TOTAL COLECTOMY PART 18

    Well, first I would get another surgeon.  It is like we want the small intestine obstruction to happen!!!!!!!!!!!!!  I have had several of those and they hurt like all get out.  That is why I left a gastrologist (probably misspelled) after a year and a half.  He just kept giving me expensive medicines that didn't work.  I have been with my present one since January.  I have a sitz (is that how you spell it?) test tomorrow and then the surgery will be scheduled.  I have to say that I am not looking forward to it. But I will survive it with people like all of you.  I have a couple of questions that maybe some of you can answer.  First of all, with a TC, do organs shift?  Also, what is a "small" meal considered?  Gosh, I love to eat, but it looks like I am gonna really have to cut down.  I am very concerned about having "accidents".  Will I have some kind of control?  After recovery, which from the posts can be anywhere from 6 months to a year, will I be able to swim and hike and other normal things?  I am full of questions right now and there is no better place to go than those who know and will speak the truth.  Thank you all.  stormy

Hey all-

So I guess a lot of us are goin through some trying times. The last few days have been better for me, but I did have to ake Miralax a couple of times. I go back to the surgeon tomorrow and I will see what he thinks. I am still going , just not as much as before and its a lot harder to go. I am still much better than before surgery so I do not want to complain too much.....just frustrating.

MOM- I do agree somewhat with your surgeon that if you are not eating you may be pooping less,not that that is the whole problem, but I was told the same thing and the more I ate and drank the more I cleared out. I hope that you have some relief from today and I hope tings start picking up for you. I am sorry about your experience with your surgeon on call doc. They can be such ass*&(^!!! I have had one too many experiences with surgeons as a nurse.

Janie- I am ten weeks post-op and I have been gone for the weekend twice. The first time I even still had my drains. A small meal for me is a serving of pretzels, milk, and 4 oz turkey. It really depends on the person as to what you will be comfortable with eating. I went back to work this week and worked a 13 hour shift as a nurse on my feet all day. I feel about 85% and I really feel like I can do whatever I want. The surgery has been a blessing. I could never go back to all those laxatives....I was scared to, but you need some of your life back too. Recovery was a ***** (excuse my language) but I also had a lot of complications.

Stormy- Welcome......good luck with your sitz marker test, oh man was that uncomfortable. Hope they get everything figured out for you. I had one accident in the hospital and that was all. I feel the urge and have plenty of time to get to the bathroom. I did feel like my organs shifted some....but I wore an abdominal binder and it has helped a lot. Its been 10 weeks for me and I eel like I could hike today if I wanted...I would be tired, but I could do it.

April/Irish- Hang in there guys, my heart goes out to you both. I hope everything gets figured out.

As far as a "small" meal - personally after surgery I didn't have much of an appetite and I'm a big eater, and like you, I love to eat.  They just want you to eat things that are easy on your system.  For weeks I lived on instant mashed potatoes, soups, broth, jello, pudding, bread, crackers and avoided red meat, dairy, raw veggies - those type of things.

I also wondered about "accidents" and for me I was VERY fortunate and didn't have any, however, I knew that it wouldn't be long after eating that I would need to be near a toilet.  As for being active, in the beginning you will be weak and your body will let you know if you overdo it.  For me personally it just took time, a little bit every day, to regain my strength.  Like I said above, we are all different and any time frame is individual, HOWEVER, the best thing to keep in mind is that ALL of this all temporary.  Over time you will eat as you did prior to surgery, you will and can be fully active, and "control" time will be longer and longer over time.  I hope this helps.

JANIE - You're very, very welcome and I'm happy I could help.  I think that I've addressed some of your questions regarding timing and lifestyle above in my response to STORMY.  Just remember we're all different and some heal and regain sooner rather than a little later, if that makes any sense.  I'm so totally anal when it comes to public restrooms and pooping.  I would do just about anything to avoid them.  In the beginning if I went out to eat I made sure I was home within a half hour after eating - that's just me.  Now I can go out to eat and do anything I want and have plenty, plenty of time and don't worry anymore.  It really is all about how and when your body gets accustomed to its new way of transit (small intestine and not the colon). 

