Just feeling a bit sad.

[ICLori]

I'm starting to think more and more, that nothing short of bladder removal surgery will work for me. And I really hate the thought of going through such a difficult surgery.

Just feeling kind of sad today, thinking that I will have to live with the bladder pain forever. Or at least for the rest of my life, which seems like forever. I really wish it would just go away. I know that we all wish that.

Just needed to be able to say I'm sad. Sometimes we just need that.

Blessings,
Lori

[vm]

I'm sorry, Lori. :( :kissing: I do think it's good to talk about it and sort of get it out. I just wish something would permanently work for you. :(

[ICNDonna]

:grouphug:

Donna

[Trishann]

Understanding Lori, we do have those days. Hope tomorrow will bring better thoughts for you.

Hugs, Trishann

[waterflow]

:grouphug: :kiss:

[green_the_fish]

Lori, with your situation, it's totally normal to be at least a little bit sad. With what you've been through, it'd be abnormal if you weren't just a little bit sad. I mean, you could take Mary Tyler Moore and drag her through what you've been through, and she'd probably start thinking she might not just make it after all :lmao:

But, seriously, we all understand. And, worst case scenario, you might have to get the bladder surgery. But, even then, you wouldn't be facing it alone. You'd have every one of us on your side, pushing for you. You'd have people like Kara and Judith, who have been there already, giving you insider tips on dealing with the surgery. You'd have so many people praying for you and thinking of you and supporting you. Just remember that. There are many, many people who care about you.

:grouphug: :grouphug: :grouphug:

[ICLori]

Thank you all so much! I never feel alone with you guys here. I know you guys always understand. I feel better now. Sometimes I just have to say "I'm sad" and then I feel better just having said it. I feel like I can kind of go on and face things for awhile again. Thanks, everyone.

Blessings,
Lori

[poetgirl]

Lots of hugs :grouphug:

[Sevasti]

I know how you feel...Hang in there O.K. I just try to take it...One day at a time...Many Blessings...Sevasti

[VickiB]

You've had it rough for so long! I'm sorry you've yet to find something that works for you, and can only imagine how sad that would make me to be in your place! I sure wish someone, somewhere would figure this IC out!

Hugs,

Vicki

[barbclay]

Hang in there!!!!I know some days it's easier said then done. But, remember ther are always better days ahead!!!!:)

[Tracey5399]

Like you always tell me, Hang in there! You've had such a long haul sweetie. My prayers are with you.


Hugs,
Tracey :)

[dancemomof2]

:grouphug:

[tigger_gal]

:pray: ers that you are feeling better... a big :grouphug: and a :kissing: to make you feel better.......

[Kara29]

Lori,

I am thinking of you and praying that someone, somewhere finds something for you asap, so you don't have to go through bladder removal. The only thing I can say is to keep doing your research like you always do and always remember that they come out with new things for IC and bladder pain every day, we just don't know anything about it yet because the FDA is still working on releasing it.

I am praying for you right now. I know the frustration that you are feeling. I hope you find some help soon Lori and remember, I am just a pm away if you want to talk.

I wish I could provide a big old tree branch for you to grab onto and then for you to cimb up and take a seat so you can rest your bladder on it. I would like you to rest because hanging in there is so very hard to do when you feel the way you are feeling. I know I am having trouble hanging in here. If it ever comes down to bladder removal, you know we will be here to help guide your way. Thank you for being the strong fighter that you have proven to be! I know it's not easy. It's ok to be sad.

Wishing you pain free days ahead, SOON ahead!

Kara

[asn]

Lori:
Just pray and ask for the right decision, God will help you make the best decision for you and your health!
I'll pray for you too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !

[evanseri]

Lori,
I am rather new to the network but have noticed the warm and insightful advice you always seemd to give others. I read a post you wrote the other day about how sad you feel and how this life seems to keep dragging on (at least that is how it feels when you are in constant pain). I could easily sympathize with you and too know the feeling of wanting it all to end. You are not alone and something is going to work for you (even if it has to be bladder removal) I have read a lot of good things about bladder removal and if it has to come to that, then maybe that is what will finally bring you pain free days. You WILL feel good again and when you do finally feel well again the happiness it will bring you will be amazing. Keep your head up and know that this too shall pass. You will one day look back at this "bad" time in your life and it will all be a distant memory. :angel: I pray for you and all of those who suffer from this nasty little disease. I hope for all of us that they find a cure soon!
Good luck :) Erin
P.S. I just love the little kitty by your user name!

