[Guest]

I have had IC past 4 years. In 4 year time frame, I have also developed pelvic floor disfuction, severe IBS, chronic migraines fibromyalgia, as well as having Graves Disease. I have been on every medication known IC to no avail am currently on MSCONTIN, Neurontin, Premarin (from hysterectomy in June 2000), Valium, Donatal, Pyridium Plus a few ors. My bladder capacity is less than 250cc. I've had 3 hydros done each time y have only been able to stretch my bladder to 500cc. I have a great uro, however I cannot find anyone else disease who has it as severe as I do. My bladder continues to shrink at an alarming rate meds only take edge off a little bit. I have been reading through some of or articles/posts, in regards to back pain, both RLQ LLQ around kidney a...it does exist because I have it severely. I am on disability nt an easy task disease as Social Security is just now becoming inmed of severity of IC. As a doctor, I do not know if have any IC patients to my degree, I'd like to know my prognosis might be comparible to any of r patients. I have been told because I have such a severe case of IC bladder removal is just down road if my bladder continues to shrink. I"ve been putting off past 3 years because I'm only 31 refuse to have done. My current uro agrees not to have it removed, is getting stumped as to I keep shrinking. On average, I go to bathroom every 15 minutes, void anywhere from 10cc to maximum of 90cc. I have done bladder retraining, DMSO, Clorpactin, Heparin, Silver Nitrate...etc.. as stated earlier, every med known IC. It took me quite a long time to learn to deal my disease, not being able to live my life as I used to play my children. I'm now getting to point of depression again as well as anger because everything keeps getting worse, re isnt much more my doctor can do. So.....I guess it boils down to ...I"m trying to find ANYONE out re, doctor or patient, who has or knows someone IC as bad as me. I've been ICN ICA y have no one to my degree y know of. Any help will be appreciated.

[Guest]

Your case is as bad as I've seen and I agree with your urologist to hold on to your bladder as long as you can. Removing the bladder sometimes simply changes one type of pain for another.

[Guest]

Hi Lynne, You didnt post your email address, and I would definately like to talk with you. I know EXACTLY how you feel. I was diagnosed at 27 and at that time, worked for the gov't for 10 years. I lost my job and everything we owned, house, belongings everything, because I couldnt return to work. I too have been bedridden numerous times and couldnt tell you what a flare was either, as I'm in constant pain. I consider a "flare" for myself worse that what I feel day to day. Self definition I suppose. There is never a day I dont feel pain..ever. Even with all the meds I'm on...they take the "edge" off at times, and other times, they just dont work. MSCONTIN is pretty strong and Dilaudid is my breakthrough, which is stronger than my MSCONTIN...and they dont even touch the pain levels I have. So thats what I call a flare I suppose. Sometimes they do help, but here lately, they just arent working. I'm not sure if its because my body is just used to having them or what. But if I stop taking them for a week or so and start up again, that entire week I'm in the bed and cant move. Do you have any other syndromes as well? My email is wesordeb@compaq.net

[Guest]

Hi: You're not alone. I have been mostly bed-ridden since being diagnosed with IC almost 2 years ago. My bladder capacity went from normal (I used to pee 4-5 times a day) to a paltry 400ccs (mind you - stretched under anesthesia). I am in constant pain all over just like you (have been from the beginning). Thus, I have NO idea what a "flare" is. This disease has stolen my life from me and at 34, I feel like I've been cheated out of so much. In fact, I couldn't have imagined a worse life for myself if I had tried. Like you, my doctors, too, do not seem to understand why I seem to have such a "bad" case of IC (esp. since my bladder actually doesn't look that bad inside). It's VERY frustrating. Anyway, please feel free to email me if you'd like. Take care, Lynne

[Guest]

Dear Dr... I have a question for you, and by no means is it to offend you, so please keep an open mind and try to see from and ICers perspective. Do you know all the degrees of IC and do you actually have any patients with IC? I've read through most of the posts under this topic and your answers are so general that basically, you're answering them with the original "post" from a person. Or maybe I'm just reading it wrong..but thats how it all reads to me. For instance, in my post, I asked multiple questions and your response was basically "I agree with your doctor". I agree with my doctor as well, thats why I posted here. What I'm looking for is if you, as a doctor, have any patients with IC to such a severe degree and what, if any, different treatments you have tried and succeeded or failed with. Basically, you havent really answered my question (or at least I dont think you did)...you answered my question with my original post. As I said earlier, this is not meant to offend, as I myself took the initiative to write to you, respectfully, and you may not know the answers to which anyone asks. Thank you Deb

[Guest]

I have managed hundreds of patients with IC and have spent thousands of hours with them. I have simply reassured those only slightly bothered and have been forced to remove the bladder in those incapacitated by the disease. Each case is very individual, and any personal advice/intervention from the blind perspective that we have is not only ill-advised, but illegal. Our mission is simply educational, when possible.

[Guest]

Thank you for your response. As stated earlier, my question was not meant to offend. Since you have managed hundreds of patients, and have had to remove bladders in extreme cases of IC, can you answer my question as to how many patients you have that are at my degree (see my original post). I will not have my bladder removed and my uro agrees that is not the answer. However, with it shrinking at such an alarming rate....can you advise based on your patients like me, what if any, reason there is or treatments for a shrinking bladder? Both myself and my Dr. are a bit stumped on why I shrink so fast, even after hydros. I am in the "end" stage of IC...so my bladder is pretty much gone, so to speak. Any advice/information you can give me will be greatly appreciated. My last ditch is for removal, which I know one day may happen, but we are trying to avoid that at all costs. Thank you

[Guest]

I have seen a few like yours, and I know of some who have undergone augmentation cystoplasty (by other surgeons) to increase the bladder capacity. Cystectomy does not seem like the right choice for you at this time. If you are going to need a cystectomy, you will be the first to know, and you will often have to talk your doctor into the treatment plan.

[Guest]

Thank you very much for your response. The augmentation isnt possible for me at this time either, since I have severe IBS and since docs arent sure what causes that either and the studies I've read with the correlation between IC and IBS, there is a factor that you can still get IC even after having the augmentation/rebuild of the bladder. I dont want a cystectomy...as I'm sure you know based on patients you've had to do..sometimes that makes everything worse. Again, thanks for the responses...they are appreciated. And lets hope they find a cure for this disease soon. Deb