Bladder bypass surgery

[Carl Marshall]

I am 51 year old male with severe IC. Diagnosed 2 years ago. Have tried many cures, including Argonet,DMSO treatments,Elmaron,diet change and Herbs,accupunture,nerve stem, a total failure, having leads removed from my nerves in 2 days. My health has been in study decline, severe pain many days. My next step in treatment has been recomended to have bladder bypass surgery. This is a BIG a somewhat scary step. I have been given several options to consider from having a bag to making another bladder out of my large intestines. I am now considering one of these options to be done very soon. My question is, who out there in IC land has had this procedure done or is thinking of having it done, and what your experciences have been. Any input would be very helpful.

Thanks, Carl

[LBUSH49]

Hi Carl, my Name is Larry I first had a SUPRA PUBIC TUBE INSERTION FOR NEUROGENIC BLADDER ,THEN I had MITRO STOMA ,that is were a tube goes from my belly button through my appedix and into my Bladder and I have to catheter myself from my bellybutton and it goes into my Bladder ,My DR. told me there is a valve inside my bladder and the only way it would have any urine come out is when the catheter ,how wrong he was ,my Bladder has spasms and leaks out my bellbutton all the time 2-4 times a day . Now I'm only 49 and have to do this the rest of my life , and I told the Dr. I can't live like this , that operation was a 5 hour operation ,and a 12 day stay at the hospital , so now we have tried 4 or 5 medications to try to stop the spasms with no luck. I've had 7 back operations and all the nerve damage is my problem ,it's cuasing my bladder not to work right, I have a spinal stimulator which helps with my lower back pain , then this DR. tried a Bladder stimulator with no luck after a 2 week trial period then they removed that both operations for that were 2 1/2 hours long . So now the Dr. said the next step would be a Bladder Bypass, and i too am trying to find out more about this ,the Dr. told me it was a very long and serious operation , longer than that mitro stoma operation was. But I got hurt in 1985 , a convayor fell on me at work since then I've had 22 operations and right now I'm on 14 medications ,but I can't live my life like it is now so I will have that operation no matter what the chances are . My Dr. is at the Lahey Clinic Hospital in Burlington MA. and that hospital is one of the best in the country ,so Carl Kepp in touch you can EMAIL me at LBUSH47@YAHOO.COM and we can keep in touch I have some other information for you so send me a email Bye for now LBUSH49 Oh ya Carl I also had 15 BOTOX injections and that didn't work either

[Judith56]

Hi Carl, I had my bladder out 19 years ago, and am very glad it is gone. I intially had the ileal conduit- whre you wear an external pouch, but then had it converted to an internal one 13 years ago and love it. I am 49. I would be happy to answer any questions you may have. Judith

[emilyrose197377]

Lb i also have neurogenic bladder I had to self cath 4 x a day. But since I had the interstim surgery I can urinate on my own . I don't have to cath anymore.

[creatingkarma]

Hi Carl! I just had to read your post because I have an uncle named Carl Marshall! I have heard that when they try to recreate a bladder with intestines that the IC comes back. I hope someone else can give you more info on it because that's all I know. I really wish you the best with whatever you decide.

Larry, your story breaks my heart. I really feel for you. My bladder spasms don't seem so bad now. I'm so sorry.

Hang in there, guys!

[ads]

Larry,

Have you studied the neurogenic bladder problems from the stand point of diabetes? A lot of diabetic patients get neurogenic bladder from autonomic neuropathy. Early in the game, I thought that might be my problems and I went to a few reknown autonomic neuropathy docs. Have you guys heard of Dr. Shlomo Raz, M.D. at UCLA. He is a brilliant doctor and although he is listed as a felmale urologist he sees male patients. http://www.healthcare.ucla.edu/institution/physician?personnel_id=8055
I saw him in 2001 and he was right about my correct. diagnosis long before others. He has been know to respond to e-mails and he is doing very interesting research on IC/pelvic pain

Carl, have your tried physcial therapy? If not I have been all over the country to some of the best. Sometimes they can even help those who have had invasive procedures that didn't work. If you are interested please private male me.

