Does anyone out there has an ileostomy because of their ovarian cancer?

[cathysal]

I have joined the Ileostomy Association but although I have had lots of very good advice and help, no-one seems to have their stoma because of ovarian cancer. I have a very active, high-output stoma and find it all a bit exhausting although I try to stay positive and as it is not reversible I have no option but to get on with it!

[Jennie]

Hi Cathy

I'm a Regional Ovarian Cancer Coordinator for Ovacome and although I have not had cancer, I lost my daughter to it 5 years ago, aged 38. I also incidentally have an ileostomy - have had for the last 40 years! So have gone through most of the traumas you are experiencing. I'm sure everyone has given you their twopenny worth and sometimes there just isn't a single solution for you. I'm sure you have been told to take loperamide or codeine phosphate and to drink plenty. Have you talked to a dietician to see whether anything in your diet is causing problems eg. certain fruits or veg.? Of course if you are still receiving chemo or other medication that will have an effect. Also, give yourself time. Make sure you are resting when possible because dehydration makes you very tired too. Sorry I don't have a" magic bullet!" wouldn't that be lovely for everything!

By all means stay in touch with the Ileostomy Assoc., but I found so many times people want to tell you what's wrong with them that it isn't always helpful - wondering if you might suffer from x,y,or z in the future. It's hard but try to stay positive and keep asking all and sundry for advice.

Please keep in touch, Jennie Kuca

[Virginia149 in reply to Jennie]

I had to get an ileostomy because one of the ovarian tumors wrapped around my small intestines. I have had ovarian stage 3 since 1994. Ithe ileostomy in 2009. It high output and has been harder on me than the cancer. I now have a growth right below my stoma . I am getting a biopsy in 3 days. I have had blockages from adhesions. I have had 3 surgeries. I to fix the tumor blockage, it leaked then I had to have surgery to get the ileostomy due to the leak that caused a volleyball size infection. Then one more surgery to clear out scar tissue and some cancer growth. I now have this growth and I am afraid it is a tumor and they can't do another surgery on my stomach. Don't know what the outcome of all this will be. It ain't looking good!!

[Clematis]

Hi Cathysal

I have an ileostomy because of the ovarian cancer. I find the output is directly related to how much you eat. Less in, less out. I have had this for 6 years and now manage very well. Ask me anything you like. You do get used to it but it takes times.

Lots of love Clemetis

[cathysal in reply to Clematis]

Hi Clematis

Unfortunately still struggling with 'the bag' and wondered if I could pick your brains a bit and see if I could get some ideas from you. I haven't found my stoma nurse an awful lot of help unfortunately. I have had the stoma now for 7 months and wondered how long you had yours before it finally settled down.

I kept a food diary for a couple of weeks but still don't seem to be able to pinpoint what causes the worst problems. Things go along not too badly for a couple of days and then I seem to have times when all I have is pure liquid - and lots of it!!

I don't know how anyone manages to work with an ileostomy - I find it almost a full-time job dealing with the emptying, cleaning, changing almost non-stop!

Although I use a two-piece system which should enable me to leave the flange on for a few days and just change the pouch this never happens as I always have leakages down into the flange. I have tried all the various pastes, collars, wafers etc and I think it is just the sheer volume of poo all the time which is causing the biggest problems.

I know the magnesium I take doesn't help as it causes diahorrea but unfortunately have to take it. I take foods high in magnesium to try and help as well.

So sorry for this monologue - I will now get to the point!!

If you can be bothered, do you think you could possible give me a note of your normal diet for a few days as you seem to manage it all very well then maybe I can get some tips from that. All the stoma nurse ever said to me was to eat jelly babies and marshmallows - not a lot of help as I don't like them, plus being diabetic I have to watch my sugar intake. I just take heart from the fact it is an awful lot better than it was but any help would be so gratefully appreciated.

It's really so heartening to know you've had yours for 6 years, I do hope I manage to survive that long!!!

Thanks so much.

Cathy

[Clematis in reply to cathysal]

Hi Cathy

I am sorry you are having so many problems. As I recall the bag settled down within a year but I had plenty of accidents along the way, some in public.

My diet is mainly, cornflakes or toast or a piece of fruit for breakfast. Lunch consists of a sandwich cheese, tuna etc or beans on toast or egg on toast and supper is fish, or chicken with veg or chips. I nibble in between, biscuits or chocolate and in short eat what I fancy when I fancy.

I hope this is a little bit helpful. My heart is with you.

Love Clemeti

[cathysal in reply to Clematis]

Hi Clematis

Thanks so much for your reply. After I had sent my post to you I re-read it and thought it sounded awful self-pitying drivel!! Sorry about that.

As I said I've had the bag for 7 months now so think maybe I'm just being a bit too impatient with things as it has definitely settled down a good bit from what it was.

