Question:

Hello, I’m new to the group, but can give some insight for you. I had a j-pouch for about a year and a half.  Believe me, it was much better than the UC!!!  My stool never got more solid than normal diarrhea, but I could control when I wanted to go to the bathroom…my bowel was no longer in control.  I also had multiple boughts of pouchitis, but antibiotics quickly took care of it.  With my J-pouch I was able to comfortably return to work, school, and took up mountain biking. Unfortunately, four months ago my small intestine wrapped itself around multiple adhesions and killed most of itself.  After an emergency surgery I woke up with a stoma again, and only 6 feet of intestine. What I wouldn’t give to have my J-pouch back again…enjoy it. Andy – Hide quoted text — Show quoted text -Michael wrote:

How many of you who have the pouch are happy with the results and glad they had the surgery? I will probably have the second surgery next month to hook it up. I am still beating myself up about the choice I made. Even though all medication failed and I was surviving on pain killers before the surgery. Needless to say I am depressed and kinda scared that I will have more problems then before. It’s so much easier to forget how sick I was and focus on the inconvenience of this bag and possible future problems. Just need a little reassurance. -Michael- -Total Colectomy and J – Pouch w/temporary Ileostomy- -February 20th 2001-

Response:

I have had a permanant ileostomy for almost 5 years now. Prior to that I had a straight ileo-anal anastimosis – they couldn’t make me a j-pouch so they directly connected my small intestine to my anus – for 3 years. Before that I had UC for 15+ years.  The straight shot connection just didn’t work out for me so I had it converted to a ileo December, 96. After my ileostomy I married and now have a delightful 18 month old daughter. On the one hand, I have a few regrets. I regret I didn’t have surgery sooner. I regret I didn’t get a permanant ileostomy right away. I was not a good candidate for j-pouch surgery and most Dr.s wouldn’t have even tried to give me one. On the other hand, I am the person I am today because of the experiences I had. I’m not so sure I would have adjusted to life with an ostomy as well or as quickly as I did if I hadn’t been so sick and my life hadn’t been so limited prior to surgery. I can do anything I want to do now — I missed out on a lot of life and am making up for it. I used to think it was better to be dead than live with an ostomy. I was wrong. I don’t think living tied to the bathroom or surviving on pain killers is a very good way to live. I’d much rather spend time taking my daughter to the park and watching her giggle in the swings. Being sick, having surgery, making choices like we’ve faced – these aren’t easy things. Getting healthy is hard work. But – I think it’s worth it. Life on the other side of that struggle is worth it. The gloom does lift. Things do get easier. Life is good on the other side. Barbara Skoglund barbara.skogl…@att.net

Response:

Hi, Michael — Sorry I didn’t see your post before now.  I didn’t get to my usual newsgroups last week. If you go into MedLine, you can find some studies on patients’ feelings about their J-pouches.  (When I did this search a while back, I think I started my search with "colitis surgery satisfaction.")  Satisfaction tends to run in the 90%-95% range. My own outcome has been less than perfect, due to recurring pouchitis. Nevertheless, I consider myself the luckiest man in the world — and when people ask me, "How are you," I honestly reply, "Fantastic!" — because it could have been cancer instead of dysplasia, and my doctor could have missed it during the colonoscopy. Before my surgery, I was very apprehensive.  I didn’t know if I’d feel the same…or whether it would affect my voice…or what going to the bathroom would feel like.  The answer is, I’m still the same me, and even going to the bathroom feels basically normal. Besides all that, I learned some incredible things about myself and some valuable lessons about life. Sam viperan…@aol.comJunk  (Michael) wrote on 4/23/2001: – Hide quoted text — Show quoted text -

How many of you who have the pouch are happy with the results and glad they

had

the surgery? I will probably have the second surgery next month to hook it up. I am still beating myself up about the choice I made. Even though all medication failed and I was surviving on pain killers before the surgery. Needless to say I am depressed and kinda scared that I will have more problems then before. It’s so much easier to forget how sick I was and focus on the inconvenience of this bag and possible future problems. Just need a little reassurance. -Michael- -Total Colectomy and J – Pouch w/temporary Ileostomy- -February 20th 2001-