Sorry you guys are suffering so bad. I hope you find an answer for relief soon.

ads
(sorry female)

[carly]

Carl, my name is Carlin (Carly), and I had my bladder removed Nov. 1. I have the external bag. It was a long operation and a long recovery, but I am glad I did it. I would not recommend the surgery where they make a neo-bladder that you have to cath. I had a lot of urethra pain, so that was not an option for me. They took my bladder, ovaries, and urethra. Good luck, if you have any questions, please email me at carlinjo@yahoo.com Take care!

[Babs RN]

Larry,
I currently see Dr. Raz, he is phenomenal man and doctor. Please PM me if you need any info--I am having an Indiana pouch done in February.

HUgs,
Barb :grouphug:

[medicatedapathy]

I am 51 year old male with severe IC. Diagnosed 2 years ago. Have tried many cures, including Argonet,DMSO treatments,Elmaron,diet change and Herbs,accupunture,nerve stem, a total failure, having leads removed from my nerves in 2 days. My health has been in study decline, severe pain many days. My next step in treatment has been recomended to have bladder bypass surgery. This is a BIG a somewhat scary step. I have been given several options to consider from having a bag to making another bladder out of my large intestines. I am now considering one of these options to be done very soon. My question is, who out there in IC land has had this procedure done or is thinking of having it done, and what your experciences have been. Any input would be very helpful.

Thanks, Carl

oh man oh man oh man.
i don't know what to say.
i also have it severe but my doctor is afraid to do any surgeries on me because of how young i am.
that gave me anxiety just reading it [but nowadays anything gives me anxiety].
PLEASE tell me how this goes later on step-by-step.
this way i know if its something i might want to go ahead and try.

[ICLori]

Just wanted to wish you luck. I was on my way to bladder removal (like you, none of the traditional treatments worked for me, and my doctors recommended bladder removal for me because of my severe IC symptoms, chronic untreated pain, and severe scarring of the bladder with reduced capacity under anesthesia.)

I was a bit afraid of the idea of surgery, though. There were two very experimental treatments I read about - small studies had been done on them that looked very promising, although you really can't tell much from a small study. Still, I thought, why not try these - if they don't work, I can always go on with the bladder removal.

The studies I gave my doctor were about Cyclosporine-A and Cytotec. If you use the search function (at the top of the board, you can click on it) and type in "prostaglandins" it will bring up about a hundred or so posts on Cytotec. If you search for Cyclosporin and Cyclosporine-A (it was misspelled in some posts) you can read about that, and studies done on that.

My doctor let me try the cytotec and I'm so glad he did, I'm in remission now. The study that was done showed it was effective for 87% of the IC'ers with severe IC who could tolerate it. The studies on Cyclosporine-A show an even greater remission rate (somewhere in the 90% range or higher.)

My doctor had never heard of these studies before, but there are some doctors who are using Cyclosporine-A for IC (it's commonly used to treat Crohn's, and some researchers feel IC is kind of like Crohn's of the bladder I guess.) Not sure how many doctors are prescribing Cytotec for IC. It's commonly used to help stomach ulcers, so it's being prescribed for that, but it's not usually prescribed for IC.

Anyway, I was lucky that my doctor was willing to let me try the Cytotec, and even the Cyclosporine-A if the Cytotec had failed, because he agreed the studies looked very promising and it was worth a shot. He felt that the bladder removal was a fairly major surgery and not reversible once done. So he agreed that we should try everything humanly possible first before resorting to the surgery.

There's nothing wrong with bladder removal surgery - every IC'er I've heard about who had it done said they would do it again in a heartbeat, that it was much easier than living with the constant pain and symptoms of IC - but I thought I would tell my story just so that you can read about those treatments if you are interested.

