Is More Support Needed in Hospitals and at Home?

After having yet more surgery and being sat at home healing, I've been doing a lot of thinking about the support in hospitals and once home. I know I'm not the only one who has had nurses who haven't got a clue on how to change a bag and when you're feeling down and weak, to me it's the last thing that we need and then once at home when some days are really tough.....family members are there to help but can never truly understand.

So this is where I am at, at the minute......I know I'm no nurse but feel that I could offer people support in pre and post op...being actually there at the hospital if needed....either in person or even a phone call once home

I have spoken to my stoma nurse about this and she thinks it is a great idea and she has mentioned going with her on seminars, speaking to doctors, nurses, and district nurses about where areas can be improved by them

I wanted to get your feelings on all of this...how you all feel about the support that is offered to us...or lack of in many cases and how you would feel about an ostomate being there for you

Tine......xx

Hi Tine - that sounds great, if you are comfortable speaking in public about your ostomy.  Nothing could be better in terms of getting the word out about ostomates leading regular lives, but at the same time needing TLC about our condition.



Here in the States we have United Ostomy Assn. trained visitors (of which I am one) who see people in the hospital, at home, call on the phone, etc.  People are really grateful.  My local Ostomy support group is really large and a good place for people to go who are contemplating an ostomy.  That's what I did before I made my decision and it really helped me.



Most new ostomates do say "I wish I could have spoken with you before the surgery."     

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You would probably need a phone to carry out this job. Tine lolololololololol
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Good topic title;


     And yes, we do, new ostomates as well! Education is key, and I think we could start right on this site because we know that this tool could be in most medical facilities soon, if not now. It is up to us to push this up front and center. We could start a few new forums like the "ET" one, only on these forums we could have the medical teams from around the world feed us new and innovative ways of dealing with this and educational stuff. Admin has gone in that direction somewhat. Let's help them help us. Win-win for ostomates



............oh yeah, a phone too
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Hi Tine,

When I was in the hospital in Calgary after my ileostomy, I was asked if I would like someone from the Ostomy Society to come and visit in the hospital and give me information. I found it very helpful, so go for it, girl. Good luck.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

If you look at www.iasuport.org and www.ostomylifestyle.org, both UK ostomy support groups, they have visitor training courses. When you have finished the course, they will put you in touch with anyone who wants someone to talk to, and they always need volunteers for ostomy events.

Absolutely just fitting the right people together. I was offered help, but only the third time I had my stoma, so I ended up saying no. But doing (volunteering for my ostomy association), I realize I too could help. It's a huge job. Some of our calls, which are supposed to be ordering only, end up being more support, and hell, we need it as well, especially our country people... Yep, go for it, kid. Mooza
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I agree with mooza that we need to fit the right people together. My STN is in another town, so travel is required to talk through issues, which in Australia can be a long trip.

MarkP

Hello Tine, in August 2009 I had a Hartmann's (emergency colostomy). When I came out of the hospital, the district nurses who came to my home to change the dressings were appalled when they realized that I had not had counseling after the operation (nobody knew before). I've had the reversal now and still have to go in to get a hernia repaired. I think that what you are proposing is a good idea
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Thanks for mentioning the United Ostomy group regarding trained visitors. I'd been considering how to work into that, and had not heard of this. Very timely, helpful.  Very good ideas going on here.

Hi Tine,

Firstly, I hope you're healing well and that everything is now working as it should.

My experience of hospital care was mixed. The stoma nurses were really kind and informative. I also got visited at home every week or so by my stoma nurse, which was really useful during the first few weeks and months when I was getting used to how things worked. Very useful for those "oh my gawwwd" moments when something doesn't look or feel right with your stoma. It's reassuring to have a medical professional come round and tell you all is alright.

Now I'm on my two feet, so to speak. My nurse doesn't need to see me anymore, but I can still call for her help and advice if I get stuck with something. I called her the other week, in fact, to get a new template drawn up as my stoma appears to have shrunk in the last few months.


I have to say though, that the level of understanding, both on a practical and an emotional level from the rest of the NHS staff, was a pretty mixed bag, generally speaking not great, and when it was poor, it was very poor. I was surprised that a lot of the generic nurses and care assistants didn't seem to know the difference between a colostomy and an ileostomy, for instance, neither did the dietician who came round to advise me for that matter.

In fact, come to think of it, I spent my first post-op week in hospital thinking I'd had a colostomy because the nurses had misinformed me! I can laugh about it now, but it's incredible, really.

An example of how poor the emotional support is: When the surgeon in charge of my overall care broke the news to me that I would have an operation and wear a bag, I was devastated. I tried to tell her I was afraid, that I wasn't a seventy-year-old man, I was only thirty and still had a life to lead, that I was scared this would stop me from living the life I knew, but all I got back from her was "well, we have nineteen-year-old girls who have this done....."


Oh.


