a phone call or email away! Contact me when you feel up to it!

I'll be keeping you in my thoughts & prayers!

Lori

[Lynne]

Julieann,

Please let us hear from you once you are home and up to it ! We're thinking of you.......

Lynne
CDN Chair

[julieann]

I'm back home from my surgery. It took me a little while to get back on the computer.

I spent two weeks in the hospital after my surgery. I had some problems with low blood pressure after surgery. Then I had some trouble keeping food down at first. I got the dreaded NG tube for three nights. And yes they put it in while I was awake. I hope to never go through that again and I feel for others that have dealt with it.

I'm doing well with my permanent ileostomy. I've still got higher than average output, but we are working with some meds to lower it to a more reasonable level.

For this surgery, they are using a wound vac to close my incision versus stitches. If you have future surgery and have acess to a wound vac, I would recommend it. It heals up your incision faster. You have to carry around 24/7 a purse/backpack thing that the vac is in, but the results are worth it. I think I've only got a couple more weeks with the wound vac and I'll be healed up. When I first saw my incision in the hospital, I didn't think it would heal up. It was so deep.

JulieAnn

[lesson]

Good to hear you are feeling well

Continue to take it easy and be well!

[Lynne]

JulieAnn - WELCOME BACK !!

[mdg]

I'm glad the surgery went well, and that you're home. I had watery output for a few weeks after my operation. The surgeon said that was normal. They told me to eat lots of things that thickened the output up (potatoes, rice, pancakes, eggs, bread, meat, etc). That helped.

After a few months, my output became paste-like and thick. I have less of it now, for the most part. Sometimes, it becomes watery again, but that only lasts for a day or two.

[TheFallGuy]

Nobody is wrong or right about what they do or decide on this website on weather to have a j pouch or permanent ostomy and really up to the individual but there is a possibility that 24 percent of the people who have had j pouch surgery will eventually have to go back to a permanent ostomy so your not out of the woods yet ....you have to understand with the j pouch there isnt one thing that can go wrong its a number of things so count your blessing j pouchers having a bag again could be in your crystal ball....just went through the j pouch surgery and have been resting at home for 4 weeks and so far so good....had a ostomy bag for 10 months and uc for ten years and the most important thing if anyone decides to have j pouch surgery is the skill of your surgeon...am new to the group so will tell you about my horror stories with my bag yes horror stories folks

[TheFallGuy]

Sorry Julie Ann didnt realize you already went for surgery to have a permanent ostomy at the University Of Michigan and hope everything works out well and I had the dreaded tube but down my nose to my stomach awake and lucky i had a doctor do it because the nurse who took care of me at the time says doctors usually have the nurses do it but it hurt like like hell to me all the same!!!!

[TheFallGuy]

I recently had my j pouch surgery and was looking at a few websites and typed in ulcerative colitis and hit images and scrolled down to a picture of some guy called john and clicked on the photo and john goes on to show pictures of his stoma and the healing of his scar after j pouch surgery and wondered if his wounds and scares look normal and to me it looks like he was butchered by his surgeon and looks like he went through open heart surgery and even goes on to say that the bag left its imprint in his skin you know the wafer that sticks over the stoma...well anyway if you get a chance check his pictures out and nothing looks normal to me to compared to my scars and stoma.

[TheFallGuy]

What a discussion and everyone opnion was great and would like to add that when I decided on the J pouch I wanted to get as close as I could to my former self before UC ravaged the inside of my colon.....having the bag got me away from the sickness of UC but felt like the J Pouch when given an option from my doctor would allow me to not have the sickness and to be without the bag..Ericas right the surgery isnt easy and cant fault anybody who decides they dont want to have it done the surgery was just one more painful thing I was lending myself too and ultimatlely isnt what where all getting too is really what makes everyone happy on an individual basis and not what the world thinks...If Erica loves having the bag because of freedom from sickness and more operations and Paulie who decides he likes the J Pouch because you know he feels hes still young and can handle being under the knife more and doesnt want the stigmata of the bag (hope I am right on this one) and mdg becuase he looks at everything and believes the bag is his best choice for a healthier lifestyle isnt that was is most important?

Jeff

[lindaj]

I am in a similiar position. I have what I thought was a permanent ileo. on 9/1/05. Any other options weren't available at my local hospital and I was too sick to investigate anything at the time. So now I am going for a consult to CC in July. I had complications before and after my surgery so I know that I am considered more high risk. Also there was a question of Crohns colitis vs. UC at the time of surgery. I am thinking that if I get approved for surgery, I will go for a J-pouch. I am looking forward to not dealing with bags any more. I have not yet found a full proof system and have leaks more often than I would like. I am looking forward to meeting some of you in Chicago this August.

[julieann]

HI I just wanted to let you know I'm still doing good at 13 weeks out from my surgery. I came back from this surgery much better than I did from my initial surgery in October 2005. I had some serious complications then. I started back to work part time 7 weeks after this 2007 surgery. Last time it took 7 MONTHS before I was able to work part time. I do have a desk job so its not as physically demanding as what some people might have in terms of jobs.

I'm happy with my decision for me. In 2005, I was thrilled with the opportunity to pursue a J-Pouch over a permanent ostomy. However the permanent ostomy is working well for me. There is a different right answer for everyone. Its best just to make an informed decision. This site was very helpful.

I'm looking forward to Chicago in August. I waited until I thought I was healed enough before I committed to going. I would not have been able to go if it was five months after my 2005 surgery.

JulieAnn

[lindaj]

Thanks JulieAnn for your response. I need to at least investigate my options all the way around. I went back to work about 5 months after my surgery but would come home every day and sleep for 2 hours. It took a year post op before I could say I felt normal again. I am hoping that the J-pouch recovery will be smoother if I get approved.