Response:

How many of you who have the pouch are happy with the results and glad they had the surgery? I will probably have the second surgery next month to hook it up. I am still beating myself up about the choice I made. Even though all medication failed and I was surviving on pain killers before the surgery. Needless to say I am depressed and kinda scared that I will have more problems then before. It’s so much easier to forget how sick I was and focus on the inconvenience of this bag and possible future problems. Just need a little reassurance. -Michael- -Total Colectomy and J – Pouch w/temporary Ileostomy- -February 20th 2001-

Response:

Question:

BTW, what part of Missouri are you in? I LOVED the drive from Hannibal down to St. Louis! We took a road along the Mississippi and it was just lovely — one of the prettiest places I’ve been. Rebecca

– Hide quoted text — Show quoted text – Julie If you decide on having the surgery …. will you move back down to Florida ???  PLEASE !!! Maryjo, Moving back to Florida would definately be a big consideration.  Although I am not too sure my family would like that too mcuh (my mom and dad that is) they have been begging me to move back to Missouri since the day I got down there! I have all faith that I will be back in the sunshine state eventually, though. By the way, I am planning to come down for a vacation sometime soon (would like to come down at least twice a year)….when I am all recovered and stuff. I would love to visit ya! Julie Cd 84

Response:

Julie anytime you want to come down … let me know … the last time we were going to meet was when Bonnie was down … ( by the way have you heard from her .. I worry since I haven’t heard from her in a long time) but my work schedule sucked … I was still in Walmarts in Lake City then instead of a monday thru friday daytime job here in Ocala Maryjo

Response:

Crohn’s Disease and Colitis are very difficult to distinguish from one another, even with biopsies and colonoscopies. If you do, indeed, have colitis, surgery can be a cure and also will eliminate the risk of colon cancer. If you have Crohn’s disease, surgery will substantially reduce the likelihood and/or severity of flareups and also reduce the risk of colon cancer. I have Crohn’s Disease. Two years ago I had an ileostomy done. My only regret is that did not have it done years before. It does not limit my activities in any way. I doubt anyone knows I have it aside from my wife and doctor and people I’ve specifically told. I can eat what I want to eat. I feel healthier than I have in years. I’m not saying that surgery is for you or anyone else — nor am I saying that it’s a picnic. But it can lead to a vast improvement in the quality (and perhaps quantity) of your life. As for Mayo’s and Jewish-named hospitals — the Cleveland Clinic and the University of Chicago both have reknowned gastroenterology departments. The best to you.

Response:

Thank you so much…I really needed some encouragement today.  The scope went great, I don’t remember a thing…just as I requested and the doc really liked the smiley faces!  :)  Maybe it even helped.  Anyway, what I can remember is that the disease is all in my rectum and lower 1/3 of the colon the rest looked healthy.  The doc seemed to think that was good, because surgery would be a better bet for me.  He took a LOT of biopsies and will discuss the results with me at the visit.   Right now I am not doing too hot.  I always feel worse after a scope.  I also ran out of pain meds today…didn’t judge right to make it through the weekend, and will have to wait until Monday to get more….so tomorrow is really, really going to suck. I recieved a good informative article on surgery today.  It has helped me to see more that surgery looks like the right thing to do.  I am just such a chicken.  A guy from the ostomy.support group sent it, so yes to the question did I subscribe to that group as well.  Talk to yall soon. Julie CD 84 – Hide quoted text — Show quoted text -Crohn’s Disease and Colitis are very difficult to distinguish from one another, even with biopsies and colonoscopies. If you do, indeed, have colitis, surgery can be a cure and also will eliminate the risk of colon cancer. If you have Crohn’s disease, surgery will substantially reduce the likelihood and/or severity of flareups and also reduce the risk of colon cancer. I have Crohn’s Disease. Two years ago I had an ileostomy done. My only regret is that did not have it done years before. It does not limit my activities in any way. I doubt anyone knows I have it aside from my wife and doctor and people I’ve specifically told. I can eat what I want to eat. I feel healthier than I have in years. I’m not saying that surgery is for you or anyone else — nor am I saying that it’s a picnic. But it can lead to a vast improvement in the quality (and perhaps quantity) of your life. As for Mayo’s and Jewish-named hospitals — the Cleveland Clinic and the University of Chicago both have reknowned gastroenterology departments. The best to you.