Blessings,
Lori

[LBUSH49]

This DR. I'm seeing now at the Lahey clinic says I don't have I.C. he says I have a NEUROGENIC bLADDER from all the back operations (7) and it has caused servre nerve damage and that is why my Bladder is not functioningly right ,I've tried every thing and I'm going crazy tring to get this matter fixed , he really doesn't want to do a Bladder BYPASS but we are running out of options and to top it off I can't get rid of this infection E COLI I've been on levaquin 500 mg but I can tell when I cath , I can tell by the smell , I'm beginning to wonder if I need IV antibiotics I see him monday the #rd in stead of FEB. the 23rd ,bbut he thinks all my back operations is what has caused my problems ,one DR. said I have I.C. but this is the 4th DR. and 3 of them said I don't I'm at the endof my nerves right now , not knowing what to do , this Dr. came highly recomended by a couple of DR.'s including my primary DR. so I am cathing now 8-10 times a day it's getting to the point I don't want to drink because I am leaking out of my Stoma which is in my Bellybutton , and I am really frustrated at this point my Mitro stoma operation was a 5 hour operation and right now I wish I never had it done thanks for listening LBUSH47@yahoo.com

[emilyrose197377]

I am so sorry for what you are going through. I know what it is like to self cath and get uti after uti from it. If you need to talk I am here . I also have neurogenic bladder and have Ic also. my neurogenic bladder is controlled with the interstim I can urinate on my own. But I still have pain from my ic. Again if you need to talk I am here. emily197377. yahoo.com.

Ic Meds: Detrol la, elavil, atarax,pyruiduim, marshmallow root and lortab, lidocaine gel.

[Silverfox]

Hi Carl, Larry, Judith, Emily, Karma, Ads, Carly, Barb, Ashley, Lori, and all,

Great thread, I do want to add on that another metabolic disease called Hypothyroidism can cause neurological damage to the peripheral sensory nerves in the bladder, urethra and that general area. These are some of the distal nerves in the body. Some other distal nerve damage is in the hands and feet. Hypothyroidism does cause a really big list of related problems and conditions, and no two patients are exactly the same. The treatment for hypothyroidism is to take daily a dose of thyroid hormones, of which there are several to try. Important, If one thyroid med. does not help, it's good to try other types of thyroid hormones.

Hypothyroidism has been called the "pretender disease". For some it can be tricky to diagnose, and for me it was over 35 years in finding the cause. My Drs. have told me that I have some nerve damage throughout my entire body (peripheral nerves are those outside the brain and spinal cord, I have both autonomic and sensory nerve damage) and because I went so many years without treatment they cannot tell me how much nerve recovery is possible for me. I do know someone close to me that was a milder case of shorter time, and with treatment they recovered fully without any further bladder symptoms. Several in my family also have hypothyroidism and we have four females who suffer with the same bladder symptoms.

Throughout the years, I did search nationwide and across the ocean to find the underlying cause. I also endured many painful expensive treatments only to learn that I was afflicted with a simple, common and safe to treat thyroid disease. Today some think this disease is epidemic and goes untreated, because about 1973 they ceased to train Drs. in how to recognize signs and symptoms of hypothyroid disease. Today, millions suffer with undiagnosed and undertreated hypothyroidism. For some hard to explain reasons, the current blood tests do fail to diagnose and many like myself fall through the cracks.

My current urologist, recently admitted to me that he knows nothing about thyroid disease. At least I now understand why I was never able to receive any help from all those top Drs. I saw. Patients need to take part in their own healthcare and remember Drs. do not know it all. I do think they all need to be trained to recognized the common disease of hypothyroidism, as thyroid does affect all cells, and tissues in the body.

Anyone that might want information on thyroid can look at these good sites that might help somebody else out there.

www.tpa-uk.org.uk
www.thyroideducation.com
www.thyroid.about.com
www.armourthyroid.com

I AM VERY SORRY THAT YOU ALL HAVE SUFFERED, I WILL PRAY THAT THE DRS. ARE ABLE TO HELP ALL OF YOU

Thanks to all for the excellent information here, Sheila

[medicatedapathy]

Just wanted to wish you luck. I was on my way to bladder removal (like you, none of the traditional treatments worked for me, and my doctors recommended bladder removal for me because of my severe IC symptoms, chronic untreated pain, and severe scarring of the bladder with reduced capacity under anesthesia.)

