Bowel cancer, stoma, illestomy bags, my journey with my fathers illness

clarissa

Hi Mum2one, there's lots of really good, practical info been posted and I have added some tips I find helpful.


You don't say whether your dad has an ileostomy or colostomy, or it's too early for me and I've not noticed! I presume it's an ileo from what you've said. I have had an ileostomy for the past 5+ years following cancer. It was horrid at first but they do settle down and become manageable over a few weeks/months. Although very occasionally I'll still have a couple of weeks here and there where it's an utter pain! In the main though I look upon it as something that helped save my life so it's not that bad. It does get better!


Your supplier will be able to cut the holes in the bag for your dad, ask the stoma nurse. The stoma will shrink and change over the next few weeks so it's best to wait until it's settled to get ready-cut bags.


I was fortunate in the first bags I used were suitable for me, but there are dozens of different brands and types and it may be worth asking for some samples either from the stoma nurse or from manufacturer sites who will send out samples of different products to you. Different bags suit different people, there'll be one that is comfortable, quiet and sticks.


I find that any weight changes I have can affect how well the bag stays on and where it leaks from. My stoma area is very 'hilly' and stoma very flat so I use a eakin ring/cohesive slim to balance out the dips. I also have a couple of fistulas and just cut the hole accordingly.


Make sure the area around the stoma is really dry before placing the bag on. Some people find that warming the bag first (putting on a radiator for a couple of minutes, a blast with a hair dryer before or after sticking) help adhesion by making the adhesive more sticky. I tend to just plonk it on and keep pressing it down firmly.


Mine is very watery output, which make leaks more frequent and very messy indeed! I use a product call Morform which are basically little sachets of absorbent crystals that are put into the bag and thicken output, they make a lot of difference to leaks.


The skin around the stoma can become sore and excoriated. I use a powder, that I can't remember the name of, very, very sparingly on the worst areas when changing the bag which helps it to stick properly. The more the bag is changed the more likely you are to get soreness, but if you delay changing the bag when a leak is just starting under the flange it can burn the skin quite quickly.


When I first had the stoma I used to cut one of the absorbent sheets into smaller squares and put it as a barrier between stoma and clothing. I very rarely needed it but it does give a bit of reassurance and does tend to keep leaks more manageable.


With food I now eat what I like within reason. I got no info when I left hospital either and lived on mashed potato and slop for a couple of weeks until a curry craving got the better of me, eek! You soon become used to the effects of individual foods. I don't eat anything very fibrous - pineapple, mushrooms, coleslaw and beetroot have resulted in blockages although luckily resolved after a few painful hours. Beetroot also turns output bright red, which is disturbing when your not expecting it!
I find that carbs, rice, potatoes, pasta, bread thicken output. Cook veg so it's soft, chew well, peas are an experience that only someone with an ileostomy can fully appreciate! It's best having the last meal of the day earlier as otherwise it's up and down all night. Marshmallows and jelly babies thicken output, good if you have a very active stoma and need to change a bag as it slows everything down.


I eventually got a stoma nurse after 4 years of having a stoma as there wasn't one in our area. Stoma nurses tend to be really good, lets face it you have to be a special sort of person to do that job! District nurses are very hit and miss, hospital nurses are generally inexperienced with stomas ( I was a nurse until I had to finish work.) I also found that the ileostomy association forums were really helpful too.


I hope you get your dad sorted quickly, good luck to both of you.

Chorlie

Here is a god list of companies, most will send samples and give advice (via Online Chat, Email, Phone & Twitter).

http://www.iasupport.org/about/links/ostomy-appliance-supply-companies


Most Stoma nurses are great, but all seem very busy so hard to get an appointment if needed at short notice, they also seem to only recommend a couple of different makes; I found it best to contact these companies direct and ask for samples, if you tell them your problem they can try to advise on that. Then try the samples, some will be better than others and just go which it best, after all everyone is different.

mum2one

Thank you so much Clarissa - his is an ileostomy following cancer, it was made worst as he was 1st told that it would be reversible.... I think that was before they found the cancer, he was so fit and energetic, but he should get that back eventually...
A big thank you as well Chorlie the link is brilliant, and working way down the list.

