Cynthia
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As the President it is a question that I and our board have grappled with. I just checked and on the website there are 182 what we call peepers and 1 user myself. This is a low number of peepers but it is constant 24/7. We have such a large data base that people spend a lot of time researching. We assume that most are finding what they need. Our intent was to build up a substantial data base and we have done so. Sooo, people don’t post to a under used forum they are finding what they need, but they are not getting the community, the cheer leaders they need.
We are in the middle of a redesign of the forum, with an eye to making things as simple to use as possible, and ways to grow community. We spend a good amount of money and time to help people find us but we need to do better.
I think one of the problems it that once people are through their personal crisis just want to put in behind them. While this is very understandable , if you can check in on the newbie’s once in a while it would help. If you remember It means a lot to hear you can get through this I got through it as have many others have, you’re got this. Some survivors have told me that coming back triggers some form of PTSD by their description. That I can understand and we wish them well in their healing. We have lost community now we have to find ways to get it back. We recognize the problem now we have to fix it.
Your thoughts?
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Happy birthday Doug!!!
Great news I think of you two often don’t be a stranger.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Welcome to our form, reflux can have different causes. You need to review your case with your Urologist and find the cause. Reflux can cause kidney damage the how long and how much it takes will also be a topic to discuss with them. Hopefully you caught it early and will nip it in the bud before damage has occurred. Once again knowledge is power, now that you know what is happening you can deal with it. Let us know what you find out.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
[list=1][*]Sounds like so far so good. Please keep us updated.
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Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Sorry you are going through this. Unfortunately you main question will only be answered with time. As all of us can tell you it is a painful time when anything seems possible. The good news is that even if it is the big C the vast majority of cases are treatable. We can’t make time go faster but we are here if you need us. Please keep us updated.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Thc, I will share what I know and have learned from other “poachers” but you have to promise to run it by your medical team as you have to remember we are not health care professionals. Yes if you are having to catch that often I imagine it is causing wear and tear on your stoma. And I know what the frustration is like when you are leaking. But take a deep breath it takes patience and perseverance but maybe this may hold some of your answers. It is possible your problem maybe that you have either an irritation of the bladder or an over abundance of mucus. I don’t know your specifics or if you already know all of this but I will tell you what I know.
I was diagnosed in ‘04 and had my radical cystectomy in ‘06, I also have an umbilical Indiana. I had my surgery at the University of Chicago Hospital and my Uro is Dr. Gary Stienburg.
Now for the leaking, it can be caused by different things. I know a lady who has had hers for 20 years with no problem unless she eats Chinese food. She figured out over time that it is the MSG if she stays away from it she is fine. Mine can be caused by a few different things as we will talk about. The first I would imagine you have already checked on and that is an infection. Food interactions are probably less likely to be the culprit but it is possible. I have found in the summer if I drink to much lemonade the acidity makes my bladder rebel and leak. Also if you are diabetic high blood sugar can cause leaking so making sure that they are well regulated is important.
Another thing that can cause leaking is mucus. So lets talk about mucus oh joy. When your diversion is new mucus is normal over time it diminishes to only a little when you pouch is happy. It also is almost the perfect medium to grow bacteria so you don’t want an over abundance of mucus staying in the bladder any longer than you have to. I was taught to do was to flush my pouch to break up the mucus and to flush the bladder itself of any possible irritants. See if you can set up an appointment with your doctor for them or their nurse to show you how. Also if you have insurance with a prescription it may pay for your supply’s. It is a simple to do using a irrigation syringe fill with 50cc’s of sterile normal saline, you then insert the tip of the syringe into the funnel end of your catheter and inject the saline into your bladder try to aspirate it back into the syringe if it is not doing so easily just remove the syringe and allow the saline to drain out the catheter. I was told to do this twice a day and once the mucus decreased to do it once a week or as needed.
So this is what I do if I start leaking. If I am leaking every two and a half hours I would back up to every two hours and start flushing my pouch, add time between catheterizing until you are back to normal. I would also make sure that I was eating and drinking things that are none irritating. Pure water is important and the least irritating remember garbage in garbage out. Remember you can have your favorite spicy food once you are on track but once irritated the bladder is not very forgiving.
Not all Uro’s teach pouch training after RC but mine did and this is what I was told to do. Once all the tubes where gone and I was direct to catheterizing, to start at two hours and to add a half hour a week if adding a half hour causing leaking try adding fifteen minutes or less if you have to and do this until you reach three and a half or four hours. This is a long haul but worked well for me and I was continent by the sixth week. I found that having a timer or an Alexa or that type of thing helps a lot especially at night.