Response:

Julie: Please email if/when you decide to go to Mayo. I’ll need as much notice as you can give so I can arrange after school care for my kids — but I’ll be happy to come visit you — If you need me I’ll be there! I bet Sherry will be too! Just keep us posted. You are very smart to read EVERYTHING you can get your hands on. Have you also posted to alt.support-ostomy. They are a wonderful group of people as well and can give you all sorts of good information. I also know that there is a J-pouch ring thingie (help me out here Howard Sir Link) which could give you some first hand information on that as well. BTW, I was already to have a J-pouch — only here in Wisconsin they give you a *W* pouch — so I guess if you are from Missouri you have to have an *M*. . . <Grin Rebecca

– Hide quoted text — Show quoted text – I am going in for the scopes tomorrow morning.  I will let you know how everything turns out.  I am just hoping that he can get a really clear picture of everything and tell me exactly what is going on.  Right now I am going through that really fun prep time.  Yippie Skippy. Everyone’s comments and suggestions have been so helpful.  I spent all night tuesday on-line looking up as much as I could find.  After all that, yes, I do think I am ready for surgery, just very scared of it.  And I want to have the right kind…one that will leave me feeling the best longest and living with a better degree of life.  For that reason I am not sure that the J-pouch would be the best bet.  I really would like to not have to deal with diarrhea ever again. I would absolutely love anyone in the group to come visit me in the hospital at Mayo.  I live in Missouri and will need some company and there is nothing like someone else with this dreaded disease to understand what we go through. The thought is much appreciated.  :))) Julie CD 84

Response:

Julie If you decide on having the surgery …. will you move back down to Florida ???  PLEASE !!!  

Response:

I am going in for the scopes tomorrow morning.  I will let you know how everything turns out.  I am just hoping that he can get a really clear picture of everything and tell me exactly what is going on.  Right now I am going through that really fun prep time.  Yippie Skippy. Everyone’s comments and suggestions have been so helpful.  I spent all night tuesday on-line looking up as much as I could find.  After all that, yes, I do think I am ready for surgery, just very scared of it.  And I want to have the right kind…one that will leave me feeling the best longest and living with a better degree of life.  For that reason I am not sure that the J-pouch would be the best bet.  I really would like to not have to deal with diarrhea ever again. I would absolutely love anyone in the group to come visit me in the hospital at Mayo.  I live in Missouri and will need some company and there is nothing like someone else with this dreaded disease to understand what we go through.  The thought is much appreciated.  :))) Julie CD 84

Response:

Julie If you decide on having the surgery …. will you move back down to Florida ???  PLEASE !!!  

Maryjo, Moving back to Florida would definately be a big consideration.  Although I am not too sure my family would like that too mcuh (my mom and dad that is)  they have been begging me to move back to Missouri since the day I got down there! I have all faith that I will be back in the sunshine state eventually, though. By the way, I am planning to come down for a vacation sometime soon (would like to come down at least twice a year)….when I am all recovered and stuff.  I would love to visit ya! Julie Cd 84

Response:

Julie- I wish you luck with  your scopes.  Please keep us informed of what you plan to do.  I live in New Hampshire, so visiting is out of the question ; )  but I would gladly send well wishes via a card if you let me know when, and where, to send it.  Good luck with everything!!! Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Julie,     I had the J-pouch surgery about 2 years ago in 2 steps.  I was definitely ready to have it when I did.  I really feel like I exhausted the possibilities of other treatments.  Up until the moment I made the decision, I was totally against the surgery.  But, when you are ready, you know.     I had a very good outcome with my surgery.  I had very few problems with the temp. ileostomy after I got used to taking care of it.  It was very liberating for me not to have to run to the bathroom a gazillion times a day.  I had bowel control returned the day of the take-down surgery.  I don’t have the pain and urgency I used to have.  Right now I go to the bathroom 4-6 times a day.  Sometimes, if I am very busy, I only go 3 times! I don’t have any leakage.  But the biggest change is that I can go out in the community and not even think about a bathroom!  We moved across the country several months ago, so I don’t even know where all the bathrooms are.  And now, I can fart with confidence that it is just gas.     If you have the time, take it slow and find out as much as you can about the different surgery options to you.  The library, on line and even your hospital’s medical library can help.  I have a list of questions to ask the surgeon.  I have gotten some good input from this group, and I plan on working on it this week to update it.  If you would like a copy, E-mail me and I will be happy to give it to you. Sarah UC class of ‘96, J-pouch ‘98

