Total Proctocolectomy Experiences Needed

Hi,



I am having a "Total Proctocoloectomy" in the near future (removal of large colon, small colon beyond the permanent ileotomy, anal canal and rectum).  



Has anyone had this procedure?  If so, can you tell me about your experience.



Thanks and have a great day.



Busyfoot98

Hi Bigfoot



There are many of us on this site who have neede the same surgery. I had this done in 1999, as a result of Crohn's disease. I have no regrets as I was really ill and they told me it was only just in time as I had suffered in silence just a little to long.



All I can say is, I have never ever regretted it. At first there were tricky moments and a fair bit of adjustment but I feel so well now.



What is the reason you need the surgery? Whether cancer or I.B.D. What can we help you with? There are so many questions that can't always be answered by the medics I would be very happy to answer any questions I can and offer any support you may need. As will others on this site, the kindest most caring people you could wish to meet.



Good luck and keep in touch Bigfoot.



Tipptop.

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SORRY busyfoot, am sure your feet are perfectly proportioned!!





Tippitop

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Busyfoot,



I had end colostomy with removal of anus due to rectal cancer Feb 2009. Was in hospital for six days and out from work for eight weeks. I'm kinda wierd in that I take very little pain meds. I have had no problems (knock on wood) from that surgery. After chemotherapy, I had a parineal urethaostomy due to damaged uretha from older disease. Kind of rare only 2nd such surgery in 7 years in Richmond, VA. Gladly offer any support I can provide. r/ron

Thanks, Tippitop, for sharing.

I already have a reversible ileostomy (7 years now) due to issues for years with incontinence. I tried another surgery prior to the temporary (reversible) ileo, which involved using a pacemaker in the abdominal cavity with leads into a gracilis muscle that had been removed from my leg and wrapped around my anal opening. The reasoning and hopes were that I could control the incontinence with this device by using a magnet to turn it off when I had to have a bowel movement and then using the magnet to turn it back on when I wanted to control the incontinence. This worked well except that I also had a sluggish bowel and had many bouts of impacted stool. Eventually, I chose the ileostomy and had the pacemaker and leads removed. The surgeon also nicked my bowel during one of the initial surgeries, and I ended up with an infection, which resulted in all wounds (two in my left upper leg about 6" long each and two in my butt about 4" in length) being opened and packed until they healed from the inside out. I spent 6 weeks in the hospital and another couple of months recovering.

However, right from the beginning with the ileo, I have had issues with leakage of not only the clear gel-like substance (which I understand is normal) but also with stool leakage, pain, and pressure. I would like to know if this clear gel is normal, why don't regular people without my problems (no muscle control in the anal area) experience the leakage. Anyway, after dealing with this issue for several years, I have finally requested that something be done with the leakage, pressure, and pain. And finally, the doctor has agreed to perform the total removal of the large colon, the small colon from the stoma, the anal and rectum.

I am hopeful that it will relieve and terminate all the symptoms and leakage that has been happening.

I was just curious about other people's experiences with this surgery. The doctor has warned me that because everything is being removed, there is a large chance that I will get colon obstructions if the colon to the stoma lowers from the contents inside and may kink. These very seldom require surgery but will require about a week's stay in the hospital.

I have had one blockage and spent a week in the hospital...it wasn't pleasant...but life.

Once again, thanks for sharing.

Busyfoot98

Living with Your Ostomy | Hollister

Thanks Chorse for your response and support.  



I have had many surgeries since the mid 90's to do with my problems of a sluggish bowels, incontinence and virtually no anal muscle control.  If you read my response to TippiTop, you will get a bit of a picture.



I am looking forward to the surgery, but not the time off work....will miss the paycheque and just hope that I can keep my bills under control.  I also hope that this time, there will be no complications like the infection that I experienced.  



Glad to hear all is going well with you.



Once again, thanks for responding.

Hi Busyfoot .... I too have a malfunctioning loop ileostomy so you are not alone - I find that faeces bypasses the stoma hole and goes down through my colon and out through the other end causing pain, especially if it all starts to back up down there ... just been to docs myself as the cramps were becoming more painful and it is all leaking from every damned orifice I've got ... will be having surgery to one of these (fistula) in September so hopefully that will cease, tho' not holding my breath as it will be my 9th repair ...... then at some point a hernia repair, a relocation of stoma and either a permanent stoma or a reversal depending on how the first surgery goes .... apparently without relocating my stoma my hernia repair would be 'doomed to failure', so really looking forward to all that - NOT!

Hope your surgery goes as planned and you have a good recovery,
Rach xx

yep yep, I have had the same surgery; Ileostomy, removal of colons and rectum...due to Crohns. I am so much better now after the adjustment period, healthy as I was when much younger! All I can tell you is to make sure they place the stoma far enough right so your wafer doesnt rest too close to midline scar...I wish mine was just an inch over! that is my only issue since a leak is always started from that area. Good luck to you, and keep in touch. lex

I had it all taken out except the small intestine. Like others the cure has worse than the operation for me after 14 years of steroids and all the other meds {21 pills a day}.No cancer but thousands of pol lips that could have turned into cancer. {big part of my decision}  Best thing i did in a long time. It was six years ago but i was up and walking the floor the next day slowly. I remember the healing time was not as long as the scares would lead you to believe but did take it real easy for a few months. It is a shock to realize that you have a stoma  and that you have to see your own vile every time you empty your bag. No pic or talks with others can give you the feeling you are going to have seeing those things. Ok you asked so i said. Now for the good news .You get used to it fast. You should be able to lead a much better life when you are all healed up. Dont be worried just carefull . Here is a tip : write down all the questions you might want to ask the doctor after the operation while still in the hospital.They seem to be in a hurry afterwards and you may forget some. One for me was that after a few weeks with no bleeding all of a sudden there was blood in my bag. I paniced and called the doctor. I found out that happens and a day later it stopped. Anyway we will be here so let us know how you are.

I forgot to say that after the hospital i took pain killers for about a week but since i have not had to take anything more than a aspirin and thats if i have headache. Good luck you will be fine.

Lady I dropped you a note on the other post, was hoping youwould see it. Bless you, Faith