Ileostomy and Mucous Fistula

Hi Daisymayalbie

I have had my ileostomy since May 2015 as I had a tumour that had wrapped itself round my bowel, my profile has my full history. I too really struggled and I went to a local stoma support group in the first months following my surgery and was really put off. No disrespect intended but at the time I was only 46 and the rest of the people in the group were 70 years and upwards so I never went back.

I did have some advice from the stoma nurses at my local hospital and did a lot of googling as to start with I had a lot of problems with leaks and pancaking and still do every now and then depending on what I have been eating.

I find it helps if I don't eat after 6pm (although I still have to get up to use the toilet at 2am every day). I also use extra adhesive strips and skin protector wipes both are available on prescription. I find these items very helpful.

You are not alone with your feelings as I still have my low days and I know exactly where you are coming from. If you want to know anything else please let me know.

Hi Shal1969, Thank you for replying. I read your story too & you have also been through such a lot. I went to a cancer meeting but found no real discussions on things I wanted to know about. I use extra adhesive strips with aloe vera but I have a skin barrier spray which doesn't really work so will look into the skin protector wipes.  I get on average 3 hours sleep a night, my gp said to try napping in afternoon to make up but I feel that defeats my night sleep. Vicious circle but at least i'm still here. I to don't eat after 5 but have a drink of juice if I get hungry during the night as it takes the edge off. I find my bag suppliers ( Charter) very good, the people on the order line I can really talk too & they don't mind. Keep in touch & let me know how you are keeping, it is so good to be able to talk to someone who is going through similar things who you can relate too. 

Hi Daisy May.

You certainly have a lot going on in your life and I am not surprised your confidence is in pieces.

I take it you're not coping with your ileostomy and fistula is it because the fistula is near to your stoma and causing your problems with leakage etc. Unfortunately an ileostomy can be a continual flow but I hope you are getting prescribed medication to slow it down or thicken it up although as you probably know certain foods can cause it and other foods tend to thicken it up but I am sure you've explored all the options available including Jelly Babies, marshmallows and gummy bears.

Non ostomates don't understand the problems we have and it is known that being an ostomate can result in marriage or relationships breaking up.

But you have found us and WE understand what it's all about and I am here to offer you as much help and support as you need and want. You can ask me anything and I will answer you and ask how can I help you to make your life a bit more bearable. At no time will I give you the impression that you should put up and shut up and that applies to everyone in this group because we all know one thing for certain our bag probably saved our life.

What can I do for you.

Is it just your ileostomy that's making the way you feel just now or is it a combination of everything else going on in your life if you could let me know and I will introduce you to some of my friends in the other groups who will be only be too pleased to speak with you.

I need to discuss with you your sore skin around your stoma, I am sure we can help you there.

Would you be willing to share me what type of pouch you are using, one or two piece, make and the other items you are using in your stoma management. When was the last time your stoma was inspected by a stoma care nurse..

Please do come back to me, I want to help you in any way I can.

Look forward to hearing from you.

Ian

Sorry forgot to mention I also keep a food diary so I can see which foods affect me more than others. I'm back to clinic tomorrow and hopefully start the new treatment. Will let you know how I go. By the way we've got a perfect excuse to eat lots of Haribos (tangtastics are my favourite). Keep in touch and keep well.

Hi Shal1969, I was told to keep a food diary but haven't done it. I should really because my output is just so constant. It's got me quite down & I have started to reduce the amount of food I put on my plate. I must admit I love Haribos, both sorts, my mouth waters at the thought of the tangfastics but yummy none the less.  Good luck with clinic. Speak soon.

Hello Daisymayalbie,

I have a colostomy, ursotomy  and a fistula. My colostomy like your ileostomy goes off more or less most of the time and my fistula constantly leaks down below. Both were brought on by chemo and radiotherapy. My stoma nurse told me that because of the cancer treatment the stoma will be like this and other than take loperimide, there isn't anything else I could do. I have been offered to have the fistfis fixed but the success rate is low and I may end up worse, so I have declined that, thank you.

I have had my stomas for about 2 and half years. I was in hospital for over 2 years and had sepsis, cardiac arrest, a coma, my weight went down to 5 stone and I had to learn to walk again.Thankfully the cancer has gone but I get very depressed. I suppose it's natural. I just remember I am still here. I have okay days and not so okay days.

Non ostomates don't understand what we have been through and how awful and hard it all is. I was even told by a so called friend that I am lucky! How? Needless, to say I am no longer friends with that idiot.

Just remember we are here and Ian will always go out of his way to help you. 

I hope you feel and get better soon.

