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Posted 1/3/2009 2:04 PM (GMT 0)
I came over from the crohns board where I have been a meamber for 4 years. I need some help with an issue with my husband. He has been found positive for HNPCC (lynch syndrome) a nasty little gene(with this gene you have a 82% chance of having colon cancer). Out of 11 people we have 5 positive(1 being our youngest daughter who is 32 and clean after her first colonoscopy-Thank God ) and 3 young adults that need to be tested. My husband at this time seems to be the only one having any huge problems with this gene. He has had 5 pre cancerous pylops so far and after seeing 2 gastros and a top colorectal surgeon in Rochester, New York it has been suggested that he have his colon removed. We need to know what he can expect his bowels to be like after sugery. This is a matter of trying our best that in the near future his does not get colon cancer so I don't want to scare him with stories he is just asking me what he can expect in the change of his bowel. This is really hard for him because there are no real issues with his bowels as far as bowel movements. He was told all pylops were pre-cancer and that the biopsies showed colitis which is odd because he has no issues that would imply colitis. So I could really use some help in some very gentle ways because I am trying my best not to scare him any more then he already is. Thank so much for your time and help if you can. Best of health to you all and God bless. donna
Posted 1/3/2009 2:29 PM (GMT 0)

grammy--welcome to the ostomy board!!  I sorry to hear of your husband's situation but as you know Healing Well is a great place for info...I don't have specific answers for his situation, my diagnosis is Crohn's, but I have had my colon removed...will your husband have an ileostomy or will he have his small intestine attached to his rectum?  Is he a candidate for a J-pouch? 

Posted 1/3/2009 9:34 PM (GMT 0)
Ohio76,
I'm sorry I've told this so many times that I didn't realize I left that out. He is having the small intestine attached to the rectum. He is not a candidate for the j-pouch. I would appreciate any help you or anyone else coud give me. I am hoping to give him something to help answer his questions. Thanks again. donna
Posted 1/3/2009 9:46 PM (GMT 0)

Hi Grammy,

I'm from Binghamton NY and I had my surgery done in Rochester NY in July if you would like to talk you can email me at  (Please pm Judy for her email address). I might be able to answer some of your questions.

Judy

Hi Judy, just to let you know it's never a good idea to leave your email address on a public message board like this - spammers can get hold of it and you really don't want that :) .... Shaz


Post Edited By Moderator (Shaz032) : 1/3/2009 9:49:35 PM (GMT-7)

Posted 1/3/2009 9:55 PM (GMT 0)

Judy, Thank you for your reply. I will e-mail you later from home. We live about an hour from Binghamton. That must have been a hike for you driving back and forth. Who was your surgeon if you don't mind my asking? Thank you. donna 

Posted 1/4/2009 12:30 AM (GMT 0)

Hi Donna,

Yes, it is a hike, but I've traveled all the way to Detroit, Michigan to try to find someone to help me and that dr sent me to Rochester because it was closer.  My first GI dr in Rochester was Dr. Tarun Kothari, he was great at diagnosing things for me...IBS...severe adhesions, but he didn't do many procedures...but he did send me to the BEST surgeon...Dr. Vincent Chang...he works out of Rochester General and Highland Hospital.  Dr. Chang sent me to Dr. Chey who is now my GI dr...when you email me I can tell you about my experience...it has been VERY positive :-) .

Judy

Posted 2/4/2009 8:52 PM (GMT 0)

Could anyone help with a question my husband has about having his colon removed. He knows there will D but is there also an urgency? He is concerned and thinks he should also talk to the surgeon about having a bag. If there ia a huge problem with needing to go right now, he's not sure he can deal with that the rest of his life. Thank you for any help you can offer.

Best of health to all. donna

Posted 2/4/2009 10:18 PM (GMT 0)

Hi Donna,

Your husband will have an urgency to go in the beginning but that will gradually change as his small intestine learns to take on its new role.  I personally have never had an accident or have even come close to having one. As we have talked before, your husband will do very well and will be surprised with how strong he is and with what is is able to accept when he is put into a situation.  Time passes so quickly and before he knows it his body will adjust and he will be amazed with how well he handles this whole surgery.  He will just need a lot of time to heal and patience with himself as he learns what foods he tolerates.

I wish him and you the very best and you continue to be in my prayers.

Judy 

Posted 2/5/2009 12:01 AM (GMT 0)

Judy,

Thanks once again for your help. I'm trying to see if this is how it is for most of the people that have this done. It's more so the urgency that has him concerned now and he is wondering if he should consider going with a bag. Not his first choicebut he is concerned enough that he wants to talk to the surgeon about it.

