ladies I need help?

[spunkylady]

I have a continent stoma, I belive a kock pouch based on your description. I had a complete hysterectomy and my bladder removed in 2004 due to non malignent tumour. this tumour also killed one of my kidneys. The Drs at that time built me a neo bladder with the hopes that i would be able to void fairly normally -0this did not work at all. fisrt I could not void and then eventuallu I became completely incontinent. I am an active young 50ish so this was devastating.

I am from the middle of Canada and went to Toronto, Ontario to see a Dr there. My best option was the stoma which I cath. I am not going to lie at first it was trying to get better from the surgery ( I also hemorraged and had to have several transfusions) then learning to cath. But that is behind me and this is way better than wearing diapers.
Finally here is my question: I have been leaking from below and need to wear a mini pad at all times, this has been going on since the surgery which was 2 years ago. My Dr at home said it would liklley go away after healing, not so. I have since gone to another Urologist who did tests and can not see my pouch leaking. He is really trying to help but as he did not do the surgery it can be difficult. I went to my gynecologist who ruled out anything there. The new Dr. wants me to go see the Dr in Toronto, easier said than done - his office does not even return my calls. Why can the Drs. not just talk to each other??? I also have stones in my pouch and he said wait until I go to Toronto to so anything .Anyway Ladies has anyone ever had this leaking with a continent stoma? I am pretty much at my wits end here.

Any input and assistance would be really appreciated. I just would like to be dry for once.

[Harleyangel]

Hi Spunkylady,

I had my continent diversion done 5 years ago. Mine was do to a uterine infection. After the hysterectomy they found that the pressure of the uterus had destroyed the bladder. I too had leakage. At the top of the vaginal canal there was an opening that was the size of a quarter. No one knew exactly what the fluid was. It was not urine because the pouch was not leaking. Only conclusion that the doctors could come to is that is was internal waste that had been shed. My doctor was not concerned as this shedding happens naturally and the body usually just absorbs it. I just had an opening that it could get through. I had to wear a pad at all times. It also caused problem with chafing and there was a persistent order. I finally went to the Mayo clinic and saw a plastic surgeon this past summer. He took a skin graph from my thigh and closed the opening, among other things. I have not had any leakage in a year now. There were no health risks during those 5 years but having the opening closed did improve my quality of life. Hope this helps.
Mollie

[spunkylady]

Mollie;

Thanks for answering. Your leaking issue sounds like mine and it is a pain. I find your input so interesting and helpful. They say my pouch is not leaking so it has to come from somewhere.

You said he closed the opening & other things. What other things are we talking about? - If you do not mind answering I am having some crazy thoughts.

I am going to copy your info and talk to my Dr. about it. The DR in Toronto still has not called me back. I get the chafing etc it is so frustrating. If there is fix why should we not have it after everything else we have been through, its not too much to want to be dry.

Thank you so so much for sharing with me, it is a bit of a senstive subject. I am glad I joined this Board as it is so interesting to see what othrs have gone through and know that there are suppotive people out there.

Our bodies have been through a lot we deserve help and answers from these Drs. And here I get information from a stranger who takes the time to anwer. It may not be the same thing but who knows???
Thank you again.
Peace
Debi

I will let you know if I find anything out.

[Harleyangel]

Debi,

Because of internal damage that the uterine infection caused and the number of surgeries I had to drain the infection, the hysterectomy, and the diversion, I developed scar tissue adhesions to my small intestine. This caused digestive issues that sent me to my doctor last winter. My doctor then sent me to Mayo clinic to get these issues corrected. The doctors at the Mayo in Rochester MN decided that they would do a skin graph to close the vaginal defect when they were in my abdomen dealing with the adhesions. They used some muscle from my groin area and covered the muscle with the skin graph to reconstruct and close the defect. The doctors told me that the techniques they used were really just a complete vaginal reconstruction since I had everything removed during the hysterectomy. This is the type of surgery that is done during a sexual re-assignment as well.
The other part of the surgery was for section of scar tissue that had wrapped itself around my small intestine and when they removed it, the intestine bruised. They did a temp. loop ileostomy to let the intestine heal. This also gave the vaginal area time to heal with out fear of contamination. Last summer really sucked having the bag but it was wonderful to be dry for the first time in 5 years. It has been almost one year since all this and I have been dry for all of it. Yeah!!!!

