Serious change of heart, can anyone help. I’m headed for j-pouch surgery, have a temp loop ileostomy for two years, no real problems with the ileostomy except for adjustment. I did not have long term uc problems. In spring 2005, I had a 3-1/2in.peptic ulcer, by fall 2005 I began to have changed, painful bowel movements, lost 70lbs, by January 2006 I hit the ER at 110lbs. with bowel obstruction, temp ileostomy, a few days later perforated bowel , arrithmias, malnutrition, and developed a wretched bed sore. Returned to work that May and struggled working the rest of the year so I could acquire another leave of abscence. January 2007 I presented for reconnection, and I had more lg. intestine removed, developed a fistula that hospitalized me 4 times in 2007 from infection, fistula remedied in Sept. 07 along with taking the rest of my colon, I had to leave my job, just too ill to work when my leave was up. Fistulas are just miserable to deal with, worse than the reality of an ileostomy, don’t know if I could cope with another. 11 hospital stays and 5 surgeries in two years later I’m scheduled for J-pouch surgery January 18th. GI and surgeon have concluded I do not have signs of UC, Crohn’s, or cancer, no actual diagnosis, just call it colitis on my sick notes. A consult with a GI doctor, (not very positive), last night, where he indicated continence and leakage a big issue, and to ask my surgeon about a continence pouch and how many surgeries he has done? I must confess to being chicken to call my surgeon and ask these questions a week out till surgery, quite intimidated to let my surgeon know that I have any doubts, he reminds me that it is elective surgery.
Here are my thoughts, I am finally feeling good, the ileostomy has become easy and carefree, will I 6 months down the road, regret not leaving well enough alone? Has this happened to anyone? Are there j-pouch surgeries that really don’t include butt burn, a fissure, pouchitis, etc., or can I expect for sure a run-in with a couple issues? Are most these issues truly temporary?, especially in regard to amount of bowel movements for the rest of my life? I’m 51, and concerned about the lifespan of a j-pouch, facing surgeries in my 60’s?? Do these surgeries affect one’s lifespan when your older? At my age, if the only reason to have the surgery is vanity, I don’t know if that is wise to subject myself physically, particularly because I can really see advantages to the ileo. If I bow out of this surgery will I lose my option to have the surgery at a later date (should I change my mind) from my insurance? I know no matter what the age, everyone of us are scared about the surgery, and this letter resembles other folks prior to surgery, but something is causing me to pause. Geesh, do I have the “guts” to go forward or back out? I look forward to anyone who will respond and I am taking this weekend to watch for posts from this group and pray for insight and information to reach me that will convict me, either way. Thanking you in advance. Victoria

After a year of living with an ileostomy and feeling wonderful for the first time in years, I did not want to go through with the takedown. My son convinced me to go forward and have the takedown. He told me that if I didn't try having a functioning J-pouch, I'd always wonder. Besides, he said if I didn't like having the J-pouch I could always choose to go back to the ileostomy. He was right. I have had my new plumbing (functioning J-pouch) since the summer of 2002 and love it! I know I could live with an ileostomy again if I ever had to but having this J-pouch is bother free and I don't miss making the time to change the appliance, etc. This is as close to normal as it gets!

Dear Cece, Thanks so much for responding to me, I have been scoping this site since November, on and off, never posted till recently, aka Victoria, I just learned how to research posts.
Meaning, I followed your post history to see your path, my daughter showed me. Many posters are quite young, and moving forward to have a j-pouch would be a definite. I take heart listening to them struggling with these issues in the busiest time of their lives! Raising kids, holding on to their careers, my kids were grown when this hit. Being older, I thought it might be wiser to accept the reality of an ileostomy. Your post made me think twice. I guess I'm just downright scared, aren't I?
Personally, I can confess to enjoying the freedom an ileostomy affords me and no longer see it as distasteful in any way, just as you did. I would like to have a similarity in a j-pouch experience with you. I will let you know what I do. Vicky

Its entirely up to you, if your having problems with your Jpouch. I have had mine now for 5 years and I'm very satisfied with it now. Can't imagine spending my life worrying about ostomy clips letting go ever again. Thats MY opinion
GaryD

Best wishes, Vicky! As others have said, most (not all) posters on this forum are having challenges with their J-pouch. Reading about these challenges can be daunting, to say the least. While anything is possible, I really believe it is better to have "tried" than to "not to have tried" to live with a functioning J-pouch. In many ways, for me, having a J-pouch is better than I ever had it with a colon! I'm in control and can go to the bathroom when I want to and empty my J-pouch when I decide to do so. Never could pull this off when I had a healthy colon. When the urge hit....it was pretty much time to defecate. The answer for me is to not let the J-pouch contents get too thick. Just like when I had my ileostomy, I prefer more liquidy effluent. I still have wonderfully perfect control. Those sphincters are working like they are supposed to work even though I'm 67! Best wishes!

