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

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 time...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 it..it 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 California....so, 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!

Nate,

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.

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!!

Cecilia

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.

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 !

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. :)

-E

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 everyday...so 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!

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!

matt