So that's alright, then!


I remember trying to tell a nurse on the night shift that I was scared. This was actually before the above conversation when they were still trying to medicate me. The machine had malfunctioned and had stopped pumping the medication. I told her I was scared because if the medication didn't work, they would have to take my colon out, but she just basically told me I was making a fuss and that a lady on another ward who had to have her breast cut off hadn't made as much of a fuss as me! I.e., pull yourself together! I know the other lady must have gone through hell as well, but as terrible as it is, isn't having a breast off a cosmetic thing? Whereas having your colon out changes the way you go to the toilet, what foods you can eat, what you can drink, maybe how some people perceive you, potentially your entire lifestyle could be changed.

I guess it doesn't really matter if having a breast off or a colon out is more important - the point is, as a patient, I was scared about what I was going through and I didn't feel my fears and concerns were being addressed - if anything, I felt they were being belittled.


[Disclaimer - a year on I now know that the surgeon's decision to operate has improved the quality of my life immensely and that I owe her a debt of gratitude. I also know the nurse was only trying to help me in her own way and that a lot of my fears were founded through a complete lack of knowledge and ignorance about ostomies - I hadn't even heard the word stoma before I was taken into hospital, for instance - but I'm just trying to get across that the emotional support for people due to have an ostomy isn't always great]

A year afterwards, I actually met a healthcare professional who by coincidence happened to have a stoma, and it was great to talk to her, share common experiences and tips, etc. Part of me says I would really like to talk to people who are about to have the op or have already had it and are having difficulty re-adjusting, to use my experience to let them know that things won't be as bad as they fear, and maybe I will do that in time. But you know what? If I'm honest, when I was lying on that hospital bed with all kinds of thoughts of devastation going through my mind and some grinning bastard had come through the curtains to tell me life with a bag would be a-ok, at the time I probably would have just sworn at them, but then it was a rather emotional time!


Sorry, Tine, I've gone on a bit there. In short, this isn't a service I was in the right mental frame of mind to benefit from when this was all very new, but today if someone who was in my position contacted me to ask for help or some of my time, then I would never turn them down as I know what a lonely experience this can be (even with a partner, there are some things that you just have to have lived yourself to appreciate, good or bad!). So maybe in time, I would register with my local hospital or ostomy foundation as a volunteer.

I wouldn't say a woman losing a breast is just cosmetic surgery; it must feel like the end of the world for them as well, and all the months of radio/chemotherapy they have to go through for cancer.

It wasn't very nice of the nurse to say that to you.


I've had a few bad nurses over the years, but luckily more good than bad ones. The day after my surgery, I had a nurse telling me she would rather die than have an ostomy. I'll leave you to guess what I told her to do, lol.

They never give you counseling after surgery (they should), but you have to ask for it.
Ostomy visitors are just an ostomy friend; they NEVER give you any counseling, just support and encouragement that you will get your life back.

I forgot to say that last January I asked my G.P. to refer me to a Psychologist. She did, but I'm still waiting for an appointment.

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Some interesting replies there to Tine's post, which I can relate to. For instance, until I came upon this site, I didn't know the difference between an ileostomy and a colostomy. If anything was explained at all in the early days, I was so new to it and quite terrified by it all that I didn't take in half of what they were telling me. When in the hospital the first time, for the pouch operation, some 19 years ago, - a week or so before I went into the mixed ward, (not nice under the circumstances), and 80 miles from home, a young man had managed to throw himself out of the 5th-floor window, rather than face what was to come.
The second time, 5 years ago (for the stoma), a young girl was sobbing away, waiting to go down for surgery, and the ward sister went over and asked rather abruptly what the matter was, and the poor girl wanted her mum. I had a stoma nurse visit about a month after my ileostomy; I knew exactly what I'd got by then! But, I was soon left on my own, and told there was a monthly clinic I could attend, in the nearest town, which first needed an appointment making, - tried this several times and often the nearest they could fit me in was two or three months ahead, for the 2-hour-only slot of a nurse coming out from the main hospital. Not a lot of help if your skin is so sore the bags won't stay on.
The only person to have seen my stoma is my daughter who, when visiting the hospital, witnessed a bag being changed. I watched her face and bless her, she never altered her expression. I have always made it known I am willing to talk about it to anyone who might be in the same situation; it's a very lonely illness, so far no one has taken me up on this offer.
I agree the emotional side is not taken into consideration anywhere near enough; that is why this site is such a huge help.
In the past, I have had it said to me so many times "it's all in your mind," I had actually started to believe it. That's another story.

Thank you, yes, it is so lonely.
I have had a colostomy for 2 years and don't talk about it to anyone. I suppose this could be my fault, but I just can't talk to anyone about it unless perhaps they have the same.
I live in a small town with no support at all. I have learned everything on websites like this from lovely people like you. So thank you all.

You need to learn how to change your own bags first