The one thing she dreaded

Hi Chemteacher,

I can't imagine how your Mum must be feeling after coming round from the op only to find a stoma. But ultimately the stoma is something that is a part of saving her life. If it's reversible, it will only be for a short time. She needs to get her head around it, and accept it and only once she's done that can she move on and get on with her recovery. I knew before my op that I was to have a permanent stoma, but even after the op, it was a bit surreal to have this 'thing' on me, but I quickly accepted it. 

Have the stoma nurses explained that if she can't look after her stoma (including changing it), she may not get home? 

I want to reassure her that, no matter how old you are, what job you might do, what kind of lifestyle you have, having a stoma is not something to be ashamed of, or frightened of. There are far more people around who quietly get on with life with their stoma, and you wouldn't know it! I always remember when news of my cancer and op broke, an elderly family friend patted his side and said he knew what I was about to go through. I never knew he had a stoma! Having a stoma won't stop you living. In the early days it can be a rollercoaster, but you just take each day as it comes. 

I remember in the early days I didn't want to leave the house at all just incase something happened outside. But over time your confidence grows and you do start to venture out more and further too! What a big step it was to go in my car to the local shops. And now, I can even go without taking a spare pouch. Now that is living life on the edge!!!!

But seriously, if your Mum can learn to accept it, she can move on and still have a life worth living. I'm sure the stoma nurses will be helping and coaxing her. Are they able to link your Mum up with someone who has gone through it too? My stoma nurses asked me years ago if they could call on me to help if it was needed, and I agreed as I just felt that something like this can be so traumatic but talking to someone who can tell you it's perfectly normal could help.

Just keep talking to your Mum, encouraging her. And help her to see that she's nothing to fear.

Linda 

I do sympathise with your mum. I knew before my operation that I would have a stoma and was told 'right side ileostomy (reversible), left side colostomy (permanent)'. I was lucky that it was right side!

Like your mum, I found it very difficult to deal with at first - not helped by a lazy agency nurse at a weekend who wanted me to measure the output myself (not my job according to the staff nurse on Monday morning!). It does get easier though, especially when you're at home in your own bathroom. Your mum's stoma nurse should be helping and encouraging her, though mine did give me some 'tough love' by saying that I wouldn't be able to go home until I'd shown that I was able to deal with emptying the bag etc by myself.

After a week or two dealing with the stoma it really does become second nature and it certainly didn't stop me from leading a normal life. I don't know how old your mum is, but I was still working as a teacher then (since retired) and I was able to go back to work with no problems.

One thing I've just remembered is the initial smell from the stoma output. This may be what your mum is finding so difficult. After the operation patients are given strong antibiotics to prevent infection and this can definitely have an effect. When things settle down the output will be far less odourous.

Your mum is lucky to have such a concerned daughter (or son). I hope she gets the support she needs to get through this difficult time. There is light at the end of the tunnel - my stoma was reversed after 15 months and I have been fine ever since.

Jenny

Hello I just wanted to say to you that I had my operation on 24th September 2019 and have a temporary Stoma. 

I was appalled the first time I changed IT and the smell really upset me. But it was the strong medication I was taking that was making it smell. It’s not so bad now and the difference being in your own bathroom makes a difference. 

Also ive tried 3 different bags so far as I was so uncomfortable so bear in mind there are different bags not one size fits all  

I haven’t ventured out out yet as it’s early days. 

Its not nice to have, but I only have to look st my grandchildren to think thank god it’s keeping me alive to see them grow up !  

I do hope your Mum improves. It’s such a shock for her and you xxx 

Good Luck xxx 

Jackie x

Hi Knowledgeispower20. You’ve had 2 brilliant replies so far from Jenny and Linda. Something that might also be worth bearing in mind is that in hospital they tend to give you a large clear bag to wear as it’s easier for the nurses to see if it needs emptying and also holds more. Once your mum is ready to go home then the nurses will be able to give her lots of different bags to try - some are a lot smaller and totally covered apart from a little pocket which you can lift to look at the stoma. I also tended to view my output as brown ‘liquid’ rather than stools which might help to neutralise any embarrassment that she has?

I went out for lunch on Saturday with 2 ladies that I got friendly with online when we were diagnosed at the same time. 2 of us have had reversals and have totally opposite bowel activity. The 3rd has a permanent stoma has been to New York, been on a cruise and is now in Spain. We just looked like 3 friends enjoying lunch and nobody would have known any different. 

The buddying up with someone would be a great idea especially if they are a similar age.

Things do get better. The changing of the bag quickly becomes a routine part of the day - I used to set everything out in the bathroom and do it when I got up and that was it for a couple of days. The stoma will shrink over the first few weeks and she may have to try a couple of different makes of bag until she finds one that she is comfortable with but she will get used to it.

Ian aka is the resident expert on the board and will be on hand with advice and support so please keep posting and we will help you support your mum through this.

Take care

Karen x

ps please make sure you look after yourself too and try and take some time out for coffee and cake?

Thank you for all your incredibly supportive replies. I am staying in a guest house just down from the hospital so I can have a little rest time in-between visits. Mum is 71 and I am her only child...daughter. We live together, so I have offered to manage her stoma, if she can't. It doesn't bother me, but we are like chalk and cheese. 

I am seeing the stoma nurse with her tomorrow, but I assume we will get a nurse near to where we live as we are not local to the RSCH. I just keep telling her to remember that the stoma has saved her life!!!

Knowledgeispower20

Hi, I'm very sorry to hear about your mum, you have already has some tremendous support from others and hope it has been of some help.

It is true that when mum gets home it will be a different ball game and dare I say easier to do the management.

