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Total Colectomy... Part 12

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Posted 1/12/2007 10:11 PM (GMT 0)

Hi krissie,

Welcome to our thread. I don't know if you want to maybe backup one heading to ostomies. On this thread we have either had total colectomys (TC)...having had our small intestines sewn to our rectums (ileorectal anastomosis) or are expecting upcoming surgeries for this procedure. You must be very frustrated with having to learn the ins and outs of having a colostomy bag.  I know that there have been a few on this site that have had a reversal of this procedure and now have the rectum reattached. Do the docs plan on reversing your procedure in the future? How did you come to have the surgery? We're you experiencing severe constipation or colonic inertia? I read a previous post from you yesterday and it sounds like you've been through way too much. Having to deal with internal issues is bad enough but when you have had all the external stuff to deal with also it can really knock your socks off. I know that taking it one day at a time has helped me. Also getting your priorities together and right now you are the priority! Take time to allow your body to heal and do not worry about what others think. My mother in law has a bag and when she rumbles she just politely says 'excuse me' with a smile and nothing more is said. She is 77 and a first class act...very dignified but in no way snooty. She had a colostomy 20 years ago due to ovarian cancer. In the whole realm of things she is so thankful to be alive. So give yourself some credit...you've been through a lot and don't let anyone downsize the issues...including ex's. You will find someone who will love your heart and not base their feelings on your bodily functions. Hopefully your daughters are a big support for you right now. Take care and gets lots of rest so your body can mend, okay? Try to rent some fun movies to make your heart glad, okay? Or get your girls to take you out to the movies...I just saw 'Night at the Museum' and thoroughly enjoyed it.

gogently

Posted 1/12/2007 11:19 PM (GMT 0)

Hi esoR,

Welcome! Well your not alone in having had previous ab surgeries gone amiss. Try to read back a few pages of posts and you'll see that we are pretty much on the same page with our colons malfunctioning. I don't know why it is that our colons decide to shut down...the docs don't know either...I was told something about it being a brain-gut dysfunction. Pre-op symptoms vary from person to person but the basics are 1. you are not going very often because of the severe constipation and 2. you have tried about everything to try to have a bowel movement because you're body is refusing to do it on it's own.

Have they started any testing with you yet? Read back a couple of pages of posts and there's one to shellypoo that has a website that list the tests. Try to arm yourself with as much info as possible because it is good to know what to expect and what each test does. Hope this helps

gogently

Posted 1/13/2007 12:11 AM (GMT 0)
GoGently,

 

Thank you for responding.  I had half of my large intestine removed after ten years of hell.  Misdiagnosing me and not getting anywhere.  It came to be a huge problem about a year ago when I started to become hugely incontinent.  My life changed to the point t hat I could not leave my home for fear of having an "accident".  Neither one of my husbands could handle any of this.  With the first I had some leakage that was easy to take care of.  I had many anal fistula surgeries while married to him.  He just thought I was digusting......He wanted a thin wife, but did not want a 100 lb one I guess.  Then I met my next one.  He said all the right things and my self-esteem was so far gone.  The everything got worse.  i was in terrible pain all of the time.  I had to cancel most everything to stay in the bathroom.  There were times when my youngest would sit  in the bathroom with me to keep me company and color or something.  Sounds gross but that is where I would spend the majority of my time.  If I had to go out, or to Massachusetts..my mom has terminal lung ca....I would wear depends and still have to carry more of them, changes of clothes and lots of cleaning materials.  When I recover from this surgery, I can finally spend a lot of time helping my mom.  I couldn't before becasue I was always in the BR.  I had half of my large intestine removed and the colostomy placed on my left side.  It was talked about being reversible, but I have absolutely no muscle control in my colon at all, so I don't know what will happen with that. I am still trying to recover.  Since the surgery, I have become a dropper.  I drop everything in my hands.  If no one is around....I have to bend, boy does that hurt.  Getting out of bed......horrible.  I know deep down that this is going to change my life for the better, but it is so hard getting used to it all.  Like tonight, I was at the grocery store, and my colostomy decided to talk really loud to everyone........very embarrassing.

