Hi, my name is Darkblu73! How has everyone managed the transition to a stoma bag?

Darkblu73

I have just gone through surgery to have bowel removed and colon.
Now have  stoma bag. Still in hospital starting recovery. Going through the new life start and living with my stoma. How has everyone managed the transition. I didn't have much time to think about it was admitted and when discussed was in surgery next day. 

Albus_Scope

Hiya @Darkblu73 and welcome to the community.

There's a couple of stoma bag users in this community, so you're in good company. I'm sorry if you're struggling with the transition, but it's very early days yet and I hope you recover super quick.

I'm just going to pop your post into a different category, so more people in the know will be able to see it and offer some support.  I hope that's ok? 

Darkblu73

Albus_Scope said:

Hiya @Darkblu73 and welcome to the community.

There's a couple of stoma bag users in this community, so you're in good company. I'm sorry if you're struggling with the transition, but it's very early days yet and I hope you recover super quick.

I'm just going to pop your post into a different category, so more people in the know will be able to see it and offer some support.  I hope that's okay.
@Albus_Scope Thank you xx

Darkblu73

Ada said:

@Darkblu73 Sorry I don’t have any advice for you. I only nudged in on your post. To say I wish you a smooth recovery after your operation. 
Sending hugs 🤗 

Thank you @Ada much appreciated recovery is going well hopefully end of week maybe home. Hope you are good. Sending big hugs back to you..🤗

Sandy_123

Hi @darkblu73 an hello from me too. How are you getting? Have the Hospital team shown you how to self care with your stoma and how to change the bags and how to reorder? They are usually good in doing this. Wish you well on your recovery 

Darkblu73

Sandy_123 said:

Hi @darkblu73 an hello from me too. How are you getting? Have the Hospital team shown you how to self care with your stoma and how to change the bags and how to reorder? They are usually good in doing this. Wish you well on your recovery 

@Sandy_123 Getting on good thanks. Just done 1 change of bag with Stoma team, went well over whelming after when thinking back, did very good 1st attempt managed. Pain from surgery is still severe can walk around a little not far standing is good for short while, sitting in chair is painful can only manage few moments time. Stoma team have been great with discussing mental health to help me process what I have gone through do quickly. As surgery happened very quick so did not meet anyone prior to discuss about Stoma bag etc. 
A new journey which I will fully embrace...

Albus_Scope

I'm very glad to hear you're getting some great aftercare @Darkblu73 and congrats on the first bag change!
 It's a lot to all take in so quickly, so just be gentle with yourself and allow yourself some time to process it all when you can.

Sandy_123

That's good news about the team looking after you. We'll done on 1st change too. It will take some time to process. Your doing good so far just take time to rest to aid recovery after sugery

Mach109

Hi Darkblu73.  I had emergency surgery rather like you seventeen years or so ago and have been living with my stoma and bag changes and things like that ever since.  It was a life saver and I have even had the second half of an active working life with it so it has not really been too much of a hindrance.  I hope that you are able to settle down with the inevitable niggles that bags and such things throw up occasionally.  What kind of bag has the hospital provided?  There are good bags and bad bags...

Darkblu73

Mach109 said:

Hi Darkblu73.  I had emergency surgery rather like you seventeen years or so ago and have been living with my stoma and bag changes and things like that ever since.  It was a life saver and I have even had the second half of an active working life with it so it has not really been too much of a hindrance.  I hope that you are able to settle down with the inevitable niggles that bags and such things throw up occasionally.  What kind of bag has the hospital provided?  There are good bags and bad bags...

I have a drain bag 1 piece. I know you can get large ones mine is medium  so far I am doing okay. Still swollen and in pain it has only been 4 days out of hospital. Walking a little every day. Just at night I am find8ng hard to sleep.
@Mach109, thanks for your reply. I didn't have a choice it need to been done. They have removed all of my colon, due too cancer but need to go back for part 2 of surgery for my rectum area. So long journey still ahead. 

rubin16

Hi, Hope your recovery is doing well and sorry to hear you had cancer and had to have a stoma fitted. I have an ileostomy (stoma) and have had it for roughly 8/9years due to very bad crohns disease. I had it fitted when I was about 23/24 years old and been told theres a chance to have it reversed but too scared to have surgery again or have my crohns flare badly again to the point it nearly killed me. This is my second stoma, I had one fitted then had it reversed and within months my crohns flared and I was rushed to hospital again for emergency surgery and had this one ever since. I have just come to accept it as it keeps me well and not had a really bad flare since having it fitted.

It does take some time to adjust though, I was really self consious and felt ashamed of it for a while and was scared to meet anyone incase they were grossed out by it, but the girls I have dated since having it had no problem and just accepted it. You just learn how to manage it after a while and learn what foods work for you and what doesn't, like for example some foods and drink make it overactive and some make it settle down (Jelly babies and gummy sweets are good if your stoma is ever overactive), You learn to take a bag out with you with supplies just in case (as on the rare ocassion it can leak) and just learn to take regular toilet breaks or learn where the bathrooms are. Other than that if you learn to manage it well people have told me that unless I told them they would of never of known I had one, you just get used to it after a while and get into a routine of changing it (I find mornings are best for this before I have eaten) but it can vary person to person so you'll soon find what works for you.

I do wish you a speedy recovery and hope all the best for you in the future, and the stoma nurses are really good and are always on hand if you ever have any questions or worries.

