Extreme case looking for treatment center

[PaulMC]

Hi, I'm something of a long-time lurker here. My condition is quite extreme at this point, so I'm posting for advice or recommendations.

My first symptoms appeared about 14 years ago, and my condition has progressively deteriorated during this period. At this point, my bladder is chronically inflamed, with a normal voiding capacity of 2 oz or less. I void 50-75 times per day, and pain varies from annoying to truly excruciating. Unfortunately, my bladder is now so leathery and small that urine is backing up into my ureters and kidneys, threatening their health. Augmentation surgery has been strongly recommended. This is from several very good urological surgeons, but they do not particularly specialize in IC. What makes me hesitate is that I have read about about migration of inflamation to the augmented tissue, as well as continuation of pain symptoms despite the surgery.

Other than anecdotes that they have occurred, I have no idea how common these complications are in IC patients. Does anyone know? Have there been any studies?

More to the point, my ideal scenario is to go to a center that specializes in IC, where a team of physicians who have experience with IC would consult with me and each other about treatment options. Does anyone know if such a center exists? I am willing and able to go anywhere in the world, literally. I may end up with the same course of treatment, but I'd like to at least consult with an expert who has expertise in outcomes for IC patients.

Thanks in advance for your responses.

Paul

[ICNDonna]

You have some extremely difficult decisions to make. I personally have never considered augmentation surgery or bladder removal. I seem to be able to keep my IC pretty well controlled by hydrodistentions and DMSO treatments, along with following my IC diet.

I have personally known three people who had their bladders removed. Two have stomas and wear drainage bags; the other has an internal pouch and catheterizes herself at regular intervals. One of the two who had her bladder removed is doing extremely well --- I haven't seen her for several years, but it had been years since she had the bladder removed and the last time I saw her she was living a very active life. The lady with the internal pouch has had some problems with the pouch, but was able to work full time with it. She's now retired --- I saw her several weeks ago and she had just returned from a vacation in Mexico.

Yours is one of those instances where you have to weigh the potential benefit against the possible side effects. My uro once told me about a lady who had augmentation surgery twenty years before. After twenty years, she did develop IC symptoms and was being treated. She told him that twenty years pain free was worth it!

We have several people who post here who have had surgeries. I hope some of them will also respond.

Warm healing thoughts,
Donna

[Judith56]

Hi Paul, I currently have an internal pouch which I love. I started off with the augmentation, it only lasted 8 months since the IC set up shop in the entire new bladder. From that I got an ileal conduit, but due to some problems I needed to have it revised and was offered the option of the internal pouch. For me it is as close to being "normal" as I can get. I work and do just about anything I want. I will PM you where I had my surgery.Judith

[mayray518]

Paul I wish you luck in whatever you decide. I know how horrible the pain you have suffered is. You deserve a new normal life. Had the elavil not worked for me I would have pursued the augmentation. I was at my breaking point after suffering for 5 years and you have been suffering for more than that. I am thinking of you.

[icnmgrjill]

Hey Judith,

Could you share where you had your surgery done here in the forum too?? I realize that we really don't have a list of centers that specialize in bladder reconstruction. Would love to know who did your surgery.

Jill :)

[Judith56]

Sure Jill! I wasn't sure whether that was OK. I had my orginal surgery- the augmentation and the cystectomy done at Columbia Presbyterian Hospital in NYC way back in 1986, so I do not know what is gpoing on there now as I no longer go to that hospital. I had my revision and conversion to my internal pouch done at Lahey Clininc in Burlington, Massachusettes. That is where I currently go for yearly check- ups as well as any other problems that may arise. The uro I see there I have seen since 1978. I had lived in NJ from 1983-1990, so that is why my initial surgeries were done there, though I had started to go back to Lahey Clinic in 1989 right before we moved back to Vermont. Judith

[donutgirl]

Hi Paul,

My doctor, Dr. Robert Evans in Greensboro, NC is on the Board of Directors for the IC Assn. He is a urologist that specializes in IC, particularly IC in men from what I understand. Frankly, I can't fathom him being any better with men than he is with me. I know that patients come to see him from all other the U.S. Once in his waiting room I met someone from Utah. If you would like his address and phone number, please just let me know.

I'm so sorry you are going through such misery.

Hugs,

Diane

[donutgirl]

Oops...I fogot to say that I know Dr. Evans does the internal pouch surgery as well as others because we discussed that at one time.

Diane

[aggiegurl]

Paul,
I am so sorry to hear that you are having such a hard time. I was diagnosed with IC back in 1990. I had got to where I was getting up 12 times a night to go to the bathroom. My uro had discussed augmentation with me and I was ready to do ANYTHING to change this pain. I was so glad that I did that but just as you mentioned the augmented part got affected with IC and I later had to have a complete cystectomy. My uro had gone on a one year endoscopic training at UCLA in California and I unfortunately was hurting so bad chose to go to someone else because I could not wait until he got back to Texas. I had an ileal conduit done and needless to say I did not have much luck with that and stayed infected from reflux like you are experiencing now. My original uro came back to town and I went and seen him and he gave me and internal pouch called an Indiana Pouch and it is the best thing I have ever had. I have had it for 3 years now and feel absolutely wonderful. My doctor is awesome. If you would like any more information about him or have any questions for me, please feel free to ask me anything for I would love to help anyone that I can. Good luck to you, chin up.

