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Colostomy surgery planned

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

Hi everyone, I need some imput/advice from anyone who has had surgery and had a colostomy bag. My colorectal cancer is very low so the best outcome for me is the bag. Also, my surgeon is removing the ovaries. I am trying to read up on having a bag but I would rather get some input from ones who have gone through it. I have a pretty good attitude and since I still have to take a pain pill to have a bowel movement I feel I will probably handle it okay. And my husband is very supportive - like me, he just wants the cancer gone!
What will it be like when I wake up from surgery? Painful? And what about my ovaries removed - will that be noticed right away? I am afraid I will wake up from surgery a hormone mess. Also, I love to work out and just be active - will that come soon enough or does the bag hold you back?

Thanks!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

......First off let me say that the last time I checked........I had no ovaries so I can't help you there but, I do have a colostomy bag and I am here to tell you that if your husband is level headed as he seems to be it will be the easiest transition you will ever have, at least it was for me.....
OK, about the pain...the intestines do not have any nerves in them so you will feel no pain as far as the intestine goes. You will however feel some at the incision where the ostomy comes out and is stitched to the stomach skin. It is minimal and will subside in a day or two. I had laproscopic surgery and all of my tissue was taken out of my tail and then it was sewn shut. That gets a little tender to say the least but nothing that you can't handle. It actually felt as if a small pair of socks was sewn up inside there and left. It will take approx 5 weeks to sit comfortably. There is a device that VickiCO used that KathiM told her about to relieve the pain when you sat, they can clue you in on that.
I stayed in the hospital from Tuesday morning surgery at 7 til 1 and went home Friday at 11am. Took 2 lortabs and rode 2 1/2 hrs home, no problem at all really...
It will be different with a bag, I won't lie to you. I did have one accident in bed where I rolled over and it came off but I do that now all the time with no problem. You will get use to it and find that its really no trouble at all.One thing......it is a lot smellier? than a normal bowel movement. Yes Maam you can clear a room with it, also your farting isn't controllable except through diet, but I generally hold my hand close to it in case it wants to "sing" to the masses. It isn't as loud as you might think so its easily muffled. Im sure that a hand towel or rag or some device is out there to mufle the sound but im old enough now I just let er Rip and hope for the best.....
An ostomy bleeds easily but nothing severe, if you happen to brush it with a fingernail while placing your prosthesis on then it will bleed somewhat but its all just capillaries and blood so it will bleed easily. As you clean yourself with toilet paper you may notice a red tinge on the paper but no worry its natural.
A good ostomy nurse is a Godsend. She or He will show you everything you'll need to know about it. Mine is flush against the skin, some stick out a little, some are round, some are oval,but most are approx 1" in diameter, about 32-34mm in size and are relatively easy to hide.
I do everything I want now with the bag.. I fish alot so when my buddies after to much coffee have to go to the bank to take a "break" I with my trusty bag can keep right on fishing..............God Bless you and your husband on your journey...you'll do fine...

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

I know it will be fine and actually I am tired of the pain I have day to day. Just scared now about going under. Plus, I have a 4 year old and if I have to have a bag to see your grow up than bring it on...however I am a wimp to pain. Or at least I think I am. And I have never had major surgery...just my colonoscopy and to have the port installed.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

You'll get good pain meds at the hospital...don't be a hero! Take meds before the pain gets too bad. If you stay ahead of it, it's much easier to manage. My best piece of advice? Get out of bed asap. I hurts like h&ll getting out of bed that first time but once you're up, not so bad. The more I walked, the better I felt and the less pain meds I used. (5 abdominal surgies in the last 2 yrs)

I wore normal clothes, no problem. Maybe just not too snug. Placement makes a big difference, I would think. Talk to an ostomy nurse NOW and have her mark the spot for the surgeon. This can be done based on how you like to wear your waistline, maybe even take your favorite jeans to the appt.

You can do this!

Kimby

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

What about clothes...can you still wear normal clothes like jeans? Does the bag show?

