View Full Version : Finally admitted defeat - going to talk to doc.
12-14-2005, 08:53 AM
Hi, guys. I finally admitted defeat over this stupid bladder of mine. It's like a 12 step thing, LOL - my life has become unmanageable and I am taking the only step I can think of to try to set things right again. I'm tired of "feeling' my bladder all the time. I know it's not the excruciating pain, not something that doubles me over, but I'm tired of always feeling like I have to go when I don't, tired of the backaches that are referred pain from my bladder, tired of that icky UTI type feeling.
I broke down and had a good cry this morning, talked with my husband, and we are both going to see my doctor on December 19th to talk about bladder removal.
I know I still have some capacity left - 1 1/2 years ago, the last time I had a hydrodistention, I still had 450cc under anesthesia. That's not great, but not all the way to bladder failure (which would be 200cc or less under anesthesia, from what I understand.) So generally docs are reluctant to operate until you reach frank bladder failure. I don't know what this doc will say.
But the thing is, he's not willing to treat me for pain, so he needs to do something. Everyone here probably already knows I've tried everything under the sun to manage my bladder, and I still have bladder pain. Even the narcotics didn't work because my bladder flared from the meds! So I am in a bad place.
My husband would like me to just live with the pain but I don't feel I can any longer. I am so tired of being in pain all the time. I would like my life back.
I'm really afraid of the surgery but I just don't see what choice I have at this point. It's either surgery or live with the pain forever.
My IC seems to be progressive. It definately progressed rapidly in the first four years I had it - I went from normal capacity to 450cc under anesthesia in just four years - and subjectively I do feel I've gotten worse in the year and a half since my last hydrodistention, so I am guessing that my capacity is maybe somewhat less than 450 now.
I don't know what the doctor will say to us, but I've reached the point where I am ready for this surgery.
Thanks for letting me talk about this.
12-14-2005, 09:18 AM
I'm sending you prayers for wisdom to know exactly what you should do. I am sorry you are at the point where you are considering bladder removal. (((Hugs))) coming your way.
12-14-2005, 09:22 AM
Thank you so much. I cried so hard this morning when I came to the realization that there really wasn't any other choice anymore for me, not that I could see. I am going to ask the doc about Cyclosporin A but I've already been told "no" by so many other docs for that that I don't hold much hope out for that.
I guess I will just have to be brave and face this. Lots of people lose their bladder to cancer, or lose other body parts to cancer or accidents, so I should be able to face this. I admit I am really scared though.
I wonder if my pain will be controlled while I'm in the hospital? That's one thing I'm scared of, is being in intensive care in a lot of pain and stuff. That doesn't sound so great. I've never even been in the hospital overnight before. All the operations I've had before have been really minor - endometriosis laps. etc. - no big deal, always home by dinnertime, little pain.
Thank you so much for your compassion and prayers, I appreciate it so much.
12-14-2005, 09:26 AM
You are in my thoughts and prayers . I hope you can get the help your need to make a decision that is right for you .
12-14-2005, 09:52 AM
I am so sorry you're going through this. Could you possibly get another uro or two for different opninions before you consider bladder removal? I just hope something positive will come out of your Dr. visit on the 19th.
My thoughts and prayers are with you.
12-14-2005, 10:54 AM
Thank you guys so much...
I have been to sooo many uros and urogyns over the last five and a half years (I think I've been to four urologists and five urogyns now....) I have tried and failed at every available treatment for IC. My capacity continues to shrink and my IC progresses. There is really no other choice at this point I'm afraid. My choices are: live with the debilitating pain without help or get the bladder out.
On the other hand, I think I have some good news (maybe.)
It might not have been the Cymbalta causing my increased pain. I'm pretty sure from my symptoms now, I have a kidney stone stuck in my right ureter. (I've had several kidney stones stuck before like this.) Anyway I think that is what my increased pain is from because the Cymbalta is out of my system now (short half-life) and I still have this pain on the right side that feels exactly like when I had my other kidney stones.
If it doesn't get any better by tomorrow I will go to the ER after my Red Cross shift (I am volunteering for the Red Cross, manning a surgical waiting room for families...)
That would be great news if it were a kidney stone...that would mean I could still take Cymbalta and maybe the Cymbalta would still work on the regular IC pain...then I wouldn't have to have my bladder out....maybe this increase in pain is just the kidney stone, the last time I had stones, I had bladder discomfort as well as back discomfort....well, I will keep you guys updated and will let you know tomorrow if it was a kidney stone or not.
