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I've had crohns for 30 years. Had ileostomy for 30 years. Now having pain literally in the rectum area.  Cant do sigmoid scope  to check for colon cancer due to anal area way to sore.  Dr. advised a total colectomy to remove any doubt of colon cancer.  Can anyone advise pros and cons of having this procedure.  I have about 5 inches of colon left and dr says they will remove the lining of  it, leave the muscles of colon (not sure if that is good idea) sew the anal area up and that it.  Any previous patients that had this done I would like to hear your pros and cons of the surgery.  Thank you very much!

 Reply posted for richierich.

unfortunately, i did have complications with my surgery. i hate to even tell people about it because,it's such a rare percentage of people who have the issues i had. and even with all that i went through, i would do it again. *** , i'd do it twice. my quality of life has improved so much since having the surgery.

but back to my complications... after both of my surgeries, i had bad reactions and my incisions were not healing well. they had to open it up and heal it from the inside out. it required me to wear a wound vac, which literally sucked my energy dry. and visit the wound care center everyday for weeks on end so they could change the dressings and clean it out.

also, for my ileostomy, my rectum was sewn shut to prevent infection. when they did that, it created scar tissue on the wall of my vaginal opening. i know that wouldn't be an issue for you... but it's been a pretty serious issue for me, since sex has been nearly impossible. i did not suffer any nerve damage though and the ileostomy itself doesn't cause any problems for sex, whatsoever.

i hope this helps you out. fee free to contact me on my blog anytime! www.lifelemonsandlemonade.com

 Reply posted for lifenlemonade.

Thank you for your reply.  30 years ago the doctors thought that at some point they could connect my small colon to my rectum.  That's why they left the 5 or 6 inches of colon and my rectum.  But the crohns has never gone away.  I've had rectal bleeding daily since then. It wasn't until about a year ago that I started having this intense pain in my rectum.  It comes and goes and is very painful.  I'd like to have the surgery but am concerned of the problems if they hit the nerves that control my ability to urinate or possibly have problems sexually. I've heard stories of people having to have a catheter so they can urinate.  Not sure which would be worse getting colon cancer or those two things. Still considering what to do. Surgery planned for March.  Did you have any complications with your surgery?  Again thank you for your reply! 

 Reply posted for lifenlemonade.

Thank you for your reply.  30 years ago the doctors thought that at some point they could connect my small colon to my rectum.  That's why they left the 5 or 6 inches of colon and my rectum.  But the crohns has never gone away.  I've had rectal bleeding daily since then. It wasn't until about a year ago that I started having this intense pain in my rectum.  It comes and goes and is very painful.  I'd like to have the surgery but am concerned of the problems if they hit the nerves that control my ability to urinate or possibly have problems sexually. I've heard stories of people having to have a catheter so they can urinate.  Not sure which would be worse getting colon cancer or those two things. Still considering what to do. Surgery planned for March.  Did you have any complications with your surgery?  Again thank you for your reply! 

I was diagnosed w/ Crohn's in '02 & was managed w/ meds til '07, when I had a severe flare. Most of my disease was very low, in the rectum so they started by removing a few inches of my colon & gave me a Colostomy, & then had to go back & remove the rest of the colon & gave me an Ileostomy. I spent 14 months in the hospital & they found cancer in my colon. They decided to deal with that first before they started me on Humira for Crohn's. They thought the Chemotherapy might help with the Crohn's too, but it didn't. For that matter, the Humira didn't either - which is why we ended up with no other choice than surgery. So even tho i didn't have a choice, I feel like I can relate to your story because I too had extreme pain in the rectal area and had issues with cancer in the colon. 

So in answer to your question - if I were put in the same situation today, and was actually given a choice - I can't tell you how easy it would be. I would absolutely choose the surgery. The ways in which it has made my life better, FAR outweigh the ways it made it harder. Yes, there are cons. But if you've lived with an Ileostomy, then you understand for the most part, what they are. 

I had a couple questions about your post: 1) I was under the impression that by having lived with an Ileostomy, your rectum would have already been sewn up. Is this not the case? Because mine was when I got my first surgery done and had the Colostomy. 2) If this was not the case for you, do you mind my asking how that works?  Why would the rectum not be sewn up if the stool is being released through the Ileostomy? 

I keep a blog dedicated to Crohn's Disease, so feel free to check that out and you can contact me through there if you'd like to talk in more detail. I hope this helped at least a little. 