[George]

Dear Lori,

I just wanted to send you some support. Sometimes it's good to just write how we are feeling on the boards. Sometimes we just feel sad. Hang in there Lori, I'm sending some positive thoughts your way.

[KarenIC]

Hi Lori,

I get sad alot of times too, but it's OK. I even think it's healthy to express these feelings, rather than keeping them all bottled up. I know you enjoy watercolor painting, and this is an excellent way to express your feelings and also relieve stress. Watercolors is one of my favorite things to do.

Lori, you are always here for all of us, lending us your support and love. Just know that you are never alone and we care about you very much. One day, I know there will be a cure for this awful disease and our days of suffering will be only a memory.

Until then, please hang in there with all of us.
I'm sending big hugs your way.

Love,
Karen

[SharonA]

Lori...Sending you lots of hugs.

[Trishann]

Lori, just want to say "Hi". My thoughts and prayers are with you. I know sometimes we ask ourself why are we keeping this bladder? Why do we not have bladder surgery? What are we holding on too it? Is it fear? Is it not knowing all the facts? Is it because we are hoping something will come up and it will be a cure for our bladder? Are we afraid that if we do this, down the line will it be the wrong decision? I know my thoughts go through this day by day.

But I can't help thinking, when it is time for this surgery, I will have no second guessing about it. I pray for both of us that whatever we decide to do that we will have peace of mind with it.

Hugs, and more hugs, Trishann

[ICLori]

Thank you all so much for the wonderful support. You guys are the greatest! I am feeling much better today. I am thinking - well, the next hydrodistention will show what my capacity is. That will help give me more information about whether or not to think about bladder removal...

Blessings,
Lori

[Kip]

Hi Lori,

Hang in there as long as possible before having your bladder removed, I know the pain of this condition gets you down, I felt suicidal prior to my bladder and bowel surgery 3 months ago. Unfortunately I didn't get a choice about my surgery as my bladder and bowel failed on me and I was left with hours to live. In some ways it made it easier as I didn't have the limbo stage as to what could I tolerate and manage, what are the consequences if I do have it done, will it make it better?

For me it saved my life, I am not painfree but have been looked after very well by a pain team and so the pain is manageable. I have a permanent stoma, I have had complications and on a daily basis this can be challenging. Getting your head around body image change is also another thing to consider. Find someone that you can talk to, meet others that have had the surgery, see what it looks like, consider all the factors so that you can fit the end results around your life. Once it is done you can't go back so check out all the options first.

I got made redundant and lost my job 2 days before my surgery, and my partner of 9 years left me 3 days after my surgery as they could not cope with the results of my surgery.

I am not saying this will happen to you but fortunately for me, financially I am able to support myself and will do for a long time to come as I was highly paid and saved money, I have met another partner who is not bothered at all by my new addition, so the end of a relationship is not that hard to get over.

You will have down days, I have had them, this condition is tough but it gives you so many positive things too (no, I have not taken too much analgesia!!!)

The positives of this condition are; Project management skills, determination, adaptability, problem solving, spirit, resolve, inner strength, empathy and understanding, technical skills, insight into a hidden world although a bit dark and murky at times you find a beautiful forest where there are beautiful flowers just like you growing (like this site) and only certain people/flowers are let in. This condition puts things in perspective, gives you focus, sets you challenges that you can overcome but sometimes it is good to hold onto that hand when you need to, or shelter under the tree.

Take care

Kip

[ihurttoo]

Dear Lori,

There is nothing more that I could possibly say that the others have not said already. I just wanted to add my name to the growing list of those who care and understand. I hope that the dark clouds pass soon and you start seeing the sunshine again. Love and hugs, Amy

[ICLori]

Thank you both so much! Kip, you have gone through so much and still survived - good for you! Your story inspires me. I won't be looking at bladder removal unless I reach absolute bladder failure - the problem is, I'm already well on my way there, with my last hydro (2 1/2 years ago) showing that I was at 450cc capacity.

