Talk Cancer

Question:

I just found this group, and I guess this is where I need to be now.  U.C. for 15 years and now I am to have my colon removed in mid-July and I don’t have a clue.  My understanding from my doctor was that he would do a J-Pouch along with the colon removal, but everything I read seems to point to two surgeries? I am really, really frightened and reading some of your posts scares me even more. I had connected with Susan on the Chrons/UC support group and was glad to keep up with her progress through this group. Thanks. Patty Halverson

Response:

Patty I wouldn’t worry too much and just go with the flow. There are lots and lots of happy customers. The ones you hear from on this group are of the few that have problems to solve. Most of us experience little trouble after the first few weeks. John "Patty Halverson" <pa…@earthlink.net> wrote in message

news:lvER6.8211$651.558945@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I just found this group, and I guess this is where I need to be now.  U.C. > for 15 years and now I am to have my colon removed in mid-July and I don’t > have a clue.  My understanding from my doctor was that he would do a J-Pouch > along with the colon removal, but everything I read seems to point to two > surgeries? > I am really, really frightened and reading some of your posts scares me even > more. > I had connected with Susan on the Chrons/UC support group and was glad to > keep up with her progress through this group. > Thanks. > Patty Halverson

Response:

- Hide quoted text — Show quoted text -Patty Halverson wrote: > I just found this group, and I guess this is where I need to be now.  U.C. > for 15 years and now I am to have my colon removed in mid-July and I don’t > have a clue.  My understanding from my doctor was that he would do a J-Pouch > along with the colon removal, but everything I read seems to point to two > surgeries? > I am really, really frightened and reading some of your posts scares me even > more. > I had connected with Susan on the Chrons/UC support group and was glad to > keep up with her progress through this group. > Thanks. > Patty Halverson

Patty, much depends on your own situation. If you are strong and healthy, they can, and do perform the operation in one swell foop these days. When I had mine done, it was a "two parter" .In my case, my surgeries were of an emergency nature, and I was NOT an "optimal" candidate for it. But, I did give it a go for ten years before I gave up.  I was worth the effort. Good luck in any case. -Deano

Response:

Posted & E-mailed Patty,     Here’s a list of questions to take to your surgeon before you go in for the surgery.  You should have everything explained to you, and be given reassurance, especially since you  have a bit of time before the surgery.     The J-pouch surgery can be done in 1-3 steps, depending on the method your surgeon uses and how healthy you are when you have the surgery.     What are you most afraid of?  I had my surgeries about 2 1/2 years ago, and if you have any questions, I’ll do my best to answer them. Sarah Please explain this surgery to me. Why should I have this particular surgery?  What will be the out come if I don’t? How many have you performed? How many similar have you performed, and which were they? When will it be scheduled? Are you taking a vacation or will you be out of town after the surgery? Who is your back up?  When can I meet him/her? What is the best day of the week for surgery? Will interns or residents be assisting?  What are their roles, and when do they rotate? Do you use powder free or latex free gloves? Do you use Seprafilm to prevent scarring? Do you videotape the surgery? Which hospital are you affiliated with? Which anesthesiologist do you recommend? Will you refer me to an ET nurse? How many steps will it take for me?  Why? How long is the surgery expected to take for each step? Is this traditional abdominal surgery or laproscopically? How long should I expect to stay in the hospital after each step?  How long is recovery at home? What is the expected out come, and how long after surgery? When will the pouch be ready for take down, and what tests are performed? What do you consider success/failure? What % continence should I expect day and night immediately?  After 3 months, 6 months, 1 year? What is your complication rate?  What complications might occur? What effect will there be on other organs? Should I donate my own blood? What type of follow up will I have, short and long term? What tests need to be performed prior to surgery?  How will the outcomes of these tests affect the type of surgery done? What is the chance of disease remaining, or cancer occurring in remaining tissues? Will tissues be sent to pathology for examination?  When will the results be available? Where will you make the incisions? What will I look like when I come out of anesthesia?  What tubes will be placed?  What complications can occur from the tubes? Should I do Kegel or other exercises? What happens if I have an obstruction or blockage? How can I tell when it happens?  What do I do? When should I call you, when should I go to the ER? MEDICATION What should my prednisone level be prior to surgery? Will you give a bolus dose of prednisone at surgery? What about prednisone in the years following surgery? Will I need immune-suppressants (6-MP, Imuran), anti-inflammtories (Asacol, Pentasa, enemas, suppositories) following surgery?  When should I take my last dose? PAIN CONTROL What will you use during surgery?  Epidural/general -After the surgery in the hospital?  PCA -At home? -Non-traditional? FERTILITY How will this affect fertility? What can be done to preserve fertility? Women Will this affect my menstrual cycle? Should I change my birth control method?  For how long? Will you sew my fallopian tubes so they don’t kink? How will this affect pregnancy? How will this affect delivery?  Vaginal vs. C-section? Men What do you do to preserve the ability to have erections? Should I bank my sperm? What percentages of your patients have retrograde ejaculation? ENTEROSTOMAL (ET) NURSE Ileostomy placement What should I do to prepare? What follow up visits should I expect? Are you available in an emergency?  If not, do you have a back up? AFTER THE FIRST STEP/ILEOSTOMY When can I eat?  What can I eat? What will the output look like? How long will I have it for?  What will the consistency be? What type will it be?  Loop, double barrel, mucous fistula? How often should I follow up with you?  With the ET nurse? When can I shower? When do the staples come out? What supplies will I leave the hospital with? POUCH FORMATION Will you hand sew or staple? Will you strip remaining membranes in the anal canal?  Why? How much tissue is removed? What is the effect on nutrition? Should I use enemas to expand it? Do you recommend dilation? What tests will I have done before takedown? AFTER THE TAKE DOWN/LAST STEP How many BMs should I expect day/night? What will the stools look like?  What consistency? What should I eat? Will I need Imodium or stool thickeners? Will I have a sore bottom? RESOURCES What resources can you provide?  -Other patients  -Local support group  -National support group  -Books/pamphlets  -Patient education nurse  -ET nurse  -Internet  -Studies done  -Journal publications FAILURE OPTIONS When would you consider this surgery a failure? What percentage of your patients has converted?  After how long? What options are there available?  Ileostomy? BCIR? Patty Halverson <pa…@earthlink.net> wrote in message