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I can't comment on the ostomy because in the end I didn't have one. I did go through the classes and placement markings, even wore a trial bag for a couple of days to prepare. But God and my surgeon spared me. However, Buzzard mentioned sitting comfortably. KathiM told me to sit on a neck pillow, turned with the opening to the back. It did work quite well for a while. I tended to get leg cramps if I sat on it too long though. I tried inflatable donuts, etc. Even used a padded toilet seat for a few days. Now I have found a donut that is more oval (like the toilet seat) than round. I am on the mend, though, so don't need it as much.

My very best to you. You will be fine.

Many hugs and prayers, Vicki

taraHK
Posts: 1961
Joined: Aug 2003

I have had a colostomy for the last 6 years. It takes some adjusting, both psychologically and also the 'practicalities'. But, it is truly not bad. I am very active physically (hiking, swimming, gym, yoga) -- no problem. I can wear almost everything I could before. And (pardon me bringing up a sensitive topic -- but it is important) my "private life" (sex) is also fine -- I invested in some covering lingerie initially but now we're fine without that.

I agree with Buzz that the stoma nurse (they are called different things in different places) is a very important person. He or she should meet with you before your surgery to explain everything and also to consult with you about placement. Placement is important -- you don't want right on your waist/belt line. My stoma is about 1.5 inches below my belly button and maybe 2" to the left -- this should be individually sorted out. And the stoma nurse will teach you how to care for the stoma before you leave the hospital.

There are a lot of different products available. I was given some free samples by the hospital, which helped me figure out what I wanted to use. I use an opaque bag (not see-through) with a filter, which eliminates odor. I use a one-piece pouch, some people use two-piece.

Also, you may want to talk with the stoma nurse about the possibility of irrigation. This is something like giving yourself an enema every day. This is what I do, and it is wonderful (no output during the day, and no pouch -- just a small patch). Not everyone can do this, especially if you had radiation before surgery (although I had radiation, and I am able to irrigate). Takes a little learning but now it is a mindless part of my morning routine. I had chemo after surgery and I waited until after my chemo finished before I started irrigating -- because of diarrhea with chemo.

When you wake from surgery, you will have some pain. Make sure you get good pain relief. And, get up and get walking as soon as you can. I believe this can really help with recovery.

I didn't have my ovaries removed, but my ovaries were "fried" as a result of my presurgical radiation -- so I went into instant menopause. In consultation with several doctors, I decided to go on hormone replacement therapy for a few years. I realize this is a pretty controversial topic these days, and one which needs to be decided individually, in consultation with trusted doctors. If you don't do HRT, you may experience menopausal symptoms. It took me a couple of months before I started having symptoms -- so I don't think you will be dealing with that at the exact time you are recovering from surgery (thank heavens!) -- takes a few months for those hormones to start adjusting, in my experience.

You have a great attitutude and it sounds like your husband does too. Everything is going to be OK! Meanwhile, please don't hesitate to ask me any questions -- and there are many others on this board who also have a wealth of valuable experience.

Best wishes,
Taraa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Ok, I lost (and still haven't found 'em!) my ovaries 6yrs ago due to uterine canzer. I never needed HRT but did, of course, go through menapause. It doesn't hit immediately, you have estrogen in your tissues. You just won't be producing anymore so, yes, you will get more and more hormonal. The surgeon will be sure you're safely home before that happens. hehehe

I also had a colostomy after my colon resection. It was quite a surprise and I had no time to prepare...I don't recommend that. Under full disclosure: I had a reversal may 08 after 9mos. That being said, I lived a very normal life with my colostomy: swimming, hot tubs, hiking, long road trips, sex, etc. With all the chemo issues, I probably did better with it than I would have without it. I had become so comfortable with it that I really didn't want the reversal (I was terrified!). Talk to a good ostomy nurse now. I live in a rural area and found it difficult to get much help. They all seemed to be good at preparing me but once I got home from the hospital they had no clue. I got most of my good info from the ostomy supply companies (get every sample you can!) and from: www.uoaa.org messageboards.