– Hide quoted text — Show quoted text – Well, I went in for a "I’m sick now" appointment today.  Talked with the GI a little more about things.  It was nice to have some input from you guys to share with him.  He thinks I may be a canidate for the J-pouch surgery. Not sure that is really what I want to do though with all the negitave things I have heard about it lately.  However, I do already have diarrhea daily…more than 10 times a day and that seems like it should go down to 6 or so, right?

Response:

Julie, I agree with what Midas and Rebecca said.  Get a second opinion first.  You need to make sure that you are making the right decision. Like Rebecca said if you go to Mayo we can come and visit you.  : ) Take Care, Sherry – Hide quoted text — Show quoted text – I totally agree with Midas on this one. I know you have been dealing with this for a long time (16 years!) — when was the last time you got a second opinion? Are YOU ready for surgery???? Just because your doc is, doesn’t mean you are. If you are, I say "go for it" and get the best doc you can (Mayo isn’t too far — perhaps Sherry and I can come visit you??). Otherwise, there are lots of good suggestions here for things to try. Where are you located? I have a GREAT doctor in Milwaukee who I would be glad to share with you! Rebecca x-no-archive: yes Doc says he is looking at a diseased organ that he doesn’t see much hopes for treating medically anymore and if there was he would do it To me that means he’s run out of options in *his* arsenal. But that doesn’t necessarily have to mean that you’ve run out of options in *yours*.  One refrain we see over and over again on this NG is "Doctors don’t have all the answers."  Maybe the time is ripe for you to consult another doctor (i.e. get a "second opinion")… or perhaps to consider exploring what other alternatives are available to you. Then he throws the thought at me that maybe I have UC after all (16 years of after all), even though that was his original diagnosis. If so this surgery would cure me.  I really think that is what he is hoping for. But what if it turns out *not* to be UC after you’ve had the surgery? I would want to be darn sure before submitting to surgery – yet another reason for getting a second opinion. Then we talked that if surgery was decided upon that he would like to refer me to Mayo clinic, or some other place with Jewish in the name, for it.  That sounded like a good idea to me.  If I am going to have a perminant body change it should be done by the best, that really know what they are doing, right? Oh, I absolutely agree!  If you’re gonna get cut anyway, go for the best!  My husband has to have surgery (for something else, not IBD), and we really did our homework and are actually planning to travel quite a distance for him to be placed in the best possible hands.  If you have to have it, you want someone who does a *lot* of this kind of thing and has the best possible success rate. I told him about my mom and husband’s reaction to this surgery thing and he said to drag them along to my office appointment after the tests. He figures he can do a good "sales" job on them.  ;-) This is set for the 14th. Hmmm… that gives you almost two whole weeks to become as educated as you can about both the surgery option and your other options.  Many people on this newsgroup have offered excellent suggestions. I’ll simply reiterate that, in my own experience, I’ve seen the SCD help the most people.  If you decide to give it a try, you have this two week window to get it going.  There are no guarantees, but it may at least buy you some more time. — MG

Got questions?  Get answers over the phone at Keen.com. Up to 100 minutes free! http://www.keen.com

Response:

Hi, Julie — When I was preparing for my own J-pouch surgery three years ago, my "nightmare scenario" was that they would take out my colon and then discover that what I’d had was actually CD.  (This would have been highly unlikely in my case, and in fact everything turned out fine.  But I did get a roommate in the hospital to whom it actually had happened some years earlier.) One big lesson that I learned along the way was the importance of getting a top-notch second opinion.  (And getting a second pathologist to review your biopsy slides.)  Especially if they’re talking about changing your diagnosis from CD to UC.  The best expert you can find, even if you have to travel some. Good luck with your exams. Sam in Connecticut – Hide quoted text — Show quoted text – Well, I went in for a "I’m sick now" appointment today.  Talked with the GI a little more about things.  It was nice to have some input from you guys to share with him.  He thinks I may be a canidate for the J-pouch surgery.  Not sure that is really what I want to do though with all the negitave things I have heard about it lately.  However, I do already have diarrhea daily…more than 10 times a day and that seems like it should go down to 6 or so, right? Doc says he is looking at a diseased organ that he doesn’t see much hopes for treating medically anymore and if there was he would do it…which i already knew.  I just think that it basicly isn’t functioning hardly at all anymore from all the scar tissue and now active disease. I am having scopes done on Friday.  Both kind.  Yippie.  Then a upper GI series done on Monday.  This is all to tell if the disease is all in my colon or not. He wants to make sure he gets a good look at my small intestine and take biopsies.  I say he better give me lots of drugs.  I DON’T want to feel all this.  Then he throws the thought at me that maybe I have UC after all (16 years of after all), even though that was his original diagnosis.  If so this surgery would cure me.  I really think that is what he is hoping for.   Then we talked that if surgery was decided upon that he would like to refer me to Mayo clinic, or some other place with Jewish in the name, for it.  That sounded like a good idea to me.  If I am going to have a perminant body change it should be done by the best, that really know what they are doing, right? I told him about my mom and husband’s reaction to this surgery thing and he said to drag them along to my office appointment after the tests.  This is set for the 14th.  Told my mom about all this today and she wasn’t happy AT ALL. Hubby seemed to take it better, but then again he doesn’t usually vocalize his feelings.   Thanks everyone for your input and support.  I really am going to be needing it no matter what happens!  I am still praying for yet another miracle to drag me out of this mess. Julie CD 84

Response:

I totally agree with Midas on this one. I know you have been dealing with this for a long time (16 years!) — when was the last time you got a second opinion? Are YOU ready for surgery???? Just because your doc is, doesn’t mean you are. If you are, I say "go for it" and get the best doc you can (Mayo isn’t too far — perhaps Sherry and I can come visit you??). Otherwise, there are lots of good suggestions here for things to try. Where are you located? I have a GREAT doctor in Milwaukee who I would be glad to share with you! Rebecca

– Hide quoted text — Show quoted text – x-no-archive: yes Doc says he is looking at a diseased organ that he doesn’t see much hopes for treating medically anymore and if there was he would do it To me that means he’s run out of options in *his* arsenal.  But that doesn’t necessarily have to mean that you’ve run out of options in *yours*.  One refrain we see over and over again on this NG is "Doctors don’t have all the answers."  Maybe the time is ripe for you to consult another doctor (i.e. get a "second opinion")… or perhaps to consider exploring what other alternatives are available to you. Then he throws the thought at me that maybe I have UC after all (16 years of after all), even though that was his original diagnosis. If so this surgery would cure me.  I really think that is what he is hoping for. But what if it turns out *not* to be UC after you’ve had the surgery? I would want to be darn sure before submitting to surgery – yet another reason for getting a second opinion. Then we talked that if surgery was decided upon that he would like to refer me to Mayo clinic, or some other place with Jewish in the name, for it.  That sounded like a good idea to me.  If I am going to have a perminant body change it should be done by the best, that really know what they are doing, right? Oh, I absolutely agree!  If you’re gonna get cut anyway, go for the best!  My husband has to have surgery (for something else, not IBD), and we really did our homework and are actually planning to travel quite a distance for him to be placed in the best possible hands.  If you have to have it, you want someone who does a *lot* of this kind of thing and has the best possible success rate. I told him about my mom and husband’s reaction to this surgery thing and he said to drag them along to my office appointment after the tests. He figures he can do a good "sales" job on them.  ;-) This is set for the 14th. Hmmm… that gives you almost two whole weeks to become as educated as you can about both the surgery option and your other options.  Many people on this newsgroup have offered excellent suggestions.  I’ll simply reiterate that, in my own experience, I’ve seen the SCD help the most people.  If you decide to give it a try, you have this two week window to get it going.  There are no guarantees, but it may at least buy you some more time. — MG

