How common and Safe is proctocolectomy surgery

[cleuger]

My Uncle who is in his 70's worries about me he and my father were very close since my father has passed he has become closer to me and my sisters. He sent me a text tonight telling me he has a bad feeling about this surgery and he didn't think it was a normal or common thing to have the whole colon removed. I told him to goggle the term proctocolectomy. He responded by telling me there are to many other options out there for me to have to have such a drastic thing done to myself. Honestly he just doesn't understand about Crohns Colitis. So naturally Ive started becoming scared again to the have the surgery Does anyone know of anyone that did not make it through one of these surgeries? I know its a major surgery but is it a common surgery? Is it safe?

TIA
Cindy

 

[DJW]

Hi Cindy,

I asked my surgeon that question many years ago when Igot my iileostomy. He said its not like getting your appendix out. Its major surgery but (even back then) its very common.

That surgery have me my life back. I expect the same for you.

 

[cleuger]

How long ago did you have your surgery? I'm wondering if much has changed since then. To be honest my sweet old uncle is making things worse for me just about had me talked out of going through with this. I can walk and not have the surgery but then the risk of having emergency surgery is a much higher risk and not to mention I'm just getting worse with time. I'm In a pretty bad flare right now I'm passing
Blood in my stool and my joints are killing me. I'm also worried about going into this in a flare. You would think they would put me on pred or something to calm things down. Mine is to the point on my lower shins close to my ankles I have those red warm nodules I forget what it's called. They hurt. The problem with bleeding is I up my iron to keep from being to anemic but with that comes the irritation of the iron. Can you or someone advise on how to make myself feel better before going into surgery I have it in 11 days. I need to stop listening to some of my family members they thinks I'm being drastic with this surgery since it's something they've never heard of.

 

[FrozenGirl]

That's just the answer. You need to ignore you family (which I'm sure is hard) and take it as a sign they are just worried because they love you. But as you know emergency surgery is more dangerous, you need to do what is right for you. Good luck!

 

[DJW]

About 29 years ago.

 

[Susan2]

I had my proctocolectomy in 2000. I really had left it far too long and the disease had destroyed a large amount of tissue around my rectum and anus. This all had to be removed and left a hole size of a man's fist, which took months to heal as it was left open to heal from the inside out. The lesson from this is don't keep putting off the inevitable.

But the good news is that it did heal very cleanly and I had no infection at all. And, as with many other people, it changed my life.

You can tell your family that you are much more likely to die from the complications of the Crohn's Disease than you are from the proctocolectomy. While I was procrastinating about the it, I was rushed into hospital and operated on at 2am in order to save my life because of a twisted bowel.

 

[Jeff D.]

I just had my proctocolectomy done on the 14th of last month. The surgery went perfectly. They left about a one inch stump, which you can ask about, that has made recovery much quicker. My one issue is that I had a hematoma form under the incision, so they had to partially open up my incision and that is painful and takes a bit longer to heal. My surgeon is one of the best in the country. He and his staff have been excellent to work with. If you have the ability to go to Vanderbilt in Nashville, I would not hesitate to go. Besides this incision I am feeling so much better and I know once this has healed I will be better than ever.

 

[cleuger]

About 29 years ago.

Wow 29 years ago im am sure medical technology has advanced since then. You have lots of experience with this. I hope to be where you are years down the road and just reflecting back.

 

[cleuger]

I had my proctocolectomy in 2000. I really had left it far too long and the disease had destroyed a large amount of tissue around my rectum and anus. This all had to be removed and left a hole size of a man's fist, which took months to heal as it was left open to heal from the inside out. The lesson from this is don't keep putting off the inevitable.

But the good news is that it did heal very cleanly and I had no infection at all. And, as with many other people, it changed my life.

You can tell your family that you are much more likely to die from the complications of the Crohn's Disease than you are from the proctocolectomy. While I was procrastinating about the it, I was rushed into hospital and operated on at 2am in order to save my life because of a twisted bowel.

This is so true. I had an abdominal abscess the size of a baseball that had to be surgically removed. I was in critical condition and in ICU first 2 days. I know this first hand my complications is what has promted the surgery in the first place. I will have to set them straight. I know I need to move forward I am at 10 days and counting. I know this sounds trivial but I think Im dreading the bowel prep as much as the surgery :ysmile:

 

[Susan2]

One good thing is that you should never have to go through that type of bowel prep again. Usually, for those of us with ileostomies, we only need to do 24 hours or so with clear fluids as bowel prep. :ybiggrin:

If a radiology department ever tells you otherwise, check with your GI. It can be very dangerous for an ileostomate to do a full bowel prep as we can become severely dehydrated.

 

[DJW]

One good thing is that you should never have to go through that type of bowel prep again. Usually, for those of us with ileostomies, we only need to do 24 hours or so with clear fluids as bowel prep. :ybiggrin:

If a radiology department ever tells you otherwise, check with your GI. It can be very dangerous for an ileostomate to do a full bowel prep as we can become severely dehydrated.

Very true.