Countdown to Surgery: Fear, Ostomy, and Weight Loss

It is November 1, 2013 and my surgery is on the 14th. I'm trying so hard to be positive, but my fear is intense. I do not know yet if I will need a temporary or permanent ostomy. I go to the stoma nurse for markings and have final consult on November 6th.
My cancer is very very low in my rectum just about 1.5 mm from sphincter muscle, so the surgeon is not sure if she can protect the integrity of the reversal and that I might not be able to regain control and could be facing fecal incontinence forever. I am 51 and this is my biggest fear. Would I be better choosing a permanent ostomy and not have to deal with the public embarrassment. I am also a professional singer and terrified that I could have an accident on stage.
One other question.....How much weight should I anticipate losing from this operation????
I am very new to all of this and am so happy to have found this site to reach out to all of you.
So thank you for taking the time to answer me back, I'm sure this is just the beginning of my journey.

Welcome! Well, you've come to the right place for pre and post-op support! How much weight you lose depends on your condition going into the operation. I was very ill and anemic going into my first surgery - the complete colectomy, so I was in the hospital for a full week - so I lost a ton of weight. My next surgeries, I no longer had the UC in my system, so I was fully recovered and back to my normal active lifestyle - thus in really good shape - so I was only in for a few days, thus weight loss was very minimal. As someone who's had 4 abdominal surgeries, my best advice to you is, while in the hospital - as painful as it is to bend and get out of bed - get up and walk! As often as you can - because the sooner you get "active," the sooner your bowel will wake up and you can start eating solid food - thus stopping the weight loss from only being on the IV. My post-op regimen consisted of walk - nap - walk - nap.... hardly watch TV because I didn't want to lie there and veg out LOL. The nurses were all astounded at how fast I recovered and was OK'd to go home. My final surgery of removing my rectum - I went in Wednesday morning and was home for dinner on Friday night! So the better shape you have yourself in leading into the operation - the faster you'll recover and get back to your normal life! Whether your ostomy turns out to be temporary or permanent someday - don't let it slow you down or hold you back! Good luck - James

P.S. I'm a retired musician - I did a gig only 1 week after my final surgery! I just couldn't lift any of my equipment.

I was in your shoes four years ago. The tumor was about 1.5 cm from the sphincter. I went in hoping to avoid the permanent ostomy, but at the end of the day, it wasn't in the cards for me. I don't recall reading any stories on here about these types of reversals, but there are plenty by folks with complete colectomies that get reversed. After a healing period, many of them seem to do just fine, but I just don't know how successful a reversal without a rectum would be. Hopefully, someone with a similar experience will chime in.

As for weight loss... Since you didn't mention it, I'm guessing you won't be having to go through chemo. If that's the case, I wouldn't be too concerned about weight loss. You will likely lose a little, but if you do as suggested above, it will come back, probably pretty quickly. Good luck to you.

Dave

I had sent an email, as I am a singer, so in case you did not see it, check it out as I have sung professionally and also have had the surgery you are facing. I hope you have a good outcome and I believe you will. I had spent quite a bit of time on replay vis-a-vis the singing, as I was happy to help you with that. As I say in the message, you need not fear that the removal of the rectum has to affect the singing ability. Best wishes for your recovery. Francisca

Thank you, Francisca....
That is a relief to hear about singing. Could not imagine not having that outlet. I do not know if I will need chemo yet. I think I will only know once I've had the lymph nodes removed and pathology comes back. But thank you for relieving some of my stress.

Hi - I know nothing about reversal of ostomies and did not have anything as dire as cancer. I just want you to know you will be in my prayers and let all of us know how you are doing.

Judi

Hello singinac. I just wanted to wish you well for your surgery and to suggest that you don't need to be making decisions at this stage about whether or not you have a permanent stoma. I managed chronic faecal incontinence for about 20years before I finally decided that the pain was getting worse and too bad to cope with any longer. Having made the decision to have a permanent ostomy I have never regretted it.  However, I do believe that part of the process of adjustment involved coming to terms with the fact that I could no longer carry on with the alternative.  Interestingly, coping with the incontinence made it so much easier to cope with whatever the stoma 'threw-up' at me.