Response:

Well, I went in for a "I’m sick now" appointment today.  Talked with the GI a little more about things.  It was nice to have some input from you guys to share with him.  He thinks I may be a canidate for the J-pouch surgery.  Not sure that is really what I want to do though with all the negitave things I have heard about it lately.  However, I do already have diarrhea daily…more than 10 times a day and that seems like it should go down to 6 or so, right? Doc says he is looking at a diseased organ that he doesn’t see much hopes for treating medically anymore and if there was he would do it…which i already knew.  I just think that it basicly isn’t functioning hardly at all anymore from all the scar tissue and now active disease. I am having scopes done on Friday.  Both kind.  Yippie.  Then a upper GI series done on Monday.  This is all to tell if the disease is all in my colon or not. He wants to make sure he gets a good look at my small intestine and take biopsies.  I say he better give me lots of drugs.  I DON’T want to feel all this.  Then he throws the thought at me that maybe I have UC after all (16 years of after all), even though that was his original diagnosis.  If so this surgery would cure me.  I really think that is what he is hoping for.   Then we talked that if surgery was decided upon that he would like to refer me to Mayo clinic, or some other place with Jewish in the name, for it.  That sounded like a good idea to me.  If I am going to have a perminant body change it should be done by the best, that really know what they are doing, right? I told him about my mom and husband’s reaction to this surgery thing and he said to drag them along to my office appointment after the tests.  This is set for the 14th.  Told my mom about all this today and she wasn’t happy AT ALL. Hubby seemed to take it better, but then again he doesn’t usually vocalize his feelings.   Thanks everyone for your input and support.  I really am going to be needing it no matter what happens!  I am still praying for yet another miracle to drag me out of this mess. Julie CD 84

Response:

Question:

– Hide quoted text — Show quoted text –        4)How careful must I be about the external bag while I wear it. I have a 18 month old son who likes to jump on Daddy. Will I still be able to rough-house with him? Good question.  Personally, I’m worried about my 4-year-old son splitting my seam when he jumps in our bed in the morning. There’s an ostomy newsgroup where you can get more info on questions like this.  (I believe it’s alt.support.ostomy.) How noticable is the bag on the outside while I’m in public? Where exactly is the bag located on the body?(above/below the belt-line?) Can I still run/swim/bike etc.? snip, snip Personally, I’d rather not have the ostomy, but in the long run, that’s a short-run consideration and the three months will pass before I know it.

Just remember folks, the J-pouch is not the only option.  A conventional Brooke Ileostomy looks pretty attractive when you consider the failure rate of J-pouches, the one to two extra surgeries the J-pouch requires, and the 10 times a day.  When you get your ostomy you just may like it so much you may want to keep it. When you have a nine-inch incision that’s healing, no kid should be climbing on you, ostomy or no.  However, I did have a couple of active girls climbing all over me in the pool this summer with no problem, although I did try to make sure they weren’t grabbing me around the waist and thus grabbing my stoma. Nobody knows I have an ostomy unless I tell them about it.  I once had someone stare at my waistline for a good 15 minutes trying to find the "bulge" once I told her I had an ostomy.  She was amazed that she could see nothing even when looking for it. –Gretchen "I love my ostomy" Vaughn

Response:

I am looking at a two part procedure:    a) Cutting out the colon and getting an external bag while they build a internal bag inside me.    b)Haveing the external bag removed, and the internal bag hooked up. Is this basically the idea?

Yes, that’s basically the idea, though some people whose colitis is very active  require it done in 3 steps, as described in Lynn Allain’s post elsewhere on  this thread.  (By the way, I’ll also vouch for the high quality of the  Cleveland Clinic’s booklet that she mentioned.) I’m scheduled for the first half of the 2-step procedure near the end of this  month, so I’ve just finished doing a lot of research on it. I have an appointment with a surgeon in November to discuss it, but I’d like to be informed before this.

Good for you…The informed attitude is important.  (By the way, there’s a  wealth of information on the Web.  One good place to start is MedLine.)  Does  the long lead-time for your consultation mean you’ll be traveling to one of  the leading surgeons? My main questions are:    1) How long will I have to stay in the hospital after the first surgery. (Days/weeks/months?)