Blessings,
Lori

[Trishann]

Lori, I hope you are still feeling better.

Lori, is this the first time you are checking to see what your bladder capacity is?
Or just checking it to see if there have been any changes.

The first one I did show 100cc and then next time it show 200cc. So there was alittle difference, but for the good. I don't understand all of this but any upgrade is good.

Hugs, Trishann

[Trishann]

Sorry Lori, I must been typing the post when you were reply back to Kip. I hope your bladder capacity will increase. Hope it is good news.

Hugs, Trishann

[ICLori]

Hi, Trishann, thanks. Was 100cc your bladder capacity under anesthesia or when you were awake? My capacity when I'm awake is currently 60cc. My capacity under anesthesia was 450cc two and a half years ago. Normally your capacity when you are awake varies a great deal, and can increase, but normally your capacity under anesthesia stays the same or decreases, because once scar tissue is formed, it generally doesn't go away. There can be some slight variance depending on how much pressure per square inch the doctor is using and also on how inflammed your bladder is at the time, but as a general rule, bladder capacity under anesthesia does not increase with time.

Blessings,
Lori
P.S. If your bladder capacity under anesthesia is only 100cc - meaning your bladder holds 50cc or less when awake - I am very surprised the uro didn't suggest bladder removal at that point, since anything less than 250cc under anesthesia is considered frank bladder failure...

[Trishann]

I had a hydo/hydro twice done in the hospital under anesthesia. I have a copy of the report. What was strange he said it was worse but how could it be if the report show an increase in the bladder? To me that is good news. This was done about a year ago.

[Trishann]

Lori, wait, let me check the report again to see. I'm curious now. Get back to you.

[Kip]

Hi again,

Bladder capacity is not always an accurate way to measure your true capacity. My bladder capacity showed 30cc even though 400cc had been put in. One of the problems I had was I have severe Chron's disease of my entire digestive tract. My bowel had adhered to the bladder, every time the bladder filled my bowel obstructed, every time my bowel filled my bladder obstructed.

Due to the chronic inflammation, obstruction, reflux back into my kidneys causing hydronephrosis, I had developed pockets in my bladder, my bladder had lost its tone as well. This meant that even using a catheter my urologist could not empty my bladder...

You need to ensure before having your capacity measured that you have had your bowels open as this can make a difference even if you do not have inflammatory bowel disease.

Hope this helps

Kip

[ICLori]

It is possible that your capacity increased under anesthesia slightly - I think sometimes the doctors each use a different pressure to fill up the bladders, if one used more pressure than another, it might make the bladder a bit larger...also I think that inflammation plays a role in making the bladder smaller, not just scar tissue. Inflammation can vary, although scar tissue generally doesn't - so perhaps if the capacity is reduced to inflammation and then the next time, things aren't so inflammed, maybe the capacity would be slightly higher.

But even so - 200 cc is still really really bad, if that is capacity under anesthesia. I think that most uros would start suggesting a cystectomy at that point, wouldn't they?

You must be suffering terribly with a bladder like that. I can't even imagine! You must be running to the bathroom dozens of times each day and night.
:(

I'm kind of confused, too, that the uro would say your bladder was worse, when the capacity increased slightly. Maybe he meant that the other signs of inflammation were worse? Well, either way, if it's 100 or 200cc, that's still very much end-stage IC and I feel very sorry for you, you must be in more pain than I am, and I'm in more pain than I want to be, that's for sure. :(

If your doctor has talked about removing the bladder...do you think you might want to? I'm really afraid of the operation and after-effects, myself, but maybe there is just no other way, in some cases, when the bladder is really bad.

Blessings,
Lori

[ICLori]

Hmmm...thanks Kip, I had no idea...no doctors have ever mentioned that to me...? Sometimes I wonder if doctors know what on earth they are doing.