I was a bit afraid of the idea of surgery, though. There were two very experimental treatments I read about - small studies had been done on them that looked very promising, although you really can't tell much from a small study. Still, I thought, why not try these - if they don't work, I can always go on with the bladder removal.

The studies I gave my doctor were about Cyclosporine-A and Cytotec. If you use the search function (at the top of the board, you can click on it) and type in "prostaglandins" it will bring up about a hundred or so posts on Cytotec. If you search for Cyclosporin and Cyclosporine-A (it was misspelled in some posts) you can read about that, and studies done on that.

My doctor let me try the cytotec and I'm so glad he did, I'm in remission now. The study that was done showed it was effective for 87% of the IC'ers with severe IC who could tolerate it. The studies on Cyclosporine-A show an even greater remission rate (somewhere in the 90% range or higher.)

My doctor had never heard of these studies before, but there are some doctors who are using Cyclosporine-A for IC (it's commonly used to treat Crohn's, and some researchers feel IC is kind of like Crohn's of the bladder I guess.) Not sure how many doctors are prescribing Cytotec for IC. It's commonly used to help stomach ulcers, so it's being prescribed for that, but it's not usually prescribed for IC.

Anyway, I was lucky that my doctor was willing to let me try the Cytotec, and even the Cyclosporine-A if the Cytotec had failed, because he agreed the studies looked very promising and it was worth a shot. He felt that the bladder removal was a fairly major surgery and not reversible once done. So he agreed that we should try everything humanly possible first before resorting to the surgery.

There's nothing wrong with bladder removal surgery - every IC'er I've heard about who had it done said they would do it again in a heartbeat, that it was much easier than living with the constant pain and symptoms of IC - but I thought I would tell my story just so that you can read about those treatments if you are interested.

Blessings,
Lori

i will definitely research all of that and bring it up to my doctor.
i want to avoid bladder removal.
i just feel that i am too young to have to have something so serious happen to me like having something removed.
the thought makes my heart race.
thanks for all of the information though. :]

[LBUSH49]

My Dr. that I am seeing now says I don't have I.C. that I have a NEUROGENIC BLADDER they did the MITRO stoma operation where I have to put a CATHETER inside my belly button and that goes trough my stoma (that goes from my bellybutton through my appendix and into my Bladder) but my problem is I get these Bladder spasms that make me leak urine out of my bellybutton I wish I never had this operation but he's tried 4 different medications 15 BOTOX injections a BLADDER STIMULATOR for a trial that he ended up removing ,my problem is I have a oversized Bladder and all the nerve damage doesn't tell my brain thatis is full and when I did go before the operation my Bladder didn't empty all the way and I was getting alot of U.T.I.'s ,like right now I have a bladder infection E-COLI and I've been on LEAQUIN 500 MG and it's not helpingbut the first DR. I went to said I had I.C. but the next 3 said I didn't so now I'm looking at some type of BLADDER BYPASS operation I'LL find out more on MONDAY the 30th when I go see my DR. but my problem really isn't goiny to much it's leaking through my STOMA

[Judith56]

Okay, I understand now. Has he treid you on antispasmodics, like Levsin? Are you seeing any other ET nurses at Lahey? Donna Loehner is mine and she is great at trying to solve problems such as leaking. Your leaking may also be due to the ongoing infecti0on. I know I tend to leak more when I am infected. Have they done a reculture and sensitvity on your urine? I am wondering if the Levaquin is the right drug since the infection still has not cleared up. Maybe you do need something like Gentamyucin or Tobramycin IV to knock the heck out of it. What are you doing to keep the stoma covered? Yes, it certainly does sound like the neurogenic bladder is due to your back surgeries. People who hacve had paralysis and other diesease can get neurogenic bladder from the nerves being compromised. Let us know what happens. Judith

[LBUSH49]

Right now I am using the Convatec bag system but there has been 4or5 times that when I open it up to cath myself I start leaking out of my bellybutton before I can get the cath in and what a mess ,I am just so tired of leaking and it's getting to be quite frustrating and depressing too , making me wonder if I made the right choice having the MITRO STOMA operation to begin with ,I ve trie cipro too and that didn't seem to help my primary DR. says as long as I have this STOMA i am more likely to have alot of U.T.I. infections I also had a SUPRA PUBIC TUBE and was having alot of U.T.I.'s with that too ,I shaved my hair off my head so I won't pull it out under all this stress. All I know is it's driving me crazy , this has beengoing on since he put the SUPRA PUBIC TUBE in last Jan. so I've been with this Dr. for over a year now and other DR's were trating me for these problems for about 2 years with other Dr.'s ,what do I do next?

