Ostomists support group

Hi Franbern

I do not have an ostomy but in my nursing career (NHS) I came across many who had and most were very inspiring and just down to earth people who wanted to get on with their lives.

I also have some experience of being part of a support group for people with other health conditions. Very often it is a forum for expressing anxiety, resentment and frustration at the impact these conditions have on their lives. They are not necessarily supportive in the sense that they encourage people to define themselves through their illness or condition, and I have seen people inhibited and held-back by these attitudes. They become less of a person and more of a condition, or illness and this can define the rest of their entire lives. I find it very sad, but it is all too common.

I do have a family member with an ostomy and it is as you say with them, they don't work, get any exercise, and at every opportunity will tell you what pills they are taking, how they have to carry so much 'stuff' like spare bags and wipes etc, as if they think you're interested!

I think it is just human nature to finally have excuses- for every one of them there are the others who appreciate their health and what they are able to do, and not to sit around feeling sorry for themselves. I know which company I prefer.

When I worked in the NHS I remember when people were discharged after certain ops or treatment the consultants would remind them they had very expensive treatments without any extra cost to themselves and that the best thing they could do to express their thanks would be to go back to work and start contributing again.

I fear this attitude may have all but vanished.

So I can't contribute in a specific way but can express my perspective on this. I cannot speak for the US or any other health care system, but people are people regardless and some are more interested in living their lives than being married to their illnesses. It is a little sad I think.

Great post Franbern. When I was 3 months old (early 1950's) my Dad was diagnosed with Ulcerative Colitis. He was very, very ill and stayed in hospital until I was almost 9 months old. He had an ileostomy, which in those days was pretty primitive. He was told to expect to maybe live for 10 years, 15 if he was lucky.

So fast forward to 2015 when my darling, darling Daddy passed away aged 95 and I was 63. He outlived my Mum by 11 years which was totally unexpected. He did have further surgery around 1980 but he came through it.

His stoma nurse did do a bit of research and she thought he may have been the longest surviving ileostomy patient at that time.

I never, ever heard him moan or complain. He lived a full life, had a good job and was the first one in the pool when we were on holiday. Absolute testimony to how life doesn't end with a stoma. A remarkable man and there's not a day goes by that I don't think of him. I miss him dearly.

I too have had to have a permanent stoma as a result of cancer (12 years now) and like Franbern, I am grateful to be alive and do my best to discreetly get on with it, without burdening others with the problems that can come with it. Keepingquiet shows a lack of understanding about the anxiety that can come with having an unreliable gut, and also on occasion being on the invisible receiving end of comedians' jokes about colostomy bags. If you have had an embarrassing episode it can erode your confidence about going out for a bit and yes, it is a faff always to have to remember your bag of essential items every time you leave the house and panic if you suddenly find that you have forgotten. For some people having a place where it is safe to talk about what is seen as 'unmentionable' can be a real support, not something to denigrate. A bit more compassion needed please!

I didn't intend to come across as lacking in compassion. I have various health problems of my own and accept that anxiety comes along with lots of things that cause us problems in life, including ill health.
However, having read Ferry and Mischa's post I feel that attitude is the one I emulate in my own life.
I do not dismiss people's anxieties at all, but if you are still letting your surgery or illness define your life years after you have fully recovered then you haven't really recovered at all but are still carrying that illness along with you.
I like to just get on with my life and will change the subject when people start talking about their illnesses...especially if that illness occured thirty or so years ago.

Gosh keepingquiet I'm glad I was never one of your patients. Surely someone who lives with a stoma has not "fully recovered" and never will. A dear friend of mine has had one for 30years and copes with it brilliantly and without complaint - but she isn't 100% recovered from the Crones disease which necessitated it. If she and others like her want to talk about her experiences I hope they would be treated compassionately- and not have the listener changing the subject

I put my head above the parapet here didn't I?

No one knows what other people have to deal with, but I do know there are many no longer here who would have given anything to have a lease of life they were denied...

I know I am grateful for every single day and just wish other people would be too.

I can choose to listen to positive people, and I can choose to ignore the pity parties.

Maybe I just hit a nerve somewhere...

Keepingquiet - oh dear, Yes you did put your head up didn't you. I found your post very interesting, and sadly, do understand exactly what you were saying about many support groups.
Having an ostomy is pretty life-changing. Your whole body image changes, and - whereas people are very understanding and sympathetic with someone who say has had breast removed, ostomy bags are (as has been said on here),, still a subject for comedian's jokes.

At the time I had mine, it never occurred to me to ask any of my children or even my hubbie to assist me with it in any way. Never felt the need to give this bit of gut poking outside a name, indeed, once home from hospital after a long six weeks, just got on with my life as a mother/foster parent. Even when people asked what I had done, all I mumbled was it was women's things (of course it wasn't but it always shut people up.

I could never talk about it to anyone (except, of course ostomy nurse), as far as I was concerned it had given me back a very nearly normal life, just slightly different in the bathroom area. It is only over the years, that very occasionally if someone I am with mentions that a friend or family member is having an ostomy I would offer to talk to them, and so often the person I am talking to, whom I may have known a long time, is astonished that I had one.