12-14-2005, 11:35 AM
Hang in there...there are several of us in this very spot right now..as you know next friday will be this sad bladders last day..I am looking forward to walking my dogs, eating whatever I want, drinking beer and lemonade, having sex without paying dearly for hours afterwards..I am looking forward to "Peeing" every 6 hours, going to the gym and losing the 34 pounds I have gained this year because I cannot hardly move outta my chair..I am looking forward to teaching piano lessons to little kids again and not worrying about finding a bathroom all the time...not taking 34 pills a day and only taking 2......yes...life will be good.... IC has taken 39 of my 45 years of life and I REFUSE to let it have anymore... :woohoo:
:( I am so sorry you are still in so much discomfort, Lori. I know it has been a very long road for you and that you have done exhaustive research and have tried dozens of treatments. I hope that you will be led to whatever treatment will help relieve you of all this discomfort that never seems to stay away from your bladder. :( I agree that taking of care of a kidney stone and then seeing how you feel would be a good first step - especially since a month or two ago you were feeling so good.
Good luck and please keep us posted. We care. A LOT. :kissing:
12-14-2005, 12:21 PM
Good luck Lori. I think it's a very brave decision to think about removing your bladder, and I know from all of the posts that you have tried everything to get the pain and discomfort under control. I pray that your doctor will listen to you and you'll get the help you need. Keep us in the loop and know we're all here for you!
12-14-2005, 12:48 PM
Sorry to hear this, but we are al lhere for you, so feel free to cry away to all of us we will listen anytime.
12-14-2005, 12:48 PM
Have you read my story? You may want to read it again. I went through a lot of the same feelings you are going through now.
This is something I wrote at the very end...........I knew it was over and had to close the door.....This is part of the grief process. Losing part of your body is like losing a loved one. I wrote this in 2002.
My step at admitting defeat is here:
I have worked very hard to get someone to save me from this End Stage, Refractory, Interstitial Cystitis. While I am only about 1% of the IC population, I still exist and have feelings that I would like to share. Not many people will ever have to go through something as traumatic as this. I am brave and strong and I am not wavering. There are others out there like me that may be too afraid to talk about this. It's a subject that many people want to avoid because of it's seriousness but it needs to be discussed someplace and I can not find any other place to do it.
I had a conversation with my bladder last week.
It goes like this:
"Bladder, tell me how you are feeling right now?"
"I am in so much pain but all of the pain meds and others you have tried to give me have only made me feel worse. Six surgeries have not saved me from this torture. I'm too sick for you to keep using me like this."
"Bladder, How can I comfort you through this difficult time?"
"Please keep that foley catheter in. It takes the pain and sorrow away while you are waiting to replace me."
"Bladder, Can you tell me what color you are feeling right now?"
"I am as red as the hot coals used in the fire."
"Bladder, what makes this feel better?"
"When you are not using me to store your waste and toxins."
"Bladder, Is there anything else you want to tell me before I let you go?"
"I've tried so very hard to work for you but I am too disabled to continue any further. It's time for me to go. I don't want any more of your 58 medications......No more surgeries........Please let me lie in peace. I still love you but I am no longer able to help you out with your daily functions. I will be with you in spirit. I'm sorry it did not work out between us."
"Bladder, I will grant your wish and so will my incredible surgeon. Your suffering will end Friday at 7:00 am. I love you too but I know this is what you want. Goodbye."
"Never take, I don't know how to help you as an answer."
12-14-2005, 01:35 PM
Lori, so sorry it has come to this point. When you see your uro you may want to request another cysto to evalute your capacity now. Most likely he will want to do anyway to justify the surgery. I had my bladder out 19 years ago and my life is so much better for it. If your main symptom is pain and not frequency, then surgery may not take away all the pain. If you are just having pain from the bladder filling with urine, then you may have a good outcome. This has been my experieince in talking with others who have the surgery. Ask your uro what thier experience has been with surgical outcomes on IC patients. Keep us posted and I would happy to answer any questions you may have.Hugs, Judith
12-15-2005, 12:46 AM
Lori Please Be sure you Get all the Answers you Need before you take that step Okay. You can ask Kara, Judith , Me or several others about Bladder removal. But also the expense of the Suppiles are alot also. Also be sure that you can handle a Bag on your side. Also that your Husband can also. It is not the Prettiest thing to look at. They do make Covers to go over your Pouches for the times that you and your Husband are together. I have a Cover and then I twist my bag to the side and tape it to my side so it is not in the way. There is alot of Prepreations with Your Bladder removal.
We are all here to help you with any Questions Okay.
You are in my Prayers. :angel:
12-15-2005, 10:05 AM
Thank you all so much...I am so touched by these posts! What a great bunch of ladies you all are! :) I have tears in my eyes reading these posts!
I know this makes me sound like an incredible idiot, but I'm trying to figure out today if I passed a kidney stone or if it was the Cymbalta causing my symptoms. I stopped taking the Cymbalta early yesterday, and it clears out of the body fast (short half-life) so when I still had the pain, I started thinking...hmmm...maybe a kidney stone rather than the cymbalta.
