New and scared

Hi

Oh you poor thing - I’m sending you a big hug to start with. Ok, so I had my stoma as part of the op to remove the tumour but it’s not uncommon to have one before radiotherapy especially if the tumour is making the passing of stools difficult. I had never been in hospital prior to my operation but was really impressed by how efficient the pain management was and it was only a matter of days before I was off the codeine and just on paracetamol. The actual stoma has no feeling to it and you will quickly learn how to deal with it and change your bags. Many people who have struggled with Bowel problems have said that their stoma has been life changing and enabled them to go back to living a normal life without worrying about where the next toilet is.

Bowel Cancer is very treatable nowadays and having radiotherapy before your operation is normal procedure to try and shrink the tumour. I had chemoradiotherapy, operation with stoma, follow up chemo and then a stoma reversal and I’m now 3 years clear. 

Please keep posting on here - Ian is so knowledgeable about all things stoma and he will be able to help you with any issues and reassure you that life really does go on as normal

Take care

Karen x

Thank you for your reply Karen, so you coped with the operation ok then ?  How long were you in hospital for ?

Hi. Yes I found the operation to remove the tumour ok. I had an epidural (which I was dreading) but didn’t feel a thing cos they numb the area beforehand. Unfortunately the epidural came out during the night so I then had codeine and then paracetamol. I was in for a week but that was only because the stoma nurses don’t work weekends and they won’t let you home until you can manage the stoma on your own. 

Once home I found I didn’t need any painkillers and was just careful to roll onto my side before sitting up in bed and not lifting anything heavy as you can be at risk of a hernia. 

I had my stoma for 15 months before having it reversed which was a much smaller op that just took a couple of hours and I was up and dressed the next day and walking the hospital corridors

Karen x

Thank you so much for that, has given me a bit hope all will be fine xx

You’re welcome and I’m sure everything will be fine. Please don’t hesitate to ask if there’s anything bothering you - always happy to help

Karen x

Hi Martin

Welcome to the online community and in particular the stoma support group and I'm sorry to hear if your apprehension about having a stoma, I was torn between answering you here or in the Anal cancer forum group with the intention of putting your mind at rest about having a stoma and as this is the group where we talk about having one I thought it better to answer you here.

If you trawl through website sites to find out about having a stoma you will see some horrendous stories which I don't doubt are true but here in stoma support we concentrate on solving problems if they arise and getting on with life. 

I like many Live my life with a Stoma and the only restriction I have to leading a normal life is the other medical problems I have.

No matter what you liked doing previously having a stoma should not hinder you carrying on doing them whether it be work or play, you can still do them and enjoy them.

You just have to look at the stoma procedure as not part of your anal cancer but part of the cure to help you, hopefully, put this disease behind you, sorry no pun intended, and get you back to leading a normal life again.

If might be helpful if you and I could have a one to one chat about what concerns you about having this surgery and to help us do this I have sent you a friend request. You will see this popping up in your inbox shortly.

Martin together we can help you get through this, I am about 7 days a week to help you at anytime you feel a bit of a wobble talk to me and we can resolve anything that is stressing you out, please don't hesitate to ask me anything and when I say anything I do mean it.

Please let me help you to get through this and get you into the correct mindset to get you through your problems and out the other side to becoming a temporary ostomate when you can start to reclaim your life.

Anytime you need me I'm here for you.

Ian

Hi Martin,

It is so understandable that you are very anxious right now. To finally have a diagnosis, and then to find out what your treatment is going to be is so much to take in at the best of times, but it's the stoma part that is often the hardest part for us to get our heads around. When I was told I was going to have a permanent stoma, I found it hard to take that in. What was a stoma? I didn't know anything about them at all. But they are far more common than you think. Let's be honest, you can't tell who has a stoma and who hasn't simply by looking at them. 

Whilst googling is never a good thing, if you do google, go to sites like the NHS, MacMillan, and other reputable sites that you already know about. Read up on it, but only for a short time each day as too much reading will be an overload. There are quite a few of us around who can also answer any questions you might have. 

It's ok to be a big wuss - I think we all secretly are! I had never been for major surgery before and I was quite anxious about it all. But I took a look of comfort in knowing that my surgeon and his team had an excellent reputation, so that was a good thing. The team will look after you - everyone has a part to play and they are exceptional at it. You shouldn't be in any pain, but if you are, you only need to tell the nurses and they will get that sorted out for you.

You haven't mentioned if your stoma is going to be permanent or will involve a reversal at some point in the future. Mine's is permanent, and I have to be honest and tell you that it was all very daunting at the beginning, but 7 years on and it's part of everyday life. You will adapt to it very quickly - the human body is amazing!

If there's anything that you want to ask, just ask.

Linda :-)

Hi Martin,Please don't be too hard on yourself,it's natural to feel scared,anxious and overwhelmed by it all.It's so much to take in,the diagnosis and then the treatment.Everyone here will help you though and answer any questions/worries you may have.I've only had my stoma 3 months (urine only) but so far have had no problems adjusting to a new life with it.My body has changed but I'm alive and so grateful for that.Love and best wishes.Jane XX

Thanks to everyone who has posted, you are making things a little better right now.  I will update when I’ve seen the consultant on Monday 

Hi Martin.

I’m very squeamish and couldn’t bear to think about having a stoma. But I’m now coming up to my first anniversary and it’s literally saved my life. Seeing it that way has helped me to cope with it, and even laugh at the odd setback. Nobody who knew me would have believed that could be possible.

When you see the consultant, you could ask to meet up with the stoma nurses. I’ve had experience with two teams, and both were very supportive. Hugs and encouragement topped by practical advice. See if they run clinics where you can go and discuss any issues or concerns. They’ve seen it all, and have solutions for everything I’ve presented so far. 

My stoma is called Hermes. He can be naughty but most of the time I’m grateful for Hermes, for facilitating the life saving treatment that’s been prescribed. I hope you will come to appreciate your stoma’s positive role in your own treatment plan  

Every blessing

Wellspring