Anyway, my capacity when I'm awake is something else entirely - only 60cc which isn't so good. And that's with sterile water. When it's urine, it's usually less than that. :(

Blessings,
Lori

[Trishann]

Lori in 2003, the procedure was cystoscopy, urethral dilation, hydrodistention of bladder, biopsy of bladder, fulguration.

Findings: under anesthesia, maximum capacity of bladder is 100cc.

In 2006, the procedure was cystoscopy and hydrodistenton of the bladder.

Findings: under anesthesia, maximum capacity of bladder is 200ml.

Hope this is helpful,
Hugs, Trishann

[ICLori]

Well, your capacity increased...wonder why your uro said it was worse, though? Maybe he forgot what the previous report had said?

How is your capacity when you are awake? I'm guessing that you have to void all the time :( am I right?

Did the doctors ever check your capacity when you are awake? It's where they fill your bladder slowly with water and then you tell them when the first urge to void is.

Blessings,
Lori

[Kip]

My bladder under anaesthetic still only filled to 30cc even though more had been put in.

Hence, I guess the urgent need for surgery.

Trishann, just out of interest, are you catheterising to empty your bladder, or do you pee in the usual way with frequency etc......

Kip

[Trishann]

I am really off beat talking to you all, sorry about the confusion.

My doctor did talk about surgery the last two times I went to him. I wasn't ready so he said, when I am ready he will do it.

Lori, I think you are just in much pain that I am in no matter what the bladder capacity is. But I also feel like you do, the big ?????, I don't know. I guess because there are days, I'm doing good. Well, as good as I can be. I guess that is why I keep on hoping.

Hugs, Trishann

[Trishann]

Kip, I pee the usual way with frequency and pressure.

Lori, I remember the first time I went to him he did a cyst. and he did use something to see what I can hold. But I don't remember much what he said because I was in so much pain. I didn't think I was going to make it home, I was so miserable. Thank God, my husband was driving.

I don't like to say this because I know this don't happen to everybody. Some people don't have much problems with it.

Hugs, Trishann

[ICLori]

Hi, Trishann, I think you put your finger right on it - the big question of, do we keep our bladders or have the surgery? I really struggle with that to, and wonder if I'm making the right decision.

In a way, I'm almost hoping for a really bad capacity (like 100cc or something) under anesthesia because then the choice would be (at least for me) made for me. I would see at that point that my disease was progressing rapidly, and I could see where it was going - and that the inevitable result would have to be cystectomy.

BUT - if my disease is staying the same, not progressing as far as the bladder scarring (fibrosis) goes, then maybe it makes more sense to just leave my bladder in and try to manage the pain with Ultram and self-help methods.

I think this is a really, really hard place to be in, those of us who are trying to figure out what would be best. Those of us for whom the more conservative treatments have not worked.

I don't mean to downplay what Kip has gone through, but part of me wishes that the decision could be taken away from me - that other forces would decide for me. Because I'm having a really really hard time knowing what is best to do. For now, my bladder is staying in...but I wonder almost every day if I'm making a big mistake. I just keep telling myself, "well, I'll hang in there awhile longer, if things get really really bad, maybe I can do the bladder removal then..."

Blessings,
Lori

[Trishann]

I do once in awhile measure my own urine output to see what is happening and log how much water I drink. The urine measure is 1oz. to 3oz. Once in a great while it was 3 1/2 ounces.

I understand Lori, my doctor told me that evenutally my bladder won't hold nothing, it will just run out. But then I know I don't have a choice and I don't have to decide and wonder what is best thing for me.

Hugs, Trishann

[Kara29]

Lori,

At the end my bladder could only hold 30cc's awake and only 80cc's under anesthesia. Just to give you a figure of what end stage IC looks like. Now on a good day when I am not having phantom urgency, I can hold over 1,000 cc's.

Love and Hugs!:angel:

Kara

[ICLori]

Thank you, Kara! :) Thanks, too, Trish, for letting me know what your awake capacity is. It's so helpful to kind of know where people are, at different stages. Especially for the stages when a person really is approaching the "remove the bladder" stage.

It's odd how some doctors have different criteria for when to remove the bladder. I know one person on the boards had hers removed when her capacity was what mine was 2 1/2 years ago. Others, like Kara, wait until it's 100cc or less. I've heard 250cc talked about here and there so that might also be another threshold that some doctors use.