[Judith56]

Hmmm, I would ask for another urine culture to be done and also ask if bowel antispasmodics may help, since it is all the same type of smooth muscle. Do call the Et's Et's up down at Lahey and maybe they can schedule you to see them when you go see your doctor. I would be really frustrated too. I had terrrible leaking probs when I first got my internal pouch, but with time it settled down, so I do understand how messy, stressful, and angry it can make you. IN the meantime I will think about what is happening to you and see if I can think of anything that may help. Judith

[LBUSH49]

That's why i'm going Mon. for a urine sample and to disuss with the DR. what's he planning to do next

[Judith56]

Good luck! Hope they can finally get things under control. I will be thinking of you.

[Imustpee]

I had my bladder removed a month ago...I cath every 3 hours now...I suffered for 40 years with IC and finally had enough..

[ICLori]

I must pee, you are doing okay! Thank goodness! Oh I am so glad to hear from you! I was worried about you!

I'm sorry that you are still having to cath so frequently - I read once that as your new pouch or bladder "grows" you can increase the time between cathings...?

I hope you are comfortable and not in pain or anything and I hope your recovery is going very well!

Blessings,
Lori

P.S. Welcome back, I am sooo glad to see you! :) :love: :welcome: :woohoo:

[Imustpee]

It's been rough..I had a staph infection and now I have a MERSA infection and I am on IV antibiotics for another week....I see Dr Raz again in April and then I should be able to start stretching the new bladder...every 3 hours is a heck of alot better than what I used to live with.....30 - 40 times a day...

[carly]

How are you? My surgery was Nov. 1, and it took me a LONG time to feel better. It is a really rough surgery isn't it? I had so much pressure and swelling in my abdomen. I just waited for the day to end and pray I would feel better in the morning, that went on for a long time. I still have problems with sores under my wafer. You don't have to worry about that. I am so glad to hear from you!

[Judith56]

Welcome back Imustpee! Was wondering how you were doing. Sorry to hear of your setbacks. It is good to see you again. Judith

[BaltoDCIC]

Carl:

My doctor wanted to remove my bladder too, but I still cannot get my head around it. Instead, I've found that prednisone really helps me. I've tried Cyclosporin A as well, but I got really sick from it. I stumbled upon the pred when I had a really bad reaction to codeine. Codeine caused me serious breathing difficulties that landed me in the emergency room. The doctor there used prednisone to get my breathing under control and it had a profoundly positive affect on my bladder.

I now use it when things get bad. I'm off all pain meds, but still take amitriptyline and, occasionally, pyridium. There is a Canadian study that was done that I have a copy of. If you'd like a copy to present to your doctor to try using it before taking your bladder out, please send me an email at Tina@BaltoDCicSupport.com.

[mayray518]

I am so sorry for all of you and praying for you. I was bedridden for 5 years until I got diagnosed and found a caring doctor. This was in the mid 1990's. I know how you will do anything to stop the pain, I would have. I tried a combo of elavil and elmiron and got better and have been in remission for seven years. I hope you can find something to relieve this awful pain.

[LBUSH49]

I take so many medications and still have alot of pain ,that is one thing I'll have to live with the rest of my life I've been dealing with it since I got hurt in MAY 1985 and I'm only 49 so almost half of my life has been full of pain it's very hard to deal with and people don't know unless they have been through it it's very hard good luck to you and evryone who has writen to this message , I go MON. JAN. 30th to my DR to find out what's going on I know I still have a infection , they told me 2 weeks ago I had E-COLI and I think I still have it and I'm still in pain may god bless you all LBUSH

[DebbieD]

I have a Urostomy-Ileo-conduit for 21 years . I Use to have Part Bowel and Part Bladder Made. They Called it a Cecum-cystic-Plastic-Bladder. I had it made Twice. It did not work for me. I am 46 yeras old. If you have any Question Just Let me know Okay.

