Complications after Cystectomy

Hi Lynn,

My husband had his cytectomy w neobladder on February 1 and spent 43 days in the hospital for a similiar situation. On day 10 post op he needed to have a second surgery because an internal stitch had popped open and his healing small intestine pushed through the inner muscle wall. He also had lots of fluid coming through the incision before they determined that he had popped teh internal stitches. He then had to leave the outer layer open to heal and to prevent infection. The next complication was a an ileus( paralyzed intestine) He was on TPN for 30 days and lost about 40 lbs also. It was wrenching to watch the frustration. Finally after about 33 days he started passing gas , but went through horrible constiapation and then diarrhea before he could go on regular food. We went home on 3/16/07 and started the healing and bladder training. He had a horrible time trying to void after about 10 days... then they discobvered that he had scar tissue gclosing up the opening to the urethra so had to have a small surgery to open it back up. He is doing well and voiding and emptying well now. Has had to do some self cathing for now . Night times are the hardest with leaking , but he is figuring that out as well. I guess right now we are feeling pretty blessed that we are going in the right direction. The only advice I can give you both is to hang in there- it WILL get better. My husband had regained about 20 lbs and is finally getting to go back to work and is much his old self. We still have many hurdles, but we will get there together.

Lynn and Harleygurl.....reminds me of what my internist said about hospitals...don't go there..there are sick people there! Lynn's grandfathers leakage is from the small intestine and we're all pondering that one...a nick of the knife??...we'll probably never know but we're looking into it. Harley your poor dad ...his leak is where the ureters are attached...maybe another stitch not pulled tight....plus the fact that he did not get the Golytely before the surgery and it was done on a full bowel. The bowels are the last to wake up and its very painful to have a movement. I think i cried for a month everytime i had to use the bathroom. Who knows if its old matter thats coming out of him or what? Whats the explanation on no roughage? I know when i had an obstruction i had terrible pain radiating in my back and of course the bile was backing up into the stomach as the obstruction was in the small intestine. If your dad is able to keep anything down its a good sign...i know i couldn't...it came right back up in the form of Linda Blair in the Exorcist spewing green bile across the room..not pleasant!! I hope he's on antibiotics right now....is he on a stool softener? My heart goes out to both of you . Pat

My 80-year-old father also had complications after cystectomy and the urologist said they were caused by a leak where the ureter joins the conduit. The accumulation of fluid caused his bowels to shut down and he also had a MAJOR staph infection, to boot. To solve this, since my Dad was not able to be opened up again at that point, they put a pelvic drain in place which exited from his right butt cheek (not too comfortable to lay on to say the least!) The purpose of this drain was to keep the fluids out of his periotenal cavity and seemed to do the job. The radiologist who did the drain procedure said if the ureter could be kept dry, it would heal itself since urothelium tissue is very "forgiving." He was also on TPN during this whole process which resulted in an 18-day hospital stay for the complications, 7 days longer than the stay for the original surgery. However, he seemed to gain lots of weight due to fluid retention.

They ended up placing a tube into the ureter to channel the urine out so it wouldn't touch the tissue where the leak was. CT scans indicated the leak was healing but he still has the issue of his bowels not working well. The general surgeon who was called in to manage a bowel obstruction should one exist, told Dad he couldn't eat any roughage or raw vegetables for a month.  So, he takes an enema every now and then or a suppositor. His bowels are sluggish and giving him fits.

To top it off, he most likely got the flu or a bad cold from the internist who was managing his blood pressure in the hospital. This doctor insisted on seeing patients when he had a runny nose and cough! Dad has an awful cough now and feels pretty run down. The surgery is just a vague memory after all these complications!

No, we weren't at MD Anderson but were at a university hospital in our large city. In my opinion, the doctors know what went wrong, but nobody is going to take responsibility for causing all these problems. I just want my Dad to get beyond all this and start to feeling better. So far, that's not been the case.

Dear Lynn,

I'm very sorry to hear about the complications your husband has been having. Even though as Pat says, I've "seen it all", this one is out of my league. Thankfully you're in the top place for cancer, their urology team is top notch and if they are stumped it's no wonder that me and Pat are also at a loss. Maybe a reader who has been through something similar will jump in and contribute something helpful, I hope so.

I understand the awfulness of watching a loved one lose weight and seemingly go downhill after what's supposed to be curative treatment. I am very sure that things will get better in your husband's case, that it's just a matter of time, patience and a whole lot of trust in the medical team handling the case.

I hope things improve ASAP. Please keep us posted.

I'm sorry I have no answers for you.
Wendy

Lynn....i really don't know what to make of that explanation that the small intestine was leaking....did someone not pull a stitch tight enough? What is their explanation?
I understand the weight loss....i too was on TPN after complications when a part of my small intestine got trapped under my ureter and became herniated...a very rare complication. My first surgery was done laproscopically but l0 days later i had to have the big cut....that one about did me in. I lost 25 lbs in 2 weeks and didn't have 25lbs to lose!! I had an incident after i asked for a heating pad thinking it would help the pain and because i was fairly numb in my abdominal area i really couldn't feel how hot it was...the next thing i knew i was oozing blood out of my stiches. The nurse called in the surgeon and he starts cutting open my stitches to my horror thinking its infection...after taking out about 5 stitches and everything looks just normal ...think a rare piece of steak.....!!.......But they had to leave the wound open and could not close it for fear of infection so i had to have it dressed periodically and it eventually closed on its own..although it took about 6 weeks for that to happen. So don't use heating pads after cystectomy!.......
You're in the #1 cancer center in the US so they should be on top of this and you certainly deserve an explanation as to why this happened. I wish i could be more help. Maybe Wendy can jump in here as she has just about seen everything. I wish you both well. Pat

On March 15th 2007, my husband had his cystectomy, in which he was able to have an Ileal neobladder.  This surgery was very successful.  After spending almost 10 days in the hospital, he was home for about 4 days, his wounds began to open up and a very strong brown liquid started oozing out.  We immediately called the doctor and were told to come in.  They observed and decided to perform a CT scan to see if the leak was coming from the small intestines.  The scan showed this to be the situation; therefore he was re-admitted into the hospital.  He spent another 10 days in the hospital which he was put on TPN, no liquids or food.  We were told that if his bowels were put in rest mode, the intestines would heal on their own.  After 4 weeks and loosing about 35 pounds, another scan showed that the intestines were healed; no more bowels were oozing out.  After a couple days of eating clear liquids, jello, popsicles, all of a sudden the wound, that was just about closed, started oozing again.  After they saw what was happening, they immediately re-admitted him back into the hospital, put him back on TPN and off any liquids or foods.  After another CT Scan they said that there was a small hole right above the largest wound but they can not do surgery at this time because that would interfere with the healing of his new bladder.  So I guess it is another 1 - 2 mths wait.  It's really hard to sit back a watch someone you love loose 40 plus pounds and nothing can be done. I guess the plus side is that his new bladder is doing very well.  He doesn't have full control yet, but with the IV's 24 hrs a day; it's really hard to get good control.  I realize that MD Anderson is one of the best Cancer Centers in the world but I'm not totally in agreement with the way the specialist are handling this situation.  It's been over 2 months since his bladder surgery and we are still taking steps backwards.   If anyone has experienced these types of complications or have some suggestions, Please let me know.  
Thank you,  

Lynn