Best wishes

Bill

Went through the same procedure 4 years ago, similar situation, and the doctor decided on a permanent, which I must say was probably the correct decision. It takes a while to develop your own routine, but you will be fine, don't worry, the cancer will be gone.

Hello Singinac

Glad you have found a sounding board here.

I too was in the same situation you are facing but mine was in 2010. Low tumor. Stage 3 colorectal cancer (0 mets). They did a complete rectal removal and what you call a colo-anal anastomosis (attach the colon to the anus). I had a temporary ileostomy while all that healed (about 9 months). I couldn't wait to have the reversal. The day finally came and I had my ileostomy disconnected, and was now "straight pipe" no rectum as a reservoir. I must admit the transition was very difficult. It took several weeks, numerous accidents, and tons of embarrassment. The only way I went out in public was while wearing a pair of Depends. Eventually, I gained some control taking 12 amodium tablets a day (4 per meal). This helped bulk up the stool so I can gain some control. After about 9 months, I developed a fistula in the anal region. OMG, this was the most painful thing I had ever endured. They had to drain out the fistula by making an incision...heck "they made a hole on my butt cheek" and inserted a drainage tube so the infection can drain out. I made the decision then and there to have a colostomy put in place!!

I have never regretted the decision to today...that's 4 years gone by. I am turning 50 this year, been on trips, cruises, coaching football, and playing hockey twice a week. P.S. If I can do all that.....I guarantee you can sing till your heart is content.

I have a renovation business and I am busier now than I ever was. Even at this point, I have a "loop" colostomy (which means I can always go back to being a straight pipe again)....but I choose not to! That should tell you something.

All that to say, if it comes down to 'you' having to make a choice, I would give strong consideration to a colostomy.

I wish you well, my dear.
Please do not hesitate to look me up, send me an email. I would be glad to chat with you.

Take care

R.

I faced my surgery with intense fear, and I couldn't wait to have it behind me (so to speak). Waiting was like Chinese water torture, worrying about all the things that could go wrong. I finally solved that by trying to live in just the very immediate moment. If you have a significant other, engage him or her to help you think just about the very next thing you need to do. My wife was great, and I even got down to now open the car door, now go through the lobby, now get in the elevator, now push the button. That really helped, and instead of living out the surgery twice, once in advance thinking about it, and then the actual surgery, I was able to put it out of my mind. The surgery itself is not really that big of a deal because the recovery minutes turn to hours which turn to days, which turn to weeks and before you know it, it is all well behind you.

Don't fret over an ostomy. The ostomy technology has been around for so long that it not only works really well but is actually quite carefree. In fact, there is a strong argument that it is the better choice. I have been on other boards with ostomists, and I have never heard someone with a permanent ostomy say they made the wrong choice. I feel my permanent ileostomy was by far the better choice and it has not hindered my life. In fact, many of the reversible procedures or things like J pouches can be fraught with issues, much more so than an ostomy, once you get used to it.

And don't be worried about performing. Check out the products offered by ostomysecrets.com. They will help you to look wonderful and confident.

Finally, my weight pre and post (and even immediately post) surgery had very little variation at all. Unless you have other things going on, that is most likely of no concern at all.

My son has a loop stoma too, but at the moment we don't want to go back to using the toilet as he never has used it. He has no nerves in his large intestine, but we did not know this until he was 5 years old because they called him lazy. I wanted to say to the doctors, "How can a 2-week-old baby be lazy?" He was chronically constipated until 5, then they did a colostomy. Goodness knows why as the nerves are not there, so why do one, I said, so did the stoma nurse. 6 months of flushes, suppositories. His stomach was full of poo even with colostomy, so they have done an ileostomy and we have not looked back. It is awesome. Oh yeah, at times the bag comes off many times a day, then it may stay on for 4 days. Lots of people have said to my son, "You can't do that, you will hurt yourself!" Well, he is the front row prop in rugby, he swims in a wetsuit. I haven't quite figured out how to keep the bag on in water when not in a wetsuit. Any ideas would be great! Because it could be 30 and he has to wear a wetsuit!
KO
#From a mother, here are a few tips: if you keep the bag empty as possible, it stops the shirt from sticking out!
#Make sure you change the bag before you eat or sometimes the food is out of the stoma before your bag is on and this can be very messy!
#Don't use baby wipes to clean around the stoma as this leaves an oily residue on your skin, so when you put your bag on, it won't stick!
#If going out places and you don't want others to notice your bag, you can get a hernia belt. It's about 18 cm wide and you wrap it around your body! You cannot see the stoma. That's what my son used for rugby and it worked really well!