Hi GaryD, I don't have a pouch yet, I'm heading for J-Pouch surgery January 18th, I am afraid. I do well with the ileostomy, afraid of leaving a place of wellness. A great leap of faith. My surgeon reminds me it is elective. Hearing more positive stories seem to be shoring me up. I have never had a tougher time making a decision! Thanks for posting and caring, Vicky

Hi CeCe, You're right and the reasoning came down to - I didn't think I could live not trying, that's how I got scheduled. My consult with the GI shook me, as he was not positive. I am glad that people who have been successful stay in touch in this forum, I need them right now. I'm out of work now, everything is lined up to go. Now is a good time. There doesn't seem to be many people who keep ileostomies and dare not move forward, just from fear, huh? Vicky

CeCe, And very interesting about the stool, as I thought the goal was to achieve a thicker stool with a j-pouch, and was wondering how I could do that! Also, after 2 years with an ileo, I am down to 4-5 bag empties a day, is that indicative of how many j-pouch empties I could expect? Do I look at it as the same? Vicky

Hi Flinchblink.... I sent u a Private message... just wondering if u received it... my computer is acting up today..... hattie

Hi, again! I had the same concerns/questions as you do. I liked liquidy effluent in my baggie because it was easier to clean. I know I didn't have to clean it but I liked squirting water around in it whenever I could after I emptied. And, regarding comparing the number of times you'll need to use the toilet to empty once you have the ileostomy takedown as compared to the number of times you find yourself needing to empty your bag.....everyone is different, I'm sure. For me, I needed to empty my baggie much more frequently than I need to empty my J-pouch. However, I am a big/frequent eater and drinker. (I mean of all stuff, not just the "hard" stuff!) The more that goes in.....the more that needs to come out and certain foods/drinks cause a greater need for using the bathroom more frequently. Regarding consistency....it is a personal preference. Some people really work toward having the kind of bowel movement they used to have when they had a well functioning large intestine. My philosophy has been that since my indoor plumbing is totally different, I needed to learn what kind of effluent I preferred and work toward maintaining that preference. I don't need to take anything to help things thicken or loosen...usually.... If things get too thick for me (usually because of what I've eaten), I eat a green Granny Smith apple...skin and all. That takes care of that! It is all an adventure! For me it has been and is a wonderful one! I'm always learning something! Oh, when I see my surgeon for a yearly checkup, he always asks how many bowel movements I have in a day. I gave up telling him I don't count because it seems important to him. Since I know the books say 6-8 a day with a J-pouch is normal, that's what I tell him! Terrible of me, huh?

Hi CeCe, I thought people took imodium and lomotil to slow it down so that it could get firmer, to avoid butt burn from acidic rummy bm. So not all runny bm burns? I just assumed that straight from the small intestine it will always have the burning on skin, and after awhile your skin toughens up? I wash my baggie out too, especially when my stoma burns a little from something I ate.
I have decided to compose an e-mail to my surgeon addressing my concerns and asking him to call me, I'm going to ask him if he has a patient or two I could call. I am receiving much support here and it has done alot to help me work through these fears. Even though I'm less than a week out to my surgery, I'm going to ask him how many j-pouches he's built. What kind of numbers give a comfort zone? What would be too low to go? Vicky

Hey who is your surgeon and what hospital are you going to? I am hving mine done on the 23rd by Dr. Fry at PA Hospital (Philly)

Arty, I am scheduled with Dr. Gerald Isenberg at Jefferson this Friday the 18th. My GI indicated that Jefferson and PA Hospital are the only places that one should go for such a procedure. He advised me to live with the bag if I could, and to ask the surgeon if he makes a continence pouch???, I expected them all to do that! Anyway, has anyone heard of him? Vicky

I haven't heard of him but I know Jefferson is a great hospital...

Just my two cents but I believe each person decides what stool consistency he/she prefers. Regarding butt burn....my experience has been that I get butt burn after having eaten/drunk certain foods. I think it's different for everyone but spicy foods seem to bring it on more than other foods. For me, this doesn't stop me from eating/drinking foods/drinks which cause butt burn. If I want to bother, I use a barrier cream such as Calmoseptine prior to having a bowel movement containing the culprit food/drink. Basically, I know that once the culprit is out of me.....the butt burn is totally gone and there is no longer any burning sensation. Early on after takedown, I experienced more episodes of butt burn than I do now. I eat and drink everything but at first I started out very, very slowly with new foods. I don't take immodium, etc. I just don't find the need to do so. Others really prefer to use it to bring about the results they want. There are a number of foods which lend themselves to thicker stools, if that's what you want to have. You can run a search to identify those. I don't find the need to slow anything down....for me. I have excellent control and my J-pouch holds alot without any discomfort. This improves over time! Oh, one of the early on and later challenges is gas. To be honest with you, I learned to appreciate the presence of gas. I call it my "duct cleaner". It kind of sits on top of the effluent and pushes the stool out of me. The finale to any bathroom episode for me is like a percussion finale! It is loud but feels so good and I feel empty. It takes awhile to learn how to expel gas without expelling stool. At the beginning and for quite some time just be prepared to have stool leave you when all you think you are going to do is pass gas! Better to be prepared! Good idea to make a list of questions for your surgeon. After reading things on this forum, you will probably know more than he does about living with a J-pouch! That's been my experience, anyway!