As JimBob says: better a bag than a box!

Kimby

beachinmom
Posts: 75
Joined: May 2008

Can't help you with the colostomy, but can w/ the ovaries. I had an abdominal incision and a combined hysterectomy ovaries, uterus and cervix along w/ my resection. I had two surgeons, my gynecologist started and my colo-rectal surgeon finished. If I remember right, they put a hormone patch on me right after surgery. I did have some hot flashes for awhile, but honestly could have been the pain pills as well as they tend to do that to me as well. I started w/ bio-identical estrogel that you rub on your leg at night, works great for me. Don't really notice too much of a difference than before---except that now after chemo I actually have more energy than I did for a while before I was diagnosed.

Check out the site www.hystersisters.com They are a wealth of information on hormones and have a great product for hot flashes called the chillow pillo. A sweetheart I met online sent me one and it was fantastic.

Good luck to you!!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I can't help you with the colostomy bag because I never did get one (although I had been prepped for one the night before surgery). But prior to this cancer diagnosis I was diagnosed with endometrial cancer back in 2001 (turned out to be a big mistake...slides were mixed up in the lab) and I ended up with a complete hysterectomy, ovaries, uterus, cervix... anything that wasn't nailed down came out ;)

Within 24 hours of waking from the surgery, I was thrown into menopausal symptoms. As soon as the ovaries are removed, you are thrown into menopause... how you will react is different for every woman. Some women have an easy menopause, some have evil ones. Apparently, I don't know if this is the truth or not, but when you are forced into surgical menopause, it is more noticeable than if you go into a natural menopause.

Either way... like any other side affect, there are meds to combat any discomfort. I was put on C.E.S. which is a Conjulated Estrogen that is plant based from the soya plant. I have never had any menopausal symptoms. I have just recently weaned myself off of them and am waiting to see if there are going to be any side affects to not being on them ;)

If you have the surgery from the front with an abdominal incision, then there will definitely be some discomfort BUT there doesn't have to be! Just make sure you go over, with your surgeon, what the Pain Management plan is and if you find it's not working for you, what is Plan B :) They are all very used to surgery and pain management... so know all the tricks and meds that are needed :)

Hugggggs,

Cheryl

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

You have gotten some good advice here. As mentioned there is some pain after surgery but usually controllable with meds. Walking is very important. I used my Ipod to help motivate me to dance up and down the halls. The bag, right at first, isn't so bad as it takes a few days before anything comes into it. Then it is quite depressing until you are able to use an opaque bag, that was a great boost for me. Now, of course, it is like brushing teeth or anything else of daily care that become routine. I can do all activities. However, pay attention to limiting how much you lift. The surgeon and ostomy nurse said to limit it to about 10 lbs. I, of course, didn't and developed a hernia of the ostomy so it sticks out more. You can, when the ostomy size has stablized, get a belt that goes around it to give the abdominal wall support at the site and help to prevent that. I use several deodorizers which help alot. You can usually, but not always, tell when gas is coming as there is some increase in pressure, and holding the hand against it helps to lessen the noise. I wear normal clothes- my belt cuts across the bag so I have to periodically check to make sure it isn't all getting blocked on top. There may be an occasional leak but it is rare and often predictable. I found that using an extra wafer, called an Eakin Seal, helped with that problem. As others have said a good ostomy nurse is most important.

With all that is said, in a short time you will get used to it and just live a new, normal life. Good luck and God Bless.

