Has anyone had a Colostomy bag after tumor resection?

[AnnieFighter]

I have a re grown ovarian imature teratoma that I am waiting to have removed. Chemo caused it to be necrotic so it was drained and is now only 6 cm rather than the 10cm. It's position is low over my vagina where my uteturus used to be. It also choked off my right ureter so that my kidney will be removed. It is interfering with bowel function so it is likely my colon will be damaged during the surgery leaving me at least temporarly with a colostomy bag and then a subsequent surgery to restore rectal function. I am concerned that I am at risk for intractable infection as I am diabetic and skin disorders as I am sensitive to adhesives. Three months with bags of stool stuck to my skin sounds really unpleasant and dangerous. Has anyone here dealt with this before? How can I protect myself from possible complications?

[MargaretJ]

I had my tumour (same place as yours) removed on Dec 5th with an associated colostomy. The chemo had done nothing to the tumour and I was dreading the colostomy. Like you I am diabetic and allergic to adhesives. The colostomy is a piece of cake! I change the bag immediately it fills, because I need at least 3 changes each time. A low descending colostomy produces almost solid faeces. I have replaced all my ordinary knickers with light support pants and the firm that supplies all the necessary accoutrements is marvellous. They deliver within 2 days! They even delivered extra bags to my daughter's in London as I did not bring enough bags away with me! I have access to a specialist stoma nurse who checks up on the stoma. The stoma looks like a red doughnut to the left of my navel. I live alone so no problem with intimate moments but you can get a waistband that covers the whole thing up.

I was terrified of having a colostomy, and mine is not reversible, but it has been the least of my problems as the position of the tumour made the op long and made me feel quite ill after. I am now looking forward to getting back home and driving again.

[MargaretJ]

Annie it really is not as unpleasant or dangerous as it sounds. They supply adhesive remover and I use boots sensitive baby wipes to clean myself. The faeces do not touch the skin only the stoma which is actually part of the inside of the colon. I use nappy sacks for disposal and everything goes into a lined, lidded bin in the bathroom which is then emptied, in its turn by tying the the top of the liner and disposing of it in my dustbin. No prblem so far. They say there is no smell but you get a deodorant spray with the kit.

Good luck and don't worry!

Margaret

[AnnieFighter in reply to MargaretJ]

Thanks for your reassurance! had some miss haps individuals don't know wy i don't come out any more, but that will resove soon

[MargaretJ]

My stoma tends to be active at night but I too have had mishaps and ended up getting in the shower with all my clothes on. I still go out though! I bought myself a make up bag which is big enough to hold 3 pre prepared stoma bags, a pocket pack of baby wipes and a can of adhesive remover. I have not needed to change the bag while out yet but I will use disabled loos as they have more room. My specialist nurse has provided me with a card to wave when need is urgent which would also give access to staff loos in an emergency and the address of where to write to to buy a key to fit locked disabled loos. I have told everyone I now have a "bum on my tum" and they usually don't want to know any more. When it all settles down (in about 6 months) I am going to learn to irrigate, which will give me more control. There is quite a good video on the colostomy association website which demonstrates how this is done. I am getting my bathroom altered to make this easier.

It may not be easy for you to be as 'up front' as I am. I am very "pushy" and bossy (former teacher and union activist) and an absolute control freak so I won't let this beat me. Not everyone is like that. I am inclined to be a bit 'in your face' with bodily functions, internal exams etc I treat as like "having dynarod in, unpleasant but necessary!". Not everyone can be like this I know.

They say it doesn't smell but I now wear scent all the time because I think I can smell it. Mind you my sense of smell is very acute these days.

If you are still worried about accidents like the bag pushing off ask your stoma nurse about the flexible seals which give extra security and also the bags that can be held on with a belt for extra security. I use those when the stoma is being very active and I am going out just to give a bit of extra security. I also change the bag often, even if it is not full, to give myself peace of mind.

I have also found Tesco Value baby wipes at 48p for a pack of 72 are ideal and their nappy sacs are better than the free ones from the company. I also bought a disposable nappy system for the bathroom which ensures there is no smell hanging round the house. I got Tommy Tippee because Boots had sold out of the cheaper one on the day I went. I believe Mothercare have one as well.

I hope this helps and that you will soon find yourself less under the control of the rearrangement of your digestive system.

My worst experience has been the stoma going on extruding after I have removed the bag. I now keep a roll of kitchen paper to hand to catcth this if it happens again and, when I get my bathroom redone, I shall be able to sit on a stool to change the bag with the loo handy for disposal. My colostomy is a low descending one so contents are fairly solid and I still can't tell if it is wind or faeces when the stoma is active, I keep having to check!

I hope this helps! Good luck and do keep in touch!

Best wishes,

Margaret

[AnnieFighter]

Thanks so much for your help! I've prepared the kit gotr going out and it helps to know I have some bags cut to fit should I need to change them for any reason.

I used to be quite outgoing, but my painfully shy Mother has been living with me since I found out I have cancer last june 2011. I don't want to impose on her and will ot drive myself with somuch pain killer onboard. The ain killers also make me constipated and it is hard for me to stay hydrated.

Thanks so much

Annie