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Barbie butt or not??

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Posted 1/22/2015 5:58 PM (GMT 0)
Hello All-

I was diagnosed with UC in 2009 and I have pretty much taken every drug under the sun.  I am currently taking Remicade and Methotrexate and it is managing my UC quite nicely.  I wil try Entyvio if this combination does not work.  Since I am pretty much out of drugs at that point, I have met with several surgeons about Perm Ileo/J-pouch surgery.  Based on my research I think I have decided I want a Perm Ileo.  All the surgeons I have talked to mentioned they would just remove my rectum and sew me up, which I definitely want.  However, I have seen many posts of folks keeping their rectums intact even though they have an end Ileo.  Just wanted to know the reasoning behind that.  I understand keeping the rectum if you have a loop ileo and are waiting for your j-pouch surgery, however, I didn't understand keeping the rectum with a perm ileo and having the possibility of have mucus/blood coming out of there!  Thanks for your responses!

Posted 1/22/2015 11:09 PM (GMT 0)
Some people never have issues with their rectum after having their colon removed. A lot of the time when people have surgery they are too sick to get the whole thing done at once. I had a subtotal colectomy with end ileostomy. I did have very bad issues with my rectum and ended up getting sewed up once I was recovered from my first surgery and had gained some weight.


Sounds like you've got your UC under control though... and with Entyvio and who knows what will come after that... that you may never even need to worry about surgery! So be happy! Don't worry about surgery. Go enjoy life :)
Posted 1/23/2015 12:05 AM (GMT 0)
Thank you for the reply! I always feel like I can't fully enjoy myself until I'm fully prepared for what may happen (to the best of my ability!). I am much more stress free now knowing that I have my surgeon picked out and my decision made if I have to resort to surgery. Since I'm doing pretty well hopefully if I get to the surgery part I will be healthy enough to get the colon removed and bum sewed up in one shot!
Posted 1/23/2015 12:18 AM (GMT 0)
I agree with Embers, just enjoy your life and health for now! That said, I will tell you my experience with surgery. Once I knew surgery was the way I'd have to go, I chose to get and end ileostomy. My surgeon thought I was too sick to handle healing from the wound that would come with being sewn up, but she DID remove my rectum along with my colon and some of my anus. She described what I was left with as a "small anal stump" and said time would tell if I would be OK being left that way. Well, I've had a lot of mucous discharge, sometimes with blood. I often can't control whether it comes out or not, have some urgency, discomfort etc... I guess I COULD live with it, but it isn't very pleasant. So, as much as I hate to need more surgery, I go in at the end of February to get the rest removed and sewn up. Oh well....

Hopefully you never have to worry about such things! :)
Posted 1/23/2015 12:37 AM (GMT 0)
Thanks guys, I appreciate your replies! Now I'm going to go out to dinner and enjoy myself!! :-)
Posted 1/23/2015 3:12 AM (GMT 0)
I knew I didn't want to try j-pouch surgery so I had my colon, rectum and anus removed during the one surgery. I had my surgery about a month after leaving the hospital with a severe flare that had finally been put under control. In that month, I was able to gain enough health and strength that my surgeon was comfortable doing everything at once. However, had I been more sick and weak, they would have done my permanent ostomy in two operations: one to remove the colon and give me an ostomy and then another one later when I was healthy to remove the stump and anus and sew me up. My surgeon never mentioned the possibility of leaving the anus and stump in indefinitely so I can't speak to that option. I was pretty excited to get it all removed in one operation. I was fed up with UC and never wanted to expel anything out of my butt again:) My surgeon did mention that sometimes butt wounds could be temperamental and not stay closed (in which case I would have had to heal the wound open from the inside out by packing it with gauze or getting a wound vac), but that never happened in my case. I had the staples removed after a couple weeks and things healed nicely down there.
Posted 1/23/2015 4:08 AM (GMT 0)
I kept my rectum only because my end ileo (which will now, by my choice, be my permanent ileo) was intended to be step 1 of an optional 3 step jpouch. Since I swiftly abandoned any desire to ever have a jpouch, once the end ileo turned out so well for me, the rectum has caused no issues whatsoever other than an easy, fully voluntarily small squirt of mucus every other day or so in the morning before or after breakfast. I am getting it checked and thoroighly biopsied every year or so, a quick and easy procedure. I may get it removed some time if it goes year after year with no issues, but for now plan to only remove it if one day a biopsy detects dysplasia. I reckon every year witout surgery is another year without any possibilty (even if remote) of having to deal with surgical complications such as wound healing issues. Of course, as I age maybe I should consider doing a barbie butt while my body can handle surgery better... On the other hand I also assume laproscopic surgery gets a little more advanced each year. I sure have enjoyed the year and a half away from any nights in a hospital.
Posted 1/24/2015 1:32 AM (GMT 0)
My rectum and colon are removed...but I still have my anus
Posted 1/28/2015 7:30 PM (GMT 0)
Had it all removed as didn't want the crohn's starting there and also meant no more scopes etc and no risk of developing cancer in any bit that is left which was a possibility so in my case glad it all went.
Posted 1/30/2015 5:24 PM (GMT 0)
I have been living with total colectomy since 2007. My doctor opted to leave a small anal stump at the time of surgery. At one time he was going to sew it up, then decided not to for some reason. Actually, it doesn't bother me except for a small amount of mucous. The thought of sewing it up is just not acceptable to my mind set. As ostomates, we learn to adapt to what ever is in front of us. Good luck. By the way, I have never felt better. The surgery was the best thing ever for me!
Posted 2/5/2015 9:23 PM (GMT 0)
I have had a iliestomy for 20 years i tried a J Pouch ,it failed because of fuchurs i guess thats how you spell it, in my rectum go for the J pouch, i wish mine would how worked out.
Posted 2/6/2015 8:24 PM (GMT 0)
Let me add....I do still have a rectal stump...the UC came back and is attacking that stump. This is four and a half years post op. The reasoning my current colorectal surgeon gave me is my heavy usage of Ibupropen for back pain...a no no for people with UC...(and I knew that!!!). Ok...I had biopsies done...no dysplasia, no malignancy, but still that pesky UC. I am presently being treated with Canasa suppositories and Proctozone (Hydrocortisone cream). I cut the Canasa in half because I cannot tolerate the size. I still swear I have a small rectal vaginal fistula as everything that I insert into the anus seems to squirt into the vagina! However, my surgeon did a thorough exam through the anus and vagina (while I was under anesthesia), about a month ago and he said....NOPE...no fistula..but I do have anal fissures..ugh. He said he doesn't feel that surgery is necessary, but does suggest I have biopsies every two years or so. I feel great..except for when he digs around up there..ugh...not so great after that exam...but I certainly am not going for any unnecessary surgery.
Posted 3/9/2015 10:52 PM (GMT 0)
nix - I had total colectomy back in 2011. And, my surgeon left my anus and small rectal stump for "my comfort...." I didn't realize it then, but it would have been a real pain in the ...... if I had had him remove it... the last time I saw my surgeon he stated that if I had any problems with it, they would go through anus and remove the remainder. No problems as of now except a little mucus output, controlled, every other day in the morning.
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