Today I had no pains at all, so I was thinking...okay, maybe if it was a stone it passed out already...or maybe it was the Cymbalta. So now I am doing an experiment. I took a Cymbalta an hour ago and am waiting to see if the pain returns. If it does, then I have my answer, or if it doesn't, then I know it was a kidney stone instead.
So keeping my fingers crossed it was a kidney stone and I can still take the Cymbalta.
Thanks again so much guys. I am going to talk to my urogyn on Monday, I got lucky (someone else cancelled an appointment) and they got me in right away. So I will lay all my cards out on the table and see what the doc thinks about cystectomy in my case.
The thing is, even though I am now a normal weight since losing weight and I exercise regularly, I have high blood pressure (runs about 150/95 now on average). I think maybe the high blood pressure is from the bladder discomfort. I know pain does raise blood pressure by a lot.
So I am thinking...if I most likely will have to have my bladder removed eventually anyways...maybe I should get the operation over with while I am still fairly young and healthy...that way I can nip the high blood pressure thing in the bud, be pain-free, etc.
I've just got a lot of thoughts running through my head right now. I don't know for sure if this is the best decision or not. If it were cancer, I would know what to do for certain. But it's so hard to know what the best choice is in this case.
12-15-2005, 10:33 AM
I will be laying those same cards on Jan 11th to Dr. Raz. We have also realized it is more critical that I have my bladder removed now because with my now life time dose of blood thinners it makes it that much worse. I know we can get this together girlfriend--and with our pioneers, Lesa, Kara,Deb, Judith, Carly ahead of us we have a variety of love and resources.
12-15-2005, 10:45 AM
I'm very sorry to hear that you are in so much pain. I thought that you were having at least a 25% reduction in bladder pain with BION, along with an increase in bladder capacity. I'm very sorry that the BION hasn't continued to help you with your pain. Has your frequency also gotten worse, because I remember that you said that your frequency was almost reduced to half.
I wonder why the improvement you were experiencing with BION hasn't continued. Maybe, like you said, your pain was increased because of a kidney stone and once the stone is no longer there, you will again experience some pain relief with BION. I'm really keeping my fingers crossed for you and I'm praying for you every day.
I know that whatever decision you and your doctor arrive at, it will definitely be the right choice for you. Good luck with your doctor's visit on Monday, the 19th; I'll be thinking about you!
Let me know how your visit goes on Monday. I'm always here for you if you need to talk or need support.
12-15-2005, 12:31 PM
Hi, Karen....the Bion was helping me, but my underlying disease continues to worsen. And I never got to the point where I was pain free - I had some days that were better than others but the only way I can sleep at night is with pain meds, and it's been that way for me for a couple of years, Bion or no. Bion has helped a great deal with the frequency, but I find that frequency was not my biggest problem - pain was and is my biggest problem.
I can not find doctors willing to let me have Ultram at night so I feel my only option at this point, since the doctors are not willing to manage my pain, is to have my bladder removed.
Barb, let's hope that the doctors can help us and that if we have to go through this, we will have a better life on the other side of it.
12-15-2005, 12:33 PM
P.S. Took the Cymbalta again - it's definately irritating the heck out of my bladder.
Why does this happen to me? Why do these meds SEEM to work for a few days and then my bladder develops an allergy to them or something? Why is my bladder so hypersensitive to meds???
I'm really fed up with my bladder. I want it OUT of me.
12-15-2005, 02:16 PM
Let me count the ways................that antidepressants kill my bladder. You name any antidepressant you can think of and I will tell you that they ALL KILLED MY BLADDER!!!!!!!!!!! I have tried just about every single one and all of them cause urgency and frequency. As soon as I stop them, it goes right away! And my bladder was taken out, so what's the deal.......
I can't take any of them. I was thinking of trying cymbalta but now that I see what it did to you, NO THANKS.........
You are not alone.
12-15-2005, 03:22 PM
Hi, Kara - does that mean you can't take any antidepressants, even though your bladder has been removed? That antidepressants cause you to feel like you still have a bladder with IC? That sounds like something is messed up with the nervous system....
I'm so scared it's my nervous system messed up, and that I'll get this operation done and still "feel" my bladder. I hope that won't happen to me. That would be awful.
And doctors are so useless - they keep saying "Elavil for pain" even when that obviously doesn't work for me. Why are doctors so useless and horrible when it comes to chronic pain???
I'm in soooo much pain tonight...feels almost like kidney stone pain - it's definately the Cymbalta.
Now what I don't understand is, why do these meds seem to help for 5-7 days then I develop a hypersensitive reaction and they turn on me and I get extreme pain from then on? Does this happen to anyone else?
