Urinary diversion

[Ruthanne]

I have had IC for over 4 years and it has become worse since I had a knee replacement last year (who knows why.) My bladder has shrunk to less than half normal size, according to my last cysto report, so of course I am ridiculously sleep-deprived from the nocturia. After my last visit to the urology clinic for an instillation, which doesn't provide much relief beyond a few hours, they said because my IC is so severe, my best option might be urinary diversion. They referred me to a surgeon and I will have a consultation with him this Fri. 1/13. Of course, I have lots of questions. But I would like to know if anyone reading this has had this procedure and if so, what was the outcome? Did it take away the pain? I'm afraid that since nobody knows for sure what causes IC, how can they know this diversion would "cure" it? What if it's actually an immune system disease and the pain would just pop up elsewhere in the body? Or in the resected intestine? I am only considering the stoma-type of diversion where there is no external pouch. Is there anybody out there who has had this?

[icnmgrjill]

You posted this in the wrong forum so I've just moved it down to the "severe IC treatments" area. Urinary diversion has helped some just by giving the bladder a break BUT, before you consider surgery, you might want to check out this new clinical trial for LIRIS, a new treatment for IC which is generating a lot of excitement. I've been posting about it for about a year.... and this is the launch of the first US clinical trial.

http://clinicaltrials.gov/ct2/show/NCT01475253?term=liris&rank=1

[Ruthanne]

thank you, Jill. I've never posted before so didn't know how to navigate the forum very well. I appreciate knowing about the Lidocaine clinical trial. They are recruiting near my town, so I have a call in for more information. It sounds way much better than surgery.

[Judith56]

Ruthanne, I just celebrated 25 yrs of being bladder free this past New Years Eve. While I can not answer your questions as to pain control, I can assure that you will not have to deal with frequency so you will be able to sleep! My main issue was frequency and I did have urethral pain but they took out my urethra along with the bladder so those problems are gone. Everyone is different so what my outcome has been maybe different for you. I initially had to wear an external pouch because my original surgeon said the internal pouch was not perfected back then. After 6 years I had it converted to the internal type and have been very happy with it. Judith

[jen74]

Ruthanne,

It is terrible you are dealing with all this. I am guessing you might have gotten worse due to being catheterized during your knee surgery. Did they ever give you different types of antibitoics to see if you felt better, maybe had a infection?? The only reason I ask is because I would try every single thing before resorting to major surgery. Have you tried all medications available? Eleavil, elmiron, lyrica, neruontin, atarax, xanax, ativan, various antibiotics, valium, vaginal valium? There is also physical therapy, accupuncture, herbal remedies, there are other meds too out there that are being used to treat IC I just do not know all of the names. A major surgery like this is a very serious operation and there can be complications involved. It is not something to rush into. All I am saying is that I myself would try every single thing I could before going under the knife. If every possible thing fails to provide relief then surgery would be an option. what ever you decide, I wish the very best for you and pray you get relief soon.

Jen

[Ruthanne]

Thank you Jen and Judith. I have indeed tried everything you mentioned except acupuncture. The clinic staff, and a fellow patient there, told me that the acupuncture helps the frequency but not the pain so much. I would try it but it is expensive and insurance won't cover it. I already spend a lot on allergy shots and meds and I don't have a drug plan. As for the catheterization, I did not have a catheter with that knee surgery. My theory is that the coumadin (blood thinner) aggravated the pinpoint ulcers in my bladder from the IC and that's why my condition got worse. Also stress from that surgery could have contributed.

Of course I am considering surgery as a very last resort, but I at least want to go and find out about it. Today I signed up to participate in a clinical trial in the next town for the Lidocaine implant, thanks to Jill for bringing it to my attention. They will start screening Feb. 1 and I hope I am a good candidate. Even though it would have to go through FDA approval before this could be available, the study might provide temporary relief and maybe lots of HOPE!

Judith: What type of surgery did you have? do you have a stoma or an external pouch? Did your pain recur in another area? Did you have any post surgical complications? Infections? What about recovery time?

[Judith56]

Ruthanne,
I initially had an ileal conduit done and then after 6 years had it converted to an internal pouch as my conduit had many problems. It needed revising and I was given the option of getting an internal pouch so that is what I did. With both types of surgery you have a stoma (opening), that is what the urine comes out of. It just depends on what you use to cover it according to the type of surgery you have had.

[Briza]

Hi Ruthanne
Welcome to the board :)
This may seem far-fetched but given that your IC is so bad it is worth considering--have you tried a vegan gluten free diet? There's plenty of evidence to support its use to help with inflammatory and autoimmune conditions, including pain conditions. Just thought I would throw that out there since I am currently following this diet myself and have had near miraculous results very quickly with it for severe chronic pain and inflammation in my muscles (polymyalgia rheumatica) and so far have been able to avoid the standard treatment of longterm prednisone,which I was dreading due to the awful side effects. Maybe the diet could help you some, too.

Please keep us posted if you do take part in that trial!

[Ruthanne]

Judith and Briza,

Thank you for your help. I had the consultation with the urology surgeon who said that he wouldn't even consider surgery on me unless/until I'm hanging off the bridge (his words). He said this surgery is very major and he has only done it on a few IC patients - mostly very elderly - but typically on patients with bladder cancer. He said the results are mixed. Some patients have phantom pain and others have actual pain in other organs after surgery. Soooo. It doesn't sound like anything I want to try. He has me on Vesicare for the nocturia. I've been on it for only 5 days, but so far there is no improvement in the frequency and it gives me a very dry mouth. I've tried the overactive bladder meds in the past with no results and I have been told by the clinic I go to for my IC that those meds don't work on IC.