Sounds like you did very well and I wish you well in the future and the best of health. Thanks again for your patience with our questions. donna

Posted 2/5/2009 12:43 AM (GMT 0)

Donna,

Not a problem answering questions, that's what we're here for :)  the bag is an awful drastic measure if it's not needed.  There was a possiblity that I was going to have a temp. bag but I told my doctor he had better run if I woke up with one because it wasn't an option.  I guess I've always went into this with an extremely positive attitude and I didn't focus on the what ifs because those things would have probably put me over the edge...that's most likely what got me in this situation to begin with...I internalize everything...so I just decided this was going to make me better and there was no other option...not saying everyone can do this but I'm sticking with my thoughts :) ... so please...have him talk with his dr but don't go to extremes if he doesn't have to... as I said...most of the things in the beginning are temporary and are over before you know it:)

Positive thinking wink

Judy

Posted 2/9/2009 8:46 PM (GMT 0)

Grammy,

It was hard for to have my surgery, too, because even though it was after long-term colitis, my symtoms were mostly controlled with meds and I lived mostly a normal life.

I had a total abdominal colectomy Sept. 5, 2007 because of high-grade dysplasia in one of the biopsies from my last colonoscopy in May of 2007.  This was after about 28 years of ulcerative colits, mostly controlled through meds.   I was told I'd be in the hospital 5 days but ended up staying for 14 days because of an ileus (temporary blockage) that resolved on its own by the time I left the hospital.  Because of the ileus, I was not able to keep any food or drink down for the first 12 days post-op.  I'm not trying to scare you but there can be complications.  My surgeon thought that my intestines just didn't "wake up" and start working because of the narcotics used to put me under for the surgery.   By the way, in my case, there was very early stage cancer found after the colon was removed, so the surgery was really needed.

For my surgery, the surgeon left the rectum and re-attached the ileum to the rectum.  He pulled the end of the ileum past the top of the rectum and attached the side of the ileum to the top of the rectum.  The first month I had mostly liquid bm's about 8-10 times a day and I returned to work about 8-9 weeks after surgery.  I was still tired a lot from working full-time again but it did get better over time.  After a couple of months I was down to about 6-8 times a day and over the next few months things improved further.  I'm about 17 months post-op now and I have about 3-5 semi-formed bm's a day.  One thing that I've found that helps me is to take metamucil in water in the morning and sometimes in the evening.  It acts as a binding agent and helps the stool to be more formed.  A low fiber diet helps and I have to avoid raw veggies and tossed salads.  Also, I have found that using wipes in addition to TP is pretty much a must.

I hope this isn't too graphic a description.  I've been able to travel quite a bit and really haven't had any major problems in the long term.  I traveled to mexico last March for a week for a volunteer mission trip to help build a house in Juarez and didn't get sick.  This January I went to Uganda on another volunteer trip and was gone 12 days, 7 of those in Uganda and was able to able to delay for up to 15 hours without toilet facilities, and did not get sick there either.  My long-term quality of life is really good and I often go all day without having a bm at work.  I did lose about 20 pounds by the time I left the hospital but have gained back about 10.  I have managed to keep my weight a few pound less than pre-op, but mainly because I wanted to.  I did have a some control issues the first couple of weeks after the surgery but none long-term.  You get used to a new "normal" after this kind of surgery but I decided that I'd rather live without a colon than die with one from cancer. 

I am still at risk for cancer because I opted to keep my rectum so I go in once a year for  a flexible sigmoidoscopy but it goes really fast because I only have about 8 inches left to be checked.  I'm glad I had the surgery when I did and I feel like it saved my life.

Posted 2/9/2009 10:13 PM (GMT 0)
ucRick,

Thank you so much for your reply, don't worry about the graphics, I have crohns and now my husband has all of these issues so we are finding out a lot about that end of the body:) We just read your post and my husband was wondering if you have an urgency with all these bowel movements. I really think that is a bigger concern for him then the amount. Could you tell beofre hand or did it just hit you and you needed to find a bathroom NOW. 8-10 bowel movements a day is a lot but if having to get there now is not an issue then waiting until your body figures out how it needs to work now will be easier to bare.

We worry what they will find when they remove the colon having had 5 pre-cancerous polyps. One polyp was 4cm and was the one they were worried about the most. All biopsies showed pre-cancerous tissue and colitis through out the colon. It's strange I was more shocked then my husband about the colitis because he has no symptoms of colitis, this being a good thing of course. So we are getting closer to our surgery date and my husband is getting very nervous, I'm sure mine will hit closer to time to go up to Rochester.

Thank you again for all your help and we both wish you the best of health.

donna 

Posted 2/10/2009 4:11 AM (GMT 0)
YIKES! the big "C" word. I think the thought of cancer is scarier than having an ostomy. That was a major factor in my decision to have a total colectomy. I'm only 28 yrs old, but I was told my colon was so bad, that I would most likely get cancer. The ? wasn't if, but when. My GI was already looking for neoplastic cells.
After I had my baby, all I could think about was leaving her without a mommy. Not if I have the choice to stop it. Having surgery was a hard decision. But I got to choose to not battle colon cancer. EVER!

I just wanted to say that if your husband chooses to have a permanent ostomy, it's not that bad. I've said this many times b4 (well, I've only been saying it for a little over a month-but I talk a lot :-) ) i can have a j-pouch, but I'm not sure I want to b/c I feel so good with my ostomy!
I know it's different with your husband situation b/c he doesn't feel bad. I realize that makes things harder, but he's lucky he has the option to stop things b4 they get too serious. Especially since his odds are so high.