news:lvER6.8211$651.558945@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I just found this group, and I guess this is where I need to be now.  U.C. > for 15 years and now I am to have my colon removed in mid-July and I don’t > have a clue.  My understanding from my doctor was that he would do a J-Pouch > along with the colon removal, but everything I read seems to point to two > surgeries? > I am really, really frightened and reading some of your posts scares me even > more. > I had connected with Susan on the Chrons/UC support group and was glad to > keep up with her progress through this group. > Thanks. > Patty Halverson

Response:

This is a really comprehensive and excellent list, which should be helpful for anyone facing this surgery.  Compliments on putting this together.  I don’t know if a surgeon would be put off by being handed such a list, but he/she shouldn’t be, as this is stuff patients really have to know, and I don’t think it would really take all that long to respond to everything here. Chuck B. "TheDesos" <jnsd…@earthlink.net> wrote in message

news:jy9S6.12547$S2.976215@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Posted & E-mailed > Patty, >     Here’s a list of questions to take to your surgeon before you go in for > the surgery.  You should have everything explained to you, and be given > reassurance, especially since you  have a bit of time before the surgery. >     The J-pouch surgery can be done in 1-3 steps, depending on the method > your surgeon uses and how healthy you are when you have the surgery. >     What are you most afraid of?  I had my surgeries about 2 1/2 years ago, > and if you have any questions, I’ll do my best to answer them. > Sarah > Please explain this surgery to me. > Why should I have this particular surgery?  What will be the out come if I > don’t? > How many have you performed? > How many similar have you performed, and which were they? > When will it be scheduled? > Are you taking a vacation or will you be out of town after the surgery? > Who is your back up?  When can I meet him/her? > What is the best day of the week for surgery? > Will interns or residents be assisting?  What are their roles, and when do > they rotate? > Do you use powder free or latex free gloves? > Do you use Seprafilm to prevent scarring? > Do you videotape the surgery? > Which hospital are you affiliated with? > Which anesthesiologist do you recommend? > Will you refer me to an ET nurse? > How many steps will it take for me?  Why? > How long is the surgery expected to take for each step? > Is this traditional abdominal surgery or laproscopically? > How long should I expect to stay in the hospital after each step?  How long > is recovery at home? > What is the expected out come, and how long after surgery? > When will the pouch be ready for take down, and what tests are performed? > What do you consider success/failure? > What % continence should I expect day and night immediately? After 3 > months, 6 months, 1 year? > What is your complication rate?  What complications might occur? > What effect will there be on other organs? > Should I donate my own blood? > What type of follow up will I have, short and long term? > What tests need to be performed prior to surgery?  How will the outcomes of > these tests affect the type of surgery done? > What is the chance of disease remaining, or cancer occurring in remaining > tissues? > Will tissues be sent to pathology for examination?  When will the results be > available? > Where will you make the incisions? > What will I look like when I come out of anesthesia?  What tubes will be > placed?  What complications can occur from the tubes? > Should I do Kegel or other exercises? > What happens if I have an obstruction or blockage? > How can I tell when it happens?  What do I do? > When should I call you, when should I go to the ER? > MEDICATION > What should my prednisone level be prior to surgery? > Will you give a bolus dose of prednisone at surgery? > What about prednisone in the years following surgery? > Will I need immune-suppressants (6-MP, Imuran),

