I had UC for 7 years, finally had the surgery to remove my colon and get the j-pouch in June. After my first surgery 3 days later in the hospital part of my small intestine tore, lead to an infection and another surgery. Developed an abcess and another hospital stay a week later. Had an abcess for 3 months finally got the drain out. Went back to Dr. last tuesday to have ct scan and barium enima x-ray. CT scan found small pin point hole in J-pouch. Now the Dr. says I have to wait another 4-6 months before he'll try again. I have issues with my loop ileostomy, constantly leaking, skin irritation.I feel alone in this, I've joined an ostomy group but we meet only once a month my bosses at work don't understand what i'm going through. Has anyone had these issues and does it really get better?
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I have not had your troubles, but thought I would answer so that you would not feel so alone. I did have a leak, but I had a 1-step, so never did have an ileostomy. Draining the abscess and leaving the drain in for a month was enough for me. I think the leak sealed by the time they discovered the abscess.
There have been a number of people here who have developed pouch leaks while waiting for their take-downs, and were disappointed with long delays while this healed. This sounds like pretty typical recommendations, as these things can be pretty stubborn. But, yes, they do usually eventually heal.
As to your ileostomy; have you been consulting with your ostomy nurse? Tried convex systems or other brands to try to get a better seal? Loop ileostomies can be the worst, but the proper system makes all the difference! An ostomy belt also can be very helpful.
Jan
There have been a number of people here who have developed pouch leaks while waiting for their take-downs, and were disappointed with long delays while this healed. This sounds like pretty typical recommendations, as these things can be pretty stubborn. But, yes, they do usually eventually heal.
As to your ileostomy; have you been consulting with your ostomy nurse? Tried convex systems or other brands to try to get a better seal? Loop ileostomies can be the worst, but the proper system makes all the difference! An ostomy belt also can be very helpful.
Jan
RamonP85, I hear you. I think one of the hardest things to deal with as we go through surgeries and hospitalizations, is when things don't go according to plan. I've had multiple complications pre and post surgery that lead to dozens of hospital stays and trips to the ER. Lots of people don't understand, and this can be hard to talk about. I've come to realize that there really are good days and bad days, and lots of days in between. You are not alone in your struggles. Wishing you all the best, M
ramon,
I hear you. Sometimes I think I am the complication queen, a title I am not proud of. Try your best to think day by day.
Also sounds like you MUST see an ostomy nurse as soon as possible. He/she should be working with you to get appliances/gear that fit, don't leak, are comfortable, and don't cause skin irritation. Try to focus on getting some assistance in that area. As I believe if you can get that problem solved, it may help boost your spirits at least a little bit.
Hang in there though. You are positively not alone in this journey.
best wishes.
liz
I hear you. Sometimes I think I am the complication queen, a title I am not proud of. Try your best to think day by day.
Also sounds like you MUST see an ostomy nurse as soon as possible. He/she should be working with you to get appliances/gear that fit, don't leak, are comfortable, and don't cause skin irritation. Try to focus on getting some assistance in that area. As I believe if you can get that problem solved, it may help boost your spirits at least a little bit.
Hang in there though. You are positively not alone in this journey.
best wishes.
liz
Sometimes I wish I'd waited longer between my first surgery and my take down which was 8 weeks later. I agree with everyone above about trying to find a better system for your ileostomy. Frustration is a good word to describe what you are going through and this is also serious.
Your boss probably doesn't understand that you've had 5-6 feet, your entire colon/appendix/rectum, of your intestines removed plus have had problems with your small intestines as well. This is no little gallbladder surgery. You don't want to wine too much because you don't want to appear weak and give the appearance of not being able to perform your job. S/He is not supposed to weigh your health issues into account for anything but depending on who they are that might not be the case. I hope you aren't in that type of atmosphere and if you are feel for you. I've worked in that type of atmosphere before but not while going through these surgeries. Keep doing the best you can as that is all you can do. If you have any specific issues with your boss or peers maybe some one here can help you.
Hopefully your stoma nurse will help you get to feeling better and the next few months you will continue to become stronger until your take down surgery. The time will go faster than you think.
Good Luck!
Your boss probably doesn't understand that you've had 5-6 feet, your entire colon/appendix/rectum, of your intestines removed plus have had problems with your small intestines as well. This is no little gallbladder surgery. You don't want to wine too much because you don't want to appear weak and give the appearance of not being able to perform your job. S/He is not supposed to weigh your health issues into account for anything but depending on who they are that might not be the case. I hope you aren't in that type of atmosphere and if you are feel for you. I've worked in that type of atmosphere before but not while going through these surgeries. Keep doing the best you can as that is all you can do. If you have any specific issues with your boss or peers maybe some one here can help you.
Hopefully your stoma nurse will help you get to feeling better and the next few months you will continue to become stronger until your take down surgery. The time will go faster than you think.
Good Luck!
Thank you all that have replied, this has truly helped me see that I'm not alone in this and that others have also gone through what I've gone. And that hopefully things will get better I appreciate it thanks again.