I can so relate to living life around laxative use and pooping.  It was awful to say the least.  I could literally take 16/24 laxatives a day and it could be days or even a week, if I was lucky enough, before I had any results, but the fear of not knowing when it would kick in and my fear a public restrooms, or any restroom for that matter, had be chained to my home. 

I also know your fear.  You wouldn't be human if you didn't have fear.  Yes, this is a huge surgery and there is nothing easy about it, however, gaining or regaining your life in a matter of months is the blessing behind it all.  Hopefully you'll be one of the lucky ones and be up and back on your feel in no time, like after your double mastectomy.  You're a survivor and that's awesome!!!!  You've already faced the "huge" and I know you will overcome this chapter in your life.  I'm so sorry for the loss of your precious dachshund by the way.  Well, I hope I was able to answer your questions and hope it helps.

XTREME - Glad to hear you've had a good few days.  Keep us posted on your visit with the surgeon.

MOM - I'm SO happy to hear that things are moving for you now and you're not in the pain you were in just a week ago.  Things will get better as each day passes!!!  There is light at the end of the tunnel.  Eventually you won't have to live life around pooping!!!

So I just got back from the surgeon, he wants me to watch my BM's for the next couple months unless something gets worse. I told him I have had to do some rectal stimulation and this he said my be from a develpoing retrocele (which I did not have before surgery) but just to hold tight for now and use Miralax if needed. I lost another 4 pounds and he said my abdomen looks great. He is still a little concerned that my abscesses could come back so I am watching for those symptoms too.

I guess I will just hold tight for now. Hope you all are having a great day.

Lizzie

I'm still going anywhere from 4-8x a day pending on what I eat.  I keep trying new foods

and sometimes it doen't bother me others times it does.

I'm trying carnation instanst breakfast powder, first I tried it with 1% milk, it went

right through me like water then I tried it with 2% milk, same thing happen so I thought

I would give it one more shot with skim milk. Well it didn't go right through

but by the end of the morning it started to go through me but not water. I'm going to

keep trying it for a couple more days.

I can't remember someone else is taking carnation drink and can not remember who

(Sorry) things have been real crazy.

I can feel for every one who has had a bad exp. with the surgery.  I'm still trying

to recover.  My chiro is trying to help me do ab exercises because my back is

so curved in and he said it is because my abs are very week, of course because

of the surgery. I can't move my ab muscles. I'm so bloaded and fat hanging off

of me. I've been doing some exercises to help, but not getting anywhere.

Any on ideas ????????????

My thoughts are with all of you.

I was wondering that too........... Today is a real bad day, I have spent all day in the bathroom OMG when is it going to stop?

Hope everyone is well.

EXTREME - Sorry to hear you're still having problems NOT going and you're seeking "non-medicine" stuff that helps.  For me personally the following things really helped me.....Mott's apple juice and/or Welsch's grape juice, sugar free chocolate, Sunsweet Cherry Essence Prunes (they taste much better than regular prunes or prune juice).  Another thing that I found helps is Magnesium capsules (nothing but magnesium in them - I could only find these online), and of course stool softeners.  I would alternate between the juices, having a glass in the morning and in the evening.  In between the juices, like a snack, I would eat a few prunes and/or a piece or two of the sugar free chocolate.  These are the non-medicine things that worked for me.  If I needed a boost I also took 500mg of the magnesium, which I think really helped a lot too.  In my opinion you have nothing to lose trying these things - hope this helps.

APRIL - I personally never had the problem of going too much, however, I've read posts from others that their surgeon recommended taking fiber and even anti-diarrhea medication.  I'm not sure what fiber works best, Metimusal (because of the bulk) or something like Benefiber.  I'm also not sure how much of the anti-diarrhea medication works.  Has your surgeon recommended either of these?  Hopefully someone will post who's had this problem and what worked for them.

