Hi, this is my first time on here. I am so desperate to speak to anybody who may have suffered the same as I have. Okay, here goes.
I have had my colostomy for 1 year and I still hate it. When I first had it done, the surgery went fine and I was out of the hospital within 1 week. Everything was going fine, then about 1 week later I passed out and was taken back into the hospital because of infections. I had to have more surgery and they drilled 2 holes, one on either side of my stoma. Within 2 days, I was back in surgery because of an abscess which was very close to my stoma. I had all sorts of problems with leakage and poo getting into my open wound. I was on IV antibiotics and in the hospital for another 7 weeks. I have been on antibiotics ever since I came out of the hospital. I now have a large hernia which is due to be repaired in November, but I am very scared as I have no idea or pain when I get an infection. I also have a perianal fistula which they think is causing urine incontinence. Can anybody give me some advice, please?
Tricia
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 37,000 members who truly understand you.
It's not all about ostomy. We talk about everything.
Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.
🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.
Create an account and you will be amazed by the warmth of this community.
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Tricia, I had an ileostomy in June 2011. I had the surgery because of the number of perianal fistulas that I had, and the doctor said the only chance of them healing was to have the ileostomy surgery. I went into the surgery as it was permanent. This was the best thing that I could have done. I have not had the first stomach ache since then. I wish you lots of luck, and I would have to agree with Primeboy...... it would not hurt to get a second opinion. My first surgery was done in a small town close to where I live, and I honestly feel that I would not be where I am today if I had gone to someone more knowledgeable in the beginning.
Thanks for your replies, Primeboy and Shelly. I have had a second opinion; this doctor is the top specialist in stoma hernias in the UK. He is going to try to repair all my problems in one surgery. I just wish I had a day pain-free. Thanks again.
Tricia
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Hey Tricia, I have 2 hernias as well. Do you ask for a hernia specialist to check these things out? My best wishes to you, honey. You have been through a lot of B/S. That sucks, matey, really bad. We are pulling for you, honey. xxx Mooza. Aust... xxxxxx
Problems like you would not believe, the present bag system we have here in Manitoba, although supplied free to all ostomy patients in this province, I would not use on my dog because the ASPCA would come after me, and justifiably so.
Learn about some basic diet and ostomy pouch routines that can help prevent them.
I too have 2 hernias which cause a lot of pain all the time. I live with it. My Dr. does not want to do surgery due to complications that could occur, so I will go with it and take pain pills. At least I'm here every day, better than the alternative! Good luck to all those in the same situations.
Thanks, Shirlgirl. Hope all the best for you. Wish there was a guardian angel looking after people like you, but due to cutbacks, they've all been let go, apparently, and we're on our own.
My wife is not doing well, so I am despondent. No light at the end of the tunnel; matter of fact, the tunnel is collapsing before my very eyes, shirlgirl. I'm trying to be positive, though!
So very sorry, Kold - just be positive for her and yourself (family). We too just lost a great friend to cancer. His wife and kids watched him go for over 5 years - it was rough for everyone, but they stayed positive until his last day so he couldn't see them down. He died at peace, thinking they were all okay. They said that it was worth it, him telling them that he didn't have to worry about them, that they would be okay - let her think that for you and your family too. May God be with her and all of you. You will see her again, just remember that!
I hate my problems and I hate reading about the problems of others. But it helps to know that there are so many kind people out here who really care and will take the time to give words of encouragement. It makes me want to give a little praise instead of complaining like I have been lately. We can all make it, and thank God we have one another. I have been offline for a while, but I plan to be more active again after seeing what I have seen on here today. I put out a panic forum and had so many responses. This really helps. The answer is just around the corner for all of us as long as we keep looking and believing.
Yesterday was a day from Hades. My wife had an appointment at CancerCare at 11:15, but nobody even acknowledged we were there until 1:45. Then we got moved to another room, more waiting. The poor girl was already sick. She tells me, "Kold, take me to emergency." We were already in the building, so we went from CancerCare to the emergency department. Usually, if she is at home that sick, I call an ambulance; at least she gets on a stretcher right away. We waited almost six hours to have our name called. They took blood, then back to the waiting room for another hour. She was vomiting the entire time; by now, she's sicker than a dog. Finally, our name comes up, and she looks like she isn't going to make it. By this time, I am about to go postal. (By the way, if they treated a dog that way, they would most likely be fined). Now we're in emergency in a bed, my wife has an ileostomy bag, a gift from God. She is all settled in, IV the whole nine yards, so I go home to get some rest—yeah, poor me! I get a phone call from my wife; she's very upset. It is now five AM. She tells me, "Kold, my bag sprung a leak" (which, by the way, happens far too often). The nurse in emergency tells me they won't change my bag, which is by now a smelly mess. "You will have to call your husband to come and change it." If I was out of control before, now I am furious. Out of bed, back to the hospital with my bag kit in hand. By the way, my wife is legally blind and cannot change her own bag. By the time I get there, they have relented and actually changed the darn bag. Can anyone guess how thrilled I am now? Long story longer, today the bag leaked again while she is still in emergency at 2 PM. I asked the nurse if she planned to change the bag. She says, "You can do it if you want to; otherwise, I will do it." I tell her, "You do it if you don't mind; she's in your house now." She looks at it, throws a facecloth on it where it is leaking, and says, "I'll be right back to change it." Later that same day, around 5:30 PM, she still hasn't done it, and my wife is in this smelly mess all afternoon. Now she is being moved upstairs to a patient room with her smelly mess. Now the nurses on the floor have to change the appliance, which is what the chubby one was waiting for; she knew my wife was being moved, so she kept putting it off. And that, folks, is the kind of 24 hours my wife and I had.
