Meet & talk to fellow OstoMates Support | Friendship | Dating 20,848 members

I'm a newbie

Posted by stormingstoma1, on Sat Apr 25, 2020 7:57 pm

Hello. I'm New to all this. Still working out the forums. I've seen people giving so much advice and I'm reading so many blogs.

I have a colostomy bag, permanent new addition to my body. Five weeks and counting. I'm not entirely sure how I'm feeling about it yet cause I'm on my 5th cycle of chemo and my emotions are pretty crappy anyway. ( no pun intended) ... to long a story to share so in short, have bowel cancer, tumour very large, had chemo to shrink tumour before surgery. Surgery success, cancer gone, clean up chemo, 3 cycles left to go. My issue is sex. Apart from what my body has gone through, I'm ready to continue my sex life. My husband is more than eager and says he's glad I'm still alive and doesn't care about the stoma. 

I'm the one who it's bothering. It's just there. Dangling like an extra piece of flappy skin and it farts like the clappers. As in it sounds like someone clapping which has really put me off even trying to have sex. Now, I have a sense of humour I really do and I'm hoping this is just a chemo, hormone blip. However, it really is making me uncomfortable. Also, I'm a plus size lady so this thing sticks out like a sore thumb more than it would a smaller person. Again, chemo gain so it should shed when all is done but that's months away. I love my fella and even though he's a patient person I feel I'm depriving him of normality because i hate my new accessory. Well, I don't hate it really. I actually find myself cradling it like a weird baby belly. Or praying it won't pop off, again.

I'm not sure if I'm looking for advice or if I'm asking if anyone else has or had this feeling of wanting to leave your own body for a little while until Its all over. Does it get easier. Please no one tell me to get one of them cover up bands. It won't work on me. They just don't appeal to me. I'm still sore with a waistband. I'm struggling mentally to adjust sex wise. Otherwise, I'm ok with it. I'm alive and I actually find my stoma fascinating. It's the bags I hate :(

Thanks for reading x

Hope you all.have a lovely day.

Reply by w30bob, on Sat Apr 25, 2020 8:09 pm

Hi Storming,

  Welcome aboard!  I don't have a colostomy, so I'm not the one to answer your questions........I'm just in charge of the Welcoming Committee and wanted to say HELLO!  You will find all the answers to your questions......and then some.  You sound like you've got a good sensible head on your shoulders, so you're already ahead of a lot of folks.  Stay tuned and the replies to your post will start flowing in.  Glad to have you in our "crew".

regards, 

bob

Reply by mild_mannered_super_hero, on Sat Apr 25, 2020 9:03 pm

hello and welcome to the site. you might want to ask your surgeon or ostomy nurse if you qualify for irrigation. irrigation will give you back an active lifestyle and you wont have to wear a bag, but rather a stoma cap or "patch" they look simular to a large bandaid.  not everyone qualifies but most cancer patients do, since the remaining colon is healthy. good luck

Reply by xnine, on Sat Apr 25, 2020 9:09 pm

If you do not care to ware a band, time to look at different positions, back, on top, you have to experment to see  what works. For me a band works.

Reply by stormingstoma1, on Sun Apr 26, 2020 4:43 am
mild_mannered_super_hero wrote:

hello and welcome to the site. you might want to ask your surgeon or ostomy nurse if you qualify for irrigation. irrigation willThankyou give you back an active lifestyle and you wont have to wear a bag, but rather a stoma cap or "patch" they look simular to a large bandaid.  not everyone qualifies but most cancer patients do, since the remaining colon is healthy. good luck


Thank you. Lockdown restricts communication with surgeon and my stoma nurse is very busy but I will definitely ask. I didn't even think I had this option, thank you x

Reply by Bill, on Sun Apr 26, 2020 6:25 am

Hello stormingstoma. Welcome to this site, where you will no doubt get some ideas and advice that will help you on your journey.

I will reiterate that irrigation could resolve the problems you illustrate in your post, in that it would enable you to not have output during the day and therefore, you would not need to use a 'bag'.

Personally, I prefer a stoma plug, which helps me with a peristomal hernia  problem, but if I didn't have that, a stoma cap would do just as well and both these devices cover up the stoma in an acceptable way, which would enable you to take part in almost any activity you wished.(including sex.) 

I was advised that Irrigation should not be attempted until at least 6 weeks after the operation, so, by the time you discuss it with a stoma nurse, you should be beyond that time. 

Let us know how you get on.

Best wishes

Bill 

Reply by ron in mich, on Sun Apr 26, 2020 9:26 am

Hi Storm welcome to the site, what about taking some of the gas reducing meds before having a romp, but seriously most men overlook minor things and just want to get on with it. Your in the early stages of ostomy and it does get to be second nature after awhile.  good luck 

Reply by newyorktorque, on Sun Apr 26, 2020 5:59 pm

Hey stormingstoma1.  Welcome to the 'club'.  So glad you found this site. 

