Stoma pain and bleeding, need advice

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329
tadessmeron1

Hi there.

I have a stoma bag for nearly 6 months. I have pain around the stoma and it's bleeding all the time. At the moment, I don't have a stoma nurse. Is there anyone who can advise me?

Regards,

Rakeb

Cplumber

What products do you use?

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Axl

Hello

If I were you, I would head into emergency. If you cannot locate a stoma nurse, there must be one in there or near you somewhere. That is now a wound. You are entitled to better than that.

Bill

I'm with Axl on this one.  Your stoma needs to be looked at by a professional and (as you live in London) if you choose the right hospital in London there are bound to be stoma nurses there.

Where I am (in Hertfordshire), Stoma nurses are not allocated to patients in the same way as GP or surgeons are. They are simply available to anyone who needs them, so if you can find out where they are you could probably just ring their department and get yourself an appointment with one of them (which is what I do). Nowadays, they like to talk over the phone first, but if you explain that your stoma needs to be seen I feel sure they will book you in.

One way of finding out where stoma nurses hang out is to simply phone the hospital and ask for their direct line. Also. your own GP surgery should know this information as they will make direct referrals .

Best wishes

Bill

elledubuque

I'm so sorry that you are feeling all on your own!

I'm in the US, so this may not be helpful in the UK.

My first stop for issues is calling my surgeon's office. He has assistants I can share problems with (and photos of my stoma via email) and they can either give me advice, send in a prescription or book me for a blood panel, get back to me after they talk to him, book me with his in-house stoma nurse or book me with him.

If they felt like I needed immediate help and I couldn't get an appointment, they would tell me to go to the ER.

Be very careful with what could be an infection! After my first surgery on 5/11, I was sent home after 8 days. I never quite felt like myself and soon started throwing up and running a fever. Long story short, I waited too long to ask for help and had to go to the emergency room for a second surgery on 6/1 due to an infection leak in my body that was days from going septic and me becoming critically ill. I now stay in close contact with the office if I sense issues and they call me weekly for a quick phone check-in.

If your body is telling you there's a problem - it hurts, looks irritated, or you just have that feeling something could be wrong, make the call to your surgeon or the local ER. Trust your instincts and know that you may have to be aggressive (in the nicest possible way) to advocate for yourself.

Finally, write down your how you got to where you are story so you have those details (why surgery, when surgery, any complications, what meds, how long meds, what following issues and follow-up appointments, etc.) when asked. I couldn't remember much after my surgery so now I have it all written down for when it's needed and update it ongoingly.

Hang in there!

Elle D.

 
Words of Encouragement from Ostomy Advocates I Hollister
elledubuque

I'm so sorry that you are feeling all on your own!

I'm in the US, so this may not be helpful in the UK.

My first stop for issues is calling my surgeon's office. He has assistants I can share problems with (and photos of my stoma via email) and they can either give me advice, send in a prescription or book me for a blood panel, get back to me after they talk to him, book me with his in-house stoma nurse or book me with him.

If they felt like I needed immediate help and I couldn't get an appointment, they would tell me to go to the ER.

Be very careful with what could be an infection! After my first surgery on 5/11, I was sent home after 8 days. I never quite felt like myself and soon started throwing up and running a fever. Long story short, I waited too long to ask for help and had to go to the emergency room for a second surgery on 6/1 due to an infection leak in my body that was days from going septic and me becoming critically ill. I now stay in close contact with the office if I sense issues and they call me weekly for a quick phone check-in.

If your body is telling you there's a problem - it hurts, looks irritated, or you just have that feeling something could be wrong, make the call to your surgeon or the local ER. Trust your instincts and know that you may have to be aggressive (in the nicest possible way) to advocate for yourself.

Finally, write down your how you got to where you are story so you have those details (why surgery, when surgery, any complications, what meds, how long meds, what following issues and follow-up appointments, etc.) when asked. I couldn't remember much after my surgery so now I have it all written down for when it's needed and update it ongoingly.

Hang in there!

Elle D.

bowsprit

You must head for the emergency room in the hospital nearest to you. An infection, if it's present, can lead to many other problems. You must not delay treatment. Good luck and best wishes.

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