Well, for me, I guess I wouldn't consider bladder removal unless it got to 250cc or below. After that point....I'd probably give it some serious consideration.

Part of what I think about is, I know any big operation is easier on a younger person than it is on an older person. If you have to eventually have a big operation done, it's better to have it done at age 45, for instance, than age 65.

Just a lot of thoughts floating through my head. It's a very difficult thing, to know for certain when it's time to consider bladder removal. It must have been so hard, for those of you who have had your bladders removed.

Blessings,
Lori

[Trishann]

I think the one that has a possibility of bladder of surgery mostly think alike in some ways, because I was thinking the same thing too. The age thing, I do have other health problems and I don't want to wait until it will be hard to heal properly. That is a BIG issue to consider.

I don't understand about the bladder capacity either. I think because you did try everything that is possible that you should have a right to decide if you want your bladder out or not. I think maybe the doctor will give you that option, he should.

Just want you to know that I'm for you whatever decision you make. I know each one of us have different issues we are dealing with even though we have the same thing. That is why it becomes an dividual choice, and I don't think people understand the reason of it.

Hugs, Trishann

[green_the_fish]

Lori, I think in your case, it's not just a matter of bladder capacity, but more a matter of having exhausted all other options.

Just curious, could you post a full list of the treatments that you've tried? I know it'd be a hassle, 'cause you've tried so many, but it would really give me a better idea of where you're at. Off the top of my head, I can't think of any treatment options that you haven't tried, so I know it's gotta be a lot. There are a few I'm thinking of that I'm not sure you've tried, but I don't want to be redundant and suggest anything that you already had done.

Still, even if your bladder capacity isn't below 250cc, but you've tried everything but bladder removal, I think choosing the surgery is a valid decision. Quality of life is more important than capacity, and your quality of life isn't gonna be very high if you're always in severe pain and have no treatment options left. I'm not neccesarily saying that's your case, but if it were to be, we would all support your decision to have the surgery.

:grouphug:

[Kip]

Hi Lori,

Hang in there as long as possible before having your bladder removed, I know the pain of this condition gets you down, I felt suicidal prior to my bladder and bowel surgery 3 months ago. Unfortunately I didn't get a choice about my surgery as my bladder and bowel failed on me and I was left with hours to live. In some ways it made it easier as I didn't have the limbo stage as to what could I tolerate and manage, what are the consequences if I do have it done, will it make it better?

For me it saved my life, I am not painfree but have been looked after very well by a pain team and so the pain is manageable. I have a permanent stoma, I have had complications and on a daily basis this can be challenging. Getting your head around body image change is also another thing to consider. Find someone that you can talk to, meet others that have had the surgery, see what it looks like, consider all the factors so that you can fit the end results around your life. Once it is done you can't go back so check out all the options first.

I got made redundant and lost my job 2 days before my surgery, and my partner of 9 years left me 3 days after my surgery as they could not cope with the results of my surgery.

I am not saying this will happen to you but fortunately for me, financially I am able to support myself and will do for a long time to come as I was highly paid and saved money, I have met another partner who is not bothered at all by my new addition, so the end of a relationship is not that hard to get over.

You will have down days, I have had them, this condition is tough but it gives you so many positive things too (no, I have not taken too much analgesia!!!)

The positives of this condition are; Project management skills, determination, adaptability, problem solving, spirit, resolve, inner strength, empathy and understanding, technical skills, insight into a hidden world although a bit dark and murky at times you find a beautiful forest where there are beautiful flowers just like you growing (like this site) and only certain people/flowers are let in. This condition puts things in perspective, gives you focus, sets you challenges that you can overcome but sometimes it is good to hold onto that hand when you need to, or shelter under the tree.