The person you really want to speak to is the stoma care specialist nurse, who will be looking after mum when she gets home, as she will be the person who should be able to address all your mums emotional and psychological fears. The stoma nurses in the hospital are busy and can't  spend a lot of time with new patients and ward nurses are only trained in the basics and I know from experience that it can be quite daunting.

I wish that I was able to give out my contact details and could have a one to one chat with your mum whenever she needed to talk to someone but all is not lost in that direction  Colostomy UK have a team of volunteers who man a 24 hour helpline and can speak to ostomates and discuss problems as they arise and it might be helpful if contact was made with them although it would be better if your mum was the person to speak to them.

One of the things I like to do as your online community champion for the stoma support group is to try and be a go to person when a problem arises no matter how small and I can be contacted at anytime through the friends private message system, I have already sent you a friends request and hope you will accept, unfortunately situations arise with stoma management that we are not told about when we leave hospital and can cause concern but a brief message to me will identify the problem and resolve it and we can move on, please use me.

It sounds like your mum wasn't totally prepared for the stoma experience.

If you can try and avoid your mum being too reliant on you to change or empty her bag, it's not pleasant at the beginning but really it does get easier in a very short time but acceptance is the first task to be addressed. Having a stoma is not dirty, it's not an illness but is part of the cure to the bigger picture. There are two ways at looking at being an ostomate 

1. Accepting the bag
2. The alternative

and of the two option 1 is the far superior outcome.

Like others I own my stoma it does not own me and I live my life with mine, I do what I want when I want to, sometimes a little extra thought has to go into planning an outing but in the main its life as normal.

Many give their stoma a name to form a connection, I call mine anCnoc.

You'll be surprised at how many of us are around and spotting a fellow ostomate is difficulty, yesterday I had a lengthy visit to a outpatients clinic (not stoma related) and the only person I knew was wearing a bag was me, there are no tell tale signs, we don't wear a badge we are just like everyone else and this applies to your mum. Who your mum tells is up to herself.

Building up a relationship with her stoma care nurse is essential, she is there to help with everything from the practical side to the emotional side and everything else in between. My nurse makes time for me if I want to have a chat with her in fact last week we were having a chat and she suddenly said do I call you Ian or should I call you The BODACH, yes she outed me my identity has been blown.

Hopefully mum will be home soon and being in her own surroundings will make it easier for her but remember I'm always here to help, support and advise 7 days a week and I will always make time for your mum to help her out with absolutely everything to do with her stoma management, please don't be afraid to ask.

Please accept my friend request and I can start to help her and I look forward to hearing from her albeit I assume through you.

Ian

Hi Chemteacher

I just joined the group and saw you post. I can fully appreciate what your mum is going through but I am here to tell you the stoma fear will subside.

I had my resection 11 years ago but I remember it like yesterday when I woke with my ileostomy bag. I was prewarned so knew I would have a bag but didn't know if it was going to be a permanent colostomy or temp ileostomy. As soon as I realised it was on the right side I knew it was temp.

I dreaded the prospect from before the op. At one point when the stoma nurse was explaining about it and measuring me up, she showed me photos of stoma and I admit I cried a little (I was a 47 year old man !). They wont let you mum out of the hospital until she can show she can remove/replace the bag and clean the stoma. But they will be very encouraging.

I had my bag for about 8 months while I had chemotherapy and couldn't wait for the reversal. But during that time I lived a pretty normal life (to the outside world, anyway). I carried on working and had meetings with customers and staff. The bag does inflate (depending on what you eat) and does make some quite embarrassing noises sometimes, but you get used to it. Most people I met never knew I had a bag. One thing I will stress, you must make you mum put some barrier cream around the stoma. The stuff going in the bag is quite acidic and I suffered quite painful burning until I started using cream.

I wont pretend the experience is pleasant, but just keep remembering its helping to save your mum's life.

The reversal op is something to focus on as it will get her through it. It's only temporary.

I know my experience was some time ago but I'm always happy to help with any questions. I am new to this forum but will keep an eye on this discussion.

Good luck and best wishes to you and your mum.

Thank you for your positive words....yes, she had her first taste of loud noises coming from the bag, and she is barely eating.....just liquids at the moment. She was horrified!! I honestly don't know how she will cope with this....seriously worried she might just mentally give up. I hope I am wrong!

Hi Knowledgeispower20. Liquids for the first few days after the op is good actually as food can lead to a thing called ileus which is basically a lot of vomiting as the Bowel protests to having been manhandled. Try and encourage her to move on to soup, jelly, icecream etc. Jelly is particularly good as it can thicken her output if it is runny. The nurses can also give her little high calorie ‘build up’ drinks although some of the flavours are better than others. 

Yes the stoma can make the odd noise but it will be a lot less noticeable when covered by some layers of clothes and there is other background noise going on. If mine used to do it when it was quiet I just used to say ‘ooh excuse my tummy rumbling’.

I know you’ve referred to your mums faith before and wondered if anyone in the church could come and chat to her or is she wanting to keep the bag secret? 

Hope she starts to improve soon

Take care

Karen x

Hi Chemteacher 

I know where you mum is coming from , I had keyhole surgery and have the same bag she has in May 2019 , I knew I was going to have one but to me it was the better option than what I was first given , (if you go to my profile you will see the journey I have been on) , yes its not easy to accept and a bit daunting , I had lots of problems to start with and had a tube fitted down my nose to drain off my stomach , but you learn how to cope and live with it , yes its a nightmare at times and can be very restrictive but its temporary and saved my life , I use coloplast bags as I found them easier to use , tell your mum from someone who has been there done that it will get easier and she will get  use to living with it , I am going for scans on the 05/11/19 to check I am ready for the reversal , this has taken six months because I had complication which was a 10% chance of having I could have been ready in 3 months otherwise which flew past 

darren