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Scared to have proctocolectomy

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Posted 12/22/2012 1:54 AM (GMT 0)
I have been recently advised that I should have surgery and I am worried and afraid. I used to post on the Crohn's board but have decided to get advice, opinions and the information on what to expect here on the Ostomy board now.  I have to honestly say that some of it terrifies me.  I am in my sixties, so feel anxious about the surgery and recovery at my age.  And the thing that scares me most as I read posts from people who have been thru it, is the problem with the "butt wound".  I was nauseous with fear last night as I read about it and imagined a gaping hole, possible infection, or just not healing and Lord knows what.  I'm sure there is plenty of pain too. 

I also wonder if this can all be done laparoscopically and how to find the best hospital and surgeon to do the job.

I need all the information I can find but am not sure, at this point, how to find it all. I am very apprehensive and dreading the thought of going thru it all. 

I live in the Seattle area. Thanks for listening. 

Posted 12/22/2012 9:16 AM (GMT 0)
I would suggest a second opinion. That you had three dilitations though sounds like a colectomy would be a smart idea - my GI got me two dilatations and told me he was only doing it to buy me some time. You do need to find the best GI and surgeon that you can, start by looking at university hospitals. It depends on where you are. Post again asking for recommendations in the Seattle area, and people here will post answers.
It can be done laproscopically - you need to find the best surgeon who is skilled in laproscopy.
In the meantime, do not, I repeat, do not read scary stories - they are the exception, not the rule, and the last thing you need to do now is dwell on them and work yourself into a panic. At the same time, you do need to inform yourself about what is coming up, and ask questions here. I got more information, help and support here than from my doctor - regardless of how good they are, they seldom have time to explain details.
When I had my colectomy, I experienced no pain at all. That is because they inserted a spinal just before surgery, not afterwards, so that I woke up already well-doped against pain, had a pain pump for just in case, and the hospital had a very good pain management team. I did not use the pain pump, meaing I was already getting enough, and stayed cosy and comfy for five days until they removed it. That was long enough, I had no pain after that.
People in their sixties recover well, some are here on this forum. Living with and caring for the stoma has a steep learning curve, so allow yourself some patience. There will be a time of finding the right bag system that works for you, and you could call the companies before surgery, they will send you samples. The hospital will also provide a stoma nurse to help you out. At this stage, just take up each issue as it comes, not all at once.
I was also in a terror state before the surgery, but it was unnecessary, so the worst part of it all was this fear before, not the thing itself.
Posted 12/22/2012 5:55 PM (GMT 0)
I had my ileostomy done when I was 66 years ago. I'm 72 now. I have to say that it was not a walk in the park, but I definitely did the right thing. I suffered for many years and brought myself almost to the brink when I finally agreed to the surgery.

My approach to the situation was to network with friends. As it turned out, I had a friend who was an Operating Room Nurse who did a lit of work with colo surgeons. She introduced me to a doctor that she admired and respected. A good move on my part. Recovery was long and slow but the result well worth it. I am enjoying the best health of my life now.

I recently developed a hernia in the groin area and again networked with friends. Same experience. Another Operating Room Nurse that I know helped with referrals. This time I asked that she not be present during the surgery for reasons of vanity. When I was wheeled into the operating room I was greeted with a big "Hi Tom".
Posted 12/23/2012 1:25 AM (GMT 0)
     Hi!  I was 63 when I had my operation, total colectomy with end ileostomy.  I was not a candidate for j-pouch.  At the time of my operation, I was a lot sicker than I thought.  I was prednisone dependent for two years straight (on and off for the twelve years I suffered with ulcerative proctitis), had uncontrollable high blood pressure (on three different BP meds at same time and still had readings of 216/110) and prednisone induced type 2 diabetes.  I asked my surgeon about doing it lapro and he looked at me like I had three heads and said absoutely not...at least not in my case anyway.  Whether he does it lapro on other patients, I have no idea.  He also insisted I pass a stress echocardiogram before he would operate.  In hindsight, I must have been a pretty sick cookie.