All the best,

Rubin

Darkblu73

rubin16 said:

Hi, Hope your recovery is doing well and sorry to hear you had cancer and had to have a stoma fitted. I have an ileostomy (stoma) and have had it for roughly 8/9years due to very bad crohns disease. I had it fitted when I was about 23/24 years old and been told theres a chance to have it reversed but too scared to have surgery again or have my crohns flare badly again to the point it nearly killed me. This is my second stoma, I had one fitted then had it reversed and within months my crohns flared and I was rushed to hospital again for emergency surgery and had this one ever since. I have just come to accept it as it keeps me well and not had a really bad flare since having it fitted.

It does take some time to adjust though, I was really self consious and felt ashamed of it for a while and was scared to meet anyone incase they were grossed out by it, but the girls I have dated since having it had no problem and just accepted it. You just learn how to manage it after a while and learn what foods work for you and what doesn't, like for example some foods and drink make it overactive and some make it settle down (Jelly babies and gummy sweets are good if your stoma is ever overactive), You learn to take a bag out with you with supplies just in case (as on the rare ocassion it can leak) and just learn to take regular toilet breaks or learn where the bathrooms are. Other than that if you learn to manage it well people have told me that unless I told them they would of never of known I had one, you just get used to it after a while and get into a routine of changing it (I find mornings are best for this before I have eaten) but it can vary person to person so you'll soon find what works for you.

I do wish you a speedy recovery and hope all the best for you in the future, and the stoma nurses are really good and are always on hand if you ever have any questions or worries.

All the best,

Rubin

@rubin16, Thanks for your message sorry to hear that reversing didn't work.
Mine us permanent, have more surgery as they still need to work on what to do with my Rectum area they have taken everything away they can. Home now to build my strength for more surgery. Going to group meetings cancer and stoma. 
Will be positive, you have too  my daughter is expecting her first child my first gran child so keep thinking of them. Thanks James

CATP

hi @Darkblu73 i have so much hope for you and wish you the very best with your fight with cancer. 

i hope this gives you some strength (i apologise if i waffle) as my mum had been given the dreaded stage 4 label with her cancer and it had spread so she had to have a hystorectomy to.she was diagnosed with cancer the day the covid lockdown started so didnt get to start the chemo and radiotherapy in time-we believe this is what led to the spread. she ended up getting the treatment, with my support staff and the operations were straight after,i made a picnic basket for her full of treats,some marks and spencer pyjamas for when she goes into hospital,some new sketchers mule slippers so she can walk around the hospital and lots of crime books from waterstones (she went mad when she realised i paid brand new and didnt get them used) and bonjela in case she got ulcers from the treatment,ginger tea to help with sickness etc.

she had the stoma op done and she thought life was over,she was really depressed,she ended up being pyschiatricly asessed and after the op she was negleting the wounds so she developed both necrotising faciatis and sepsis,and even though she didnt have mental capacity at the time due to the sepsis confusion,she agreed to being given no treatment if she stops breathing (i forget what its called but its a legal document).

she was in ICU for a long time, and she didnt recognise me for many weeks but she recognised my sister and dad.she blamed me and hated on me when we have always had a deep friendship together,but i took it on anyway as i know she was going threw hell.she was lucky she made it.  when she came home she was forced to have 3 support staff come sort her out every day as my dad was going threw prostate cancer treatment and felt he needed some suppport with her, so support staff woud arrive and the stoma nurse but my mum being who she is woud nudge my dad to clean up the house and get food ready and tea for all the staff,and after while she kicked off and told them she doesnt want them anymore.

so,this is a long time on,and remembering she had stage 4 cancer-she is now free of even the smallest cancer cell.it took her about a year to get used to the stoma and bag,but now she realises no one notices unless you told them.its now at the point she forget shes got it and sometimes the bag gets very full she has to rush to change it.shes got plans again-she wants to take me and my dad to america somehow,i go to see pete tong do the ibiza classics every year and suddenly she wants to come along.

im really sorry ive waffled a lot (i have memory damage from my epilepsy so i forget how much im writing every 8 seconds or so) but ive wrote this as i wanted to tell you never give up hope, and if ittd help,ask your stoma nurse if they know of a local stoma support group.

one other thing as well that i found out for my mum, you can get specialist underwear for free on the NHS, just ask your stoma nurse about being refered for it if its of interest.

Darkblu73

Hi @CATP, tha k you for your message. SO happy to read that your mum has come through at end and is doing well. I have joined a local stoma group at the hospital. Have found the underwear you can get so I have those amd they are great. Chemo treatment has started so have 4 sessions left. Going back to see consultants end of March. Appreciate your message and I will keep going and hopefully get through it. Thanks

CATP

Darkblu73 said:

Hi @CATP, tha k you for your message. SO happy to read that your mum has come through at end and is doing well. I have joined a local stoma group at the hospital. Have found the underwear you can get so I have those amd they are great. Chemo treatment has started so have 4 sessions left. Going back to see consultants end of March. Appreciate your message and I will keep going and hopefully get through it. Thanks

hi again @Darkblu73 thankyou! im so glad you have both got strength and support on your sides!

its a hospital stoma group my mum goes to as well, but she said its not very acessible if coming by bus.

she keeps saying "no one talks to you at the meeting" ,ive told her she needs to start it off by being a bit more out there instead of expecting people to go to her, theres probably a lot of people who arent used to how online or offline/in person support groups work if thats the first one theyve ever been to. ive used disability forums since 1999 and went to a mencap social group for a long time.

lots of people will be very quiet and reserved until someone whose a bit more used to these things sparks it off.and if its anything like meetings ive been to,people may not want to chat about there stoma, sometimes they may just want a bit of company with people who share the same fight,a friend.

Ps.

 i will keep everything crossed for you for your final four treatments,i hope they go as smooth as possible for you -i hope the consult in march goes well to!