I to this day I have outbreaks of what I call pouchitus meaning my pouch is irritated and training, a none irritating diet and retraining is my answer. By the way I am sure you know that finding something to keep you dry with a umbilical Indiana is hard but I have found male pads made by Tena work for me. Have you found anything that works for you?
Hopes this helps and I am here if you want to ask more questions or just to vent.Cynthia
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
As someone who is still enjoying life after a 2004 bladder cancer diagnosis I of course can tell you yes it was worth it. I live a full life with my diversion and can honestly say it has not stopped me from doing a thing. Yes chemo and a radical cystectomy are rough but as I went through it I kept my eyes on the prize getting to the other side of wellness. I don’t know your husbands exact situation but let him know that there is life after bladder cancer. If he has questions we are here.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Pro, l had an RC in ‘06, a Neobladder was not an option so I chose the Indiana. Due to the fact that my urethra was removed and I had pelvic radiation my recuperation would be different than you would expect. Even with that I can tell you that I had it done in May and was dancing a conga line at a wedding in August, maybe not for long but I had a great time. The good news is very rarely do you meet someone who had a RC years in that doesn’t think their diversion is the best choice. The bad news is they all have a learning curve, and will take time to settle in.
My Indiana gave me back a life in more ways than one due to treatment I was 50% incontinent prior to my RC so being continent again is golden. I have a stoma is hidden in my navel and about every 4hrs I insert a catheter, I can urinate sitting sitting or standing, it is painless and does not take me longer than it did before. You train it once they give you the go ahead after surgery by adding time a little at a time until you can go 4hrs between. It works for me and I would recommend it but you might want more information on the neobladder a lot of men swear by the Neo but make sure it is done by an experienced surgeon. All Urologist are trained on the bag while they are training so they may not do all diversions and if they do they do a low volume. My surgeon does 3 to 5 a week the local guy did 2 or 3 a year. I am sorry you had to join or club and let me know your questions I will do my best.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
You don’t sound like a broken record and you should never apologize for having the very normal feeling you are having. There are many books written about the stages of grief but the truth we all grieve in our own ways and time. Right now you are in the eye of the hurricane but again time is your friend. This has gone from we are fighting this to where you are now not giving you time to wrap your mind around the new situation. Cut yourself some slack, this is one of the hardest things we face. There is a time for tears this is one of them, grieving is natural and needed.
As for why her cancer grew and spread so fast? That is a question researchers have been trying to answer for a very long time. Maybe someday we will have all the answers but not yet. My sister passed unexpectedly years ago and I was obsessed with the why and how for a long time. What I really was asking was a universal why really, why did this have to happen at all? It took time but I had to except that sometimes there are no definitive answers and even if there were they would really change nothing.
Be as strong as you feel you need to be but don’t rob yourself of the grieving you need. Again we are here if you need us.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
My heart breaks for you and your family, our family has been there. Something I have also learned that no matter what you always want more time. It is a blessing she was able to make the decision. Hospice is a gift to the family and the patient it is just as you described it, about comfort care. Both of my In-laws and my own father went through hospice and I considered it a blessing and a privilege to have been able to share that time with them as hard as it was but that realization came with time. Just be there for her even if she doesn’t seem to know it. Hold her hand if she seems to like it and offer what comfort as her family you can. Talk to the nurses and the hospice staff they will help you understand what is going on. If you need us we are here and know you and your family will be in my thoughts.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Drinking water during the day will help thin the urine so it doesn’t irritate as much. And I understand wanting to hold your urine due to pain but if the urine contains irritants it is counterproductive. Also make sure your doctors know of any supplements you take. Let us know how you are doing.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Gina,
Please seek a second opinion at a university hospital with a designated urology department. Even if you feel the doctors you are dealing with are great a second set of eyes can be very important. Let us know what state you are in we may have some suggestions.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Tmc, Sorry you are here but welcome to our community. Sorry this took so long but a stomach bug had me busy for a few days. It sounds like you have been through a lot with this whole thing. I was dxed in 04 and had a Indiana with an imbecile in 06. Everything was fine at first the normal growing pains training the Indiana but about a year I started having trouble accessing my stoma. I spent a lot of frustrated time trying to get the catheter in but it would finally relax enough to get it in. I was told to using disposable sterile catheters to start with a ten and insert it. After draining it clamp it off and tape in place and leave it changing it every time I cathed. In about a week to go to the 12 French and go another week and then go to a 14 French. I was also told to be on the lookout for a UTI as having a indwelling catheter will up your risk for one. I tried and I wish I could tell you it helped but about a month later I ended up in the ER and a young intern at our local hospital spent a few hours trying to access my stoma after I failed at home for hours. The resident called my surgeon and his resident and my local one strategized. Finally I we were able to get in and I drained over 1600cc’s of urine. The problem that was worrying me was urine backing up into my kidneys and doing damage. About that time another problem started and I ended up with a neph tube from the left kidney as it was not draining properly and I had a raging UTI. I live in Western Massachusetts and my surgeon was in Chicago so off to Chicago I went. They had found something in my kidneys in the scans and the assumption was that the cancer had spread to the kidney so it had to be scheduled to come out. At the same time I felt it was time to address the trouble I was having with my stoma. It was decided that they could do a revision to it when they did the kidney to loosen it up. It ended up it was not spread of cancer but a very rare type of abcess that had formed in my kidney and they were able to do the stoma revision.