As for the diet, I was a vegetarian for many years, but since I've developed so many food allergies, and also trying to stick to the IC diet, my choices are pretty limited. I now eat some chicken along with fish (only hormone and additive-free) because I have lost so much weight and I have to eat something in addition to vegetables and rice. But I have noticed that I tolerate gluten-free products well, so maybe there's a connection.

The last several days I've been feeling almost normal, except for the frequency and urgency. I have almost no pain (knock on wood). I think the aloe vera capsules that I've been taking for a couple weeks now are helping. But all of us IC sufferers know that managing this is a constant challenge of trial and error. And it's not always easy to pinpoint exactly what helps.

[jen74]

Sounds like you found a very good surgeon. He was honest with you, which is a rarity these days. It is a very serious surgery and from what I have heard, only done as a very last resort. This disease sucks that is for sure, but it could always be worse, especially if there were some bad complications from surgery. Glad you had a decent surgeon who was honest with you.

Jen

[Fiona R]

Hi Ruthanne,

I was initially diagnosed with IC in September 1999, my urologist is an expert in the treatment of IC and we tried everything and I mean everything, there was not a treatment available that I didn't try.

In May/June 2003, I had major complications and could no longer pass from my bladder. I had an emergency Nephrostomy and on review my bladder was beyond saving and as I was struggling with the Nephrostomy (constant blockages and pressure on my kidney function) I had no option but to get an Ileal Conduit. I really struggled with the urinary diversion at first but slowly got used to it. My IC pain disappeared and I really started to enjoy life again.

However things didn't last and I suffered from a build up of mucus in the stoma site (the part of the intestines that they use, continues to secrete mucus). I tried a revision to an internal pouch in November 2006 but due to the amount of internal scarring, this was not possible and I got a revision of the original Ileal Conduit.

I've had a bumpy road since then and had to have quite a few operations to remove the build up of mucus plugs within the stoma - I guess I was just really unlucky!

I also have neuropathic pain and my urologist believes that the IC has gone into the ureters (which another urologist told me was impossible). I take Pregabalin and Duloxetine and also Versatis patches (which are Lidocaine gel patches applied directly to the skin).

Today I went for a Lidocaine infusion in the hope that it would provide relief for 4-6 weeks, hopefully I will get some relief. The Lidocaine infusion won't take all the pain away but should dull the intensity.

I think overall what I would want to share is that a urinary diversion is not the end of the world. Better to have a bag than be in a box, and that is where I was headed. I tried everything I could and this disease is just the worst.

I hope you find some relief with the Lidocaine trial. I am keeping my fingers crossed for you (and for me) that it works.

Best wishes

Fiona

[jen74]

Hi Fiona

Wow, you went through alot. Did they tell you what was causing you to not be able to pass urine into the bladder? What is a nephrostomy? Was this all caused by IC or did you have other issues which contributed to the IC? I am sorry you have been dealing with all these issues after your surgery.

Jen

[Fiona R]

Hi Jen,

Everything I have gone through is because of the IC and then complications from the IC. I couldn't pass from my bladder, there was so much scar tissue and the urethra had become so small, every time I went to the toilet it was a real struggle to pass anything.

I tried a permanent catheter, but it was so painful. I was a whizz with the in/out catheter after using them all the time when I using the Heparin instillations but I couldn't even get smallest catheter in at the end.

A Nephrostomy is a tube inserted into the kidneys to divert the urine straight into a external collection pouch. This was done as an emergency due to complications from the IC and the problems passing urine. The medical priority was to save the kidney function.

I will never say that it was easy getting the Nephrostomy done (it was horrendous as my pain relief wore off during the procedure), but it did allow me and the medics to find out that diverting the urine was the only way to alleviate the majority of the IC symptoms.

The Nephrostomy is a good option for those considering the urinary diversion because you will know if stopping the urine going through the bladder will help your IC, and its not a general anaethestic.

Getting the ileal conduit was a massive thing and if I had the choice then of course I wouldn't have gone down that route but it really was a matter of life and death and having the bag is only a tiny part of my life and not that much of a deal.

I guess I was just unlucky but I'm definitely a lot better now than I was a few years ago, and every day is different. I've got a great urologist and pain team and looking at some of the comments on this board then I realise just how lucky I am.

Fiona

[jen74]

Wow Fiona, I am so sorry you had to go through all that. Just out of curiousity, were you ever put on long term antibitoics or tried all the ones they have out there just to see if it would help? I am sure you did try everything, I was just curious. My regular doctor seems to really believe that iC is caused by bacteria. She says only bacteria can cause swelling and inflammation like this. I am so confused by this whole disease, it is so frustrating. again, I am sorry you had to go through all that.

[Fiona R]

Hi Jen,

Tried lots of long term antibiotics in case it was bacterial as well as IC (Trimethoprim, Nitrofurantoin to name but a few). Tried weekly injections of antibiotics as well (Gentamicin and Flagyl), but these create their own problems as the liver function has to be checked. No antibiotic ever worked but at least I gave it a go.

Please don't be sorry for what I've gone through, I always think that there are people worse off than me and some days I cope really well. I've also got an understanding husband which is a real bonus.

When you get to the end stage of IC, there is not much to lose in trying alternative suggestions, even when you know your own body better than any doctor, and you know they are talking rubbish. I think there are a lot of doctors out there that think it's bacterial and my urologist said that its not bacterial but an autoimmune disorder and I tend to trust what he has said as all the papers and reports tend to err on the side of autoimmune. I think you should trust your own instincts obviously still listening to your doctor and if you are not happy with them, then get a second opinion.

Best wishes

Fiona