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Total Colectomy... Part 12

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Posted 12/11/2006 6:29 PM (GMT 0)
Hi MWABIT,

Just read your note and will give you my experience.  There was neither weight gain nor loss noted with my lapascopic surgery.  The surgeon said there wouldn't be and there wasn't.  I had had multiple previous abdominal surgeries and even though the surgeon found a great deal of adhesions, he perservered and was able to do it lapascopically.  Surgeons will tell you that they will attempt to do lap but there is always the remote possibility of having to open you up.  My surgeon had only a 2% incidence of patients having to have a temporary bag...He emphasized if that was the case it would be temporary and not permanent.  I am sure you have read posts of people who go only 2X a day.  Unfortunately, I am one of those people who after surgery was going around 20X a day.  Imodium is used for control, however, this did not agree with me.  I was advised to take metamucil capsules which did slow things down but made it harder for me to go.  What I did was let nature take it's course and now I go about 8X a day, I have no pain or abdominal discomfort and my belly is nice and soft and mushy not like it was before a hard buldge.  I had no complications.  Would I do it again?  You bet I would....

Any other questions I will be happy to answer...

Phyllis

 

Posted 12/11/2006 10:32 PM (GMT 0)
Hello Mwabit! Welcome!

I had a total colectomy with ilieo-rectal anastemosis on 9-13 and am still healing, but I escaped without the ostomy. My doc gave me a 30-40% chance of needing one when I went into surgery, but my ilieum was good looking enough to not need a temporary bag. Considering all of the possibilities of what could possibly go wrong during surgery gives me the creepys, but sufficet to say there are a few things that could happen, but sometimes the need for the bag is just temporary.

As for the laproscopic (keyhole) procedure versus the long incision, it is really up to the surgeon. I had had my gallbladder removed previously and he decided to do the long incision just based on that. If you read the studies, alot of surgeons still prefer the bigger visual field to inspect when doing a surgery like this even though the keyhole heals faster.... It is something to discuss when you meet your colo/rec specialist.

The diarrhea is different for all of us, mostly depending on diet and what caused our need for a colectomy in the first place. If it is terrible, there are methods of reducing it some, but since your stools will be so watery forever afterwards, all BMs resemble diarrhea... lol Mine isn't so bad. I go about 6 times a day which is like heaven compared to once a month or less sometimes.

Merry Christmas!
Posted 12/12/2006 12:51 AM (GMT 0)
Sunshine Mom,

I have to agree that "depends" will probably be the answer once I return to work. I work in a nursing/rehab facility where everyone is very active. I fear that I may not always be close to a restroom. I hope that in the long term my body will adjust. Does anyone know how long that may be?  Thanks for the input.

Tracy

Posted 12/13/2006 1:34 AM (GMT 0)
Hi Everyone,
Vandgsmom - I am feeling much better now. Four days this time. Thank you for asking. I hope everything is going good with you. Skin Tags is exactly why the bio nurse said No Toilet Paper.

I have a question to ask those of you have had this surgery already. Everybody states they have a BM anywhere from 2 to 20+ a day. Are they sufficient BMs or just a tiny drop? Or does the amount of stool you pass depend on how much you eat?

I called the surgery scheduler today to try and see when I will be scheduled. The surgeon said either January or February, but she said he will be out of the office until the end of January. She also said there are a few people ahead of me so it looks like sometime in March 2007 for me. I have to fill out that Jury Summons and let them know I am available to call the Jury Line but that I will be getting scheduled for major surgery sometime in late February or March. The scheduler said if they need a medical excuse they would provide me with one. Then who know I may not be needed to serve. I wasn't last time.
Posted 12/13/2006 2:35 AM (GMT 0)
Hey Resa!

As far as the BMs go, I know that I go right after I eat, but I think it is more along the lines of that as soon as I eat I am not passing the food that I just ate, but actually I am passing the last thing before this meal.

And you are right, It really seems to depend on how much I ate, but even more on how much I drank since most of your liquids will be passing out that way now. The liquid volume of it is greatly increased....

Sorry about the scheduling... Maybe you can ask to be put on the cancellation list?
Posted 12/14/2006 1:08 AM (GMT 0)
Hi all,

   well i am out of hospital and everything went to plan, the surgery was bigger then expected as my colon was up around my splene, it was a far bigger experience than i could have imagined though, so i found the recovery a bit of a shock. I am home now and well on the road to recovery thank goodness ( no place like home), i prooberly go 10x a day at the moment which is alot better then what i was doing the first week post op, still in a bit of pain but as long as i take it easy all should be ok, i was in hospital a total of 10nights which is normal, well i hope everyone is doing good and thamkyou all for your help so far its been great, if i can help anyone now i have been there and done it thats fine talk to you all soon

 

Holly

Posted 12/14/2006 1:15 AM (GMT 0)
Yay, Holly!!