In my case, the surgery will be on the second of 9 days in the hospital.  Including recovery time at home, I’m expecting to be out of my office for  about a month.    2) How long between surgery #1 and #2.(weeks/months?)

Typically 3 months, though sometimes complications or personal convenience make  that go longer.    3)How long will I be in the hospital after surgery #2?

That’s just a few days.    4)How careful must I be about the external bag while I wear it. I have a 18 month old son who likes to jump on Daddy. Will I still be able to rough-house with him?

Good question.  Personally, I’m worried about my 4-year-old son splitting my  seam when he jumps in our bed in the morning. There’s an ostomy newsgroup where you can get more info on questions like this.   (I believe it’s alt.support.ostomy.) How noticable is the bag on the outside while I’m in public? Where exactly is the bag located on the body?(above/below the belt-line?) Can I still run/swim/bike etc.?

I’ve spoken with several people who played golf between surgeries, and I know  one guy who was lifting weights, doing situps, and playing basketball. People tell me they wore bags for months and nobody (including, in one case, a  girlfriend) ever knew.  But everybody seems to have one accident or  near-accident story.  Some slightly older kids actually find it kind of cool  to help Daddy with his equipment. Personally, I’d rather not have the ostomy, but in the long run, that’s a  short-run consideration and the three months will pass before I know it.    5)Is the surgery really worth it?

I’ve spoken or e-mailed with over a dozen people who have been through this  procedure, in most cases because of UC that wouldn’t quit, and even the ones  who had complications are glad they did it.  HOWEVER — you can’t get your  colon back later if you change your mind or if they find a cure, so be sure  it’s what YOU want be fore you do it.  (I’m having my surgery because of  dysplasia, so I don’t have much choice.) Immediately after the last surgery, when the "J-pouch" is new and small, most  people need to "go to the can" about 10 times a day.  During the first year or  two, the pouch stretches so bowel frequency goes down to the 4-5 range.  These  numbers can be improved with Lomotil or Imodium.  And your stools will never  be as well formed as they once were. You may also initially have difficulty distinguishing between stool and gas.  And some people experience "leakage" overnight or during the day, though this  problem also becomes less common as time goes by.  Some centers have used  pelvic floor exercises and biofeedback to help in this area. Feel free to ask more questions, and good luck! Sam

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- Hide quoted text — Show quoted text – I’m tired of the damn drugs, and need some questions answered about colitis surgery. I’ve been on varying levels of Pred. for the last 3 years, but can’t get off of it. I get down to 10mg/day and everything goes to hell. I’ve been on 12 Asacol/day for the last year because the Dipentum wasn’t helping. Guess what, the Asacol isn’t helping either. I’m looking for someone who has had the surgery to answer some questions if possible.  I am looking at a two part procedure:         a) Cutting out the colon and getting an external bag while they build a internal bag inside me.         b)Haveing the external bag removed, and the internal bag hooked up. Is this basically the idea? I have an appointment with a surgeon in November to discuss it, but I’d like to be informed before this. I understand that I will be in the hospital for a while after the first part, spend a while out of the hospital (months) then go back in for the second part. My main questions are:         1) How long will I have to stay in the hospital after the first surgery. (Days/weeks/months?)         2) How long between surgery #1 and #2.(weeks/months?)         3)How long will I be in the hospital after surgery #2?(Days/weeks/months?)         4)How careful must I be about the external bag while I wear it. I have a 18 month old son who likes to jump on Daddy. Will I still be able to rough-house with him? How noticable is the bag on the outside while I’m in public? Where exactly is the bag located on the body?(above/below the belt-line?) Can I still run/swim/bike etc.?         5)Is the surgery really worth it? Will the constant ache in my side be gone forever? Will I be done with the 10 sec. sprint to the can be over? (Look out Donavin Bailey, you’re slowing me down!) Will the ache in my joints, the weight gain, acne and hair-loss of prednisone usage be finally gone? Any help offered will go far towards my decision for surgery. I look forward to any info pro/con surgery. Thank you in advance.

