total colectomy

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Lola x
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/13/2011 4:24 AM (GMT -6)   
Hi im a 30 yr old  mum to 3 children and wife.  i have suffered with slow transit since i was approx 6 yrs old.  i had surgery last october to correct a rectoceal which went horribly wrong and i ended up having a colostomy bag.  Even though i have a colostomy bag i still suffer with chronic constipation (as surgery for the colostomy was as a result of problems with my rectum no surgery was performed on my bowel itself).  I have been taken a number of tablets etc for constipation but nothing seems to work.  At the moment i have to go and see my stoma nurse approx once a week for her to insert a catheter into my stoma and flush my colon with an enema.  This is the only way i can have some sort of release.
 
I am due to have a total colectomy in 4 weeks and i am absolutely terrified but at the same time i know i can not live like this any longer.  Its not fair to my children or my husband to see me in pain and it certainly isnt fair on me. 
 
If anyone has any information as to how long it will take me to recover from surgery i wold be very grateful.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/13/2011 9:49 AM (GMT -6)   
I'm so sorry to hear this. I am somewhat similar. I had severe diverticulosis, I had diverticula throughout, unheard of for a 32 year old. I was in remission for 3 years until more infections occurred. By the time I had surgery I had 6 infections affecting my ascending (5 infections) and descending (1) colon. Couldn't do surgery at that time, was my fathers caregiver and he was dying. Before surgery, my colorectal surgeon scoped me to see for himself. He said ascending was narrow and horrible shape, but my descending wasn't bad even though the 1 infection. He said it was my call, to do a resection or colectomy. I suffered with chronic constipation since adolescence. I knew my only chance to have a pain-free life was not to have a colon, so a colectomy. My surgeon said that in the 23 years of performing surgeries, he never removed an entire colon due to diverticulosis...at any age, anybody. Post surgery, the anastamosis disconnected, so a temp ileostomy was performed. Now I have a new dilemna. It is stated that maybe, even though you have your colon removed, you can still be constipated on your small. I've had my ileostomy for 13 months now and I have no pain or discomfort, contemplating keeping the ostomy. Definitely your colon isn't function properly, so a colectomy will give you a life back. If your having ileorectal anastamosis performed, it can take time because of ileus, so try your best and walk as much as possible. You've already had a resection, so it might be similar in the recovery time. Do your best, talk with your doctors, leave no stone unturned. I'm a single parent of 2 small children, no parents and limited support, and my ordeal left me so distraught because it is so not fair for me and for my children to have endured this hell along side me. But I have to do my best, to stay positive, and to gain as much knowledge so I can better help and protect myself. I wish you the same and if you have any questions, feel free to ask!!!!!!

Lola x
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/13/2011 3:31 PM (GMT -6)   
After reading your story I realise just how lucky I am to have my husband and family to support me through my ordeal.  I have tried everything in order to avoid a colectomy but it really is out of my hands now.  I can not go on like this as I am unable to leave the house or even have the energy to get dressed some days.  I really cant imagine how you must cope.  Iv spoke to my surgeon and stoma nurse regarding recovery time and they said to expect to feel better after approximately 6 - 8 weeks which i know is goin to be difficult but i know once i have recovered my quality of life will be so much better turn .
 
I wish you all the best of luck x

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/13/2011 4:24 PM (GMT -6)   
Having a husband and support is in of itself, such a blessing. My surgery didn't go well, so can't comment on normal recovery time. My anastomosis disconnected , the sub surgeon (mine went on vacation) didn't watch or listen to me. 4 days later I was in ICU and surgery was performed. Ileostomy, over a gallon of waste had to be cleaned-organs separated and washed, the waste was so toxic it caused a dangerous blood clot by my liver, not to mention sepsis & pneumomia. The few days later, incision bleed and had to be left open. I was so weak, and without family and an advocate, I had no one on my side to complain. I came home alone, with all these problems, still a high WBC and platelets, almost 40lbs lighter, scared, they wanted me in a nursing home. But after being hospitalized 6 weeks, wanted my home. 8 days later I got my kids back from my ex motherinlaw, drove, walked alot, did my own wound care, 6 weeks later incision closed, joined gym following month, 4 months later started competing in cycling tours & marathons. Im SOOOO happy to have my colon gone, I have never felt this fantastic. I am so happy to be alive, pain free, enjoying every moment with my kids. That is why I'm pessimistic about going back in for reversal, I don't want to ruin my quality of life, but I just might try. What could be more worse than what I already went through...as you!! See surgeon next week as to my pessimism, I have to make a decision.

You will be fine, recovery might be around a month or so. You will immediately feel better with colon removed. Walk everyday, don't lift, give chores to the kids, take it day by day and it will all be over soon. God Bless you!!! :-) Keep me posted, email me anytime.

((((Christine))))

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/13/2011 8:00 PM (GMT -6)   
Lola,

Didn't they test your colon transit time before they did the rectocele surgery to see that your colon didn't funtion?