Hugs :grouphug:
DebbieD

[LBUSH49]

tomorrow Mon.jan.30th I go to the DR. to find out when and try to get rid of this infection ,I'll tell you right now I am one nervous person I heard that the operation could be anywhere from 10-15 hours long ,and I thought when they put the MITRO STOMA was long that was 5 hours but this operation will be my 23 operation since 1985 am trying to keep my head on it's a tough road ahead of me but with god watching over me I'm hoping to pull through it

[Judith56]

LBUSH49, how did it go at your dr.'s appt? Judith

[LBUSH49]

the DR.sent me to a specialist Nurse who is trying to retrain my bladder first by having me try to cath my self at certain times of the day and night ,he want to wait on that the bypass operation because it's a very serious operation and will only do it if all else fails , so after as many operations I've already had I am willing to try anything to avoid another operation , it is a 4-6 week program and then I reply to this nurse and we will go from there ,and like I said I've already had 22 operations sinse 1985 , so I perfer to avoid another one if I can ,But I do want to thank you very much for your concern ,LBUSH47@YAHOO.COM

[Judith56]

I will keep you in my thoughts that it will be successful. Let us know if it works!

[LBUSH49]

Thank you Judith you have been very kind and helpful and I will and I will let you know how things turn out , but I do know a 6 weeks worth of the supplies I need are very costly my insurance will pay after my $100.00 deductable and then they will pay 80% but just for 6 weeks the supplies cost $739.00 it's outrageous thanks again you seem to be a kind and thoughtful person and Iwill let you know Larry

[Gabs]

Judith56

Hi! I am quite interested in having your bladder removed. I just had surgery in Jan., they did a SPARC sling for my bladder, urethrolysis, pv sling, and cystocele repair. While the doctor thinks this will help he told me to cross my fingers because my bladder does not work properly or the urethra. He thinks I may have to learn to cath myself and do injections around the urethra so I do not leak. We discussed taking the bladder out but he doesn't believe in doing that. I wonder with time if my bladder quits working what is next for me. Just curious why you had it done and if you had it to do over if you would! I am 57 and do not look forward to living like that.

[LBUSH49]

Hi Gabs , Well my lastappoinment with my urologist he told me he wanted me to see this specialist nurse who is going to try to retrain my Bladder like the first week go every 2 hours , then 2 x's at night then the 2 nd week have me go every 3 hours andtwice at night the 3rd wekevery 4 hours and once at night ,then the fifth week every 4 and 1/2 hours and once at night aand by the sixth week going a total of five times and so far it's not working out that way , see last Aug. I had the Mitro Stoma operation and I really wish i didn't have it I saw 2 Dr.'s that said I had I. C. and this DR. said I didn't ,but he came highly recomened so I have seen him and his associates they rantests and said that I had a neurogentic bladder from all of my 7 back operations ,so he hid this operation(5 HOURS LONG) and 12 days in the hospital I'm 49 years old now I have to put a catheter inside my bellybutton and that goes through my appendix and into mt bladder , now this is the triky part there is a valve inside my bladder that is only suposed to open when the catheter goes in and opens it , however that's not what's happening , my urine comes squirting out my bellybutton when ever it want to and without any warning so he thinks this nurse is going to be able to retrain my bladder ,It's not working .They had me order all these bags and wax washers and wax that sticks to my belly and then the bags clip on like a tupper ware container does and I have to change these 2to3 times a week the supplies for 6 weeks cost $740.00 my insurance makes me pay the first $100.00 then 20% with a total limit for the tear of $3500.00 . Now there will be time I go to cath myself the bag will be empty and I take the Bag off to put the cath in and out it squirts all over the bathroom. I'm on my 2nd week and there has only been any urine in any bag only 2 x's but 4 times it has squirted out before i could get the cath in and what a mess to clean up when you don't feel good to begin with, now the other Dr.that said I had I.C. said my bladder wasn't emptying all the way and that was always in the morning and I was on lasix a medication that make your body make URINE so on morning appoinments I would still have some left in my bladder but in the afternoon there would be none,I took the lasix in the am and it workrs for 6 hours that's how it got it's name , so now I'm stuck like this for the rest of my life. This Dr. told me the vavle would not open until the cath opens it ,then why do I leak sometimes I'll leak with 200ML and other times it might be 400ML so it's not a iisue of the Bladder being to full,and then he told me if this doesn't work he might have to do a bladder bypass , Right now I 'm thinking is this a malpractice case against the company who makes the valves ,and the Dr. for mis leading me .Before my only problem I had was I had to void 20 times a day and that was all , now I have all this mess to deal with The question is why didn't he tell me it could leak I askeed him that and he said there was no way it could leak because if I thought there was a posability of leaks I wouldn't of had this operation now I'm on 10 medications a day at one point he had me up to 14 so right now I don't know what to do ,I sure wish my father was alive to get his advise.well good luck I hope it's better than mine May GOD BLESS ::::LARRY