Lovely story from ferry 38 and yes, her Dad would have been one of the first people in the world to have an ostomy. Back in the fifties, it was only being carried out by one professor, and only when the patient (usually pretty young), was only very few months away from dying. There was no proper apparatus, no idea as to how to look after it - it has come a long way since then.

I have heard of people with ileostomies and the like doing deep sea diving, walking across desserts, moutaineering, etc. etc. For most nothing as adventurous, but leading our normal lives. My most testing day was a few weeks after I came out of hospital when I was an official at a diving competition. As an ASA official, my uniform was all white (blouse and skirt). On poolside on the opposite side to where the large audience was gathered!!!

Have had difficult moments, embarrassing ones, painful ones - blockages are far to common. Have learned with these, my own self-management over the years. Have not needed to refer anything to do with my ostomy to any medical professional for over ten years now. Have to watch what I eat and when I eat. My family know that I will not eat a meal any later than 7 pm. Still need to find out where the loos are whenever I go out anywhere, have since that op. needed to get up once or twice every night to empty bag, and will never share a bedroom with anyone, anywhere. Minor details - I have led an active and useful life for most of that time. I was a gymnastic coach, tutor and examiner for many years.

I am appalled at the amount of 'stuff' to deal with their ostomies that so many - particularly Americans seem to think is necessary - feel that they are very much the subjects of clever selling techniques. For most of them these supplies are paid for via medical insurance, and they show photos of cupboards they have had built specially to take all the many different, ointments, powders, adhesive cleaner, special adhesives, rings, etc. etc. they think they need. I use virtually none of these, just warm water from the tap, when I am changing my bag and flange, to clean skin - a dry wipe for this purpose. Nappy sacks to dispose of my used items - and that is it. Normal loo paper for cleaning the drainable spout of the bag each time it is emptied.

I do know people with different 'conditions' who tend to define themselves by that condition and live very restricted lives because of it - and find it very sad.

What I was hoping to do with this thread was to provide a support and reply to some questions, from people who were being told they may require an ostomy in the near future and to relatives not having any real knowledge or understanding if a loved one is becoming an ostomist.

Franbern I was interested to read about the amount of "stuff" some people feel is necessary. My stoma using friend was recently very poorly with a blockage and was persuaded to swap to some "new and improved" equipment. It didn't suit her at all and she went back to her previous, more simple, regime.
Incidentally I had known her 10 years before I realised she had a stoma

I've got a loop ileostomy as a result if bowel cancer. Stan (my stoma) and I get along extremely well and I wouldn't be without him, although having recently developed Diversion Colitis, I might have to if my surgeon decides that I need a reversal after all. Unlike Franbern, I will talk to anyone, who shows an interest, about my stoma. I use few items when changing my bag, but do have adhesive remover spray and barrier wipes provided. I'm only 3 and a half years into my journey but accepted my stoma from the moment I woke up from the anaesthetic and rarely have any problems.

My experience, though not personal covers different age groups. I taught a 5 year old who I wasn’t aware had a bag until he was due to come into my class. His only problem seemed to be needing help to change the bag.
One of my B-i-L has had a colostomy (large intestine) for a long time and he doesn’t let Henry interfere with life.
They still go away for holidays, swim, do long walks, take part in sports like ten pin bowling.

My sister only sees it as a problem when there’s a shortage of supplies. They deal with that by ordering early, but she says it’s a background worry.

Finally, one DD’s father-in-law was given one, but was later able to have it removed.

franbern I’m full of admiration for those who have had this op, but it’s reassuring to know that it doesn’t have to mean the end of quality of life.

I am another with a permanent stoma. I too joined a Facebook group for ostomists.
I have diverticular disease too and am in almost constant pain but carry on with my life the best I can.
I think a support group could be beneficial especially for those just starting down the path.

I have had a stoma for 24 years due to bowel cancer, it saved my life. Luckily my colostomy is of the kind where I irrigate it every day, it takes me three quarters of hour each morning including a shower. Without it I wouldn't be here.

It's a way of life, you know that, there is no option and you just have to get on with it!

There was a very beautiful young girl on the last series, was it, of The Traitors, who had one. She hardly mentioned it, but did just a little and got on with all the tasks - some very physical indeed - and definitely was an inspiration particularly to any young person suffering Crohns, bowel cancer or any of the other inflammatory bowel diseases necessitating one of these.

I have had bouts of severe colitis for many years and have had some embarrassing moments so know how much it means to have understanding support and advice from others who have shared experiences.
Another thread mentioned there is a findatoilet app which I will look for.
Also has anyone got one of the keys to toilets or the cards to show shop staff? Are they helpful?

I have a key and a ‘just can’t wait card’. I have ulcerative colitis and as a member of Crohns & Colitis UK you are given one. I also have the toilet finder app! All very useful.

Franbern thanks for this thread.

