Hi there Sunny, thanks for the reassurance about the rash. I do hope you get your wound sorted out tomorrow. I'll be seeing my surgeon tomorrow and I'll ask him about the possibility of having the hernia repair done too. But I will leave it up to him and not push him as I trust his decision. I was just talking with a friend this evening who's a tattoo artist and she offered to put one over the scar when I'm done. I've never had a tattoo before but was thinking of having a "stoma tattoo" to remind me of this whole time... it's just a mad thought I had!! LOL
Take care, Colm
Past Member
Past Member
Hi Sunny, I'm new to this. I had my operation 3 months ago. It was a total ileostomy; they took all my large bowel away. I'm at my wits' end with it already. I've lost 3 stone in weight. The output into the bag is watery. I'm always dehydrated, tired, and cannot seem to get any energy to do anything anymore. I've been told I'm able to get a reversal done, but they say the output will be the same as now, so I'll be at the loo all day as I'm now emptying the bag about 12 to 15 times a day and during the night about 4 times. Can anybody give me some guidance on what I'm doing or not doing? I've been given loperamide to take 4 times a day, 10 milliliters at a time, but it doesn't seem to help. The stoma nurse at my hospital just says, "Bear with it, it will work in time," but it's now 3 months since the operation and it's not working as it should. I was in the hospital for 2 weeks due to complications with the surgery. The operation was supposed to take 5 hours or so, but it took them 9 hours, and recovery was 6 hours. They said my lungs were bad, but after I came out of recovery, I was in a bad way, having hallucinations and being violently sick on returning to the ward. I'm wondering if the surgeon did something wrong. I'm changing the bag 2 to 3 times a day and have got bags that strap on to me after they are sealed, as I had a lot of leaking.
Any help would be appreciated as I'm getting really scared I did the wrong thing by agreeing to the operation in the first place.
Sorry about my spelling.
Take care everyone.
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sunnydisposition.
Dear Teddy,
Sorry you have had such a bad time of it. I do not have experience of an ileostomy, but I do have a friend who had one and now has had a successful reversal with a J pouch. She controls her output with anti-diarrhea tablets and may use the toilet 5 times a day but nothing unmanageable.
Any ostomy person needs to drink more water than a person without. I try to aim for 5 pints a day. Also, a good colodia multivitamin supplement needs to be easy to absorb.
Have you also tried marshmallows? 10 normally does the job to thicken up output.
It sounds like you need the support of a group. It really helps to talk to other people who have gone through what you are going through. If you have had your large bowel removed, your output will always be a bit porridge-like, but my friend went back to work 3 weeks post-surgery and says she now has not looked back.
Lifestyle changes need to be made. For instance, I had to give up all alcohol and gas-forming vegetables like peppers and onions.
It will take time to get into the swing of it. Read everything you can and ask questions on the ileostomy forum on here. There are so many helpful people on here who really care and want to help.
Good luck x
Sorry you have had such a bad time of it. I do not have experience of an ileostomy, but I do have a friend who had one and now has had a successful reversal with a J pouch. She controls her output with anti-diarrhea tablets and may use the toilet 5 times a day but nothing unmanageable.
Any ostomy person needs to drink more water than a person without. I try to aim for 5 pints a day. Also, a good colodia multivitamin supplement needs to be easy to absorb.
Have you also tried marshmallows? 10 normally does the job to thicken up output.
It sounds like you need the support of a group. It really helps to talk to other people who have gone through what you are going through. If you have had your large bowel removed, your output will always be a bit porridge-like, but my friend went back to work 3 weeks post-surgery and says she now has not looked back.
Lifestyle changes need to be made. For instance, I had to give up all alcohol and gas-forming vegetables like peppers and onions.
It will take time to get into the swing of it. Read everything you can and ask questions on the ileostomy forum on here. There are so many helpful people on here who really care and want to help.
Good luck x
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three
Hi Teddyuk1946 ~ be patient with yourself. I remember how difficult and frustrating it was a few months after my operation, but with trial and error things gradually became easier as I learned what did and didn't work. I was leaking so much back then: in crowded shopping malls, in the middle of social events with friends, at work, in bed in the middle of the night, and blah blah blah. Since many on this site have excellent tips to minimize leaks, I'll only share a few:
a) Before applying flange, warm it and the skin around your stoma with a blow dryer;
b) Just before the flange contacts the skin, arch your back so you pull the skin tight in the area the flange will contact (this reduces the likelihood of the flange pulling loose when you "bend and stretch" throughout the day, but still be careful how you move, for example, I have learned that my flange will leak if I sleep on my left side).
And finally for now, when you look back on a decision you made in the past, I feel it's better to judge that decision by what you knew then, not by what you know now (we can't make today's decisions with the help of what we'll know in the future).
a) Before applying flange, warm it and the skin around your stoma with a blow dryer;
b) Just before the flange contacts the skin, arch your back so you pull the skin tight in the area the flange will contact (this reduces the likelihood of the flange pulling loose when you "bend and stretch" throughout the day, but still be careful how you move, for example, I have learned that my flange will leak if I sleep on my left side).
And finally for now, when you look back on a decision you made in the past, I feel it's better to judge that decision by what you knew then, not by what you know now (we can't make today's decisions with the help of what we'll know in the future).
Words of Encouragement from Ostomy Advocates I Hollister
Past Member
Hi love and thanks for your advice. I'm sorry, but I've now decided that it's now or never to do away with this bag, so I'm going to sort my problem out for good. My doctor says I'm to have this bag for life, but as I'm losing weight rapidly, the consultant couldn't give a damn. He just quotes it will change in time. Well, time's just gone out the door. I've had enough. I'm now 7 stone in weight, whereas before the operation, I was 14 stone. So I've lost 7 stone in less than a year. My life has come to an end. I can't stand it anymore. The bag, the hassle, the sickness, I want gone. Thanks anyway for your advice, but I'm going to shut the curtains and
close the doors and go into a peaceful sleep and wake up to a new life, hopefully without this horrible bag at my side. Good night love and thanks for the advice.