my total proctocolectomy, the never-ending list of fears....

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Glad Bag
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Date Joined Mar 2007
Total Posts : 699
   Posted 10/7/2008 7:09 PM (GMT -6)   
Hi folks.....

I really can't find any horror stories from people who had the total proctocolectomy, and trust me, I have looked really hard. Most people have really raved about how wonderful things have been after...

well, it is finally my surgery is scheduled for Nov. 14th at Cedars-Sinai. I had my ileostomy surgery there in April of 2007, and it went well, but the diversion only slowed the Crohn's down, didn't stop was probably just wishful thinking that I might one day have the ostomy reversed....

Wow, I am so happy, excited, nervous, and depressed all at once! While I am sure that the many perianal fistulas I have endured for so long will heal, I am a bit worried about the total healing process, and how else I may be affected.

For starters, my colorectal surgeon warned me that 10-15% of patients experience some loss of sexual functioning....I suppose that is a risk worth taking, since, if I let these fistulas keep going unchecked, things can only get worse.

Next, there is the stress that comes along with the fact that I have to go see a completely new doctor (plastic surgeon) before the surgery. I know he will need to have a look, which from experience, means, also he will also do a bit of "poking" (for lack of a better word) around down south before the surgery. of course, I am not looking forward to that whole day. Due to the scarring and fistulas, my colorectal doc will be having the plastic surgeon assist, since I will need extensive skin graphs to patch any skin or other flesh they need to remove along with the colon/rectum.

In addition, they will have a urologist on hand to place catheters and monitor my urethra, ureters, etc....since i have had some problems with fistulas connecting somewhere along my urinary tract (they never found out where either, after a lot of scopes!)

Let's see.....add to all of that, the fact that I have to tell my roommate, "sorry, I have to break the lease early". I share a condo with him (I am only getting out early by a few months, but for whatever reason, I really dread talking to him about it. He has the personality of a door know when it comes to anything other than sports...

Then, I have to round up enough help to move my stuff to my parents for a few months...since I won't be working for a while, I simply won't be able to afford the pricey rent in, one final "boomerang" (as my friends call it) back to my parents' house for a few months while I recuperate from the surgery.

Another stress is centered around the fact that I now have to accept having an ostomy for the rest of my life. I am 31, and while I think I have handled it all fairly well so far, there are some days I just wish I could go without having the ostomy pouch on...(yeah right!! as if!)

so, obviously, I have a lot on my mind lately, and as a result, I haven't been getting a lot done at work....the good news is, after I heal, I still have the opportunity to move to Las Vegas if I am up for it, and my old boss recently tried to bribe me into coming back to work for him, so I will have a few "good" choices to make when I am ready to work again.

I have been trying to imagine what it will be like to wake up and not be immediately aware of the fistulas I have endured for so many years, will that day really be here soon?

I will probably be back to ask some more questions, but in the meantime, if any men can weigh in with some feedback about their experiences, I would be really grateful. Of course, I like hearing from the women also, but I am focused on the male perspective for now...

Talk to you all soon!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 10/7/2008 9:29 PM (GMT -6)   
I'm not male, OBVIOUSLY, but just wanted to say Good Luck and Hang in there. Your pain will soon be over and you will be moving on with Life. Something you really haven't been able to do lately, right? So good hearing from you and asking all of these questions.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 10/7/2008 11:33 PM (GMT -6)   


I had fistulas and setons, too, and understand how painful they are, so I'm happy to report that they disappeared when I had my proctocolectomy two years ago. smilewinkgrin

Yeah, having a permanent ileostomy isn't a dream come true for me either, but it's a heck of a lot better than living with the wrath of Crohn's. This surgery has been the closest thing to a cure for me, because I'm currently disease-free and medicine-free.

Since you're young, your body will recover quickly, and you're going to feel so healthy and energized after getting that diseased colon out of you. I knew the Crohn's was gone the day after my surgery, and it was the best feeling in the world.

I wish only good days ahead for you. Watch out, Vegas, here you come!! turn


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/8/2008 6:12 AM (GMT -6)   
Again, not a guy but...GOOD LUCK you are almost there!!!

My proctocolectomy was not easy (I was 40) but had I waited another 10 years, my doc said it would have been worse (disease wise) are doing the right thing.

My life (and yours) without fistulas....PRICELESS

keep us posted on how you are doing!

New Member

Date Joined Mar 2007
Total Posts : 6
   Posted 10/8/2008 11:36 AM (GMT -6)   
Good Luck, I'm not male either, It was the best decision I ever made, I have my life back now.
And remember you can get help for loss of sexual functioning.

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 10/8/2008 12:51 PM (GMT -6)   
thank you so much ladies!!!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Regular Member

Date Joined Oct 2008
Total Posts : 28
   Posted 10/9/2008 4:24 PM (GMT -6)   
Hi Glad Bag,

I had abdominoperineal surgery July 22 to remove my rectum and anus, after having total colectomy surgery back in '97. I elected to do it due to the increased cancer risk faced after years chronic Crohn's inflammation.