Hi Daisymayalbie

I've been to see my Oncologist today and after a long discussion about pros and cons of treatment I have decided to go ahead with the Sunitinib treatment. I've been put on the highest dose to start but one of the side effects among many others is chronic diarrhoea which is wonderful for us Ostomates! I am already taking 3 loperamide and 2 codeine 4 times a day so I am really worried how I will be affected.

I was then handed a leaflet regarding "Palliative Chemotherapy" which I thought I knew but it seeing it in black and white has hit me like  ton of bricks . They have told me if my output becomes unmanageable to stop taking the medication immediately and contact the hospital and they will change the dose.

Not a way I was expecting to spend a 50th birthday! Will let you know how I go.

Hi Shal 1969,  I'm sorry to hear your treatment is going to cause problems like the chronic diarrhoea & more so the palliative chemo shock. I can't  imagine how you're feeling right now. If my cancer returns I've been told I am unable to have chemo again, but I had already decided after my bowl perforation & sepsis & the surgery on my bowel that I wasn't going that route again no matter what the  outcome would be. I take Loperamide & Codeine too, was 4 four times a day but I take 2 four times at moment but after the past two days I'm upping it as my output has been so watery & it has caused a lot of skin irritation which has made me have to change my bag 4 times in one day yesterday because it was obviously getting under the seal. I still can't get to grips with cutting the perfect hole in my bag (Sensura Mia) It's times like that, that it gets me so down & the reason why I want to go ahead with the reversal. I've read on here before that the reversal itself is okay but you have severe diarrhoea for a while afterwards & need to be extremely close to toilets, along with other issues. My chemotherapy drugs were docetaxel(Taxotere) & cyclophosphamide. When is your birthday & I hope you will be having a full pamper day. Mine is the end of July, a summer baby through & through, I hate winter but do love to see snow. I love this time too when all the spring flowers are starting to appear. My garden is 100 ft long, I have a nice big decking area up next to house & then mostly lawn with shrubs to the sides. My sisters have told me that I need to think about getting a gardener this year which I've been scanning the papers for, but wow they want so much. I have 2 daughters, one lives in Barry & runs a big pub with her husband (Baruc Arms) it's a sporting pub but they also have live music & things going on all the time. With this past 16 months I've not been down because of trying to get used to things. Perhaps this summer I may do the trip. Anyway hope you are coping with the Sunitinib. Speak soon. 

Hello Lisa, Thank you for your message. I agree with you that some people can be so cruel. I have good friends & sometimes I do get annoyed with them when they say your still here that's what matters & on days when I wish that I wasn't which sadly have been more often just lately as i'm still not coping well on most days. I have been asked back to intensive care unit to talk about the time in there 3 weeks, several days in an induced coma & cardiac arrest during the actual surgery to remove part of my bowel. I'm on a cancer drug (anastrozole) for 5 years which it will then be reviewed if I've survived the 5 years at which it will carry on being taken for a further 5 years. Also Loperamide & codeine to try & cope with output which is constantly changing. Good grief I thought 3 months in hospital was long enough but 2 years, oh dear you've had an awful time of it & I hope things do improve for you. I lost 3 stone, put it back on though sadly. I must admit although I like my stoma nurses, to a degree they can be so matter of fact about how you feel & what to expect. Learning to walk again was awful as there were days I thought I would never get there, but I have even though I can't walk far. Chemotherapy not only poisoned me & perforated my bowel & caused sepsis but I have since developed RA (rheumatoid arthritis) & type 2 diabetes apparently caused by the chemo. I do hope I can have it reversed but reading some stories on here it seems a daunting task, but I must try. I to hope you manage to get more good days than low this year, speak soon. 

Hello Daisymayablie,

Thank you for reply. You have been through the mill too and I sincerely hope you get better and get the all clear. It helps a lot, although I worry about every ache and pain and think they are something ominous. 

It's hard dealing with a stoma at the best of times, especially when it's going off like Vesuvius and the loperimide doesn't really help. The stoma nurses are nice but I get annoyed as they look at me with such pity. Yes, I have put weight back on, (at 5'8", 5 stone wasn't a good look) but I would rather put weigh on than loose it for no reason, my worrying levels would hit a stratosphere.

My cancer was contained but the chemo and radiotherapy burned a whole in my bladder and bowel and gave me a fistula.

People don't understand and I have been told to stop moaning and looking for sympathy! Again it was by the idiot of an ex-friend. I know sound like a right moaning minnie but I am not.

Learning to walk again was awful and I still get tired. If I go to the supermarket with my dad, I fall asleep when I get home. 

I hope everything goes well with going back to intensive care. We have been through a trauma. When I was in hospital, they arranged for me to a psychiatrist, but that was a waste as I cried all the time and I didn't feel better. Maybe when I feel a bit stronger, I will contact the cancer hospital and join a support group.

I have every faith and will pray for you to get better.

People on this forum are lovely and will offer any help or advice. 

You take care,