So happy for you, and I hope you take it easy and recover fast!

L
Posted 12/15/2006 12:43 AM (GMT 0)
Hi Holly,
Good to hear your surgery went well and that you are home and doing well.

Hope everyone else is doing fine also.
Posted 12/19/2006 2:17 PM (GMT 0)

Hi Holly

Glad to hear everything is going well....

I started to eat Chesapeake soy crisps ....only new food introduced lately...and all of a sudden BM is formed...coincidence or the result of snack I don't know...has anyone else had this experience?  What an excuse for eating junk food...

Take care and happy holidays

Phyllis

Posted 12/19/2006 9:06 PM (GMT 0)

Hi everyone,

My colectomy was on the 14th and I'm already home!! The surgery went so smooth, I couldn't believe it.  The only complication I had was my potassium level was very low going in to the surgery and could not be brought up while I was in the hospital.  They gave me 12 bags of potassium, the strange thing was it kept dropping and I wasn't losing any.  I haven't had hardly any BMs and no vomitting at all since the surgery where was it going??? I started at 2.8 and at one point it was 2.4 and even after 12 bags it was only 3.0 when I left the hospital.  Anyway.... I have retained all of the fluid in my tummy and thighs, I literally have doubled in size there..and that's causing more discomfort than my actual incision. Anyone have any thoughts???  I'm trying to be optimistic, but in all the experiences that have been shared in the forum I haven't heard anyone say they came home NOT having BMs.  I'm a little concerned that the 6" he left might be causing problems in there already. 

If anyone has any thoughts I would love to hear them.

Thanks

KLH

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Posted 12/19/2006 10:22 PM (GMT 0)

Hi KLH

Glad to hear it went well.  I was told BM's start anywhere from 5-9 days post op.

Are you eating solid food?

Posted 12/19/2006 11:24 PM (GMT 0)

Hi Phyllis,

soft solid, but very small amounts.  Is that bad?

KLH

Posted 12/19/2006 11:28 PM (GMT 0)
No, that's good...you have to go very easy in the beginning

Posted 12/19/2006 11:42 PM (GMT 0)
oh good...okay maybe this is just the calm before the storm. All the fluid is making me a little concerned. I go to the doctor on Friday to have the staples removed hopefully things will begin moving through by then.
How are you feeling?
Posted 12/19/2006 11:51 PM (GMT 0)
I feel good..surgery in June...I was going 20X/day and now down to about 8.  Just letting my body take its time as far as adjusting to no colon.  I can eat anything...but spicy in burning out but sometimes it is just worth it...

Posted 12/20/2006 1:31 AM (GMT 0)
Sorry it took me so long my girls came in.
That's great you're feeling good. Was it hard adjusting? How did you handle going 20x a day? Were you weak? Were you able to eat enough to keep up?Gosh that seems like it would be tough on you physically? Did yours start right away or in that 5-9 day post op time frame? Everyone's stories in the forum have been so amazing, I tried to take bits and pieces with me when I went in.... but my experience caught me off guard. It sounds so crazy, but after everything I was actually looking forward to that 10-20 times a day. Anyway Thanks for talking with me, God Bless you.
Happy Holidays!
KLH
Posted 12/20/2006 2:14 AM (GMT 0)

Hi KLH,

I worked in a hospital and had the opportunity to speak to the various surgeons there and although I had no options, I also asked them what to expect and they all assured me that over time my small bowel would compensate.  Then I waited approx a year prior to surgery so that I arranged that I would be retired.  I also tried to get myself in better shape prior to surgery ie stop smoking.  I decided to go to Cleveland Clinic and was very comfortable going there for procedure which gave me piece of mind...I did start BM's on the sixth day.  The only difficulty was the trip back to New York we had to make several batyhroom stops but then I wised up and did not eat much which slowed the BMs for the trip.  Believe me, I don't care how many times I go a day just greatful that I am going with meds and enemas.  Slow but sure is the way to go with this.  Let your body dictate the speed.  Ask your doctor lots of questions about diet but usually they say eat and if it upsets you don't eat it again for awhile.  If you get the butt burn you can use OT  calmaseptine...If you go a lot, ask the doctor if you can use metamucil capsules...that will help regulate you.  Wait and see how you feel in a couple of weeks when you can press you belly and it is soft and pliable as opposed to being bloated and stiff.  I know that people feel this is radical surgery but unless you have walked in our shoes...thank goodness for the surgery..

