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  • stome leaking

    I was woundering for those of you that have had surgery and the internal pouch, how you handle the leaking. I had my second surgery in Jan.10,2002 and quit for about two months. Then I got a major pouch infection and started leaking ever since. We did go in and look and everything is fine, have not pulled the passage way out of the pouch like I did last time. He put me on Ditropan XL, but it does not seem to be working and I am so tired of leaking all night long. Then it gives you dry mouth so bad. I am so tired and so fustrated. Especially when I leak at work. Its very embarrising and humilating. Please help. [img]frown.gif[/img]

  • #2
    I too had major leaking with my stoma. My doctor put some colagin around the area and it helped alot. I still have some leaking during the day but all depending on how much activity I'm doing. The nights are pretty dry unless I have drank a bunch of liquids before heading to bed. You might ask your doctor if that would be a possability for you.
    Mindy

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    • #3
      In the beginning I had a lot of leakage after my surgery.In time it got better and now I hardly leak at all- my pouch is 10 years old! I was told I could wear an ostomy pouch over the stoma to catch the urine and I was also I could put an indwelling catheter in at night and hook up to night drainage if things got really bad.I did neither and just kept changing the covering. I understand how frustrating and annoying the leakge can be. My stoma does spit out mucus, so I must keep it covered and now the only time it ever really leaks badly is when I have an infection. I hope with time yours slows down. Judith

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      • #4
        Hi
        I am looking into surgerys i was wondering if you could tell me more on your surgerys and outcomes of your pouches. how big are they? what is the major draw back? did you return to work? how long on recovery?
        sorry for all the questions i just want to know wich is the best surgery for me
        thanks jodiii

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        • #5
          jodiii
          i dont know what surgery you are thinking about. is it an augmentation or complete removal. i had a bladder augmentation and self cath thru stoma. if you dont know what a bladder augmentation is, it is where the take most of you bladder off and replace it with an intestanal pouch. where they take a portion of your intestins and make a pouch to conect to your remaining bladder. then they make a stoma to be able to empty your bladder.
          i had this done with many complication, not everybody has them. i was out of work for approx. eight months, but did return after it was over.

          i hope you find the information you are wanting on your options. there are many so i encourage you to talk around to find what you think is best for you.

          i will be thinking about you so keep us informed on what you decide and when you are going to do the procedures that you decide on. i will be praying for you and your decisions.

          Mindy

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          • #6
            Mindi
            Thanks for the information. I guess i am confused a little. i thought that there was a conduit bag for the outside and also a surgery for the inside with a bag.through a stoma. how has augumentaion worked for you? I have read some scary stories and am frightened to have that done. I am just in the first learning stages of my surgery options so i apologize for any errors i have made in questions. I have an appointment to go over all of them with my uro next weds. i have read what is posted on the sight here in the hand book and have brefly discussed in detail with my doctor about them. i was hoping to get some insight from others on theres so i knew what questions to ask before i go in there.
            thanks for the information
            jodiii [img]confused.gif[/img]

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            • #7
              jodiii
              i understand how you are feeling trying to find the best option for you. everybody has to decide for themselves what kind of life they want. for me the augmentation was the best at the time for the fact that i did not have much trouble with my kidneys and i did not want to have the uriters messed with. the drs just took all of my bladder but the portion that had the uriters connected. i have really enjoyed, if that is how you want to take it. with the augmentation i have to self-cath thru the stoma, but at least that helped me with the size of the bladder which i can hold alot not sure how many ccs but alot more than i used to. i used to have to go to the restroom every 10-15 min. now i only cath about ever 3-4 hours. which is wonderful i do not have to spend the day in the restroom. well good luck on finding the right procedure, and keep us informed of what and when you decide. i will keep you in my prayers.
              mindy

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              • #8
                Mindi
                Thanks for the information i go in weds 24 of may to go over the different surgerys. with all the feed back i have a better understanding and have alot of questions for the doctors. thanks again for all the imput. i will let you know
                jodiii [img]smile.gif[/img]

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                • #9
                  I had the ileal conduit (external pouch) on March 7th. I thought that would be the safest and easiest way to go. For the first 2 months I have had nothing but complications. I had to wear the Jack Pratt sugical drain for 6 weeks because the doctor kept saying I have a urine leak in my abdomen. But x-rays showed no such leak. The second dye test showed the drain was laying in the loop, pressing on the conduit. He moved it and then the draining stopped after a couple of days. But a week later I was in the hospital with a bloodstream infection that almost killed me. None of the doctors I had for that really seem to know what caused the infection. One says it was the drain, another said it was a kidney infection, another said it just happens because I was surgically altered. I think none of them really know for sure. Anyway, this was my 3rd time in the hospital. The first time being the surgery, the second time a staph infection at the drain site, and the 3rd time it was the bloodstream infection. The last infection was so bad, it started to shut my lungs down and I was in ICU on a respirator for 4 days. I think no matter which type of surgery you choose, none of them are trouble free. But IC isn't trouble free either. For now I can say that I'm doing fine, but one never knows what tomorrow might bring. These infections can come on very fast. Well, sorry for going on and on. I wish you the best of luck in whatever type of surgery you choose. Take care. Love, Karla

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                  • #10
                    I had my surgery doone about two years ago. They removed my bladder and uretha, he made me an internal pouch out of my small bowel then took part of my large intestine to make the straight away from the pouch to the stome. My stome is in the middle of my belly button and is the size of an eraser on the end of a pencil. I self cath with a 16 french cooda red rubber cathater. The orginal surgery I was in the hopsital for 10 days, then home three months then went back to work. My husband stayed home with me th first two weeks as I could not care for my self. He had to bath me, wipe my behind, etc. Then I start leeking so I had a second surgery in Jan. 2002, come to find out I did not follow the drs directions very well and pulled the straight away out of the pouch. So we did a second surgry. I was in six days, came home for two then back in for nine as I had a bowel obstruciton. Other than that I have had no complications other than the leaking now and pouch infectioins. I was having a problem with dehydration but found that if I gave up caffeine my body started reattaing the fluids again. with so much of my insides gone fluids were going right thru me and I was getting dehydrated. The pouch infections I just call and he gives me an antibotic. But I am not in pain anymore and my life is more managebale. I belive that it is different for each person. Plus the drs have alot to do with it. I have a extremely great dr and he treats me like I was more of a family memeber than a patient. So hang in there and do alot of research before you do anything. To go back and be in pai again is not an option for me and the minor leaking and infections are nothing compared to how it use to be. I use a special bandaid that is made for stomas which has helped on not having my cloths wet. Feel free to email me at [email protected] if you need more information.

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