[LBUSH49]

well things aren't going as good as I was hoping I am still leaking out my stoma ,so now it's a wait and see until Feb.23 , I am nervous about that appointment , but I can't live a normal live , when every 2 hours I start to leak , I can just imagine what this summer will be like , take care all Larry

[emilyrose197377]

I am sorry for all the pain your in and what your going through. you sre in my thoughts and prayers.

[LBUSH49]

I go see my primary Dr on monday I'm wondering if I have another infection , they told me that would also cause me to leak but this past year has been no picnic , and I was hoping for a better year , but things are looking about the same last year I had 4 operations one major one it was 5 hours long , that's when they put in the Stoma which started this whole mess , oh well I guess it's just one day at a time for now and thanks for the prayers I really need them bye all Larry

[avann]

Ashley,
Hi! My name is Ashley too. But anyways I'm 21 years old going on 22. And I have been dignosed with IC,back in 2000. I've had 8 cysto/hydros,1 dilation of the bladder about 3 months ago, and now I have a interstim (pacemaker) in my buttocks. My bladder no longer works. I t could have been from ALL the surgeries,but we ME and the docs are not sure... I have had trouble all my life butI got really bad back,in 1999
I am married and we wanted to have children, I had endmetreiosis removed 2 times last time in April, of 2006 so that we could have a child I have alot of cyst on my ovaries, and the doctors said for us to go ahead a try, but in may I was eight weeks pregnant and had a miscarriage due to my baldder problems. I have been battling this for so long. My oppion you really don't need to not do anything.I don't matter how old you are.see anther doctor.Good luck..If you would like to talk to me email me at babygirl18x@yahoo.com, I'll be glad to answer any questions or if anyone has any answers for me as well Please help.I am now carrying leg bag and I'm only 21 years old and married

[LBUSH49]

I had my Bladder bypass back in May 2006 , after having a SUPRA PUBIC TUBE in Jan 2005 , then 15 injections of BOTOX , no help then inAug.2005 I had a MITROFANOF SURGERY that's when I had to put a catheter inside my belly button to cath myself , I was supposed to do it every 3 hours but I leaked like crazy , so they tried a Bladder Stimulator , with no luck , so that's when I had the Bladder Bypass, now I have to wear a bag on the right side of my belly and that catches my urine and when that fills up I drain it , but I cheat and hook up to a folley bag when just staying at home less time draining it .My old Urologist Dosen't know how to do a correct way to get a urine sample to test for U.T.I.'s he taught me that if the bag is pretty clean you can use that , 5 weeks ago he told me I had 3 bacterias growing so I went to my local hospital instead of going 40 minutes drive to his hospital , there the DR. on call not even a Urologist told me that was wrong ,Ihad to use a clean bag then get the sample , I did it her way and had no bacteria growing at all after a 5 day stay , yesterday I got home again for a U.T.I. this time it was one they did blood work and also found blood in my Urine ,and I had a blocked bowel on top of that , lucky me I got a feeding tube (yuk) NPO for 3 days then they took it out and I was on a liquid diet for 2 days , then a light diet for the rest of the time, they gave me all kinds of laxetives and enimas to make me have a bowel movement ,they stopped that 4 days ago and I haven't gone yet , they sent in a Urologist and it was my fathers old one before he died so he knew me well I drove him all the time , I asked him how he would take a sample of Urine and he said he woul take a catheter and go into my Stoma to get best results , I asked him if he would take me as a patient he said yes his office is 1 mile away .So far since I got hurt in 1985 I've had 23 operations 4 have been on my bladder that I probably didn't need , but I think the DR. just wanted the $$$ ,I want to thank all who have answered my post and if you want to email me you can at LBUSH47@YAHOO.COM or LBUSH49@COMCAST.NET once again thanks to all ; LBUSH49

