Anyone with two stomas

Hi Lisa,

Poor you having two stomas, I have one and that is bad enough. I got mine end of September, had a two week break and then 5 weeks radiotherapy so it has taken a long time to start to settle down. I am always anxious wondering is it going to behave OK today, will I be able to make an appointment without having g to find a suitable toilet, so my heart goes out to you.

I found the stoma nurses at the hospital were good even though they were always rushed, but trying to get an appointment to see a stoma nurse now or even talk with one is very difficult and not all GP's are knowledgeable about stoma care, so you pretty much have to carry on and hope for the best.

Hope things get better for you soon.

Linda 

Hi Lisa,

I'm not in your boat as I have only one stoma (formed at the start of September following a bowel resection) so I can't imagine how hard it must be to have two!

It sounds like you are really powering through despite going through a very tough time - well done for getting your weight back up, keep going and I'm sure your strength will return to you! Your body has been through a major shock so give it time to recover.

It's terrible you are not getting support from your hospital or GP, have you looked at the Colostomy Association website? They have lots of useful info and numbers you can contact for support. Also if you're on Facebook try joining their support group (you have to request to join) as everyone on there is lovely, gives great advice and are so friendly and supportive. I've also found it useful on my down days as it makes you realise there's always someone going through what you are or similar or sometimes much worse! I'm sure you will find someone on there who has two stomas.

I hope this helps a little, keep fighting the good fight, our bodies are amazing and I'm sure you'll get there!

Heidi x

Hi Lisa

I use Respond (respond.co.uk) for my stoma needs, and have a dedicated stoma nurse through them. She is always available by phone and text during her working hours and answers me with advice very quickly. She will come and see me if we cannot solve the problem by phone. I am sure other providers would have a similar service. You need a knowledgeable and sympathetic nurse to help you it makes all the difference.

Hi Lisa 

Firstly I can only echo echo echo the words of Linda and Heidi and let you know that because support may not be available on your doorstep it is available from the members here and you should know we are always here for you either through the open forum or the private message friends section.

When we talk about having one of the Ostomies we tend to lean towards the Colostomy Association as a point of reference and rightly so because they are good source of information and I would suggest you contact them.

BUT (in my life there is always a but) you could also contact the ILEOSTOMY ASSOCIATION 

info(at)iasupport.org

They also have support groups around the UK that you can contact - they publish names, addresses, telephone and email addresses. 

Within both groups they will have members who have dual ostomies that you can talk to.

It is becoming more and more apparent that we that have ostomies are very much left to muddle along after the operation without support because our GP practices, unfortunately, do not have the resources or expertise to help with our day to day problems and what knowledge they have comes from what we tell them but all us not all lost you have found us and we'll do all we can to to help you as you progress on the journey 

Sincerely if you want a one to one chat please give me a friends invite or just keep chatting on the open forum.

The questions you ask today are the answers you to pass to others tomorrow.

Ian

Hi there your response is exactly same as mine we use Respond and have fantastic liaison with our Stoma nurse it is my husband that had an ileostomy in October and they have been wonderful with their support as are Respond we even had a box of biscuits sent to us from Respond last week how is that for customer service.

Hi Linda,

Thank you for yourlovely message.

Yes, it hard having a stoma and I believe we are left to muddle through. Which we do, pretty good and admirably.

It means a lot that there are others with one or two stomas, who offer support and kindness and helpful tips.

I hope your stoma is working properly.

Kind regards and thank you,

Lisa.

Hello Heidi,

Thank you for your kind message.

Your operation sounds horrendous and I hope you are getting better and eating well.

It is nice (not the word I would use for our stomas), there are others out there who are willing to share hints and tips and also offer kindness.

Take care and thank you,

Lisa xxx

Hello,

Thank you for letting me know about Respond. I haven't heard of them before. But I will look them up tomorrow. They sound very good and helpful and understanding, which what we need.

I hope you are doing well and are feeling good and well.

Thank you,

Lisa.

Hello Ian,

Thank you for your good and informative reply.

I haven't been.told about these websites. I will certainly be looking them up tomorrow.

I agree we have to just muddle through and all the GP can do is prescribe Loperamide. But at least they do it with kindness and your best interests at heart.

It is comforting to know there are other people who have had a similar experience to yourself. Who can offet helpful tips and kindness.

Take care and thank you,

Lisa

Hello,

Thank you for kind reply.

I hope your Husband is getting better and feeling fine, after his operation.

I will look up Respond tomorrow. The box of biscuits is a lovely thought from them and let support they have given you both is invaluable.

We will all keep muddling on and offer all sorts of tips and welcome advice.

Take care and thank you,

Lisa