I have an ileostomy (almost 4 yrs) and I totally understand your concerns.  I cannot comment too much about sex as I havent engaged in such activities for a long time. But its something I have thought about post surgery.  Its obvious you are just not quite ready.  I'm sure eventually that day will come.  Perhaps its simply all the 'newness' you are experiencing.  Ostomies can be overwhelming especially in the beginning.  Fortunately you have a very understanding hubby and I wouldnt be surprised as time goes on you will become more comfortable with your body.  Then you will be ready for sex.  Perhaps you can look at it as a goal.  Get yourself some racey lingerie and.....VaVA Vooom!

I'm a little surprised you cannot see an ostomy nurse. They are very helpful in almost all things ostomy. It does not have to be the nurse who assisted you while you were in the hospital. We have a wound care / ostomy clinic downtown where I live .They see patients on an outpatient basis. I just made an appointment to see mine on Wednesday.

Get used to those ostomy farts it could be worse!  My stoma will cut one loose at the most inconvenient times lol.  Hope you are dismissed from chemo soon and adjust to life with an ostomy.  Its not as bad as it may seem and yes it will get easier.  

 

Reply by stormingstoma1, on Mon Apr 27, 2020 5:54 pm

Thank you all. It's all valuable advice. I'm in the UK, so things are a little different. Our nhs is fantastic but I am limited to what I can get on prescription. When I go back to work, it won't be so bad but that's months away yet. Still, it will give me plenty of time to adjust. Work is the next issue on my list of things to get my head around. My friends would fall down laughing the minute my bag starts to chatter lol. My stoma nurse is fantastic and she or one of her team rings me regularly but lockdown for me is strict because of chemo. I can't leave my house unless I really have to. I've been stuck indoors for 10 weeks now since before my op so I could still go ahead and have it. When I came out of hospital it genuinely was like the scene at the beginning of the walking dead. I had a bit of a shock. So, unless I get an infection or become seriously ill my only day out is to the chemo unit and back. Hence why I blurted out my worries here. So again. Thank you xx

Reply by Bill, on Tue Apr 28, 2020 3:28 am

"Our nhs is fantastic but I am limited to what I can get on prescription."

Hello stormingstoma.

Just a quick note to say that I was never really informed as to what I could/should have via the NHS prescription service except for the essentials. However, what I have found in practice, is that there are many stoma related things that are available on prescription, if you ask! I order my stuff online through our GP practice and, so far, they have not bounced any of my orders, and I change them regularly to try stuff that I have not tried before.  For example: did you know that you are allowed 3 hernia belts per year? These little things are worth knowing  but it was the manufacturers that informed me about this rather than the NHS. 

Best wishes

Bill 

Reply by stormingstoma1, on Tue Apr 28, 2020 7:10 am
Bill wrote:

"Our nhs is fantastic but I am limited to what I can get on prescription."

Hello stormingstoma.

Just a quick note to say that I was never really informed as to what I could/should have via the NHS prescription service except for the essentials. However, what I have found in practice, is that there are many stoma related things that are available on prescription, if you ask! I order my stuff online through our GP practice and, so far, they have not bounced any of my orders, and I change them regularly to try stuff that I have not tried before.  For example: did you know that you are allowed 3 hernia belts per year? These little things are worth knowing  but it was the manufacturers that informed me about this rather than the NHS. 

Best wishes

Bill 


That is really good to know. Thanks. It was all a bit of a blur after the op. Not much info really went in once I left the hospital. Unfortunately, my stay was a very brief one as I was on my feet sooner than they expected. (I'm not keen on hospital beds). I only stayed 5 days and covid19 was already the worried topic amongst the ward. So my care wasn't so much neglected just rushed. Prescription s weren't really discussed in detail. I deal through the stoma nurse and the company who supply my stuff told me unless my stoma nurse says it's ok, they can't change my order until I'm over the first six weeks. I'm guessing because my wound is still in need of check ups. I did try another company for samples and they told me I can do my orders online without issues or asking permission from anyone. But then I really do have a nurse who knows her stuff. She knew I'd have trouble with mine before I left hospital. I have an inverted stubborn stoma. She's not wrong. I know I'm going to need a belt in the future to. I have two very manual jobs to go back to. Lifting kids is worrying me. But ill worry about that later 😁 

Reply by Puppyluv56, on Wed Apr 29, 2020 3:26 pm

Storm.