Hugs,

Janet Lynn

[Judith56]

I find it interesting that Janet Lynn's story sounds almost identical to mine as far complications from surgeries. Two places you may want to look into for the surgery are the Mayo Clinic and the Cleveland Clinic- both are experienced with all types of ostomies and they are major med centers. Mayo is in Minnesota and Cleveland Clinic besides the one in Cleveland, there are a few branches of it. I do know one is located in Florida. Judith

[PaulMC]

Thanks to all here who have responded.

I have been educating myself as best I can about my options. My primary objectives are to protect my kidney function (which is currently threatened by hydronephrosis), and to protect my ability to function sexually.

Any surgical solution that involves cystectomy has the potential of damaging erectile function. So...

On Saturday, December 18, I am scheduled for an augmentation with continent stoma. For those who might not know, a continent stoma is basically a conduit that is made of one's own tissue and runs from the skin surface to the bladder (or neo-bladder, if one is constructed). It is intended to be tight enough -- either at the skin surface or a the point of attachment to the bladder, I'm not sure -- to prevent urine from leaking out. A catheter is inserted into the opening at the skin and run to the bladder in order to void. So, in my case, I will retain the potential of voiding through my urethra, but if that is problematic, I can catheterize through the stoma.

Though I've been told a number of stories about IC patients having problems with augmentation, there are several things that make it the most attractive option at this point. First, it should preserve sexual function. Second, my pain seems to occur mostly when my bladder distends, to the very limited capacity I have. Post void, I am usually pain free until it refills. Also, when I've been catheterized after procedures -- sometimes for a week or 10 days -- I am virtually pain free. This gives me some hope that augmentation may work for me, even though the inflammed bladder tissue will remain in the flow path of urine.

In any case, thanks again for your responses. If anyone has any other suggestions or advice, I'm all ears. At least until the 18th!

Paul

[Judith56]

Good luck Paul! The way they keep you continent is by creating valves at (usually) at both junctures, This will also help to protect your kidneys. One of the reasons I switched to the internalpouch was that the way it is constructed protects the kidneys from reflux. With an ileal conduit you will have reflux, so I agree it is not a good option for you. Judith

[aggiegurl]

Good Luck Paul! I hope everything goes well for you. My augmentation was called an ileocystoplasty. They had taken a part of ileum (small intestines) and took off the part of my bladder above where the ureters come in and patched this on top of there. This really worked great for me for 7 years. This eventually got IC as I discussed earlier. I now have a continent pouch and it is the greatest thing I have ever had. As Judith talked about, I have a valve and this is what allows the urine to not reflux like it was doing when I had my ileal conduit. I have to catheterize about every 3 hours and it holds about 500cc's. I could not be happier and I live a NORMAL life in every aspect. I was 22 yrs. old when I had the augmentation and 32 yrs old when I had my ileal conduit and 33 yrs. old when I had my Indian pouch (internal pouch). I know you are concerned about your sexual function but you have to realize there are so many things to help in that area nowadays as well. I hope everything goes well for you.

Chin up,

Janet Lynn

[mayray518]

You are one brave girl aggie. Question to you: Do you think that because the ileal conduit got IC that the urine must contain the protein (APF factor) and that is what destroyed the conduit. Guess we will have to find out with more research.

[aggiegurl]

Mayray,

I really don't know enough about the APF factor to answer your question. I did not really explain myself very clear I don't think. My augmented bladder ended up getting IC but my next surgery which was the ileal conduit did not get IC it just kept getting many infections and tremendous reflux and was damaging my kidney function. These were two different surgeries. Just wanted to make sure you understood that. I had the augmentation in 1992 and the ileal conduit in 2000. I turned around in 2001 and had the internal pouch done. Thanks for your question, just don't have an answer since the IC did not get on the conduit itself.

Janet Lynn
aggiegurl

[curlycue]

Good Luck and I will be praying for you on the 18th.

PS have you spk with Lowell parsons here in San Diego? He is suppose to be really great.

[PaulMC]

I consulted with Dr. Parsons about 6 years ago. At that time, he put me Elmiron, which, in retrospect, I didn't really give a fair shake. I was only on it for about 4 weeks and quit because 1) it made me nauseous; and 2) I started a different treatment that held some hope of cure.
I should say that, once I'm healed, I intend to instill Elmiron and/or Heparin into my bladder at least a few times a week, as a prophylactic measure.

Thanks for the good wishes. Keep me in mind on the 18th.

Paul

[Queensweater]

Hi Paul!
I am so sorry to hear that you're not doing well. Unfortunately, I live in Canada so I cannot offer references for specialists. But just know that I'm thinking of you and hope you start to get better soon! :grouphug:

Heather

[curlycue]

Hi Paul,
I sure will be thinking of you on the 18th. It seems that you have done your homework and are ready to go ahead and face the next step in your life. Good Luck and let us know how everything works out.