I think for your role, it will be important to be supportive no matter what. If I didn't have my husbands 100% support, I'd be far FAR worse off. It sounds like you are already doing a great job of that. Your husband is lucky to have you.
Emotionally, I think it's hard for everyone to accept things at first. But once you've gone through the grieving process, and started to accept things, it gets better.

You might try visiting the j-pouch.org site to see if there are posts for what he's having done. There are lots of wonderful, fantastic, and helpful people on this site that can help you, but for even more info you might see. I did tons of research; I have a need to be informed. Just a suggestion.

We are here for anything you need. Don't be afraid to ask about anything (even your mice problems LOL!)
Good luck and keep us posted.
Posted 2/10/2009 11:22 AM (GMT 0)
i have always been against taking decisions which limit your options unless you have to. i think a permanent ileostomy limits your options. if you have a 2 stage j-pouch operation, you get to trial the ileostomy before the j-pouch gets connected.

Posted 2/10/2009 11:25 PM (GMT 0)
Thank you all for your replies. We will see the surgeon again in March before he has surgery. He has a lot of questions he wants to ask and then we can go from there. I can't tell my husband what to do just support him with his choice. Thank you again and the best of health to all of you.
donna
Posted 2/11/2009 1:49 AM (GMT 0)
I wouldn't worry about the colitis as much as I would the polyps...there really is only one way to stop it before it spreads. As with every diagnosis/treatment, the patient has to be the one who is okay with all of it, and you are doing the best thing by being there for your hubby. Please keep us posted:)
Posted 2/11/2009 9:00 PM (GMT 0)

Ohio76,

We are not really worried about the colitis, the polyps scare me more then anything. This gene is nasty and like to move quickly if it strikes. I am all for lets do what ever it is we are going to do. Thank you for your reply. We can use all the kind words we can get. It really helps to hear from people that understand. Have not run across anyone else that has lynch syndrome. Thanks again. donna

Posted 2/18/2009 5:11 PM (GMT 0)
Donna,

Sorry I hadn't responded to your last question about urgency but I was traveling last weekend and just now got a chance to respond.
I did have some urgency in the first few months but not an uncontrollable urge to find a toilet immediately. I don't usually feel that much urgency before going but sometimes I do. I can usually delay going for an hour or so if I need to, but have learned that I can just go if it's been awhile since I've gone. If I wait too long I feel something like abdominal cramping until I can have a bm.

The surgeon(s) opinion will have a lot to do with whether he can spare the rectum in the surgery and they will take into account all the factors of you husband's condition. I saw 3 different surgeons and 2 of them gave me the option of keeping the rectum and the 3rd did not give me that option. The reason the first 2 gave me the option of keeping it was because my colitis and subsequent dysplasia was limited to the right side of my colon in the ascending colon. There is the possibility that my colitis could become active in my rectum and require an additional surgery later if dysplasia or cancer occurs again in that region. I do have to go in once a year for a flexible sigmoidoscopy with biopsy because of that risk.
The 3rd surgeon who did not give me the option of keeping the rectum told me that he felt that if I kept the rectum that my surgery was just a stop-gap surgery and that I would probably have to have the rest removed in a later surgery.
Prior to my surgery, I asked my surgeon if I was crazy to choose to keep the rectum and he said "No, I wouldn't give you the option if I thought it was crazy". I have to add that all 3 surgeons are highly respected and perform a lot of this type of surgery so you can get different opinions among the experts and you just have to decide for yourself which way to go. The surgeon that did not give me the option of keeping the rectum had lost his mother to colon cancer as a young man and was probably more concerned with the cancer risk than quality of life issues, so each specialist has their own perspective. It was a very difficult decision for me and I think that I finally decided that I had to commit some kind of surgery so I decided on the total abdominal colectomy with ileo-rectal anastomosis. If dysplasia is found later in my rectum there is a good chance that I can go with a j-pouch or permanent ileostomy in a later surgery if the dysplasia is found early enough.
I wish you and your husband the best in this difficult situation.
Posted 2/18/2009 9:42 PM (GMT 0)

ucRick,

That's ok, thanks for posting. I think my husband will be able to handle this he just needs to give him self time and not be in a hurry. I just saw my onc. and he said my husband is 100% doing the right thing by having his colon out. I think even though we are starting to get nervous that we are doing the right thing to insure that his future will not involve colon cancer. Thank you for sharing your expirence I am sure this will help to ease my husbands mind. My husband will have to have his rectum checked every 6 months but that is a small price to pay to be able to have his surgery done this way.

Sounds like you had a lot of really good Dr.s giving you advice. My husband surgeon his the chief of the colorectal dept at the hospital where we will be going. This Dr. helped to head up and teach in Scotland on how to do this surgery by laperscopic (sp?) I feel we are in good hands.

Wishing you the best of health.

donna

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