A big thank you to everyone from my mum, she asked me to pass thanks on and also say what everyone has done is so supportive, she will be endebted to you all, words don't do enough justice to say thank you xx

mum2one

Saturday summary
Achievements - now done to just one pillow and 2 cushions
Food - positive now having crackers and cheese as mid morning snack, afternoon snack he's having oxo cube with hot water and piece bread
Burst - pleased to say none - kept the same bag since Friday

Overall - good day x

mum2one

nearly 2 weeks have gone by......and dad is doing brilliantly.

Bag wise - he is getting on a treat with the convex bags

infection round stoma - thats cleared up to a t now,

food - hes trying more things although he has said his tastebuds have changed and soups are the ones that get the most yes/no to, as I've stocked on different brands soup and flavours - he had oxtail today, which he hasn't had for years and he loved it.

drinks - he's still on his litre a day of full fat milk

Wheelchair - we've hired a wheelchair from Red Cross for him, got it for 6 weeks, it has been a life line, DD has taken him out a couple if times to the corner shop.

Appliances - he has now got a perching stool in the bathroom, given him some dignity and independance back, - he still needs a hand but he can do a couple bits for himself. he's been ordered a different matress for the bed and a ring seat to sit on, as the blow up ones he was given developed leaks and there plastic they've made him sweat for England

Stoma Nurse we saw the stoma nurse last week, she was pleased with how everything was going and now feels that his stoma has finished changing size, so she has order the bags to be pre-cut and also the gels to thicken up the contents.
Unfortunatly they still had not got the notes from the hospital so haven't been able to proceed with further treatment plans etc. Go back again next week

then...

Consulatant We had a call today to see the consultant in November, so fingers crossed.

Other medical - We've got assesments being done tomorrow and someone else next week, to be honest i've lost track of who is who, and Mcmillian are now on board, for support etc.

He is finding things frustrating, in terms of doing things and getting out and about, its like a military planned operation, but were getting there and thats about all we can do, every baby step son becomes a stride.

xx

ERICS_MUM

I'm so pleased that things are so positive at the mo, it must be a real boost for you all. On the subject of wheelchairs, when Mum became unable to walk even with a walking frame we bought a fold-up wheelchair which lives in the boot of my car. Its easy to unfold and light enough that I can lift it in/out. It's a god-send for getting Mum out for a couple of hours.

ukmaggie45

Thank you for the update. It sounds like your Dad is getting on really well, I'm so glad to hear that. Might be worth checking eBay to get a wheelchair? I bought one there for a spare in case my usual foldable needs repair. Think I paid around £50 for it. But it's one of those things that you need to be able to collect mostly, so you'd need to search under places you could drive to.

Very best wishes to you and your Dad from Liverpool. Maggie

mum2one

Thank you both - think we will be looking at a wheelchair permantly - have a ring to see if can get a 2nd hAnd one xx

DUKE

Hi mum2one, you can join the Macmillan Cancer Support group here, they're a friendly bunch. Also there'll be someone on here who's been through what your Dad has. http://www.macmillan.org.uk/Home.aspx

Or ring 0808 808 00 00 if you need to talk.

Wishing you & your family all the very best xxx

mum2one

A quick update - dads just had 4 days away and he did brilliantly, he was a bit worried re toilets etc but we didn't go to far about 70miles from home and stopped at macdonalds enroute, he hadn't got much energy so when I took dd out shopping dropped mum and dad off at a cafe then we met them.

He's had his visit from the McMillan nurse she's helping him with blue badge application, she's suggested he goes to the local hospice for day centre, she's also pushing his follow up treatment as with the hospital not sending the notes has delayed his follow up treAtment - and whether chemo is right or not.

Hospital wise, follow up with stoMa nurse on Friday, hoping she has some news, he is booked in Monday cor consultant and another app in nov for a different consultant

We're still up in air regarding the cancer issue but the bag seems to have sorted itself to a t, so hoping good news will follow soon. Xx