They affects of chemo can be horrible I have had more than my share. Take baby steps. It will all come together. Your husband seems to understand, mine did. Don't rush things and get disappointed. It takes time to make friends with your new hardware. None of it is pretty. I agree with MMSH. With a Colostomy, you may have the option to irrigate. It not only relieves all the daily, sometimes hourly attention To your pouch, it minimized the accesories as well! This is a much added boost to your confidence! It completely changesd my life for the better. Talk to your Ostomy nurse when you can. They usually want you to be 4-5 months out from surgery. Your chemo may even postpone that time frame. Worth a look. 
Take Care, 

puppyluv

Reply by stormingstoma1, on Wed Apr 29, 2020 4:57 pm
Puppyluv56 wrote:

Storm.

They affects of chemo can be horrible I have had more than my share. Take baby steps. It will all come together. Your husband seems to understand, mine did. Don't rush things and get disappointed. It takes time to make friends with your new hardware. None of it is pretty. I agree with MMSH. With a Colostomy, you may have the option to irrigate. It not only relieves all the daily, sometimes hourly attention To your pouch, it minimized the accesories as well! This is a much added boost to your confidence! It completely changesd my life for the better. Talk to your Ostomy nurse when you can. They usually want you to be 4-5 months out from surgery. Your chemo may even postpone that time frame. Worth a look. 
Take Care, 

puppyluv

Thankyou. I'm definitely going to keep this in mind. I think irrigation might be a more promising option in the future. If anything, my skin is so sore and uncomfortable more so during chemo than when I first had my colostomy fitted. I'm still having to measure, I still misjudge where I'm placing it then over compensate when I do the next change. I'm angry with it and actually have arguements with it. My kids think I've gone a bit crazy. I think I'm going a bit crazy. But it's definitely the actual bags I'm hating. One of my twins actually asked if I was growing another tumour on the outside as it quickly filled up and gurggled. He thought it was hilarious that he witnessed me going to the toilet in such a casual way without blinking. I, however, felt only the weight pulling at my skin and the stinging pain. So, yeah, right now I know it's the chemo. I'm taking chemo everyday for 14 days as well as IV one day for 6 hours a time so it's pretty horrible. With each cycle it gets worse and also the effects last longer. I am literally counting my days until I ring that bell for the end of chemo. And to walk bare foot without my feet feeling like I stepped on shards of glass.

Reply by Puppyluv56, on Wed Apr 29, 2020 5:37 pm
stormingstoma1 wrote:
Puppyluv56 wrote:

Storm.

They affects of chemo can be horrible I have had more than my share. Take baby steps. It will all come together. Your husband seems to understand, mine did. Don't rush things and get disappointed. It takes time to make friends with your new hardware. None of it is pretty. I agree with MMSH. With a Colostomy, you may have the option to irrigate. It not only relieves all the daily, sometimes hourly attention To your pouch, it minimized the accesories as well! This is a much added boost to your confidence! It completely changesd my life for the better. Talk to your Ostomy nurse when you can. They usually want you to be 4-5 months out from surgery. Your chemo may even postpone that time frame. Worth a look. 
Take Care, 

puppyluv

Thankyou. I'm definitely going to keep this in mind. I think irrigation might be a more promising option in the future. If anything, my skin is so sore and uncomfortable more so during chemo than when I first had my colostomy fitted. I'm still having to measure, I still misjudge where I'm placing it then over compensate when I do the next change. I'm angry with it and actually have arguements with it. My kids think I've gone a bit crazy. I think I'm going a bit crazy. But it's definitely the actual bags I'm hating. One of my twins actually asked if I was growing another tumour on the outside as it quickly filled up and gurggled. He thought it was hilarious that he witnessed me going to the toilet in such a casual way without blinking. I, however, felt only the weight pulling at my skin and the stinging pain. So, yeah, right now I know it's the chemo. I'm taking chemo everyday for 14 days as well as IV one day for 6 hours a time so it's pretty horrible. With each cycle it gets worse and also the effects last longer. I am literally counting my days until I ring that bell for the end of chemo. And to walk bare foot without my feet feeling like I stepped on shards of glass.

From the perspective of a child! Too funny. If we could look at all of this as easily. What drug are you taking? Chemo or immunotherapy?  
I know all of the drugs are horrific! Neuropathy is horrible with most of them. Mine only started lately, two years after the last chemo but I have had Radiation twice since then. I was give Magnesium to help during chemo but did not take any since until my hands started going numb and hurting so I bought some magnesium supplements and it has not happened since. I hope they are giving you something to combat that pain. It all is accumulative. So you have three more cycles or three more days total? I hope it is the latter. 
Time will take care of a lot. When I finally found a product that worked well for me and then irrigation, things changed.

So hope yours gets better fast. Sounds as if you have a lot on your plate with all this and children.

