Hi, this is all new to me my mum has j... - Living with a Stoma

Living with a Stoma

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Hi, this is all new to me my mum has just had the major operation and now has a storma.

Lisadavies profile image
9 Replies

Any help would be greatly appreciated, we came so close to losing our mum 4weeks ago as the blood supply stopped going to my mums large bowel, she now has a storma and has changed all our lives. We are just so thankful as this has saved her life. I'm looking for a organised charity to raise funds for to help family's like us and to raise awareness. As I say this is all new to me so any help would be greatly appreciated.

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Lisadavies profile image
Lisadavies
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9 Replies
bern65 profile image
bern65

Hello

Yesterday I cycled 12 miles and Saturday did 2.5 km swim.

It has been 4 years since my bowel and bits were removed.

I remember being so distressed about having a stoma, lying in absolute agony thinking why me.

Support from my family was great but no one was prepared for my condition.

Every day that went by since my operation things improved and I became more experienced. From my first shower and pouch change which were all daunting. My first leak was traumatic and as I learnt more about managing my new toileting procedures the more confident I became.

Setting myself a target to work towards was really good.

My goal was to be well and comfortable enough to cycle the Coast to Coast route across England. I've done this twice now.

Having a stoma is amazing. I never NEED the loo for a number 2. I can go when it suits me. It never takes me too long.

Keeping the stoma and skin around it super healthy is vital. Try as many manufacturers appliances you can. They will send you out free samples if you contact them. Experiment, choose what's best for you.

Follow the Stoma Nurses advice and learn as much as you can about your condition.

I have a Little rule. If my Stoma becomes a little uncomfortable more than normal, then it needs checking.

It was not long before I had things back to normal after my op. It did take a while. For me it seemed life changing but not the way I thought. I'm alive and living normally. I did not think it would be like this when I was in bed trying not to cry because I was worried about how I was going to cope and what I was going to do.

There are some good YouTube videos and bloggs, however remember these usually reflect personal experiences. Just like this message.

Good luck.

Bernard.

emilyanne101 profile image
emilyanne101 in reply tobern65

Hi . I too have had surgery . I had a panproctocolectomy 4yrs ago this Easter . Prior to that had 2 stomas for Crohn's disease and surgery to rectify X 2 hernias . Life was difficult initially but with support from great friends I'm now in a loving relationship. Once settled your mum will get through her surgery . Nothing holds me back. At this moment I'm on holiday in Cape Verde enjoying the sun . Wishing your mum a speedy recovery xx

bevbrooks profile image
bevbrooks in reply toemilyanne101

Hi Emily, I hope you don't mind me asking but what sort of hernia did you have?

My husband had a colostomy 13 months ago and has a hernia of his intestine rather than his stoma and I am trying to get some further information on how to cope between now and an impending operation

Thanks Bev

Haly profile image
Haly in reply tobern65

Hello there, Your post is a wonderful inspiration and I will keep your suggestions in mind to help me cope with my day to day living. I have a colostomy (since July 2015) hopefully temporary and then reversed in a year or two.

Best wishes.

Haly from Canada.

gilmerton63 profile image
gilmerton63

So pleased that your mum is on the mend. I have a stoma had it 16 months ago after gall bladder surgery went wrong,they cut my bowels so was not prepared for this. I have still not come to terms with it but it does get easier. Yeah your mums life as changed but she is alive,having a stoma is better than not being around. Your mum will get used to it,it will take time. Don't hesitate to message if you have any questions.Kerry xx

Lovewoodlincs profile image
Lovewoodlincs

Hello Lizadavies and family, I joined the club in August 2013 at 70 and like yourself was very shocked. The stoma nurses will help a lot but they are not all knowing, I had problems with leakage and it took some upsetting moments before I solved it. Your bowel produces mucus to help the passage of faeces and this can be very liquid like water, it is also invisible and will not allow the bag to stick, hence the leak. When you have cleaned the area before applying the bag wipe the stoma with a 2or3 sheets of toilet paper it will have

Some blood and be wet with mucus, then apply the bag straight away. I use a

Mirror to see what I am doing and always remove the adhesive before starting

The exercise. I use bags from Fittleworth FREEPOST Hawthorn Road Littlehampton West Sussex BN177LT Freephone: 0800 378846. I hope the above

is of some help, and things will improve. 5tugg.

Haly profile image
Haly

Hello there,

I am from Canada and would like to send best wishes to your mom and your family. I am glad to read your mom is recovering.

While searching for support, I came across a Colostomy Association based in UK. Here is the link if you like to give them a call. U hope this association can help you:

colostomyassociation.org.uk/

I have a stoma as a result of a perforated bowel injury from a surgery and I am now wearing a Colostomy appliance. I have been wearing this bag since July 2015, support from an experienced stoma nurse really helps. Compassion and understanding from one's family, friends and health care professionals are essential for the patient to recover and develop a positive outlook on life. I have found eating a balanced diet and keping a light exercise routine also make each day a little easier to carry on. At the beginning I found it difficult to manage but I am happy to say the past moth, I am beginning to find it easier to take care of myself. It is almost ossible to forget I am wearing a colostomy appliance now and then. Good luck on your fund raising and all the best.

Haly.

SarahLJ profile image
SarahLJ

Hi firstly I would like to applaud your support and secondly tell you of my extremely positive experience of living with my Stoma, I am a 51yr old woman and am coming up to my 1st anniversary since emergency surgery, it was life changing in ways I could never seen. For me I had no idea how ill I had become so the benefits of my op where numerous,The idea of a stoma was the worst part the reality has been much more straightforward A dedicated stoma team has been my best resource advising me on choices available,I have had no issues with leaks or odour or anything else I was frightened about , I am approaching the time to decide whether to have my stoma reversed if there is enough small intestine ,and quite frankly I don't know if I will put myself through the operation Iam that comfortable with my stoma ,I just wanted to share what a positive experience I have had and let you know that it has not been at all like I thought it would be , and wish your mum as smooth a transition as I had . ☺️

jansaf profile image
jansaf

No oxygon was going to my bowel it was dead like your mum's then I haemoraged and was rushed for an emergency op ending up with a stoma ileostomy and then I had a heart attack and sepsis. I feel for your mum it is hard and a slow process getting back but I am sure she will.

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