 

Thanks for listening,

Krissie

Posted 1/13/2007 1:30 AM (GMT 0)
Hi Gogently, My background is that I had a hysterectomy 12 years ago. Was fine until last year then started having difficulty moving bowels. Had the urge everyday and lots of stool ready to move, just hard to get it out. Started having 9 partial moves per morning. Took forever to finish going. Part of my sigmoid colon had fallen to where uterus used to be and was partially blocking rectum, so all the partial moves. Had pelvic floor reconstruction including removal of sigmoid colon. The anastomosis strictured in so I only had a 3 millimeter opening to pass bowel through. Surgeon said "time will cure". Needless to say it didn't. Had to drink Colyte every other day for a month to melt stool to liquid to get it out. Finally got to a bigger hospital where the stricture technically stayed dilated after only two dilations. By then though, I think my colon had gotten used to Colyte. So had to take 3,000-3,600 milligrams of milk of mag per night. Went well and tons. Taking less magnesia produced nothing and am not sure why. Anyway they said to be sure and move bowels to keep the stricture stretched. Fiber knots up in me that's why I didn't take that. But I'd off and on have signs stricture shrunk again even though it hadn't. Went for a second opinion and got a chemical colitis and pericardial effusion from chemical they forgot to wash off sigmoidoscope. Decided to stick with the place that did safe dilations. Had anorectal manometry which indicates outlet obstruction in addition to the stricture. Am awaiting defecography to see if outlet problem is operable. Then transit test. Original surgeon said my colon was floppy and cecum dilated and this was prior to lax dependence! Have never been so scared. esoR
Posted 1/13/2007 1:32 AM (GMT 0)
Gogently,
Yesterday I was so exstatic when I asked the doctor if all the testing was over and they responded with a yes and that all the waiting was over and everything will move really quickly now. I have not heard of the reconstruction. What they want to do is the total colectomy and then have me do more biofeedback for my pelvic floor dysfunction. I guess they think there is still hope for that.

I meet with my surgeon next week already! Then I get my surgery date. I have started to write my long list of questions! Any suggestions for good questions would be appreciated, I keep feeling like I'm forgetting something even though I have like 30 questions. I want to get good quality full use out of my hour with him! I have chosen a surgeon in San Francisco at California Pacific Medical Center. I have been seeing a (how do you call it? Renound? I guess that's the word? He's highly respected and well known for this field.) motility specialist at CPMC who highly recommended him. (Plus, turned out he's already in my insurance network.tongue)
Posted 1/13/2007 4:49 AM (GMT 0)
Hi!

New here and I was wondering if any of you can answer a few questions for me.

I had a TAC in 2002 and have had ZERO problems since.  Only thing was the first week getting used to the new plumbing (was going every hour) but have had great success with my surgery, I even go my life back because I never left the house.

Anyway...I was just wondering if any of you get stomach pains and cramps (gotta get to a bathroom QUICK) like the old days before the surgery?  Like I said, I havent had any pain until recently.  The only thing I am thinking is that I tested positive for h.Pylori and I havent started taking the meds yet and wondering that is what is causing the "old pains" to come back.  I am getting really scared because I dont want to be afraid to leave my home like before.  I have been dealing with the pain these last few weeks ok but tonight, it got bad and it was like the old days when I would drive home as fast as I could because I knew it would be bad.  I AM FREAKING OUT because I dont want to have gone through that for nothing and be scared to leave my home all the time for free of not knowing when the cramps will come and I will need to "go".  Its so weird because I havent had this at all since my surgery.

Anyone?

Thanks!

Posted 1/13/2007 8:51 AM (GMT 0)
Think you need to call your M.D. and tell him/her your symptoms.  I am sorry to hear what you are going through.

Krissie

Posted 1/13/2007 8:55 AM (GMT 0)
Tor some reason, I post and then I click on the box to let me know when someone responds to my post.  I keep getting notified of posts that have nothing to do with mine.  Am I doing something wrong?

Krissie

Posted 1/13/2007 7:46 PM (GMT 0)

krissie said...
Tor some reason, I post and then I click on the box to let me know when someone responds to my post.  I keep getting notified of posts that have nothing to do with mine.  Am I doing something wrong?

Krissi

Its because your posts are not on a thread of their own.  This is one big post so if have the "notify me of posts" option on THIS thread it is going to notify you of ANY posts because this is one long thread.  Does that make sense? 
Posted 1/13/2007 7:58 PM (GMT 0)
Thanks...now I understand.

Krissie

 

 

Posted 1/14/2007 5:17 PM (GMT 0)

Hi gogently, I hope your day is going well. I just read some prior comments and wanted to tell you how wonderful you are for being so supportive of others here and having alot of important information you are giving everyone. It really is great. I am doing okay today and am feeling good. I got a good nights sleep which has been the problem the last few nights and you know how that affects everything else. I will check back later on. Take care, enpointe

Hi Krissie, welcome to this site, it is very informative and supportive, you are not alone. You have been going through alot and I hope you are taking a day at a time which I need to remember. I will check in later and just wanted to say hi.