Take care

Kip

Hi Lori,

It was easier for me Lori to have the decision made for me, however I still had to deal with surviving the surgery and adapting to my new addition. I would advise anyone considering surgery that make sure you are fully prepared for everything that can happen afterwards when you start your new chapter. It is hard for me at times to remember my life prior to my surgery and it has only been 3 months, it is tough to get your head around the radical changes and the relief. I have lived life to the fullest in the past 3 months making up for lost time. Life is not the same with IC and it is never the same with bladder and bowel surgery. I have to have surgery every two months now for the foreseable future as my Chron's flares my stoma up so badly that I need to have the damaged tissue cut away from my stoma site to ensure it remains effective. My life has improved so much and surgery is no big deal in relation to what I have been through but it is a reminder that although surgery resolves some of the problems it can also bring new ones. If you can deal with that then that will help your decision to have surgery or not.

Kip
x

[Katrina]

:grouphug: I wish I knew the right words to say. I do believe that most IC patients are very happy after having their bladder removed but it is impossible to know weather or not you will be one that has one of the very unusual problems....but I know whatever happens or whatever you choose you can deal with it...you are a very strong women. :grouphug::grouphug:

[Silverfern]

:kissing: Lori! I'm so sorry you're going through such a hard time, and like everyone else here, I just wish I could make it all go away for you.

:grouphug:

[ICLori]

Thank you all so much for your kind words...

I think this next hydro/cysto will really help me make my decision...

Blessings,
Lori

[Trishann]

Lori, I don't know if I overlook it, but when are you having your cyst/hydo done again.

Hugs, Trishann

[Sarojini]

Hey Lori, just wanted to give you a :grouphug: and say I'm sorry you've been sad :(

[Trishann]

Lori, can you do me a favor? You said something about fibrosis, which I never heard about being in the bladder. I look it up and this is what it said," bladder fibrosis is scar tissue in the bladder. This may build up and cause the bladder wall to thicken. When this happens, the pressure inside the bladder increase. This may affet the bladder's ability to store and empty urine. Overtime these changes can lead to damage the kidneys.

When you go for your test can you ask your doctor about this. I was told before because I have low volume it won't affect my kidneys, but this doctor been wrong before and now I am concern about this information I got.

Hope you write back.
Hugs, Trishann

[glassd18]

Hugs to you Lori!!

[Annie2]

Lori,

I just saw this thread and want to send a soft but gigantic :grouphug: to you. You are in my prayers. I hope whatever route is best for you will become apparent and make your decision easier. The word "easy" certainly does not belong in any sentence concerning IC, does it? There's nothing easy about it. You have given so much of yourself to help each one of us here and I think it is safe to say we all are here for you and will give you our full support no matter which you route you must take.

As you know, I was in New Hampshire for many months and went through a very difficult time with my husband being critically ill. He's doing well now and I thank you for your support and prayers. I'm back in Ohio now. If there is ANYTHING I can do for you, anything at all, please let me know! Along with so many others, I'm here for you.

:kissing:

[ICLori]

Thank you so much, and Annie, I sure appreciate your support and prayers! I am doing okay - just kind of in a limbo, wondering which way to go in treatment. A lot is going to depend on if my scarring is progressively getting worse, or if it's stabilized. I think I'm kind of ready to face whatever needs to be faced.

I'm so glad your husband is doing okay now and you guys are back home! What a nightmare that was for both of you. :( I'm just glad it's over!

Trishann, thanks for mentioning that test for the kidneys - my doctor (Dr. G., back in D.C.) actually did that test on me where they check to see reflux to the kidneys - to see if urine is backing up (that's what can damage the kidneys in the case of scarring...) And luckily for me, that's not happening in my case. No, my kidneys are damaged from NSAID use, really, over the years, and blood pressure that tends to go sky-high whenever I'm nervous (and I'm always nervous.)

Have you had that test done? I'd imagine with only a capacity of 200cc under anesthesia, your bladder must be nothing but a little lump of scar tissue!

Thanks everyone, for everything. I'm doing okay. It's just that I always get disappointed when it becomes clear to me that yet another treatment I had high hopes for, isn't working.

Blessings,
Lori

[Trishann]

Lori I am sorry that you are so disappointed about this drug not working as well as you would like it to do. I just wish there was something I can do. I don't know if this will help but maybe.

I don't know if you like reading "christian stuff" but the rest ministry information is really good about dealing with the spirituality part. Even if you don't, it still have things that are really helpful about dealing with illness.