The risk to your sexual function is certainly less than if you were having this done for rectal cancer, so be glad for that. :)

My advice is don't rush it, you need to worry about getting well and healing before focussing on sex. I'd be lying if I said I'm not worried about my function, but after a couple disappointing tries which caused undue stress and anxiety when I was still pretty early in recovery, things were greatly improved the other day. :)

Be patient, you'll most likely be fine ! You won't miss those fistulas much either I bet !

Best of luck !

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/9/2008 4:43 PM (GMT -6)   
Hello!  I am new to this forum and have enjoyed suddenly feeling not so alone.  I'm 28, have had crohn's since I was 10 years old, and in July of this year I had to have a permanent colostomy.  I was too ill for the surgeon to complete the surgery so  I will be going back shortly for him to completely remove all of the diseased areas.  It's nice to know that I am not alone; so much of what i've read are those that have had to get a temporary ostomy of some sort, which is obviously so different than dealing with a permanent ostomy.  Some issues I have been dealing with, that may sound vain but I have to ask:  Pants!  My ostomy unfortunately sits directly where my pants should and so I am seriously struggling with my wardrobe!  I've been reduced to finding maternity pants, which are sometimes still a bit too big.  and wearing elastic yoga pants to work isn't really working out either.  anyone have anything they've found that's worked?  i swear i won't wear suspenders :-)  they tried to tell me in the hospital that i'd be able to wear everything i was able to before and that's just not the case.  i like chatting with other's sharing my situation.

Regular Member

Date Joined Mar 2008
Total Posts : 137
   Posted 10/9/2008 7:33 PM (GMT -6)   
Glad Bag,

I really feel for you....I, too, have Crohn's, and I had one very bad fistula that had to have a drain placed in it for a long time...Anyway, I only mention that because after all the ups and downs i have been through with Crohn's, having that fistula (which turned into a major abscess) was the Worst time of my life. I can Not even imagine how much you have to deal with in having fistulas pretty much constantly... :( :(

I am 27, and had my permanent ileo performed in late May. I am so happy with it, and I never thought I would say that. I was Really concerned about what my fiancee at the time would think (we got married in august)...but I truly believe that b/c it really doesn't bother me at all, he adopted the same attitude.

Anyway, I really do wish you luck. You have a lot on your plate to deal with, and I am so impressed that all your posts here always have a very positive and/or humorous tone!! :) Way to go for keeping your sense of humor through all this.

No one should have to deal with the horror of fistulas for such a long time. I am sure you are making the right decision. Keep us updated on how things progess! I will say prayers for you. :)


Regular Member

Date Joined Feb 2007
Total Posts : 48
   Posted 10/9/2008 8:38 PM (GMT -6)   

Hi i am a 42 year old male i had a total proctectomy september last year. i suffered with crohns and fistulas. did the remicade thing with no help from it ended up getting a perminant ileostomy with the removal of the anus. they removed all the fistulas and it took a while but everything healed up great. it is funny how al those years suffering with the pain and discomfortant and how my life is now it is great no pain no more drugs.Yes it takes a while for the rear end to heal. lots of sitz baths every day helps with the healing. the one problem i am learning to deal with is the sexual function. does not work the way it did but the little blue pills work great.


Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/10/2008 10:30 AM (GMT -6)   
CourtneyTurner--Welcome to the site! I have a permanent ileo and wear ANYTHING I want!! My stoma sits a little lower and to the right of where my bellybutton SHOULD be!! I did have to try on alot of jeans to find the brand/style/rise that worked for me and I don't have to dress up jeans it is! I even think there are a few posters who wear low-rise...and conceal their appliance with a cami and cute shirt!

I think there is a post from a few weeks ago with MANY suggestions of what you can wear to disguise the appliance...I hope you can find it and get some suggestions!

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 10/12/2008 1:03 PM (GMT -6)   
thanks again everyone!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 11/25/2008 6:02 PM (GMT -6)   
how'd it go?

it was the best decision i ever made, should have had this done years ago. the doc cut out all the fistulas and crap and i've had no probs in that dept since the procto. no loss of sexual function over here, it's a pretty small percentage of people who have trouble-definitely worth the risk! i don't really get why you need to see a plastic surgeon? my butt took a bit longer to heal because of the large gap, but i never saw any plastic surgeon...? it's hard to accept having this for the rest of your life, i know...but once you're all healed up and doing things you like to do pain-free, you'll know it was the right thing to do!

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Regular Member

Date Joined Jan 2007
Total Posts : 86
   Posted 11/27/2008 6:56 AM (GMT -6)   
Glad, not a boy once again....but a supportive and understanding girl.
Your surgery was scheduled for November 14th, so I'm just checking in and wondering how you are?

Your post brought back memories for me of the fears and stressors prior to surgery. I was also very concerned about new doctors, new health history forms to fill out, new tables to lay over in the butt-up position, and the uncertainties of surgical outcomes. This too shall pass.

Regarding the boomerang effect: at first it's a drag, but then no one can really take care of you or your needs after surgery like the good ol' parentals.

Hope you are well, drop us a line. H
Diagnosed Crohn's/Colitis 2003.  
Subtotal Colectomy w/ Ileostomy May 16, 2007.
I'm off the meds!!  

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