Total Proctocolectomy

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busyfoot98
Hi,

I am having a "Total Proctocolectomy" in the near future (removal of large colon, small colon beyond the permanent ileostomy, 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
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tippitop
Hi Bigfoot,

There are many of us on this site who have needed 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 too 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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tippitop

Sorry Busyfoot, I'm sure your feet are perfectly proportioned!!

Tippitop

chorse
Busyfoot,

I had an end colostomy with removal of the anus due to rectal cancer in February 2009. I was in the hospital for six days and out from work for eight weeks. I'm kinda weird in that I take very little pain medication. I have had no problems (knock on wood) from that surgery. After chemotherapy, I had a perineal urethrostomy due to damaged urethra from an older disease. Kind of rare, only the second such surgery in seven years in Richmond, VA. I gladly offer any support I can provide. r/ron
busyfoot98
Thanks Tippitop for sharing.

I already have a reversable ileostomy (7 years now) due to issues for years with incontinence. I tried another surgery prior to the temporary (reversable) ileo, which involved using a pacemaker in the abdominal cavity with leads into a grissils muscle which 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 choose 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 lenght) 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 jell like substance (which I understand is normal) but also with stool leakage, pain and pressure. I would like to know if this clear jell 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 of other people's experiences with this surgery. The doctor has warned me that becuase 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 weeks stay in 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
 
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busyfoot98
Thanks Chorse for your response and support.

I have had many surgeries since the mid-90s to do with my problems of a sluggish bowel, 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 paycheck 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.
lottagelady

Hi Busyfoot.... I too have a malfunctioning loop ileostomy, so you are not alone. I find that feces 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. I just went to the doctor myself as the cramps were becoming more painful and it is all leaking from every damned orifice I've got. I will be having surgery to one of these (fistula) in September, so hopefully that will cease, though I'm not holding my breath as it will be my 9th repair. Then, at some point, a hernia repair, a relocation of the 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 I'm really looking forward to all that - NOT!

Hope your surgery goes as planned and you have a good recovery.
Rach xx
lexus1

Yep yep, I have had the same surgery; Ileostomy, removal of colons and rectum...due to Crohn's. 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 doesn't 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

swiffer

I had it all taken out except the small intestine. Like others, the cure has been 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 polyps that could have turned into cancer (a 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 scars 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. Don't be worried, just careful. 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 panicked 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.

swiffer

I forgot to say that after the hospital, I took painkillers for about a week. But since then, I have not had to take anything more than an aspirin, and that's only if I have a headache. Good luck, you will be fine.

Faith4Today

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

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