Hi eso, I hope I spelled it right and think I didn't. I am glad you are here too. We can all be such help to one another because who else really knows what we are going through and it is hard to talk to people about out bowel functions!! I am so glad I found this site and hope you will too. Will talk again, hope you have an okay day.

Posted 1/14/2007 8:19 PM (GMT 0)

Hi enpointe, thank you for being there for me. I haven't heard of zanaflex before. Is it like flexeril? Out of curiosity, did you have the fibro before your ab surgeries or at least smaller symptoms of it? After my surgery 2001 for pelvic floor reconstruction, the fibro came on full steam. I realize looking back that I had been having issues with it before but it was a little here and a little there...like getting braces for the second time at 35 for TMJ! I'm so glad that you slept good last night. It is so important for us so we can heal.

Tracy, did you get in for your pre-op yet? Mine is tomorrow and I keep thinking of you. I'm also praying for a successful surgery and a rapid and perfect recovery for you. Did they give you a 'menu' of things you could eat the first few weeks? I have held off going to the store...although I did get the calmoseptine ordered. Let me know how you're doing, okay? I keep getting butterflies...hoping that they'll fly me away!

gogently

Posted 1/14/2007 9:02 PM (GMT 0)

esoR, I also had a vaginal hysterectomy 19 years ago and started having bowel problems several years later. In 2001 they did a pelvic floor reconstruction with mesh. My sigmiod colon was where my uterus was and causing the same problems you were experiencing. But instead of removing it they tied it to my hip to keep it in place! So now 6 years later...and still having bowel problems, they want to do a TC. I also don't do well on fiber (just creates a whole lot of pressure and pain) and have tried everything to 'move'. Is this the second time around for the defecography and the Sitz marker tests (colonic transit) for you? I know this is nerve racking! For us it is like 'what do you mean again?' I know it takes your breath away. But it will be okay...honest. Please don't worry and just take it one step at a time, okay? 

gogently

Posted 1/14/2007 9:40 PM (GMT 0)
booty! I love your enthusiam! I don't think I've read very many posts on this thread that were more excited to get the surgery over with and get on with their lives! Hopefully it will all come together quickly for you...possibly this month! I'm hopeing the best for you. My surgery is in a week...I'll remember you as I'm counting backwards, okay? LOL gogently

emmys2, Welcome to our thread. I know that your post will be answered by someone who is 'tried and true' and has possibly experienced some of the things you have going on. Hopefully your symptoms will clear up after the antibiotics to take care of the h.Pylori. The bacteria can make your intestines cranky and could be making you very uncomfortable. Have you started your meds yet?

krissie, I thought it was wonderful that you're there for your mom. Remember, don't push, don't pull, don't lift, and bend slowly. Give yourself time to heal and try to stay away from the stress for the moment until your firmly planted on your feet again. Others won't mind...you've just been through a major surgery.
Posted 1/15/2007 2:43 AM (GMT 0)
Gogently,

Thank you and good luck at your surgery!
Posted 1/15/2007 3:37 AM (GMT 0)
Hi Gogently,
Yes my second time around on the defecogram. Supposed to have one with ultrasound gel done with MRI imaging so no barium to get stuck, but the machine is down for 6 weeks. Gotta see what my outlet obstruction is before then. May have to get the barium paste and xray kind sooner. We'll see. Original surgeon didn't have me do a transit test. Did one for this new surgeon but had to cheat and do fleet enemas. With outlet obstruction the stool is there and literally bursting to get out. Had to help it or burst. Need to redo transit test; I could only do it on liquid diet if I was allowed no enema for 5 days. Auuugh! Interesting that they tied your sigmoid to your hip bone. I guess this colon surgery is done differently every where, huh? Anyway, this is a great website. My friends and family are totally sick of hearing about my issues. I don't blame them, but I feel so alone. Nobody else I know has all this...until I got on this site. Thanks for being there. I do hope things get better. I gotta get my life back no matter what it takes. I need to eventually go back to my job as a reading teacher. I love it. Just one question, with colonic inertia, is it that people have the urge to go and stool is soft and ready to come out and it just can't be expelled? Or is it that there is no urge, stool hasn't moved to the rectum, and then doesn't come out because it isn't travelling? I think I'm confused about what colonic inertia is.
Sincerely, esoR
Posted 1/15/2007 2:46 PM (GMT 0)
Hi gogently, when is your surgery? I couldn't find it out. I have had the fibro since 1980. Flexaril is just the same kind of muscle relaxer. I hope your day goes well. I am going to make it a good one no matter what I feel like today. I do not know if I am still losing weight but hope that I am. I am using the scale at my parents which is digital. I cannot have one at my home because I would be on it constantly! Oh, I also am recovering from bulimarexia. That started when I was 12 until 36. I was in therapy for years for it and now am symtom free. I know I would have died from all the laxatives, purging and water pills. I am so appreciative of all the professional help I have had over the years. Well, time for the coffee!! See ya, enpointe
Posted 1/15/2007 8:06 PM (GMT 0)
esoR,