Tonight my hubby asked me if maybe this isn't all in my head. I'm doubled over with pain and he's asking me if it isn't all in my head because he doesn't understand how such a small pill can cause me so much pain for hours.
12-15-2005, 03:43 PM
I am so sorry you feel so rotten. I wish there was a magic wand in the shape of a toilet paper roll that would remove every bit of pain, insomna, or nausea.
12-15-2005, 04:00 PM
In the research that I have done many have told me that bladder removal does not guarantee you will be pain free. Have you also looked into the possible complications of infection etc.? What about a urobladder? I have thought about this option myself and wondered if it would come to that someday. I think I would take that step if I was assured it would solve the problem. My fear is that it may not accomplish that end. Please make sure you check into all the pros and cons before you go ahead with it. (Maybe you already have done that). When I was diagnosed 10 years ago my urologist always told me that with IC, that the IC could attack the new bladder or the incision. I do not know if that is true or not.
12-15-2005, 05:04 PM
It is extremely rare for IC to come back and affect the urostomy if both the entire bladder and urethra have been taken out. I have never heard of it affecting an insicion, but I am not a doctor. I have had my ostomy since 1986. It is MAJOR surgery and once it is done there is no going back, so it is done only as a last resort. Most pepole after the surgery will have phantom feelings of still needing to pee, buit with time they go away. As for paiin, if it is your main symptom there is a chance that the siurgery will not cure it. The surgery works best in those whose chief complaint is frequency. Judith
12-15-2005, 08:26 PM
I'm so so sorry you're feeling so bad. :kissing: I can truly relate to the hypersensitivity to drugs and I sure wish I had some answers as to why some of us react that way. I guess it's just our own individual chemical makeup. It's a nightmare though, and for me seems to be worsening as I age (but then again doesn't everything!!).
I hope your Monday appointment gives you some answers. Be thinking of you.
12-16-2005, 12:37 AM
i sent you a private message a few days ago, maybe you didn't get it, I didn't hear back from you. I wrote to you because we are so similar. Every drug kills my bladder and urethra, every treatment, every food, every movement, the air EVERYTHING. I have always been extremely sensitive.
I don't know if you read my story but about 5 or 6 months ago now a doctor ruptured my bladder during a cystoscopy/hydro and just left me to die. he would tell anyone what he did, so for a month the other doctors were going insane trying to figure out what was wrong with me (my body swelled up 3x my normal size) Just in the nick of time my boyfriend got me transfered to UCLA to see Dr. Raz. He found that more than half my bladder was dead and falling apart, he removed what was left of the dead part and attached part of my intestine. This improved the frequency a little, not much, but the rest of my IC got worse (PAIN) Since I had already tried every other teatment and they all made me worse and because of the horrible shape my bladder is in, Dr. Raz said that I had only two options, interstim and surgery. Ofcourse the interstim made me worse so now he says he has to remove my bladder and urethra, it is my only chance. I am supposed to have the surgery Jan. 12th I have been crying ever since I found out. I desperately want to find a way to save my bladder and urethra, but Dr. Raz says there is no way, I am in too bad of shape.
I am so scared! Especially since pain is my biggest problem and the surgery might not take it away.
I am here to talk if you want! you are in my prayers!
12-16-2005, 12:38 AM
I will admit I am one of those People That After my Bladder and everything else in my Body was removed I still Had the IC. I had a Great DR. That has been by my side and Has done everything in his Power to help me. 80% Percent of Urostomys keep an infection at all times!!
The IC Damage all Parts of My urostomy and Then My Right Kidney. Now it has trying to work on my only Kidney left.
Not Everyone will have this. Even My Dr. Is sometimes shocked on what has happen. He says that some people have it worse than others and in my Case it was Very very Severe.There is not an explantaion was this Happens. But ir Does. But the Only thing you can do and That I do is going on and Live my Life to the fulliest and and Have good time while I am doing it cause you never know the Next time what it is going to happen.
12-16-2005, 03:35 AM
Lara, I never got the private e-mail from you - I would have replied, honestly! I am so sorry for what you have gone through
Part of what makes me so mad with docs is they are using all these drugs that recent tests have shown only help a minority of IC'ers. And they are turning their backs on so much evidence that IC is an autoimmune disease and that there is over a 90% success rate (with small studies, they need to do larger studies) of complete remission in IC from Cyclosporin A at very low doses. It is soooo clear to me that Ic is an autoimmune disease, and that does run in my family - autoimmune diseases in general - but just try finding a doc to do the work to put you on Cyclosporin A - impossible!
I have also just read on a dutch IC site that docs there are having success treating IC patients with plaquenil (or something like that) a drug used to treat autoimmune rheumatoid arthritis.
12-16-2005, 03:37 AM
Does anyone have any real data please on how effective bladder removal is for pain? I hear some people say 50% of patients still have pain after bladder removal, some say 20%, some say no pain if they get all the tissue.
P.S. If we can't find a doc to treat pain, and no operation like bladder removal will stop the pain, what in the same hill are we IC patients with chronic pain supposed to DO? Any ideas???
12-16-2005, 03:52 AM
P.S. It was for certain the Cymbalta causing the excruciating pain. I went through a horrible night last night even with the Ultram. For some reason it's like my bladder becomes allergic to these meds or something, that's the only way I can describe it.
12-16-2005, 05:25 AM
I just want toi clarify on what Debbie said about infections in people with urostomies. There is usually bacteria that will show up in urine cultures with one, BUT it does not mean you have an infection unless the count is greater than 100,000 and you are having symtoms,ie. fever, nausea, pain, etc. The majority of uros will not treat just bacteria in urostomates unless there are symptoms because it can lead to drug resistance.I do not know of studies that have been done aas far success rates in removal of pain in IC patients after cystectomy (bladder removal). That woudl be a question to ask your urologist. Judith
12-16-2005, 07:48 AM
My bladder is out and I can't take any antidepressants or fertility drugs or birth control. It does sound like nerve pain to me, but what do we do about it. I am taking Neurontin at a VERY high dose while I take the fertility meds and it barely helps.............I WANT TO SCREAM AND I WANT SOME HELP!!!!
I don't think any doc could help us. I've only been to 1000 of them over the past 6 years to try to stop this crap.
Maybe SOMEDAY they will figure out what is REALLY wrong with us....I think they are just guessing now.
Kara :headbang: :headbang: :cussing:
12-16-2005, 08:09 AM
I tried Neurontin - it increased my pain dramatically from the very first dose. Bummer.
I guess we will just have to live in hades on earth for the rest of our lives. I don't see much hope.
12-16-2005, 06:06 PM
This post is creating so many questions for me. I really need to find more information on bladder removal etc. Lori, I am just like you when it comes to meds. I have a theory that there is something in the meds that we are sensitive to. One poster said it was the sodium, but when I asked my doctor about that he said that was impossible, as they instill sodium into the bladder all the time etc. I have gone into web research on what is in each med that I react to, but a lot of them have similar ingredients. I don't know who could answer the question, but it the answer must be out there. I also got a terrible reaction to Cymbalta. I am not looking forward to going back to the doctor (pain doc) this month as she wants me to try it again as she thinks it is strange to get a reaction. I guess I need to post things from here so she can see I'm not the only one.
Also, one other question, do you get a lot of yeast problems? I have consant problems with that and I don't know if it is related to everything.
O.K. another question, what is cyclosporin? Where are the studies relating to this and IC? I would be interested in seeing them.
12-16-2005, 08:46 PM
Hi, Cheries, I don't get any yeast problems really but I eat yogurt every day so that probably prevents that.
Cyclosporin is an immune suppressant that is being used by some doctors to treat IC and the small study that was done on this was very promising. I will see if I can provide a link to that study.
Here's one good study on it:
12-17-2005, 12:32 AM
Thank you for posting that link!!!! It is very intersting and helpful, since my Mom just ordered an herb called Kalawala used to treat autoimmune diseases, now I really think it might help me. I emailed that link to my doctor, I can't wait to see what he has to say, maybe he will want me to try that medicine before the herb, I don't know and it doesn't really matter as long as it helps!
Did you ever try that medicine Lori, or anyone else?????????????????? If so what happened?
How are you feeling? I am in so much pain right now. I had to put in a foley catheter earlier because my urethra kept closing up and it spasms really bad every time I self cath. I hate wearing a foley, but my urethra needs a break from cathing every hour. I just wish the foley didn't hurt so bad itself, it is usually better the day after putting it in, knock on wood!
If you want you can PM me and I will give you my email address. I can't believe you didn't get my PM, maybe something is wrong with my computer. Or maybe I was so tired that I wrote it but didn't send it. i don't know, but I am glad that we can talk now. write me anytime you want, and feel better!
12-17-2005, 01:56 AM
Lara, I honestly didn't get your PM at all. I wouldn't ignore you.
I'm sorry you are in such pain :( I hope it gets better soon.
I have never found a doc who would prescribe Cyclosporin to me, but there was a young man on these boards months ago who did take it and it helped him. If you search the posts for Cyclosporin you will see his old posts.
I am desperately trying now to find a doc who will prescribe Cyclosporin to me. I don't think I will be successful. One thing I've noticed about uros is, if you don't respond to the "usual" stuff their idea of treatment is just to do absolutely nothing for you. They will not prescribe anything outside of the box. I don't know why. I would try to help patients if I were a doc...don't understand how they think. Anyone with a medical background here, can you explain to me why docs are like this? I would really like to know. It can't be that they are afraid of being sued - military docs can't be sued.
12-17-2005, 03:09 AM
Wow Lori. I just read the information from that link on cyclosporin. Like you I can't understand why a doctor wouldn't at least try that drug, especially when a person has tried everything else and has gotten to the point of needing their bladder removed. It makes no sense at all that they won't try it at least.
12-17-2005, 06:11 AM
I think if I could figure out the reason some docs lose their bedside manner I would win the Nobel Prize. Actually spouses and children can sue military docs, just not the active duty member.
12-17-2005, 08:47 AM
Barb, I could really use your advice about how to handle this doctor, or advice from anyone really but I think people with a medical background might know the best.
How do I convince a doc to let me try this? I can show him the studies on Cyclosporin A which are so positive and published in reputable journals (journal of urology etc.)
I also have an article from an IC expert that talks about various drugs used to treat IC, and immunosuppressants are one category of drugs that are talked about including cyclosporin A and they are given positive reviews.
I have also talked to Dr. S. back in Walter Reed, who is doing therapy on Ic'ers with Cyclosporin with great success, and he has agreed to let my doctor talk with him and help on the protocol, what dose to take, what tests to have to monitor my kidneys/liver, etc.
So I feel I have done all my homework with this - what can I do to make the doctor help me instead of brushing me off and leaving me in hades on earth?
Please, anyone with a medical background - how do you make a doctor care, or help you, instead of ignoring you and not understanding or caring that you are in so much pain?
P.S. I already tried to get on this doc's good side by bringing in home-made cookies, and writing a glowing letter about him to patient advocate so he'd get kudos. He sees me working as a Red Cross volunteer so maybe that helps too. But how do I get him to care about me enough to help me?
12-17-2005, 10:27 AM
You've tried most of my best ploys, the only other thing that has gotten my cause pushed further is to bring hubby. I guess it gives them the impression that we need help(NOT)but I think we put them off when we know too much. We're just those darn spouses, should be baking cookies and giving coffees.
12-18-2005, 07:13 AM
I don't know if this would help or not. Maybe you have alreay seen it. If not, I hope it helps.
12-18-2005, 09:41 AM
Thank you, Kara. Thanks, Barb. I hope tomorrow with the doc will go well. It helps that hubby is coming with me.
The reason I get frustrated with docs is, they have a few favorite drugs or treatments they use and they won't do anything else for you, if you don't respond to their favorite things to use. It's like it hurts their fingers or something to type in a different medicine than one they are used to typing in, I don't know.
Anyway there is a medicine - Cyclosporin A - which gives complete remission to those with severe IC in about 90% of cases - why can't I have that drug? Doesn't make any sense to me.
It's not an issue of cost, and it's in the formulary because it's used for other things.
Why on earth would docs deny this to me? Why would they rather yank my bladder out than let me try this? Why do they keep telling me, "this isn't an important disease, it's not like we HAVE to treat it, it's not like it will kill you...." And to me it feels like it's worse than cancer. If I had a pet that had this disease I would have them put down instead of letting them suffer. Why aren't doctors more compassionate about this? Is it because they have never known bladder pain so they don't know how bad it is? Is that the reason why?
12-18-2005, 12:59 PM
Believe it or not, though, there are several doctors out there who are treating IC patients with cyclosporin - and seeing their patients go into remission on a very low dose of the medicine...
I know those doctors (I have talked with one of them, both in person and over the phone) do a bunch of tests on people before putting them on, and also monitor them with blood tests etc. very closely while on the med.
I made the decision not to do cyclosporin when I was at Walter Reed because of the risks which I understood. I went for the Bion instead. Now I can see I made the wrong decision and I am sorry for that. I wish so much I still lived in the D.C. area so that I could have treatment with the doctor who is treating his IC patients with Cyclosporin A.
P.S. It's really too early to say anything, but I bought some turmeric (circumin) today at the health food store. It's supposed to be good for pain relief and a good anti-inflammatory. One lady wrote to me and told me it really helped her MS when she started taking it.
So I took some, figuring - this will probably flare my bladder. It didn't. Might be just a coincidence but my bladder pain finally went away. That would be really cool if I could get relief from my pain just from turmeric....they are finding that turmeric (and many other spices) have amazing health benefits. For instance, turmeric appears to provide protection against Alzheimers....
Anyway please everyone keep your fingers crossed for me that this turmeric stuff continues to provide good pain relief for me.
12-18-2005, 01:01 PM
P.S. Welcome to the boards, Tracy, I see you are new here - do you have IC? If so, is it controlled currently or are you suffering terribly?
12-18-2005, 01:02 PM
P.P.S. I soooo love the idea of circumin (turmeric) working to control my pain. If it works, I can just pop one of those babies any time I want and I don't have to put up with insensitive, jerk doctors who don't believe chronic pain exists and who aren't really sure IC exists as a disease entity either....
12-18-2005, 01:35 PM
Oh, that's awful! I'm so sorry that med did all those things to you.
I just wish there were an easy cure for this. I really don't want my bladder removed...can anyone blame me? We all want a cure...
12-18-2005, 04:15 PM
Hi Lori. I just read through this thread, and ... wow. I am just so sorry. I've been sitting here thinking that you and the Bion were gonna live happily ever after together! I guess nothing is that simple. Well, I keep all the meds and treatments I've tried on my sig so that people can ask me about them and maybe think about trying them, but I know you've already been down all those roads. You're probably the most open-minded and brave person I've met here when it comes to IC treatments. Perhaps this will be the final test of your bravery, to take a deep breath and try the ultimate IC treatment.
I wish I had some useful advice or whatnot. I really hope this goes well for you. You deserve it so much... well, not to get your bladder yanked, heh... but to not be in pain, y'know? I don't know what to say. Just try to stay as brave as you've always been :grouphug:
12-18-2005, 05:01 PM
Let me know how things go. I have some Army and Air Force connections in that area so just give me the word. I'll keep you in my prayers too sweetie.
12-19-2005, 12:05 AM
I just wanted to wish you luck with your doctor's appointment today. I'll be thinking of you. Let me know what he suggests that you do.
Whatever you do , don't give up hope!
12-19-2005, 12:07 AM
Thank you guys so much. I ended up flaring badly from the circumin so that's not for me I guess.
Wish I could just get this pain under control somehow.
I have pain every single day, too...it's so strange, when you have pain just every once in awhile they will give you meds.
When you have pain every day and need the meds more because you get worn down by the pain, they say "no."
Why is that?
12-19-2005, 01:54 AM
a doctor told me once that doctors loose their bedside mannor quikly because of their egos, a doctor hates it when they don't know how to make someone better, so they just become cold and distant and make you feel like all your symptoms are all in your head because their ego's are too big to just admit they don't know what to do. The doctor explained it so much better.
i emailed my doctor that link you posted about the Cyclosporin A, he said he will look at it tomorrow morning. I can't wait to see what he says. He is trying really hard to save me from having my bladder and urethra removed, because I keep crying to him that I don't want the surgery. This is my Primary Care doctor, not my Urologist, he only wants to remove everything he doesn't believe anything else will help me. So I depend on my Primary care doctor for all the stuff I want to try before surgery, he has been great so far. He feels guilty I think because he sent me to the doctor that ruptured and killed my bladder and left me to die. My regular doctor knows he should have done more to figure it all out while I was in the hospital. He has always been a great doctor though too. Too bad you don't live around here L.A. CA I could take you to him so you could try that medicine. Well I have to see what he says about it. Can you go to your family doctor (primary) to get the medicine? If you can't get it, it really sounds like this herb (Kalawala) my boyfriend found on the internet will do the same thing as the Cyclosporin, and a herb should be safer, less side effects! It has been used for autoimmune diseases for a long time now with great results. You can find info about it at organichope.com, also do a internet search for Kalawala. My doctor should be able to tell me which one I should take (medicine or herb) tomorrow, I will let you know!
You are in my prayers,
P.S. I totally believe that you didn't get my PM, I wasn't being sarcastic, I really think that I probably fell asleep at the computer and didn't press send, and thats why you didn't get it. I am always falling asleep at the computer because I am up at all hours due to my pain. I know you wouldn't ignore me!!! XXX-OOO
12-19-2005, 06:37 AM
Wow, Lara, that explanation makes sense, totally! I know they feel as frustrated as we do about there not being a cure.
Man, I always do this. I always imagine the worst possible outcome, I get all anxious, sure that I won't get help (because I have had a couple of bad experiences before - but then I have had a couple of good experiences too so I should be more positive than I am) and it turns out Dr. T. is an absolute sweetheart.
He is not only willing to do everything I ask for, to turn over every possible rock looking to help me, but today he was exhausted from having been up all night doing a delivery! He is the greatest! Oh gosh I feel so guilty for thinking that he was going to blow me off instead of helping me. It's just that I had a couple other docs who wouldn't let me try things, or didn't seem too helpful, and so I always think, oh, I'll bet that will happen again.
My father was always the same way. Always expected the worst of people. For instance, he would never stop to ask directions, not because of male ego, but because he assumed the people would deliberately give him bad information to make him lost! How's that for cynical? And yet I am in some ways the same way.
When I'm in pain I just get really witchy too with a "B." I'm an awful patient, I really am. When I'm hurting and depressed at the same time, I'm so mad at the world, I hate everyone and everything and can't think any good thoughts at all. So I pick fights which of course only makes things worse.
Anyway today I got to try misoprostal. It's that stuff that one study showed helped about 58% of IC'ers. So he was so helpful with that. We are going to try that first for awhile to see if it works. As long as I am careful not to become pregnant, the risks aren't too great with this medicine. Apparently nausea, stomach cramps and diarrhea are common side effects, so I will have to just kind of get through that. (It says that generally the side effects wear off in a week or two, as your body adjusts.)
He's also willing to call Dr. S. back at Walter Reed and investigate Cyclosporin A more. So there is a good possibility I might be able to try that, if my blood tests show that I am healthy enough and if this misoprostal doesn't work. It's very risky but I think I would like to try that before bladder removal surgery, and my doc also thinks that we should try that before the surgery too. Fortunately, only a very very low dose is needed in IC cases and that low dose means that the side effects are not as great as with a higher dose, although the risks are still really significant.
He's also looking into how to get the pharmacy to do rescue instills for me. They don't have those yet so they'd have to special order them, etc.
He totally understands that I've been flaring badly lately (I think that's what this is, the last month or two) and he is going to treat my case extremely aggressively to help me. I will be seeing him every couple of weeks until we get this under control.
He will be doing another hydrodistention on me and laproscopy at the same time to see if he can see any visible endometriosis on the outside of my bladder and adhesions and so on. Since I had those two other big endo surgeries there might be scar tissue and adhesions.
He also gave me a referral to mental health (which really I do need because I am depressed, so I didn't resent the suggestion, I appreciated it) and a referral to an opthalmologist to see if we can manage my ocular rosacea without using tetracyclines (which are irritating my bladder terribly twice each day). And a referral to a reproductive endocrinologist to do a full work up on me to see what my hormones are doing.
He suggested if it seems to be endo, we might do a hysterectomy/oopherectomy (spelling?) which would throw me into immediate menopause (hot flashes, eek!) but which would still be better than this bladder stuff.
Anyway I feel very fortunate today, sheepish that I expected the worst, (thank you guys for letting me vent and yell and voice my fears again), and hopeful that maybe the misoprostal will work for me. I know it doesn't work for everyone, but that one study said it helped 58% of the IC'ers in the study - seemed worth trying.
Blessings, and I hope everyone has happy holidays....
P.S. Thanks everyone for wishing me good luck and Luna, I hope so much the herb works for you or that you get a chance to try the Cyclosporin if it doesn't work.
12-19-2005, 07:30 AM
I'm glad your visit went well. I hope the Cytotec works well for you. I am still leaning towards removal unless they can find a way to fix this urethra. Big surgery anyway I look at it. Wonder if they would do a breast lift and tummy tuck too? :biglaugh: :biglaugh: Gotta keep a sense of humor. For my endo, the hysterectomy/oopherectomy was the best decision I could have made. That's just me though. I worry about ya, hang in there. I will too.
12-19-2005, 07:37 AM
Thanks so much, Barb. I think you are being wonderfully brave, facing this surgery, whether it's bladder removal or the repair. The hysterectomy/oopherectomy must have been a huge scary surgery too! I can tell you were a soldier :) I keep telling myself that when I get scared when I think of surgery, I keep saying to myself, "c'mon, soldier, there are soldiers in Iraq losing limbs and losing their lives, losing a bladder is nothing compared to that, so toughen up and stop sniveling!" I talk to myself like that and sometimes it helps, sometimes it makes me toughen up a bit and face what has to be faced. I know I'm not a soldier anymore but I still talk to myself that way anyways.
I just feel bad that there I was expecting the worst even though I knew he was an excellent doctor, and he came through for me like an angel from heaven. I always do that. I think it's my way of bracing myself for disappointment or something. It is easier to feel anger than fear and hopelessness.
We're going to be okay. We are going to make it. I will let you know how my experiences with the meds go. If this works, maybe it's something you or others could try as well, with your doc's approval of course. I know you would still have the terrible problem with your poor urethra...is there any way to fix that at all? Well, if it has to be, it has to be. You've gotten through so much already in your life, I know you are strong and tough and you will get through this too.
12-19-2005, 02:58 PM
Lori, glad to hear that your fears were unfounded and you had such a positive doctor appointment. I hope one of those treatments helps you.
Barb, good luck with talking them into a tummy tuck and breast lift! When I needed surgery for a bowel obstruction, I asked him to also do a tummy tuck, but he just laughed at me! I guess he was more concerned with getting me through the surgery. I found out afterwards that if they had waited even 2 more hours I would have died! So I just have to live with my flabby stomach courtesy of having two children, and enjoying eating too much. Judith
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