Hi

Hi Phil0670 and welcome to the group

I’m sorry to read of your diagnosis, and I do understand from my own experience what a headspin this is to process. I had a total pelvic exenteration, which is a different but nonetheless massive surgery and I now live with a permanent colostomy and urostomy. (My story is in my profile if you want to click on my name).

I am so used to living with my stomas that it’s hard to remember what life was like before!  It is straightforward to manage the stomas, but at times can be challenging especially in the early days after surgery while you are healing. It is life changing to have to go through this, but I prefer to concentrate on it being life saving and crucial for me was acceptance of this being my life going forward.

I’m not sure what kind of information you might be looking for as your question on what it’s like to live with two stomas is a big one, but I’m happy to answer any questions from my own experience. External linking from the forum is not permitted, so unfortunately I am not able to link you to blogs or other sites as Macmillan cannot vouch for the content. We also are able to maintain our anonymity here on the site which is important. We here as members can only share our own personal experiences.

However, I had my surgery in March 2020, and it was very successful-I’ve never regretted it and my feeling is that living with two stomas is a small price to pay to still be living a good life. Please feel free to ask any questions I might be able to help with.

Sarah xx

Thanks for the response SarahH21 to be honest I'm not really sure what sort of info I was after when I posted yesterday.I think I wanted some reassurance that my new life post surgery could be of a reasonable standard and how limited it would be. I appreciate from what you said and what I've read elsewhere that it can be initially challenging but many people do reach a point of having a 'new normal' which is quite manageable and fulfilling.

Your response and bio has helped so thank you. Hospital is going to put me in contact with local stoma nurses etc. so hopefully that will help me get my head around this a bit more

Phil

Yes, life can be very normal with stomas! The stoma nurse tend to be able to tell you about the mechanics of what surgery entails, and can show you how to change bags etc, but they don’t live with them.

I wear the same clothes as I did before, i go swimming, I regularly go abroad on holiday and no-one knows I have them unless I choose to say so, which I generally don’t. I can basically eat and drink what I want without restriction. But I would say it’s important to give thought to the mental impact of this as well as the physical. I didn’t necessarily do this, but have benefitted from therapy which has helped me.

You need to be careful with things like lifting heavy items as you can be at risk of hernias but I have never had one. You are likely to be very tired after surgery, and need to take it easy so it will be good if you have support at home. Major surgery means recovery can take time and sometimes it might feel like one step forward and one step back, but my advice would be not to push yourself and try to do too much too soon. Apart from the physical evidence of having stomas, there will be a lot of healing to be done inside. 

Sarah xx

Good advice thank you. Surgeon reckons I'll be in hospital for around 10 days and estimates 3 months recovery. I live alone, have a good group of friends but rest of my family live about 150 miles away. Have considered spending initial period after  hospital with family. I think there are pros and cons to this though. Cons been I need to learn to adapt to new life in my own environment and also forming what I imagine to be a working relationship with the stoma nurses. I will speak to them about it.

Thanks for your positivity  :-)

In my experience, I would suggest you need physical support at home after surgery. I was in hospital for 13 nights and could absolutely not have coped at home alone on discharge. I could hardly get out of bed at first, could not manage to shower alone and needed help with everything. Some days I couldn’t even get to the bathroom to shower so had a bed bath from my partner. Sometimes I couldn’t get up to brush my teeth and had my toothbrush brought to me with a bowl.

I was often sick-vomiting-and couldn’t change the bed by myself, and likewise stoma bags can leak which means another bed change. You need help for this, so if you can stay with family or have someone stay with you that would be really beneficial. Also, I’d suggest investing in a waterproof mattress cover! 

I didn’t have any relationship with my stoma nurses at the hospital, although I know some people have had a better relationship with theirs than I had- and I hope you will. The stoma supply company nurse who visited at home(nothing to do with the hospital) was much more useful and I built up a really good rapport with her, 

I live 1.5 hours away from the hospital where I had my surgery, so if I had been able to have any contact with them it would have only been by phone. They could have answered questions if they’d been available, but not give me practical help at home.

You cannot underestimate how weak and tired you will be-the stomas need to heal and settle, and I don’t know what your surgery will involve, but I had a large abdominal wound with 25 staples. I could shuffle around the house on a zimmer, and get up and down stairs, but that was about it in the early days. I could not imagine having to be home alone. I wouldn’t have been able to cook for myself, although I didn’t have an appetite, or even fetch myself a cup of tea. I know a lot of people who have 2 stomas, although  not in this forum, and I don’t know anyone who did this without help to start with. Time enough to get back to living alone when you have done some recovering!

Sorry, I don’t mean to sound negative because I am not, but I’m realistic in remembering what my limitations were after surgery.

Sarah xx

Phil0670,

I manage two stomas, both bowel-related rather than urine and my surgery was more localised than what appears to be your case. Managing the stomas is pretty much straightforward once a routine is established with the right supplies (there is a lot of stuff out there and you will find the items which give you peace of mind). Once your surgery is complete you will know what conditions you have to manage. I order supplies direct from the supplier, who arranges the prescription with my GP. I placed an order last Monday, my GP signed it a few hours later and the box of goodies was at my front door on Tuesday morning. You can't ask for better treatment than that and I hope that you enjoy similar experiences on your journey.

The colorectal team whose care I was under really were first class in every way. Everyone seems to know about replacement hips and knees, steel plates and screws, stents and heart bypasses but the effects of bowel surgery are largely unknown to a lot of people. Like the rest of us on these pages you will be in at the deep end on Day 1 and learn how to manage your routine very quickly. From what SaraH21 says you will need some additional support to begin with and whether you will need to arrange this before it is safe for you to be discharged from hospital remains to be seen. Only you know best how you feel.

Keep us posted.

Dulac

Thanks again, I think your just adding some realism rather than being negative. Its early days so I'm sure I'll be having more conversations to clarify a number of points including expected level of care/help 

Thanks for the info Dulac 

Thanks for your understanding Phil. I am very positive about living life with two different types of stomas, but my realism comes from my personal experience rather than from a stoma nurse.

My father in law last year had bladder and prostate removal, and was discharged on the basis that he could wash his own face and had been able to eat some mashed potato! He had no-one at home to help as my mum-in law has dementia and he is her carer. 

He struggled hugely and it was very difficult-we tried to get some outside agencies to help but got nowhere with that. I think he very much underestimated what this surgery would entail and how he would be afterwards because the stoma nurse in the hospital (same one I had) gave him unrealistic expectations about his recovery. 

This is huge surgery and recovery is long and difficult, and that’s just being honest. However, life can certainly be good once you have recovered!

Sarah xx

Just been chatting to someone at a local care home about a post surgery short term(i.e. a few weeks or more) stay. I've explained my situation and they didn't think it would be a problem. I'm probably more fortunate than others in that I do have a bit of money put aside. I'm also 'only' 53 and relatively fit. Still early days though but nice to know I have this sort of option.