JANIE - The difference between open and laparoscopic is....open is just that - they open up the abdomen for the surgery.  I've heard they cut you several inches above the navel and down to the pubic area.  Laparoscopic is done by a scope thru the navel with three or four small incisions, about two or three inches in width (these are the ports for the instruments they use to cut and cauterize the colon and remove it).  open also takes a much longer time to heal than laparoscopic.  It's also a surgeon's preference, however, sometimes they don't have a choice and must do the surgery "open" - kind of like gallbadder surgery these days, most can have it done laparoscopic but there are some that can't. 

My surgeon prefers laparoscopic over open due to a shorter recovery time AND he said they're able to see things microscopically that can't be seen by the naked eye.  In most cases the surgery is also shorter, usually three to four hours (of course I had to be a first for my surgeon and take him eight and a half hours to do mine) and recovery time is also shorter.  There are also situations where they start out laparoscopic and end up doing it open.

I also had a huge rectocele which was discovered during the defagram (I wasn't even able to push out any of the barium- NONE).  When I saw my surgeon prior to surgery I asked him if I'd have to have it removed prior to or at the time of surgery.  He explained that the rectocele is due to the constant bearing down trying to have a bm and that once the colectomy is done there isn't a need to bear down and the rectocele heals itself. 

This surgery affects everyones outcome differently, some have more bm's than others and vise versa.  It can take up to a year for our body to get accustomed to its new way of transit (by way of the small intestine vs the bowel).  Usually over time the frequency gets less and less.  For me during the first few months I was going several times a day, six to eight - give or take a few here and there.  Over time I slowed down considerably and now I require the help of MiraLAX in order to go once or twice a day to once or twice every other day.  Do I feel my surgery was a success and did it SAVED my life - YES!!!!  I would do it all over again in a heartbeat!!!!!!  Janie, you're going to have fears and it's not unusual to be scared - we've all been there.  It would be a disservice to you for anyone to sugarcoat anything about this surgery to you.  This is a huge surgery and there is nothing easy to it, however, it's worth regaining or receiving a life that been put on hold.

STORMY - I also questioned Total and Subtotal and asked my surgeon.  My surgeon  referred to mine as a Total even though he left a very small amout of colon (very small).  He said that each surgeon has their own "theory" between the two or it's a fine line between the two.

There are other diseases of the colon, such as Crohn's, where a colectomy is done and usually the "diseased portion" is the only part of the colon that is taken out (subtotal).  Then time goes by and more of the colon ends up diseased requiring another surgery.  I think this is when you hear people wishing they would have had a total.  With Colonic Inertia our entire colon is affected (dead) and this is why I understand them say Total vs Subtotal.  Maybe someone else can shed some light on this issue as well.

MOM -     OMG       !!!!!!!!!!!!!!  This is SWEET MUSIC TO MY EARS!!!!!  Congratulations on FINALLY feeling GREAT - I'm SOOOOO happy for you!!!  I just knew in time that things would iron out and you'd see great results/rewards.

I hope I was able to help someone and may you all have a blessed day!!!!!!            

I have not been here in a while... I hope all is doing well. I had to repeat all of the testing and biofeedback because my test were too old and they wanted to see what was going on now instead of in 2005. I went to see the surgeon on Friday and was scheduled for a sub total colectomy on wed of this week. I will have to get a port because chemo basically destroyed my veins yippie right?! So what I would like to know is some things that have helped you while you were in the hospital after surgery...some people said to bring toilet paper because the hospitals is not great!

Help!

  Thank you for your encouraging words. I have tried those meds and the aloe vera and still nothing. I was never into the sodas more into the juices and to be honest I get horrible bloating and pains from simply drinking water. I just don't know where else to go or what institute would be willing to help me at this point. But thank you!