Dick

tiny one
Posts: 467
Joined: Jan 2009

When my surgeon was doing my resection my cancer was lower than expected. I woke up with an ileostomy. I had no idea that this was going to happen. My surgeon at this point told me I needed radiation and chemo. This was a big shock. My ostomy was on for 10 months and then reversed. I managed my bag very easily and had very few problems with it. The trick is the appliance that you use and where the bag is placed. Jeans aren't comfortable at first but after you heal you'll me able to wear most anything. No one can tell that you have a bag unless you tell them. Only 2 times in 10 months did I have problems. There is a good book that you might find helpful. It's called The Ostomy Book by Barbara Dorr Mullen. Before my resection they did a spinal which really helps after you wake up and for a few days after. I had an incision a drain in and my ileostomy. I was on a morphine pump. My pain was managed very well. I don't know though about having the ovaries removed. I still have mine. Due to my treatment I no longer have periods anymore. I actually at times question having my reversal done. I've had alot of pain and soreness from the frequency of the BM's. It if weren't for this lomotil I take I would seriously consider putting the bag back on. At first you won't be able to do as much with having the ostomy. But this is only due having to heal from the surgery and the incision. After though you can pretty much do anything. I did and not much slowed me down. God bless.

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

All of your replies helped me realize I can get through this...it will just be an adjustment. Small price to pay to get the cancer out of my body!!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I have an ostomy and wear a bag that I think is great...If you want I can send pics. They won't show anything other than the placement,and bag,if the both of you agree I will send a pic of the actual ostomy. There is nothing to be scared of, it is something that you can realize for real if you actually see it. I can tell you all the ins and outs of how to hide it and how to manage it. They even use an enema type device for those that want freedom from it for 12-24 hrs at a time, you would still have the "prothesis" on but it is a stoma cap instead of the bag. It is normally for people working and intimate time. It takes about 45 mins in the morning to do it this way. I haven't tried it yet but may in the future. I have a set way of taking care of mine and I can give you all of the types brands sizes etc and even send you a sample to look at and try on just to get a feel for it...Just send me an address and tell me if you are interested in any of it, pics or just the complete setup on the bag system....my email is cjpowers@brtc.net.....like I said there will not be anything out of context on the pictures..........God Bless ya both....

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

Hi there - I actually met with a ostomy nurse yesterday and it went well. The bag doesn't scare me so much now because I 'tried one on'. She answered a lot of questions too.
Thank you so much for all your answers. I am SURE I am going to have more. She talked about the flushing too so that made me happy. We like to go out in the boat in the summer so that is good to know, flush and cap it in the morning and throw on a swimsuit (I think bikini's are out now....) and head to the lake!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Thats great to have already talked with the ostomy nurse..It is really the unknown that scares ya, but when actually seeing it and trying it on its not really bad at all....Good Luck with it all and God Bless.........

rmcgraw
Posts: 15
Joined: Mar 2008

There is a wonderful website devoted to ostomies. The URL is www.ostomyland.org. It is a great group of people from all walks of life and from all over the country that have ostomies. Be it a colostomy, ileostomy, etc. There is great discussion about appliances, athletics, pregnancy, etc. I had a temp ileostomy and found this website by chance. There is also some great discussion on irrigating so that you can cap your stoma and control when and where it empties. My only advice to you is placement is everything. Dress in whatever you normally do and have them mark accordingly. You could even ask to try a bag at that location for a couple of days to be sure that sitting, dressing, etc will be comfortable to you. Check out the website and best of luck to you!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I also can't comment on the ostomy, but definitely on the surgical menopause. My initial chemo after resection didn't affect my periods much, but my recurrence was on my right ovary so they did a full hysterectomy, cervix included. I really couldn't tell you how much of the hot flashes were due to that and how much were due to the chemo that followed the surgery. I never took any kind of hormone replacement and really don't have too many complaints! I think the hormone loss and the omentum removal contribute greatly to my weight issues, but I am finally getting some of the extra weight off, so that's all good as well. No female in my family has ever made it to menopause so we don't actually know when it would occur naturally anyhow, nor do we know how it would be tolerated! We think my oldest sister is now in premenopause; she actually still has all her feminine stuff and will be 52 this year. I've never really had crazy cycles anyhow, so perhaps that has a lot to do with how our bodies react to menopause, surgical or otherwise, in the end. I'm sure you will do just fine; your husband sounds very supportive, and I think that will be the deciding factor for you in the long run! When our loved ones offer us unconditional love and acceptance, we can forage on through just about anything!
mary

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