[LisaB]

Hi.
I have an Indiana pouch and cath through a stoma. My native bladder is not hooked up at all. Do you have a neobladder where they took intestine and attached it to your own bladder or is yours all intestine? Just clarifying.

I too go to Toronto. Do you go to the docs at Sunnybrook? I'm very familiar with the "not answering" problem. If you haven't been in over a year you have to get a new referral from your family doctor. Have them fax it with your issues and put urgent on it and that you are already a patient. You may have to wait 3mths or so but at least you should get in. What doc do you see?
Let me knowf and if you're at the same doc as me I can get you fax numbers etc.
Lisa

[spunkylady]

I need to reply to both of you kind ladies.

Mollie
I showed my family Dr you info and he said that sounds like a fistula that you had and the Specialists are saying I do not have this. I am hanging on th the info.
Thanks for sharing the details with me. I did make an appt. with my gynecologist to confirm that this is not as similar situation. Will keep you informed.

Lisa:

Thanks for the response. You know I hear different names for pouches and it gets me a little confused as to what they call mine. My real bladder was completely removed 6 years ago and a neo bladder was contructed from intestine. When that failed to work my original Uro Dr. sent me to Dr Herschorn at Sunnybrook. The big issue was that I was completely incontinent. After meeting with him he felet the best option was the pouch and stoma that I cathe. I ended up having the surgery that week and staying there for 3 weeks.

They took my original neo bladder and augmented it with more intestine, to make the pouch. Come to think of it why am I even ever hungry they took so much of it!! LOL

This leaking has continued since the second surgery 2 years ago. I even went to another Uro specialist where I live and he says he can not see my pouch leaking. He suggested I make an appointment with Dr. Herschorn in TO and he will send a letter to our health system so they will pay. However as you well know even when you are a cuurent patient that nurse he has never ever calls back. So... yesterday my Family Dr said he will fax a letter to Herschorn and tell him I need an appointment.

So we shall see what happens I realize I will have to wait but you get used to that. My biggest problem with the DRS here is that they did not do the surgery and getting follow up assistance is difficult. They did not do the surgery. the Uro I have seen lately has really tried to help but is baffled himself. He will do what he can. For example I also have stones in my pouch, he is going to wait and see if I can get in to Dr. Herschorn before he does anything.

I will keep you posted if anything else happens.

I do really do appreciate both of your input. What a great way to talk to people that have been there and done that???

Keep well

Debi

[LisaB]

Hi Debi
I see Dr. Herschorn as well. I've been seeing him for about 25yrs, he would want to know what's all going on with you. He could get rid of your stones too I'm sure. Where do you live?
I think your dr. faxing him is a good idea, maybe he could hunt up his email address some how. I do have his fax number if you need it.
Let me know if I can do anything for you.
Lisa

[spunkylady]

Lisa

Thanks for your assistance. I actually left another message yesterday and the nurse called me this am for an appointment - with Dr. Herschorn.
I am going in July as I have to make arrangements to have medical pay for the flights etc.

What I would like to accomplish is two fold; Why am I leaking and can he somehow work with my Dr. here so I do not have to fly back and forth.

Last time I went there I was there 3 weeks and I can not do that this time - lost my job then, nice eh!!

I am grateful for having the surgery and appreciate what has been done, but my main problem has been follow up at home.

So if it takes me flying to T.O. so be it. I am happy to get a start at moving on.

Debi

PS Thanks everyone for your input I really appreciate it and will continue to be a part of this discussion. Maybe I can help someone else....

[LisaB]

Hey Debi

Have you gone back to Toronto yet? What's new? Did he help you out?

Lisa