Koldanuck, what a disgrace. You know these things happen all over the world in hospitals, and I am appalled every time I hear stories like yours. I haven't had the best experience myself. Is there any reason your dear wife has these leakages? I know I must go on, but I use ileo gels for my ileostomy, which I have never had a leakage with. The simple reason is that I'm using 2 at a time now, which is way better. But I think the reason too is that we lose so much water, and that can just erode the flange. I'm not sure if she has lost weight. My Coloplast Sensura comes with a small stoma measuring half-circle, so that can also benefit in case the hole is too big. Just if I can help anybody with the leakage, I'm very happy to give as much information as I can. Is she using the drainable pouch? And having it emptied? I had to empty the water so many times a day; it drove me mad. But ileo gel or the tablets, we can't get those anymore in Australia, but it isn't an issue. If I could truly help you to make any difference, I am at your service. Sorry, I can't be there in person, though. I know I have more issues than just this bag and having a crap time in our hospital system. It's so hard not to kick the crap out of the red tape, lazy, and seemingly uncaring, overworked staff at major hospitals. It seems like a bloody crime, as far as I'm concerned. I was shaking my head in anger reading your post. I just couldn't sit here without replying. Please, anyone with an ileostomy, please consider these wonderful little liquid catchers. You might need a few throughout the day, but please give them a go. You have nothing to lose. Yeah, I have heard of that word "postal" here too, but to watch a loved one being treated worse than a dog is no excuse. Bet they wouldn't let their mother, father, brother, sister be treated like shite. xxxxxxxxx Mooza, Australia, feel free to ask me. P.S. I don't work for the company; it seems I do rave about these gel liquid sachets, but I do some work for Ostomy Victoria and get the heads up on our newest appliances. Hope your wife gets some better treatment. xxx grrr :(
What a terrible thing for both of you to have gone through - hospitals don't give a damn anymore. I was just in a few months ago and I said I'd never go back to the one I was in - they were ready to operate on me for no reason - thank God I kept saying no, no, no - and it turned out I did not need any surgery at all. I hate to see what happens if we get Obamacare - it will really be awful. In fact, I just started having problems with my ostomy supply - questions to me, to my doctor, etc., and they said it was because of Medicare. Good doctors, nurses are a thing of the past; their lives have also been affected by all this, so in hospitals, you get the bottom of the bunch - feel so bad for you, but especially for your wife, what an awful thing for her to endure. May God be with you both.
We've gotten past the initial shock of it all, now forward and onward to better days to come, Shirl. Bring back the bad old days when maybe they didn't know as much, but you got better care as it was less of a production line. Next, next. I understand it's a business and they aren't in it to lose money, but today it's just cut and run. Have a good day, Shirl.
I am so sorry to hear about what you and your wife went through. Here in the UK, I guess I am very lucky as I don't have to worry about healthcare plans and all my supplies are free. God bless, thinking of you.
Kold, sometimes it does some good to write a letter to the hospital's administrator or board president describing in careful detail one's unfortunate experience with hospital staff and requesting a review of the incident. You may not get any satisfaction, but I assure you word will leak down to the offenders and they will be embarrassed. Perhaps they might even be a little more sensitive to the needs of future patients. We should not have to accept indifferent and apathetic caregivers under any circumstances. Good luck!
You are so right, Prime, I did write the letter in detail but haven't heard a peep from them. Indifferent and apathetic caregivers should be in another line of work; the good paycheck is what attracts them to healthcare, unfortunately.
Tricia, I hope that you are doing okay. Have you had any more news from the medics? Granny H, I am feeling for you; I have been there. The only thing that helped with my pancaking was the little stickers that Welland gives you. By putting them over the filter, it meant that the bag kept some air in so that the output could fall down. I only found this out after trying oil, putting a rolled-up bit of gauze in the bag, and still, I had to push and pull, but these stickers seem to make a bit of a difference. I don't know whether you have tried them, but I just thought I would let you know that they made a difference to me. Best wishes, Jenny