I can answer a few of your questions based on my experience with my 14 year old niece who is having the j pouch procedure in three stages (because she was too ill with UC to have it done in two stages). She had her first stage surgery (removal of the entire colon but leaving a rectal stump to be used in the reconstructive phase) on August 4. She had been in the hospital a month with her first attack of UC, which did not respond to any drugs, at the time of her surgery. She was in the hospital for antoher 10 days after the surgery. She had the staples (used instead of stiches) taken out about a week later, and two weeks after leaving the hospital, she had a final visit to the surgeon. All pain from the UC was gone immediately after the surgery. The only pain she had was from the surgery, and that was easily controlled with a morphine pump that allowed her to determine when and how much pain relief she needed. After about four days on the pump with decreasing doses of morphine, she was weaned onto codeine and Tylenol. Once she was out of the hospital, she had very little pain, and by September 4 when she came to live with me, she was doing great. The stoma is slightly below the belt. She had trouble with the one piece pouches, which are flatter and easier to conceal under clothing, but she does fine with the two piece pouch. Her ileostomy is completely hidden under her clothes. A very tight knit shirt might cause it to be somewhat visible, but otherwise she wears all her normal clothing. For the first few weeks after surgery, she had to gradually adjust to a normal diet. She started out with low residue foods, but after about a month she was able to eat everything except corn kernels, nuts, seeds, and popcorn. As far as activities go, she has to avoid contact sports, but she can do everything else, including swimming. Once she was off prednisone, the moon face, the bizarre behavior she began to exhibit while on extremely high doses of prednisone, and gastritis went away very rapidly. She still has the horrible acne, and I am taking her to a dermatologist for that. She was gradually weaned off the prednisone and has been off of it completely for about two weeks. Her second surgery to construct the j pouch is scheduled for November 4, and the third surgery is going to be done in early February. Her surgeon says she will be in the hospital 6 to 10 days after the second surgery and two or three days after the third surgery. As far as resouces go, if you do a search using the term "pouchitis", you will find a wealth of information on the j pouch surgery. Also, the Cleveland Clinic has a wonderful web site on the surgery, and there is a Pouch-o-Gram site where people who have had the surgery write about their personal experiences (both good and not as good) with the j pouch. The Cleveland Clinic also has a very informative booklet that they sent us free of charge when we called there. The booklet will answer many of your questions. Also, your local Crohn’s and Colitis Foundation chapter will, no doubt, know which surgeons in your area do the j pouch procedure, and the national foundation office is New York is very helpful. Lynn Allain — Chessfreak!   http://www.concentric.net/~lallain

Response:

I’m tired of the damn drugs, and need some questions answered about colitis surgery. I’ve been on varying levels of Pred. for the last 3 years, but can’t get off of it. I get down to 10mg/day and everything goes to hell. I’ve been on 12 Asacol/day for the last year because the Dipentum wasn’t helping. Guess what, the Asacol isn’t helping either. I’m looking for someone who has had the surgery to answer some questions if possible.  I am looking at a two part procedure:         a) Cutting out the colon and getting an external bag while they build a internal bag inside me.         b)Haveing the external bag removed, and the internal bag hooked up. Is this basically the idea? I have an appointment with a surgeon in November to discuss it, but I’d like to be informed before this. I understand that I will be in the hospital for a while after the first part, spend a while out of the hospital (months) then go back in for the second part. My main questions are:         1) How long will I have to stay in the hospital after the first surgery. (Days/weeks/months?)         2) How long between surgery #1 and #2.(weeks/months?)         3)How long will I be in the hospital after surgery #2?(Days/weeks/months?)         4)How careful must I be about the external bag while I wear it. I have a 18 month old son who likes to jump on Daddy. Will I still be able to rough-house with him? How noticable is the bag on the outside while I’m in public? Where exactly is the bag located on the body?(above/below the belt-line?) Can I still run/swim/bike etc.?         5)Is the surgery really worth it? Will the constant ache in my side be gone forever? Will I be done with the 10 sec. sprint to the can be over? (Look out Donavin Bailey, you’re slowing me down!) Will the ache in my joints, the weight gain, acne and hair-loss of prednisone usage be finally gone? Any help offered will go far towards my decision for surgery. I look forward to any info pro/con surgery. Thank you in advance.

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