It's good to hear you follow a normal diet which is what I'm aiming for and that you eventually overcame the problems so I'll just keep going (not got a lot of choice anyway have we!!) and hope another few months will make all the difference.

Your posts have been so positive they definitely help so thanks again.

Love Cathy

[cathysal]

Thank you so much for your replies. I was beginning to think I was on my own with this combination!!

I'm off chemo for the time being as the tumours left after the surgery have had really good shrinkage and I feel that has helped a good bit.

I am taking loperadmide and codeine regularly but I also have to take Magnaspartate 3 times daily because of low magnesium. I had to be hospitalised for 4 days to be re-dydrated and have blood infusions because of the high output. Things are much better now but I think maybe the maganaspartate causes a lot of the problems because it says too much can cause diahorrea - why is everything such a catch 22 situation!

Jennie, I'm so sorry to hear you lost your daughter especially at such a young age. Life is so unfair at times.

I know exactly what you mean regarding the Ileostomy Assoc. My daughter said it's probably only the people who are experiencing problems who'll be on the forum yet there will be thousands of others living with it without any real problems.

Clemetis I'm so pleased to hear that you manage it very well, it really gives me hope. Your less in, less out makes perfect sense, especially as I think I'm getting a hernia on the right-hand side of the stoma and am terrified it's going to develop into one of those half-a-melon sized hernias. So I'm trying not to eat too much and put any more wieght on my stomach. I have to wonder though, how it's possible to put on any weight at all as it no sooner goes in than it's out again!

I've just started keeping a food diary in the hope I can pinpoint what the worst foods are. I know chocolate is a nighmare and have cut it out completely and think I do better without sweet things at all but sometimes can't control myself and have to have something!

I certainly will come back to you both for advice if you're sure that is okay.

Best wishes

Cathy

[Cadbury]

Dear Cathy

I am sorry that you feel so alone with this problem.

There are some ladies with OVCA and an ileostomy but I do not think that you will find many on the Ovacome forum as this website still has quite a small membership.

In America, where 22,000 ladies are diagnosed every year with OVCA, there is an Ovarian Cancer Charity based in Washington. Their forum has a vast membership and I have seen discussions on the problems of an ileostomy.

inspire.com/groups/ovarian-...

You may like to try their website and see if it offers you the kind of information that you are seeking.

Isabelle Cadbury

[cathysal in reply to Cadbury]

Dear Isabelle

Thanks for your reply and I'll certainly have a look at this site. I always think the more information you have the more it helps you to deal with things.

How awful it must have been for people dealing with all this years ago when they didn't have access to forums for the discussions, reassurance and help that we can have.

Best wishes.

Cthy

[saraht62]

Hi Cathay,

I've been really interested in reading your question and all the answers. I've ovarian cancer and have just had an iliostomy.. i'm actually still in hospital after my surgery last week.. going home tomorrow.

I can't believe how often the bag needs emptying! Obviously its very early days for me but i'm dreading it lasting too long. I dont feel i could go far from home like this, and certainly not back to work.

I have noticed that if i take magnaspartate suddenly the stoma becomes very active.. its a vicious circle isn't it, the high output causes magnessium to be low then the magnaspartate causes the output to be high.

It sounds as though its gradually slowing down for you. I will keep reading your blogg and any advise to see if it may help me. Very tiring isn't it! But it feels good to be able to eat again!

Take care and good luck

Sarah

[cathysal in reply to saraht62]

Hi Sarah

I was just flicking through the 'tags' and saw one on ileostomies so had a look. Believe it or not I had actually forgotten I had posted on this subject!! Looking back over it just reminded me of how awful it was in the early months. I then saw your post from July which I somehow missed.

I hope that things are settling down for you and thought I'd just let you know what stage I'm at nowadays.

I now lead a 'normal' life with the ileostomy (named Squirty - self explanatory I think!). The output has much reduced and I've been off the magnaspartate for about 3 month now. I think this has made a big difference.

I can more or less eat what I want now although I always try to keep it all in moderation - as Clematis told me - less in, less out!

The output can still be pretty erratic but I think that's the nature of the beast! However, my coping strategies are in a much better place nowadays. I very rarely have leaks and when I do, there's no panic at all, even if I have one when I'm out.

I hope yours has settled down as well - although it's about 15 months now since my op and it's still pretty early days for you. Have you joined the Ileostomy Association and gone onto the forums at all?

Good luck. Cathy XX

[alfie19]

Read your posts regarding stoma bag.

I know someone who has complicated Crohns Disease and a Stoma Bag for 10yrs.

They were always having painful sores to their skin next to the stoma.

They were put in touch with AMCare stoma a Consultant who visited them at home as it was more convenient and more private.

New bags were issued no more sores or pain.

Contact amcaregroup.co.uk