You will be much better with an ileostomy using your small bowel.

I ended up with a permanent ileostomy due to some rectocele and associated pelvic "repairs" gone horribly wrong; a wrong dx, wrong surgery done wrong, no follow up to complications, almost left to die as nobody wanted to deal with scarred small intestine and scarred closed colon, rectum.

BUT luckily after a 13 month, 7 hospital, and 11 surgeon search I found someone to take the scar tissue off my small intestine and do a permanent ileostomy. SO far so good. Been 4 years. I wish you well. I could have had a colostomy because my colon worked fine, but due to the small bowel obstructions from the adhesions my ileo doc thought the ileo was best and so did I.

Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/14/2011 10:20 AM (GMT -6)   
hi Lola,

i had a total colectomy for colonic inertia (slow transit constipation) on Aug 2009. they removed all of my colon and attatched my small intestine to the rectum. no doubt this is a big surgery and you should be prepared. if all goes well, it's usually about 7 days at the hospital and 6 weeks recovery. no lifting above 10 lbs for 3 months.

possible complication is an ileus. it's a complication in which the whole digestive system gets into a trauma from the surgery and gets paralized. it can't digest anything. an ileus usually lasts about 5 days and during that time you can't eat or drink anything and must stay on ivs. in this condition an NG tube is also needed in order to drain stomach bile to avoid vomiting. but as i said, it is only temporary for few days after surgery till the digestive systme wakes up. and not everybody gets an ileus. in order to help your system wake up, it is very recommended to walk as much as you can as soon as possible after surgery, even day/next day of surgery. bring your sleepers for that.

when the ileuss is gone (and hopefully, it won't even happen in the first place for you), they should start you on clear liquids only, and if that passes ok, then on a soft low residue diet. when you start eating, take it very slow! small amounts at a time and chew your food thoroughly. drs usually say that 2 weeks after surgery you can eat whatever you want, but my advice, from other's experience and my own too, keep the low residue diet for at least the first 3 months, 6 months is even better. and when you try something new, try one food at a time and small amount. if it goes through ok, try a bigger amount. if it doesn't, leave it and try it about 2 months later.

again, this surgery is no walk in the park and you should give your body the time it needs to heal and recover. walk and rest.

if you have any further questions, feel free to ask, i'd be happy to assist as much as i can. best of luck to you!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Lola x
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/14/2011 1:06 PM (GMT -6)   
Thank you all for your comments and advice.  Before i had my rectoceal repair i knew i had a slow transit but i opted for the rectal repair as i couldnt accept that i would need a bag ( which now i know isnt anything like i expected).  2 weeks after surgery i started bleeding from my rectum and my gp wouldnt listen to what i was saying and kept saying i was experiencing a period nono hmmm i think us women know the difference.  a few days later i started passing stools from my vagina but i was too embarassed to say anything to anyone and prayed it would stop.  Within a further few days my temp was so high and i felt really ill that i eventually told my mum who rang for an ambulance.  I was taken into theatre and was told that an abcess had ruptured and caused an anal/vaginal fistula..  I had no option at that time but to have a colostomy as i was septic and very ill.  it took a further 3 operations for my surgeon to correct the damage done to my rectum but all is well there now turn .  my transit is so slow at the moment that i darent eat too much as i bloat so easilyand feel so sicky, but at the same time i know that not eating is goin to slow it down aswell.  My surgeon has tried me on a combination of medication to relieve the constipation to avoid surgery but nothing works so a total colectomy is now my only chance of a normal life.
 
I will remember all ur advice and make sure i get up and walk around as soon as i am able to after surgery.
 
thank u all so much xxx

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/14/2011 3:06 PM (GMT -6)   
oh my gosh.. recto-vaginal fistulas are bad.. how aweful for you. i'm so glad it's repaired now. good luck with your surgery! are they going to try connect your small intestine to rectum? or are you going to have an ileostomy?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Lola x
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/15/2011 4:00 AM (GMT -6)   
hopefully if everything goes to plan they will connect the small bowel to my rectum but after what has happened with the previous operations it is goin to be hard to tell if there is any nurve damage until after surgery.  if there are any problems then i will have to have an ileostomy but im really not worried about that now as experiencing life with the colostomy has taught me that it really does improve your life :-)   xx

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/15/2011 5:59 AM (GMT -6)   
i hope it works out, but you're right, i have had my ileostomy since July 2010 and it's really not so bad, just the opposite, i feel best i've felt in 17 years of severe chronic constipation. this is heaven for me compared to how i was before my surgeries :):) keep us posted.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/15/2011 8:55 AM (GMT -6)   
Same for me. I thought the ileostomy was a death sentence and the only way to move forward was reversing it. Since this past year, I haven't felt this good since, well, never. Maybe, also because I'm alive and this helps mentally because I do too feel like I'm in heaven...normal. Sounds ironic but it's my life and my feelings. I hope it works out for you, know your not alone!!!!!
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