Urinary Diversion Surgery

[cwolfrn]

I have had Interstitial Cystitis for 9 years, and soon will be having a Continent Urinary Diversion (Indiana Pouch) Surgery done. Any suggestions for me on what to expect postoperatively..in the hospital, and when I'm home. How can I avoid complications?

[OnOxyfor10yrs]

I am sooo very sorry for your constant suffering. The detailed synopsis that you wrote just broke my heart. I have bladder/pelvic pain syndrome and your story makes me cringe. I really feel like crying for you right now. All I can say is to write your medical history to all the urogyns in the country. Maybe try the Mayo Clinic? Their is a world renound urologist that is out of the University of Pennsylvania Hospital by the name is Dr. Kristine Whitmore. Her number I will give you if you want to PM me. I will try my best to at least be of some kind of support to you if you need a shoulder to cry on. I am at the point with pain in all my pelvic/vagina and bladder region that I was thinking I wanted it all cut off that is how desperate I feel. Take a chance and PM me.


L

[kathleenminaz]

Hi, my name is Katie and I am a patient who was diagnosed with a severe case of Interstitial Cystitis almost 7 years ago. My pain was so extreme that I tried everything to help including two trials for a dorsal column spinal cord stimulator, 1 trial for an intrathecal morphine pain pump, as well as BCG treatments and many others. Nothing worked. I had two different surgeries by two different doctors to confirm my diagnosis.  In desperation I decided to have my bladder removed.  At that point I had no quality of life anyway and I was barely 30. So although it wasn't my ideal wish it was worth the trade off if my pain could be reduced.  After my surgery I had major complications including splitting open all my stitches the day I left the hospital.  Not to be gross but it was a wound that was all the way down my stomach, almost 2 inches wide and very deep.  I rushed to the ER hoping they would just sew me back up.  They said they couldn't, I had to let it heal from the inside out.  So, I had a urostomy which was leaking because it didn't fit and a huge wound bleeding and more and both contaminating the other.  This went on for several months. I had to have a nurse come and pack my wound everyday and eventually was taught to do it myself.  Then because it wasn't healing I was put on a wound vac to help hold it closed to heal.  Not long after I became very sick with fever, nausea, vomiting, chills,and severe pain that was different from my other pain and not relieved at all by morphine.Also, my urine had a very ammonia like odor to it and often was orange in color. If my symptoms improved it would go back to normal.  At first I thought I had the flu and had so much going on I just tried to get through it.  After a week I felt a little better but within days I got sick again.  By the third time I was back at the ER. I was diagnosed with a Kidney Infection and high fever. I was sent home with antibiotics.  However, after some relief I would soon have these same symptoms return over and over for the last 2 1/2 years.  The antibiotics, while helping reduce my symptoms somewhat, were not curing the problem.  Or possibly I had another problem in addition.  I finally asked my urologist what he needed to see to prove I had a real infection.  He wanted positive cultures which I later had for both Psedomonas, E-Coli, Gram- Negative bacteria, and Staph.  Although some of these occur in the human body normally my immune system is so worn down from all my medical problems.  The continual antibiotics haven't helped either.  Each time I was put on an antibiotic short term.  I even tried long term prophlaytic antibiotic therapy with Keflex.  I continue to have the same symptoms.  I have had a catscan showing inflammation in the lymph nodes near the surgical site, a white blood cell scan showing accumulation of white blood cells in the lower quadrant and right side of pelvic area (exactly where my surgery was.  I have also seen an immunologist who gave me blood tests which showed elevated Sedimentation Rate, CRP, Total Complement, and Anemia.  My other tests including urinalysis have showed positive nitrates, elevated white blood cell count, and bacteria in some other showed the first two but not bacteria however I was on antibiotics.  In addition to my symptoms above I have not had a period in 3 plus years and am not menopausal.  I have very low estrogen levels for some reason.  My hair is falling out and I have had unexplained swelling in my legs that comes and goes (I was checked for a blood clot and that wasn't the case).  Is it possible that I have an infection in the tissue at the surgical site.  It was exposed to so many possible contaminants when I had an open wound, multiple surgeries plus I have had such a supressed immune system.  If that was the case I imagine it wouldn't fully show up on urine tests, etc. since it is in the tissue and not the kidneys or internal pouch.  How can I be sure this isn't a possibility? I figure that with all I have been through it wouldn't be that difficult to do a laprascopic biopsy to make sure and possibly relieve my horrible symptoms. I don't want to wait until I am so sick that I become septic and have the infection cross over to my bloodstream. I also recently had a loop-o-gram and my illeal conduit is not leaking. I am sorry for the long note but I wanted to try to explain my situation.  I don't know what to do.  My urologist is not helping me and no new one wants to take on a possible problem from another doctor's surgery.  It may be that some of these other infections were separate from this problem, I don't know.  Any advice from doctors or medical professionals would be greatly appreciated.  One other note, prior to my surgery I had severe pain but not the nausea, fever, vomiting, etc. I have now in addition. Thank you so much for your time. Sorry if I mispelled any of the medical terms. Katie

[cwolfrn]

Thanks for the info....I'll definitely check on site you suggested. I sure appreciate the input. My surgery is Oct 6 and even though I know to expect some post-op pain, I can't wait for the chance at a better quality of life.

[Dr_Smita_S]

Hi,
Indiana pouch is a urologic surgery which allows urine emptying from a pouch using a catheter at intervals.
Post operative stay is usually for 5-7 days. Usually there are 2-3  drainage tubes after surgery :
Tube 1: Through the new stoma
Tube 2: Through the temporary opening in the abdominal wall
Tube 3: Suprapubic tube; this is removed in the hospital after several days

The stoma tube is removed once the wound has healed and the you are able to self catheterize the pouch. A ‘check xray’ using a dye is done 4-5 weeks later to look for any leakages. If there is no leakage, then the last tube is removed.

Gradually the emptying time can be increased to 4-6 hours. Your doctor will advise you to wear a medical bracelet indicating that you have an Indiana pouch.

Dietary Precautions :
• Drink water frequently, eat small meals, ask your doctor about multivitamins and avoid constipation
Activity Precautions:
• Avoid lifting weights,  get regular light exercise (short walks),

Refer to the site for more information (http://asui.org/BladdeReplacement.html)

Take care and do write in if you need more information.
Regards