Leah
www.lifelemonsandlemonade.com 

I was diagnosed w/ Crohn's in '02 & was managed w/ meds til '07, when I had a severe flare. Most of my disease was very low, in the rectum so they started by removing a few inches of my colon & gave me a Colostomy, & then had to go back & remove the rest of the colon & gave me an Ileostomy. I spent 14 months in the hospital & they found cancer in my colon. They decided to deal with that first before they started me on Humira for Crohn's. They thought the Chemotherapy might help with the Crohn's too, but it didn't. For that matter, the Humira didn't either - which is why we ended up with no other choice than surgery. So even tho i didn't have a choice, I feel like I can relate to your story because I too had extreme pain in the rectal area and had issues with cancer in the colon. 

So in answer to your question - if I were put in the same situation today, and was actually given a choice - I can't tell you how easy it would be. I would absolutely choose the surgery. The ways in which it has made my life better, FAR outweigh the ways it made it harder. Yes, there are cons. But if you've lived with an Ileostomy, then you understand for the most part, what they are. 

I had a couple questions about your post: 1) I was under the impression that by having lived with an Ileostomy, your rectum would have already been sewn up. Is this not the case? Because mine was when I got my first surgery done and had the Colostomy. 2) If this was not the case for you, do you mind my asking how that works?  Why would the rectum not be sewn up if the stool is being released through the Ileostomy? 

I keep a blog dedicated to Crohn's Disease, so feel free to check that out and you can contact me through there if you'd like to talk in more detail. I hope this helped at least a little. 

Leah
www.lifelemonsandlemonade.com 

I was diagnosed w/ Crohn's in '02 & was managed w/ meds til '07, when I had a severe flare. Most of my disease was very low, in the rectum so they started by removing a few inches of my colon & gave me a Colostomy, & then had to go back & remove the rest of the colon & gave me an Ileostomy. I spent 14 months in the hospital & they found cancer in my colon. They decided to deal with that first before they started me on Humira for Crohn's. They thought the Chemotherapy might help with the Crohn's too, but it didn't. For that matter, the Humira didn't either - which is why we ended up with no other choice than surgery. So even tho i didn't have a choice, I feel like I can relate to your story because I too had extreme pain in the rectal area and had issues with cancer in the colon. 

So in answer to your question - if I were put in the same situation today, and was actually given a choice - I can't tell you how easy it would be. I would absolutely choose the surgery. The ways in which it has made my life better, FAR outweigh the ways it made it harder. Yes, there are cons. But if you've lived with an Ileostomy, then you understand for the most part, what they are. 

I had a couple questions about your post: 1) I was under the impression that by having lived with an Ileostomy, your rectum would have already been sewn up. Is this not the case? Because mine was when I got my first surgery done and had the Colostomy. 2) If this was not the case for you, do you mind my asking how that works?  Why would the rectum not be sewn up if the stool is being released through the Ileostomy? 

I keep a blog dedicated to Crohn's Disease, so feel free to check that out and you can contact me through there if you'd like to talk in more detail. I hope this helped at least a little. 

Leah
www.lifelemonsandlemonade.com 

I was diagnosed w/ Crohn's in '02 & was managed w/ meds til '07, when I had a severe flare. Most of my disease was very low, in the rectum so they started by removing a few inches of my colon & gave me a Colostomy, & then had to go back & remove the rest of the colon & gave me an Ileostomy. I spent 14 months in the hospital & they found cancer in my colon. They decided to deal with that first before they started me on Humira for Crohn's. They thought the Chemotherapy might help with the Crohn's too, but it didn't. For that matter, the Humira didn't either - which is why we ended up with no other choice than surgery. So even tho i didn't have a choice, I feel like I can relate to your story because I too had extreme pain in the rectal area and had issues with cancer in the colon. 

So in answer to your question - if I were put in the same situation today, and was actually given a choice - I can't tell you how easy it would be. I would absolutely choose the surgery. The ways in which it has made my life better, FAR outweigh the ways it made it harder. Yes, there are cons. But if you've lived with an Ileostomy, then you understand for the most part, what they are. 

I had a couple questions about your post: 1) I was under the impression that by having lived with an Ileostomy, your rectum would have already been sewn up. Is this not the case? Because mine was when I got my first surgery done and had the Colostomy. 2) If this was not the case for you, do you mind my asking how that works?  Why would the rectum not be sewn up if the stool is being released through the Ileostomy? 

I keep a blog dedicated to Crohn's Disease, so feel free to check that out and you can contact me through there if you'd like to talk in more detail. I hope this helped at least a little. 

Leah
www.lifelemonsandlemonade.com