Take care and happy holidays

Posted 12/20/2006 2:43 AM (GMT 0)
I'm so not feeling the thank goodness for the surgery yet, I'm a little scared that something's not right at the moment. When I hear all the incredible stories, I know it is everything I was hoping for...but I'm not feeling it yet. I know your right I have to be patient, and I feel the same way about how many times a day it happens as long as it is without all the miserable tactics to make it happen.
Bless your heart, that was quite a distance to travel. That's funny how quick you learned the trick to modify the bathroom stops.
Thanks for the tips..I'm looking forward to using them (lol)
KLH
Posted 12/20/2006 12:44 PM (GMT 0)

Hi KLH,

I was thinking about you not going yet and that is if you are on pain meds this can slow things down.  If you are still concerned today, please call your surgeon and let him know even though you will see him friday.

Posted 12/21/2006 1:01 AM (GMT 0)
Hey Phyllis,
That makes sense, I'll try taking less tomorrow and see if that helps.
KLH
Posted 12/21/2006 2:33 AM (GMT 0)

  Just want to thank all of you for the wealth of information.  I am to have a total colectomy but am slow to schedule it.  I just spent a week in the hospital with Ascending Cholangitis wich is an infection in the bile ducts.  I got it after I had an outpatient ERCP w/ sphincterotomy.  I have had 3 abdominal surgeries before and I have NEVER experienced such pain in my life.  I went in Wednesday went home thursday only to have intense pain within the hour and had to be taken by ambulance.  I got to stay until Sunday and even though the pain is gone my energy is sapped.  I do not think that I have it in me to have the total coloectomy yet my sister is wanting me to schedule it and just be done with it but I truly just dont feel I have it in me.

Anybody ever have Ascending Cholangitis before?  I had never heard of it before and I hope i never do again tongue

Posted 12/21/2006 11:52 AM (GMT 0)
Hi all,

           Mwabit i can answer from what has just happened to me but as you can read in here everyone is so different, i had my sergery on the 28th Nov and i have lost 5 kilos don't know what that is in pounds though i know you guys in the US use pounds us Aussies use kilos lol, and as far as controlling myself going to the loo i was scared stiff as i woke up one morning in the hospital and could not keep control, after that one i was a bit more aware but still had to get there as fast as possible, now though i have no problem at all it is well under controll and i go 1-3 times per day, i hope this helps......

     I hope everyone is doing fine i am healing well started driving agian today and doing alot more, MERRY CHRISTMAS everyone and a happy new year to all and here is looking forward to a better 2007 for everyone post and pre op cause we can all only feel better from now on.

    HOLLY

Posted 12/23/2006 12:33 AM (GMT 0)

Hi KLH

How did you make out at the surgeon today?

Holly,  things get better as time goes on....

Happy holidays everyone

Posted 1/1/2007 12:48 AM (GMT 0)

Hi everyone,

Sorry I haven't written but I'm still trying to digest all that has happened in the past 6 weeks. As you remember in November I did my trip to Portland for a second opinion. Well I kind of got a double slam. The doc there thinks I might have MS. She said regardless I will need to get a total colectomy because my transit time is nil. I thought I had fibromyalgia and have thought that for the past five years. But fibro doesn't stop your colon from working although it will cause IBS-C. And after doing some research there is a definite link between MS and colonic inertia. So I am not a happy camper. My new surgery date is Jan 22 for my total colectomy with pre-op on the 15th. I am going to let my home town doc do the surgery because the doc in Portland highly recommended him! The doc in Portland was the one who had worked at the Cleveland Clinic. She was very kind and said I could call her with any questions and she would help me get through all this. She recommended that after my surgery and I'm feeling better, to get some tests done for MS. I am so frustrated. And I'm sick of going to the docs and 'trying' to prove to them I don't feel well. It is so hard when they look at you and say 'well you don't look sick'. I had thought that this 'raw' nerve sensation I always have was from being so constipated all the time. It is how you feel after burning yourself on the stove or having a bad sunburn, only it never goes away. I am sorry to be such a downer on New Year's Eve. I was hoping and praying that this New Year would be a new beginning for me and I would be able to stay out of the doctor's offices after my surgery. I know I need to change my outlook but I'm terrified about having my abdomen opened again. I was not a 'good' hospital patient the last time and it took forever for my wound to heal (another sign of MS). I kept at my GP and told him that my wound healing time was way too slow and his reply was 'well we just did blood tests and you're not diabetic'. Does anyone else out there with colonic inertia have a really slow healing time and form keloids? 

I hope everyone is doing well and wish everyone a blessed and wonderful New Year filled with health and happiness.

gogently

Posted 1/1/2007 1:37 AM (GMT 0)
Hi gogently,

we are just the opposite, I have MS and am just starting the process to find out about my slow gut and constipation (from the ms).  I posted about the possiility of having my colon removed.  Feel free to post on the ms forum if you need anything.  I am really scard about all this bowel stuff and do't know where I'll end up getting tests etc...

 

Take care. :-)

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