     Long story short....it was a long recovery, I did have a few post op blips, like vaginal bleeding (twenty years post menopause),  which required me having a transvaginal ultrasound.  But, thankfully, all tests were negative and I am fine.  Living life to the fullest now at age 66...blood pressure very well controlled with only one pill a day, no diabetes.  I have osteoporosis...thank you prednisone.

     I live in New Jersey and had my operation at Pennsylvania Hospital in Philly by Dr. Robert Fry, head of colorectal surgery at Univ of Pa.

     Do your homework and don't be afraid.  Think positively.  Sure it's scary, that is why I procrastinated for years...but I am soooo happy I went through the surgery.

Posted 12/23/2012 3:48 PM (GMT 0)
Hubby was 64 when he had his done. Like so many he put it off until such time he just could not take the pain and suffering any longer.

He has a permanent ileostomy and had a total proctolectomy. He was fortunate in that his healing and recuperation went very well with no complications.

Definitely do your homework and research as suggested. Get a good ColoRectal surgeon as I feel that is paramount in this regard and also be sure to meet with the WOCN and wear your normal pants/jeans etc. so the stoma placement will be marked properly for you for the surgeon prior to surgery.

It is scary for sure but you do have to focus on the positive as there are more successes with the surgery than not. My husband so wished he made up his mind a few years earlier as he suffered longer than necessary but he wasn't ready then.

Good Luck.
Posted 12/23/2012 5:20 PM (GMT 0)
I want to thank you all for your replies and encouragement.  I am seeing more positive information and feel better already. I know I probably don't have much choice at this point, but if I need the surgery, all of your advice and tips will help me do what I need to do to get thru it all.

Christine, I have seen you on most of the forums I have been on for the past 3 years.  I would love to contact you, if you wouldn't mind.  I really need someone to talk to who is my age and has been thru the surgery and recovery already.  I saw that your email address was listed but didn't want to write unless you give me the OK.

Again, thanks to everyone for your positive feedback.  It is appreciated.

 

Posted 12/24/2012 4:20 AM (GMT 0)
ep49- I have crohns as well and it came to a point that no medicine was working. I tried EVERYTHING! I was losing weight and bleeding and in pain every day. I finally had surgery and felt a whole lot better. No more diseased colon and rectum.
I think you were referring to my "Butt wound" post. There have been a few of us who had some complications with that area healing. In any normal person they say it should take about 6 weeks to heal. I got an infection in the hospital and it opened back up. Ever since then the doctors didn't know why it wasn't healing. Turns out I was low on Iron. This is just a rare complication. Some people go home in a week and some people have to stay in the hospital a little longer.
Also keep in mind that many come on here when they are having problems. They aren't just coming on here saying how much better quality of life they are having since their surgeries.
Once you find the appliance that works best for you I would suggest getting something called "Sure seals". It keeps your wafer dry when you are showering and also helps if you have any leaks.
As far as lapriscopically, yes it is done quite often. I don't know if this will help you but my surgeon is in Chicago and did an amazing job with the surgery. I have 4 very small marks and a perfect stoma (I did gain some weight though). It's funny because most of the people in my ostomy group have had the same surgeon.
Let us know if you have any more questions. I remember when I had my surgery I didn't know ANYTHING about this.. I tried looking stuff up here but got lost in all the language.
Posted 12/24/2012 6:11 PM (GMT 0)
     Sure you can email me, I will look forward to helping you in any way possible.  In the meantime....Merry Christmas and a happy, HEALTHY 2013!!!
Posted 12/28/2012 4:03 AM (GMT 0)
I had a total proctocolectomy with permanent ileostomy 7 weeks ago. I am 43 but was extremely sick before surgery. I am doing great now. In fact, I had no butt complications at all! Barely noticed my stitches there. Not saying surgery was a breeze, but I am already glad I did it!
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