Puppy

Reply by Padfoot, on Wed Apr 29, 2020 10:42 pm

Hey Storm,

You already have had a lot of good advice here, so I will keep my comments short. First off, I would wait to try irrigation until you have finished and recovered from chemo. Your risk of infection is higher right now, and your immune system is compromised. That said, irrigation can be a huge relief, so I hope it works for you. It will take some practice, so don't be discouraged if it doesn't go perfectly the first time. Look up ostomy irrigation on YouTube; there are lots of videos that will help you understand the process. Secondly, have you had a look at Vanilla Blush products? They have great lingerie and bathing suits as well as hernia belts, and it is lovely stuff! Check them out at www.vblush.com.  You might find some sexy lingerie that will distract from your ostomy. And finally, the noises your stoma makes may well settle down. Your system is out of whack right now, with the chemo and probably your diet will vary, depending on whether you have chemo mouth and everything tastes awful. That will pass, and eventually, you will settle into a rhythm. It does get better. In no time, you will be giving advice to a new "newbie".

Reply by stormingstoma1, on Fri May 01, 2020 2:20 pm

Puppyluv56...My kids are 17 lol but it's the way I've brought them up. They have my sense of humour...well sort of. I'm on Capecitabine 14 days twice a day tablets and Oxaliplatin drip. My arm is in agony, constantly cold when the rest of me is boiling so night time is restless sleep. They had to reduce my dose because of the nerve damage and pain. Nothing much works. Then I had an allergic reaction to the oxalipatin so now they give me a wonderful piratin...not sire on spelling but basically it's like gin and tonic 😊😁 and yes Padfoot, I have what I call dead tastebuds. I can't wait to taste butter and cake again 😛

Reply by Puppyluv56, on Fri May 01, 2020 4:45 pm
stormingstoma1 wrote:

Puppyluv56...My kids are 17 lol but it's the way I've brought them up. They have my sense of humour...well sort of. I'm on Capecitabine 14 days twice a day tablets and Oxaliplatin drip. My arm is in agony, constantly cold when the rest of me is boiling so night time is restless sleep. They had to reduce my dose because of the nerve damage and pain. Nothing much works. Then I had an allergic reaction to the oxalipatin so now they give me a wonderful piratin...not sire on spelling but basically it's like gin and tonic 😊😁 and yes Padfoot, I have what I call dead tastebuds. I can't wait to taste butter and cake again 😛


Wow Storming,

You do get the bad stuff! Anybod the Platón brothers are cruel boys!  I had Cisplatin the first two times and did fine. I had chemo at my desk. Lol I worked as Case Manager for a large Oncology practice. No side affects, did not lose my hair. It was great. The last time, I got double the dose of Cisplatin and that crap put me in bed for 10 days every time. Weak, nausea, sob. Lost all my hair the first treatment. You name it! had it for 3 consecutive 8 hour days every three weeks! It was hell and the accumulated affect was worse!! I also got Topatecan. Not pleasant either at high doses. I can certainly relate to some of your issue but by neuropathy was not bad until lately. Have not been on here as much just because my hands hurt to hold the phone and type. So what did I do all day, Baked cookies! Lol Greek Easter cookies call Koulourakia. The recipe make dozens and dozens of cookies. You roll them and make like a cancer ribbon. They are more like an English tea biscuit and so much work! Worth it though! Done now so I will have them for breakfast with coffee for a week or two! 
haha Adult kids can be worse! Mine is 40 this past year! Crazy to the none but lots of fun to be around!
hope things get better for you!  There is an end to treatment soon! Keep that in focus and you will do well! 
puppyluv 

Reply by Padfoot, on Fri May 01, 2020 10:48 pm
stormingstoma1 wrote:

Puppyluv56...My kids are 17 lol but it's the way I've brought them up. They have my sense of humour...well sort of. I'm on Capecitabine 14 days twice a day tablets and Oxaliplatin drip. My arm is in agony, constantly cold when the rest of me is boiling so night time is restless sleep. They had to reduce my dose because of the nerve damage and pain. Nothing much works. Then I had an allergic reaction to the oxalipatin so now they give me a wonderful piratin...not sire on spelling but basically it's like gin and tonic 😊😁 and yes Padfoot, I have what I call dead tastebuds. I can't wait to taste butter and cake again 😛


Yes, the Capecitabine is mostly tolerable, but the Oxaliplatin is torture. My neuropathy is gone after 4 years, except some mild heat and tingling in my hands and feet occasionally. I remember everything, including water, tasting like rotten garlic. Yuck. Hang in there, it does get better! 

* Please, do not post contact information like email, Facebook or Twitter accounts, or phone number. These will be removed by the Administrator.
All times are GMT - 4 Hours
Currently online: 5    
1 members & 4 visitors
Sleepy (m)
 
 
Welcome to MeetAnOstoMate - the largest online community for people with an ostomy.
If you have questions or just want to meet and chat with others, join us and enjoy our great community.