I hope I haven't given you too many things to think about, but it's better to have lots than none like we did. Hope you're doing okay! If you can't eat things at the moment, custard, marshmallow thickened poo, banana, potato, pumpkin, cause at the start it will be really runny and these do help to keep something in your stomach as it will be very runny for a while.

#Drink lots of drinks: milk, smoothies, electrolyte drinks, cause you lose lots of salt! My son's stoma nurse told me... at first with an ileostomy, it's like a person with diarrhea, it takes a lot of energy... so sleep when you need to!
Sorry if this is too long... thinking of you, Julie (Mom) ------ Griffin, 9 years, brave boy.

My son has a loop stoma too, but at the moment we don't want to go back to using the toilet as he never has used it. He has no nerves in his large intestine, but we did not know this until he was 5 years old because they called him lazy. I wanted to say to the doctors, "How can a 2-week-old baby be lazy?" He was chronically constipated until 5, then they did a colostomy. Goodness knows why as the nerves are not there, so why do one, I said, so did the stoma nurse. 6 months of flushes, suppositories. His stomach was full of poo even with colostomy, so they have done an ileostomy and we have not looked back. It is awesome. Oh yeah, at times the bag comes off many times a day, then it may stay on for 4 days. Lots of people have said to my son, "You can't do that, you will hurt yourself!" Well, he is the front row prop in rugby, he swims in a wetsuit. I haven't quite figured out how to keep the bag on in water when not in a wetsuit. Any ideas would be great! Because it could be 30 and he has to wear a wetsuit!
KO
#From a mother, here are a few tips: if you keep the bag empty as possible, it stops the shirt from sticking out!
#Make sure you change the bag before you eat or sometimes the food is out of the stoma before your bag is on and this can be very messy!
#Don't use baby wipes to clean around the stoma as this leaves an oily residue on your skin, so when you put your bag on, it won't stick!
#If going out places and you don't want others to notice your bag, you can get a hernia belt. It's about 18 cm wide and you wrap it around your body! You cannot see the stoma. That's what my son used for rugby and it worked really well!

I hope I haven't given you too many things to think about, but it's better to have lots than none like we did. Hope you're doing okay! If you can't eat things at the moment, custard, marshmallow thickened poo, banana, potato, pumpkin, cause at the start it will be really runny and these do help to keep something in your stomach as it will be very runny for a while.

#Drink lots of drinks: milk, smoothies, electrolyte drinks, cause you lose lots of salt! My son's stoma nurse told me... at first with an ileostomy, it's like a person with diarrhea, it takes a lot of energy... so sleep when you need to!
Sorry if this is too long... thinking of you, Julie (Mom) ------ Griffin, 9 years, brave boy.

Hi, I just want to wish you well with your surgery. I had mine in July and went for something completely different and ended up with an irreversible ileostomy! I had no warning and therefore no time to think (which is just as well nurses make horrendous patients!). It was a shock but after overcoming my mental shock, I knew it was up to me to cope, no one else could do it for me! Then it becomes second nature and no big deal. On a practical note, I will say I carry a bag with me with everything I need to deal with an accident, including a full set of clothes to change into, but I have never had to use them so far. So I hope all goes well and you make a speedy recovery, trust your doctor to do the right thing for you after all he/she is an expert.
Weight loss or gain depends very much on whether you have chemo after and whether or not you require steroids, just take it day by day and if that is too long, hour by hour.
I will remember you in my prayers, God bless.