I have IC dignosed about 7 yrs ago I am on Elmerion Attrax and Enablax for it and seem to be doing great.

chrissy

Wow, you had to have your bladder removed? can i ask you why? just inquiring because i was diagnosed with Interstial Cystitis and i recentely had the Cystoscopy bladder Dilation done. If this doesn't help then i'm not to sure what is next.

Hi Dalymety,

Since you had to have your bladder removed, do you now have a Urostomy? I am curious because I have an Ileostomy. I commend you for wanting to get this disease out in the open for people to learn about. I would also like to get ostomy surgery out there in the community for questions and answers. Anyway I think you are doing a wonderful thing, keep up the good work.

Jmfroglady

I had many Hydrodistentions and cystoscopies. I had a really bad case. we even tried botox. I was at the point of not being able to pee on my own. I self catherized for the past year before I had my bladder removed. I was living on pain pills and I could no longer live that way. When they removed my bladder they said it was so small and cracked all over he said "it was destroyed". I have no more IC pain. Once I heal from all the surgeries I have had in the past 6 months I should be as good as new.

chrissy

I am glad the medication is working for you. I tried many meds and nothing worked or interferred with my IBS. I hope you continue with good luck. My bladder was just beyond help I was self cathing 25 to30 times a day. I couldn't live my life this way any longer.

Lynn

Jmfroglady

Yes I have a Ileal conduet loop with a stoma which I attach a bag to it. Which is all called a urostomy. I have to say that surgery was horrible. I was in so much pain. Cutting the intestines was the worst for me. The last 2 surgeries I was preped to have them cut but both times they ended up not cutting them and I recovered faster. I am still only 3 weeks out from my last one. This time he cut my stomach almost up to my sternum but at least he didn't cut my intestines. Starting them back up is painful also when you have IBS. How long have you had yours and where did you get it done?

Lynn

Hi Lynn,

I was diagnoised with ulcertive coltis when I was 14 yrs. old. When I was 21 my colon was so bad that they had to do the surgery to save my life. So now I have had an ilestomy for 28 years now. My surgery was done in Amarillo, Texas. I live in Oklahoma.

I noticed where you had to have your bladder removed and thought I would have an ostomy friend here. Take care, and hang in there,

Cindy

Cindy

so you have a colonostomy(poop)? or is it a urostomy(pee)? I have the pee one. I had mine done in Burlington Mass. It is 4hr away from my home Ihate having the doctors so far away. In the past 6 months I had to be sent down by ambulance horrible pain right after the first surgery and then when I had a blockage. I hope it gets better I have been realy feeling down lately. Right now I still have pain in the area of the kidney which is what they were supposed to fix 3 weeks ago. They found where the tube that comes up & makes the stoma was twisted and the other end of the conduit was twisted with scar tissue. I have had 2 ultra sounds and so far they show my kidneys are fine and not swollen like they were. It is funny they do feel the same. I wonder if it takes time to heal or if it is just the pain from them scraping the scar tissue off the tubing. They said it took many hours

Lynn

Lynn,

Thanks for the kind words. I spend 10 yrs b4 I was dignosed peeing a little or not going at all until I switched pee DR. Good luck to u, hope things are working out for u.

chrissy

I have had interstitial cystitis for years, I went years before it was diagnosed.  I live with pain on a daily basis.  I self catherize using Heparin, 4% Lidocaine and Sodium Biocarb several times a day and take ELmiron.  And take pain medication.  Recently I have had lots of bleeding from the bladder.  I have had some bleeding over the years but not to the extent it is now,  The least little bit of activity irritates the bladder.  I normally try to walk daily, but since the bleeding started, it makes the bleeding worse as well as the pain. 

Dukesh

It was the same way for me. I did instills the same ingredients you did and I also tried botox. After the second botox treatment I was no longer able to pee on my own . I hd to cath myself 25 to 30 a day and bleed oh yes I did. Those were the times I ended up in the ER in so much pain. They had no idea what to do with me. I would just tell them you need to get me on top of the pain so I can continue at home. It ruined my work life. They had me so high on pain meds I would fall asleep at work. Once I was forced to go out of work on medical leave. Which happen to be at the same time I found a doctor to help me. I had by bladder removed within 11 weeks after. I have no more IC pain. I had 95% bladder removed (which means they left my urethra in) Big mistake I should have had them do 100% but he only gave me the choice 2 minutes before the surgery and never talked about it before that. I thought it was all coming out. I also had a Ileao contuit loop done. This was all done sept 08 and I had 2 revisions since. To try to fix the stoma it was not draining correctly and causing the urine to reflux back up into my kidneys.

Dukesh good luck I hope you have doctors where you live to help you because I have to travel 4hrs.

Lynn

I had another cystoscopy done today and the doctor told my husband my bladder was one of the worst ones he has ever seen and is recommending removal of the bladder.  It seems like this feed has died without much information out there from "THe Doctors"

I had tried everything. Interstim, all the meds you all are on & even botox. I ended up not being able to pee on my own and I had to self cath. I was cathing up to 30 times a day my badder couldn't hold more than 50 to 100 cc and most was blood. The pain was horrible I was on so much pain meds I was forst to go on medical leave at work and I ended up having the bladder removed by a doctor I found in Burlington MA Lahey Clinic. The Surgery couldn't get scheduled fast enough so I lost my job position and they screwed up the first surgery which caused reflux into my kidneys (urine was backing up into my kidneys) they did 2 revisions since Sept 2008. This is alot on the body and the surgeon says I will be out of work for 1 to 1 1/2 yrs before I am able to handle a 40hr job. This all has been hard on the family. I lost my salary and my husband has an extra $100 taken out of his check for insurance a week. so loosing $500 a week is very difficult. I have been watching and the doctores still have not said anything about urostomys or IC on the show. Maybe if we all send them a note it will get on that way. So please send them all a letter tell them how pain full IC is and we need more research on it. and how debilitating this can be and how it can end with urostomy ileal loop like I did.

Thanks

Lynn

Dukesh

got an e-mail that said you had a message. I clicked on the link it brought me to your message and I didn't have time to read it as I saw it was fearly long. I just tried to go back and now I can't find it. I am new to this how do I find all the messages that were sent to me.

Thanks Lynn

HI!  Where do you live?  I have had many surgeries for bladder and a total hysterectomy for endometriosis.  I also have IBS.  I cu rrently have an interstim in my butt for my bladder which is NOT working but my doc has stopped responding to my calls about problems with the interstim.  Anyone else thinking of this know that in my case it only helped a little with frequency and NOT at all for ic. I would love to talk with you about this

I am sorry for what you have been through!! I just accidently stumbled on this site and it said that there was an episode about IC that aired April 16 and I was trying to watch that. I started reading the blog and wow, I cant believe other ppl have to live with this....

Hi I have IC and I was dignosed a year ago I have had it probally longer than that but had a true dignose a yr ago. They found out I had it by doing a bladder distention and found that I have no inner lineing as well as I have quite a few good sized ulcers in my bladder the distention hasn't helped and the medicane was recalled not to long ago as well I cant aford it well at lest the elmrion. I have a question for anyone who has this or has knoledge of it what are the chances of DR's wanting to take my bladder out or some major surgery to replace part of it I am in constant pain from it and my other aliments, how long did you have the condition before they did this surgery on you did you feel like it was invasive and they didn't want to deal with it in other ways or do you feel that it maybe helped in some ways? How are you all coping with it mine is a daily battle as well as I have GI problems and fibromyalgia and suffer from migranes and early onset artritis.

also I forgot I have had basically a full hysterectomy other than cervix due to having everything but cancer