I had to have an ileostomy just over three years ago. Mine was necessary after a clot very suddenly blocked the blood supply to my colon resulting in necrosis. It came without warning and I was very close to death. It was explained to me that it was similar to a stroke or heart attack however I’m grateful that it wasn’t my heart or brain, I can live without a colon.

I do ‘just get on’ with my life but I can’t pretend it hasn’t changed. I’ve since been hospitalised twice with painful blockages and now have a hernia which can also be very painful.

My diet is less healthy than before my illness as some foods can cause partial blockages. I think that for me the unpredictability is the most difficult aspect of dealing with the stoma.

I’m always happy to answer any questions about it.

I'm always happy to answer questions having lived with my stoma since I was 56 (now 80!). I thought the world had ended for me when I first had it but it does become a way of life. I've travelled, been a regular swimmer and no one really knows that I have it.

Regarding supplies, from the start I've phoned my order to a supply company who have then got my prescription from my GP. They deliver within a few days and can always supply what I want. I'm not sure if I can give the company's name here.

Living where I do I have never had a support group although I subscribe to Tidings magazine from the Colostomy Association and at the beginning had great support from my stoma nurses.

eddiecat78

Gosh keepingquiet I'm glad I was never one of your patients. Surely someone who lives with a stoma has not "fully recovered" and never will. A dear friend of mine has had one for 30years and copes with it brilliantly and without complaint - but she isn't 100% recovered from the Crones disease which necessitated it. If she and others like her want to talk about her experiences I hope they would be treated compassionately- and not have the listener changing the subject

Sadly, Crohn’s Disease is not cured by bowel removal. Crohn’s ulcers can occur in any part of your digestive tract from your mouth down. It also has a number of other manifestations, including types of arthritis, spondylitis, iritis and nasty dermalogical conditions. My daughter suffers from all of these. But the most life limiting has probably been fatigue, which is poorly understood and can be very restricting.

But she also regrets having waited longer than she could have done to have her ileostomy which happened in her early 30s. At the time she thought it was the worst thing that could possibly happen, but it made such a difference to her pain and actually made her bowel more reliable. But it is still a challenge - I remember her once having to do a ‘standing bag change’ at the side of the Ridgeway path partway through a long walk! And she still sometimes has to change her bedding in the night because she had a leak.

But like the OP, she thinks it’s sad that some people find it such a difficult thing to come to terms with and likes sharing her experience with newbies to help them overcome the initial challenges.

I got some really good advice from Grans when I was facing hysterectomy and prolapse repair, and I can imagine that an ostomates support group would be really useful. There’s something particular about the make up of this group isn’t there? It helps that it’s mainly UK based, largely female, and mostly in the second half of life. Feel like I can recognise the experiences of the people here, more than I can with a lot of other social platforms and it feels like a safe space to share things that I wouldn’t share elsewhere.

I would be very interested in a support group and thank you for the post Franbern. I don't know anyone in my situation - 3 years post bowel cancer op, with huge complications (diverticulitis may be the cause). I spent 10 weeks in hospital after my op and had several blockages while in there. Before I could be sent home they gave me something to shift it (avoiding another op), but I will never forget the look on the face of the male nurse who had to help me, and the ward sister who walked in and witnessed a fountain - visualise "you know what" pouring out of a hole in your stomach (sorry for the detail). I now have a massive hernia in the area, which seems to keep growing and I look 9 months pregnant on the left hand side of my stomach. I get on with life (love my bag making hobby & it's a good job I can sew, as my clothes no longer fit), but it's the lack of control and going out in a car that worries me the most. I can particularly relate to what Baubles says. Having a stoma isn't always straightforward unfortunately. I thought the athlete on Dancing on Ice (can't remember her name) was amazing, but it gave the impression that patients can carry on with life exactly as before. Definitely not those who have complications. I now have to decide whether I am able to go to my granddaughter's wedding next year. The attacks happen so quickly, with hardly any warning, and a large stoma bag can be filled up and start to leak after one huge "woosh". Sorry I have gone into so much detail. It's not a nice subject to talk about, but it's my reality.

There are many conditions where people assume that once these are dealt with that everything returns to normal. Sadly not always the case, as has been discussed here,
My dd had extensive chemo 8 years ago so to all intents and purposes she is ‘cured’ thank goodness, but she has been left with some difficult post treatment health issues which are not always easy to live with. She is still relatively young but her life and expectations have had to change to suit her different circumstances.

But the chemo worked? DD no longer has cancer? Or have the side effects been worse?

My cousin was only around 30 when she developed ulcerative colitis . It became bad really quickly and they tried everything but after being in hospital for months she decided to have the operation .
She was unmarried and was also epileptic so didn’t have things easy but didn’t let either condition hold her back . Her epilepsy wasn’t totally controlled and had grand mals in work , at the bus stop and many more places . She continued to work in an office full time until she retired at 60 . She went on foreign holidays alone , mainly cruises and had many interests . She died in her mid sixties , nothing to do with her ostomy or her epilepsy.

Well, will just leave this thread now. If anyone is themselves, or knows of someone who has just had or is likely to have in the near future any sort of ostomy, particularly the right-sided ileostomy, then they can always pm me.