anti-inflammtories (Asacol, – Hide quoted text — Show quoted text -> Pentasa, enemas, suppositories) following surgery?  When should I take my > last dose? > PAIN CONTROL > What will you use during surgery?  Epidural/general > -After the surgery in the hospital?  PCA > -At home? > -Non-traditional? > FERTILITY > How will this affect fertility? > What can be done to preserve fertility? > Women > Will this affect my menstrual cycle? > Should I change my birth control method?  For how long? > Will you sew my fallopian tubes so they don’t kink? > How will this affect pregnancy? > How will this affect delivery?  Vaginal vs. C-section? > Men > What do you do to preserve the ability to have erections? > Should I bank my sperm? > What percentages of your patients have retrograde ejaculation? > ENTEROSTOMAL (ET) NURSE > Ileostomy placement > What should I do to prepare? > What follow up visits should I expect? > Are you available in an emergency?  If not, do you have a back up? > AFTER THE FIRST STEP/ILEOSTOMY > When can I eat?  What can I eat? > What will the output look like? > How long will I have it for?  What will the consistency be? > What type will it be?  Loop, double barrel, mucous fistula? > How often should I follow up with you?  With the ET nurse? > When can I shower? > When do the staples come out? > What supplies will I leave the hospital with? > POUCH FORMATION > Will you hand sew or staple? > Will you strip remaining membranes in the anal canal?  Why? > How much tissue is removed? > What is the effect on nutrition? > Should I use enemas to expand it? > Do you recommend dilation? > What tests will I have done before takedown? > AFTER THE TAKE DOWN/LAST STEP > How many BMs should I expect day/night? > What will the stools look like?  What consistency? > What should I eat? > Will I need Imodium or stool thickeners? > Will I have a sore bottom? > RESOURCES > What resources can you provide? >  -Other patients >  -Local support group >  -National support group >  -Books/pamphlets >  -Patient education nurse >  -ET nurse >  -Internet >  -Studies done >  -Journal publications > FAILURE OPTIONS > When would you consider this surgery a failure? > What percentage of your patients has converted?  After how long? > What options are there available?  Ileostomy? BCIR? > Patty Halverson <pa…@earthlink.net> wrote in message > news:lvER6.8211$651.558945@newsread1.prod.itd.earthlink.net… > > I just found this group, and I guess this is where I need to be now.  U.C. > > for 15 years and now I am to have my colon removed in

mid-July and I don’t – Hide quoted text — Show quoted text -> > have a clue.  My understanding from my doctor was that he would do a > J-Pouch > > along with the colon removal, but everything I read seems to point to two > > surgeries? > > I am really, really frightened and reading some of your posts scares me > even > > more. > > I had connected with Susan on the Chrons/UC support group and was glad to > > keep up with her progress through this group. > > Thanks. > > Patty Halverson

Response:

Thank you.  I did this with the help of people from this NG and alt.support.crohns-colitis.  I took 2 lists almost as long into my surgeon, and he was impressed that I had done my homework.  Some of these questions may not apply to everyone, and a person should feel free to edit the list if they feel there is too much on it, or there is a time limit with the surgeon.  One idea is to fax or E-mail the list to the office before the visit.  A nurse may be able to answer some of the more basic questions, and it will let the doctor know there is a lot to talk about. Sarah C. Berlin <cberl…@pitt.edu> wrote in message

news:9fbej6$4pf@dispatch.concentric.net… – Hide quoted text — Show quoted text -> This is a really comprehensive and excellent list, which should > be helpful for anyone facing this surgery.  Compliments on > putting this together.  I don’t know if a surgeon would be put > off by being handed such a list, but he/she shouldn’t be, as this > is stuff patients really have to know, and I don’t think it would > really take all that long to respond to everything here. > Chuck B.

Response: