Countdown to My Colectomy: Seeking Advice and Sharing Concerns

I will be having a colectomy performed on Dec 20.  I had Stage 3 colo-rectal cancer 15 years ago which was treated by surgery with colectomy, radiation and chemo.  Had the colostomy reversed after 1.5 years. Now I have fistulas in the colon at the anastomosis which are leaking into the urinary tract and causing infections.  This time, the colostomy cannot be reversed because the radiation has continued to erode the tissue and it has become too friable. The surgeon has told me he may have difficulty sealing off the remaining rectal portion (stump?).  So here are my questions:

• I've had  IBS-like issues before cancer and after.  Some days I eat something and then have to run to the bathroom every 15 minutes for several hours after. I don't expect the colectomy will have any impact on this -- is that correct?  Will I need to run to the bathroom every 15 minutes to empty the bag?
• Is there is a chance I may wake up from surgery with my rectal stump removed -- some of you have had some horror stories on this.  Obviously I should ask my doctor this question but if I have a choice...
• I have always had a gassy stomach and know that won't change.  In fact, I remember with my last colostomy sitting in a meeting and it sounded like I had a whoopi cushion.  I've read much of everyone's advice on this site so I suppose this isn't really a question.
  🔒 Login to see image
  
• I may be 60 but I like to do things (scuba dive, ski, hike, kayak, travel) and I try to dress non-frumpy (guess my low rise skinny jeans won't work any more).  Activity and fashion advice would be appreciated.
• I'm already depressed and expect it will be worse.  I remember wanting to vomit every time I looked at my stoma.  But after reading some of your posts I see that I should stop my whining and get on with it.
• Are there any other pre-surgical questions/choices I should ask my surgeon

Make sure the surgeon tells you everything they are going to do.

Don't take for granted that the nurses always know what they are doing.

If your surgeon says the catheter needs to be in for a certain amount of time, then DO NOT LET ANYONE REMOVE IT!

Ask him the recovery time approximately

And make sure you use the stomal therapists, they are a great source of information,

Other than that make sure the pain relief is kept up and relax.

And as for the rectal stump, I think you may find the surgeon will remove the rectum. Thats not a bad thing really, least you wont get skid marks in your undies, and the end result isn't too bad.

I had the same circumstance (anastomosis breakdown) except fortunately it never progressed to the fistula issue.

The first question that comes to mind is: are you having a colostomy or an ileostomy done?  If it's a colostomy...I hope you will find that your days of running to the BR every 15 minutes are over!  The ostomy should (over time) become fairly regular - whatever process you wish and are able to do to regulate it.  

In what part of the colon is your colostomy to be placed?  If in the sigmoid or descending colon, you will be able to irrigate.  If higher up, irrigation will likely NOT be an option but you can still regulate by diet and/or Immodium.  My (temporary) tranvese colostomy was VERY regular (6 am - noon - 6 pm) with a very little Immodium every day.

Now, with my permanent descending colostomy I irrigate once a day, and usually have no BM until I irrigate the next day.  Of course, sometimes this gets screwed up - raw tomatoes, beans, and believe or not commercially prepared cakes always bring on unanticipated action.

Some folks on this site irrigate every 2-3 days (lucky them!)  So this will be something to ask your doc and ostomy nurse. It will be at least 3-6 months down the line.

Finally, for gas and excessive noise - can I say this often enough? -   BEANO!  It works!

Best of success with your new ostomy.    
🔒 Login to see image

Thank you for the good info.  Yes, Pinky, I 've seen your glowing reports on Beano -- I've found starvation diets work pretty well too.  I'll be having a colostomy and think it will be lower but I see that is another question I should ask on my pre-surgery consult.  Also sounds like irrigation is something I'd want to do to minimize bowel output at un-wanted times?  Another good question for my doc. Gus, doc said I'd be out of work 6 weeks but it didn't take me that long 15 years ago (ok, so I'm 15 years older...) and hope to get back to work in 4 weeks.  So, if given the choice, I should go for the stump removal?  Do we have stomal therapists in the US?  And I do remember hating the catheter and finding that nearly as unbearable as the pain -- sounds like you had some dire consequences of early removal.

Well with the catheter issue, my surgeon said it had to stay for 7 days, day 3 and the nurse said she was removing it, I told she wasn't. An argument ensued where security was called into the recovery room. She was so determined to remove it she forgot to deflate the ballon and tore my urethra open. Aftermath of that was urine leaking through the wound where my rectum was removed and a super pubic catheter placed in under local anesthetic which wore off 10 minutes into the procedure. F***ing hell that hurt.

Secondly since having my ileostomy formed and my rectum removed I have been moderately healthy. I have had issues with hernias and weeping sinus but I have given up on ever being rid of them.

Just remember you are working alongside the surgeon. He should be keeping you informed on every aspect of the operation.and 4 weeks is not enough time for recovery before you return to work. if he says 6 weeks then it's 6 weeks. take it from one who went back to work too early its not worth it.

My Ostomy Journey: Jearlean | Hollister

🔒 Login to see image
oh c'mon now your intestine dont want to be outside the belly we have all had good and bad things be friends with your stoma afterall its a part of you and an important part i have touched (chezza stoma) touch your tongue pretty much the same and ant farting just say dont blame me its chezzy i say but ileo we dont have big gas sound noiseless lol..irrigation i was told couldnt do it with ileo anywat ibs patients shouldnt do it u could hurt your isides or put a hole in it ..We are living with this its weird but u realize you love the little basterd lolol my rectun came out cause more crohns stricture its still leaking mucus stuff 2 half years grrrr...u will be back travelling b 4 u know it ..oh enjoy the pain meds chill out cheers mooza
🔒 Login to see image

🔒 Login to see image

🔒 Login to see image

🔒 Login to see image

I'm thinking if I personify the bugger it might make it less daunting.  So trying to think of a good name.
🔒 Login to see image
(Just love these little emoticons.)

mooza your right got to love it it is better than the alternitave. what is the ozzing? i hate that part. i wear pads to keep my pants dry such a mess. i stay irritated because of the ozzing. sometimes is your ozzing a dark color almost like a  bm  i have had this for 3 years now. dr. says it is normal,oh yea as long as it is in my undies and not his. have you asked your dr.

I vote "Chloe" for your stoma's name. Don't ask me why, I was just inspired suddenly and thought I'd let you know.
🔒 Login to see image

One week to go and I'm worrying about everything.  But just curious, will my stoma be a she or a he?  I've seen several ladies on this site refer to their stoma as he.  Should I just wait until after its "birth" to determine its character and gender?  Tiggy, I've always loved the name Chloe and afraid giving my stoma that name might ruin the name for me.  I was kind of leaning toward a non-gender name like Whoopee (as in cushion -- not Goldberg).  

Tomorrow I meet with my surgeon and surgical nurse so I need to be sure to ask all the right questions.  Justme&5, what is ozzing-- mucous discharge?  Should I ask about this?

Mooza, are you okay?  Thought I read that you were home from the hospital but haven't figured out how to navigate this site to come up with your latest status.

Awe, well I would hate to think that naming your stoma "Chloe" might ruin the name for you. Why not look at it like this: your stoma is going to improve your prognosis, and make your life better lived in the long run - so maybe naming it "Chloe" might be perfect, seeing as you love the name so much? I know, I know, we all go through our own process of dealing with this and it's presumptuous and unhelpful for me to try and tell you how you should be viewing your current situation.

I just really think the name Chloe would be perfect.
🔒 Login to see image


On a serious note - please please please, remember to take good deep breaths, and remind yourself that a time will come when all of this is behind you. It's going to be alright - have faith and keep us posted!

Gus has some great advice.

And I'll add:

1. Consult with a stoma therapist (sometimes called stoma nurses, ostomy nurses, ET nurses) BEFORE your surgery. Once they know what type of surgery you are going to have, many surgeons want the stoma specialist to suggest the spot for the stoma. Many things factor into how good a spot the stoma location is ... such as where your belly folds, how high you wear pants/skirts. The ostomy nurses know all this and have time to spend ... the surgeons not so much. They know it has to be in a certain area ... but let me tell you, 1" in either direction makes a load of difference down the road.

2. Know as much as you can as to what you'll wake up with. I took for granted I'd have my rectal stump gone ... nope, it's still here and a hassle and headache. I'm looking at another surgery to get rid of that next year.

3. And Gus is right ... do not assume that the nurses know what is going on -- question everything. For example, when you get meds, and they (should) say "here is your xx for xx". Say it back to them. It's my "xx ...".  Why? I got wrong meds and took them twice until I questioned it. If something feels or looks or sounds wrong, question it. This can be difficult when you're recovering ... so that is why, if you can, have someone around who will speak (and hear) for you.

4. 4 weeks to get back to work ... at 4 weeks, I was still pretty fragile. But you may be made of stronger stuff
🔒 Login to see image
.


Good luck and I'll be thinking of you.