[countrygrl]

I have been thru it all! I have tried just about every meds there is out there and nothing seemed to work for long. I had a partial bladder removal surgery done 8 months ago and it didnt work so now in 2 days they are taking everything out and putting in a pouch on the inside and I will cath thru the belly button,I have talked to so many people that have had this done and I have heard great success stories. Judith on this site is really good at helping answer questions. She has helped me out alot. I am sorry to hear about all your trouble but there is hope and just make sure you do alot of research and ask for references of patient that your Dr has done procedures on that gives you a good insite as to how good your Dr is.I made the mistake and had a Dr that botched my 1st surgery but my new Dr I have done alot of research and spoke to 31 patients and all spk highly of her so I am comfortable doing the surgery. Good Luck and know this is a good site and great people that can help out alot! :grouphug: Your not alone!
Hollie

[LBUSH49]

The Urologist I've been seeing doesn't even know the corect way to give a Urine sample , he taught me that If your bag is pretty clean you can take a sample from that, when I was in the hospital in my local town , my Urologist told me I had 3 bacterias growing, but when they put a new bag on and took a sample they found nothing was growing , I just got out of the hospital on Wed. the 27th I did have a U.T.I. , I had blood in my Urine and I also had a blockage in my bowel , but the good thing that came out of this I now have a now Urologist , he was my Fathers before he passed away so he knows me from driving my dad to his appointments , I have had a Bladder By[ass with a ILEAL LOOP STOMA on my right side , I wear a bag covering my stoma and have to change it 2 x's a week , I asked this Urologist how would he take a sample for a culture and he told me the best way was to put a catheter inside my STOMA and that's how you would get the cleanest culture , so this DR knows what he's doing , then I found out my primary DR. thanked him for taking me on as a patient , which I thought was a nice thing for my primary DR to do my old Uroligist was head of urology and doesn't know how to get a cleen culture , that's pretty sad , he tried 5 different medications ,15 shots of BOTOX and a BLADDER STIMULATOR , a supra pubic tube and theMITROFANOF that's were I had to cath myself through my bell button and nothing worked now I wear a bag on my right side , I don't think he knew what he was doing , my total operations since I got hurt in MAY 1985 is now up to 23 ,that's pretty sad for someone who's only 50 years old ...; LBUSH49

[LBUSH49]

Last may 2006I had a Bladder Bypass with ILEAL LOOP STOMA RT SIDE OF ABDOMEN , now I'm getting U.T.I.'s about every 6 weeksin the last 3 monthsI was hospitalized 2 x's and this last time I also had a bowel obstruction , I almost had to have another operation , I've already had 23 operations since May 1985 I don't need no more operations ,My DR put me on Colace 100 MG2 X's a day and LACTULOSE 1 tablespoon 3 X's a day yet I still am getting blockage , Last night was the 4th day without having a bowel movement , I already wear a bag for my Urine because my Bladder no longer works , Now I'm getting nervous starting to think I'll be wearing a bag for my bowels ,If there is someone out there who could help it would be very helpful to me thank you for any ideas ;LBUSH49 THANK YOU ALL !