Ok I had the second of 3 surgeries last Thursday. I thought it was going well but the stoma is different this time. It sits down below the skin. The ostomy nurse had a hard time coming up with ways to keep it clean like this, resulting in the fact I will have to remove appliance daily to clean which will affect my quality of life. She had advocated for Surgeon to fix it while Surgeon sees this as temporary as 3rd surgery is approx 12 weeks. My question is this shouldn't I get them to fix it so I will heal properly and be ready for number 3? I was the bread winner of the family so I had planned to go right back to work. But if it is going to be painful and a burden shouldn't I have them correct it?
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If it truly sits below the skin and it is impossible to get a good seal for longer than a day, even with the help of a ostomy nurse, I would. Let your surgeon know what is going on and tell them this will just not do. I don't know what is involved to fix it, but I would for sure ask. Your surgeon sees it as temporary because they don't have to deal with it for the next 11 weeks. Wish you all the best.
OK they did not fix the stoma but it sits a bit higher now. I am still in a lot of pain is that normal two weeks out? Shoud I be doing normal things or should I still be in recovery? Everytime I try to do normal things I break down in sheer pain. I crawl back into bed in defeat. 10 weeks til takedown.
I had the three phase surgery. My stoma was easier after first surgery, I did have some leaks and had to change bag (emergency situations).
My second phase my stoma was very challenging, because it's the loop ileostomy which is a different area of intestine. The wafer was precut and never seemed to fit and I had raw, stinging area the entire time. My output had a lot of liquid. My stoma extended, and then it hid (freaked me out) called Mayo nurse, and she helped, it does happen and I will be okay.... Plus the constant raw skin around stoma. My third surgery was scheduled 16 weeks out. It seemed so long. I took one day at a time and practiced yoga which calmed me and made my body strong.
Third surgery and dealt with the new reality of my body assimilating to this. I am happy I don't have the ostomy, I am now on this journey of my body adapting to the J-pouch and all of which that entails. Diet and routine definitely helps.
This is my journey and I am a stronger and more compassionate person because of this. Hang in with your stoma, breathe deeply be very kind and gentle with yourself.
My best to you. Lori
Ok now almost 4 weeks after 2nd surgery. Having a pain in bottom while sitting/driving. And a huge amount of leakage. Everytime I stand and start to walk it's an uncontrollable flood from the butt. I change pants 6 times a day. Help I think it's excessive and can't function in any meaningful way. My hubby was counting on me being back to work by now. But I can't between the pain, pressure and leaks. Anyone else have this? I feel helpless.
This is not normal, Sharon. Please call your surgeon that you are having daytime incontinence and this pain when you sit. Also check your temperature morning and night and be watchful for fever.
Jan 
Thanks Jan. Chief of surgery set appointment for me on Friday. So hoping to get to bottom of it! I so far haven't been running a fever but will continue to monitor.
How are you doing, Sharon W...? Praying you have found some relief...
Oh thanks for asking. Actually, I'm a bit worse. My back started hurting last Wednesday. I've heard people say " my back went out" that's what this felt like. Tramodol doesn't help. Now I have a head cold or something so I'm going to my primary care today to see what's going on. I am still having the leakage and it's independent of the bag I think. I can have an empty bag and have leakage. So the flex sig next week might tell her more.
Well, shucks! I was hoping you had gotten better! Hopefully you'll find something about at the flex sig but until then take care!
I don't get on the site alot, but your post caught my attention.. please take your time to heal. I was off work for 6 months.. it took about a year to get back to about 100%. I had some issues like yours where fluid built up and while I had the bag before the take down..I had leakage also.. it never really subsided unless I would 'bear down' a bit and the fluid would drain. You will need time to still heal post takedown..and your body has to adjust to a new normal. After time, it gets better...but take it one day at a time..
Krah, thanks so much. I had the flex sig yesterday. Now I guess a pouchogram. And if that's good then we will schedule takedown. I am still having a lot of leakage. I feel like it is getting worse but I guess I'm the only one worried about it. Thanks I know after takedown it will be a new world. And I will be out of work for awhile.