Since they surgery in 08 the good news is that I have never had another issue accessing the stoma again. But the downside is that under the right situation I do have leakage. There were times I felt that I jumped from the frying pan and into the fire but time has been my friend in this. The first thing I found out was to keep track of how much I drank and how long I had gone between catheterizing. If I drank a lot of liquid I could be cathing every 2 hours or go the 4 if I didn’t. I started setting my alarm on my phone for every three hours at night. I found a pad I could wear with my navel stoma (Tena Men’s Guards) they are shaped in a V the wide part at the top and they work well if you wear a higher topped panty. Now eleven years out I it is not perfect but if I leak it isn’t that often and I have learned the causes and try to avoid them.
I know all this does not solve your problem but I do have a suggestion. The only surgeon I would trust to do a revision on a Indiana is one that does a high volume of them. Now this may describe the surgeon who did your original surgery but if it does not you need to get a second opinion. If you can let us know what state you are in we may have some suggestions.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Welcome to our community. Many of us have faced the same decisions you are and we all come to our own conclusions for reasons as diverse as we are. For me the Indiana was the diversion of choice and I have been very happy with it. I tried the bladder sparing protocol and failed spectacularly. Please make sure if you discuss bladder sparring that you understand the down side from the radiation and the problems it can present with reconstruction. I can honestly was that 90% of the health challenges I have faced since dx are related to the after affects of the radiation not my diversion. If you search this forum for bladder sparing there are many posts on the subject here.
You are going to one of the best places in the country for bladder cancer half the battle with bladder reconstruction is the volume and experience of your surgeon. For example my local Urologist did the bag only and did three to five a year whereas the one that did my surgery did three to five a week. Ask us and your surgeon a million question, right alter my dx I kept a notebook handy so I wouldn’t forget to ask them. For example you will want to know from your surgeon what kind of diversions do you offer how may of them do you do a year? What kind of diversion does my personal situation qualify or disqualify me for and why. Do you do nerve sparing to preserve my sexuality?
We are here if you have more questions let us know.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Hi,
Welcome to our community but I am sorry you have to be here. I have been thinking about your post since you posted it. I travel quite a bit but I have never taken my diversion on a cruise, so on that I can only give my thoughts. First as you already know flying with normal saline in you carry on does not work. I have always put it in checked baggage but only a couple of bottles. I like yourself make my own but of things such as flying I get a prescription and buy the labeled sealed bottles as that is important they probably would have a problem with an unlabeled bottle of liquid. And form what I am told they screen luggage coming on the cruse ship. So you need to make a few phone calls. One to your airline to find out what they way about liquids you need for medical treatment, they cruise line for the same question and your doctor to ask if you can use bottled water or not and for a prescription and possibly a letter stating why you need the saline. As for the alcohol I perchance the small bottles of hand sanitizer and throw them into my luggage, be careful to chose the ones that are alcohol only and not other ingredients. When I travel I use disposable catheters. I always keep in my pocket if I fly a regular rubbles catheter when I fly in case I am separated from my luggage. And if I can I mail my supples to my final destination if I am going for a few weeks.
Those are just my thoughts will you let us know what you find out please it could help others that face the same question? Enjoy your cruse!
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society