Here is some info on colonic inertia and pelvic floor dysfunction. It is actually both of the things you described, not traveling and having a hard time being expelled. Hope this helps, gogently

Colonic inertia: Colonic inertia is a condition in which the nerves and/or muscles of the colon do not work normally. As a result, the contents of the colon are not propelled through the colon normally. The cause of colonic inertia is unclear. In some cases, the muscles or nerves of the colon are diseased. Colonic inertia can also be the result of the chronic use of stimulant laxatives. In most cases, however, there is no clear cause.

Pelvic floor dysfunction: Pelvic floor dysfunction (also known as outlet obstruction or outlet delay) refers to a condition in which the muscles of the lower pelvis that surround the rectum (the pelvic floor muscles) do not work normally. These muscles are critical for defecation (bowel movement). It is not known why these muscles fail to work properly in some people, but they can make the passage of stools difficult even when everything else is normal.

This is a pretty good site for info

http://www.medicinenet.com/constipation/page2.htm

Posted 1/15/2007 8:12 PM (GMT 0)
Hi enpointe,
My surgery is next Monday the 22nd. I have my pre-op this afternoon. I read up on the Zanaflex and it may be something that I might want to try. I just don't want to be on the vicodin again after surgery. I will talk to my rheumy about it and see if we can make the switch. I'll write later after I get back, okay?
gogently
Posted 1/16/2007 1:19 AM (GMT 0)
Gogently,
Thanks for the info on colonic inertia and pelvic floor dysfunction. Became laxative dependent only 5 months ago when original surgeon didn't address the post-op stricture. Dumped in 15 gallons of Colyte throughout August to keep from obstructing. Been magnesium dependent since then. Stricture stretch dr. at the bigger hospital did well with the stricture but didn't have pelvic floor knowledge. If I go off laxatives now, I still go just have a heck of a time getting it out. Have to put my knees up by my ears. Or swish out with an enema. I fell through the cracks in medical world. Current pelvic floor surgeon needs tests scheduled for 6 weeks from now. I don't think I have that much time left. Went this a.m. but now unable to pass gas. I'm scared. Mom, 87, just had to go to a nursing home, world falling in on me. Out on disability from work since July's botched surgery. Thanks so much for responding to me. I want to believe I'll get the medical attn. I need and come out of this. I need to call Mass. General in the morning; and ask for admission. They don't seem to be keen on admitting me. esoR
Posted 1/17/2007 3:26 AM (GMT 0)

Well here I am the night before surgery and I have to admit a little nervous. Everyone on this site has been very informative and supportive. I have looked forward to the information and experiences each one of you have offered over the past months. It is the sharing of information that led me to finally have this surgery and now I am just looking forward to the end results.  I hope to be able to post soon to share my experience so that others will benefit as I have.

Gogently, My prayers will be with you on the 22nd.

Tracy

Posted 1/17/2007 6:01 AM (GMT 0)

Hi Tracy, Thank you for your prayers. I'm looking forward to talking with you in a couple of weeks. I'm hoping the best possible outcome for all of us...to get our lives back! You're in my prayers also. Take good care of yourself.

gogently

Posted 1/17/2007 3:59 PM (GMT 0)
Hi Gogently, I guess today is savanreds surgery day. I am having a nice morning and am going to see my therapist shortly. I wanted to say hi and that I have been thinking of you and am hoping that you are doing well. I know how it is day by day without the surgery and I know it is very hard days. I see my surgeon tomorrow and am wondering if I can get off of the 3x day of Boost. If not, I need to make a recipe with the help of a nutritionist because $10.00 a day is too much for me to spend on this stuff. I know there is ensure and do not even want to try it because all I have been told over the years when I worked in a nursing home is that it tastes terrible. I need to go shower,etc.to get ready for my appt. Hope your day is good. See ya, enpointe
Posted 1/17/2007 5:14 PM (GMT 0)
How to access recent posts?

Hi From esoR new to site;

I get notifications by email as to when I get a reply post, then I click on the link and sometimes don't find the reply post. I definitely want to reply back as I appreciate you all so much. Do I just scroll through the most recent pages of posts? Thanks, esoR
Posted 1/17/2007 6:18 PM (GMT 0)
This thread has reached 200 replies... please start a part 13.

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