I hope this offer you some help,
Hugs, Trishann

[Kara29]

Trishann,

My bladder was highly firbrosed. The scar tissue was like a tiny ball of cement. It could only hold 30cc's. It was so full of scar tissue that they could not distend it in the end. I had cracks and holes inside of the bladder that were leaking urine to the outside of the bladder. I had urine inside of my body. That is how far fibrosis of the bladder tissue can go. My kidneys were about to be compromised in a big way but he got that old bladder out just in time. 2002 RIP.

Lori, I am still thinking of you. I know you are a fighter like myself and are fighting to find the right answers. You will feel if this is the right way to go when the time is right, if it is ever right. Hopefully they will come out with some new treatments before you make your decision. I pray that the hydrodistension will help guide you in the right direction.

Kara

[Trishann]

Kara, I never heard about fibrosis until Lori said something about it. My doctor never mention it to me, but what I am reading, this is what cause the bladder to get small and lose it capability to stretch. My bladder is both. I am so upset about it because I guess reality is kicking in.

My doctor is the type knowing and doing his job which he is good at, and he deals with IC and also do removal bladder surgery, but explaining things he not good at unless you ask question. But how do you ask question, if you don't know.

I guess he just took it upon myself knowing this needs to be done, but not explaining to me why. I am the type that wants the dots connect before hand.

Sometimes I think that is good to be like this but then maybe not.

Thanks Kara for sharing this with me.
Hugs, Trishann

[Trishann]

Kara, I cut the reply short because a small emergency came up but everything is ok.

I just want to know if there is any possibility for the bladder to heal itself. I know it won't be perfect but if all possiblity can it heal itself someway. If not I know I will have surgery. I know my life will change and new things I have to learn but I am doing this already with having IC. That is a change.

Hugs, Trishann

[SandyRN]

:grouphug:

Lori,

Just wanted to let you know I'm thinking about you and very sorry you've been going through so much lately. I hope things get better for you soon!

Sandy

[ICLori]

Thank you both so much for your kind words! Kara, I hope I can be 1/10th as brave and full of grace as you have been, throughout your fight. You are a real inspiration to us all! Even when you are suffering, you are still doing all you can to help others on this path. There are real heroes on these boards...

Kara, thanks too for describing the fibrosis and what it was doing inside of you - it's very helpful to me to kind of see down the path a ways, if that makes any sense. I'm hoping that my bladder didn't form any more scar tissue in the last 2 1/2 years, but during that time, I've had a lot of time where I've been in pain, and I figure if there is pain, there is inflammation, and sometimes when there is inflammation, the body forms scar tissue. So...I will let you guys know. Dr. T. (my wonderful urogyn) told me I'm on the surgery list and that I'd be told pretty soon when it would be scheduled (the hydro/cysto, I mean.) So I'm looking forward to that.

I actually feel kind of ashamed that I posted this, because it was really only a momentary feeling of being down, like we all get from time to time, and I didn't mean to make anyone worry about me or anything. You know how it is, sometimes this disease is just kind of hard, and sometimes a person gets disappointed when something doesn't work, and this is kind of where I come to whine because my husband has limits like any person would, to hearing me whine all the time. I'm just so glad and grateful this board is here, and you guys are as wonderful as you are, because sometimes it just makes me feel so much better to whine a bit.

Trishann, it's funny that you wrote that, about spirituality, because I recently decided to start going to church. I was baptized Lutheran, but my parents stopped going to church when I was six, and so I was never confirmed into the church or anything. I would go to church sometimes with neighbors, so I've gone to services of various denominations and even Jewish services (I was curious) but I haven't really had a good background in the religion I was baptized in.

My sister has been recently ordained as a Lutheran pastor, and I just thought - okay, maybe it's time for me to come back to the church.

So I went this past Sunday, and it was really nice. I was really glad I went. And the sermon was on strength through adversity, and how we grow spiritually when we are suffering and facing hard times! :) Boy did I ever need that sermon, LOL! I decided I wanted to try to make this IC thing help me be a better person. I think that I've come to understand chronic pain better, and diseases when there isn't a cure - I understand kind of how people feel with those things. And on a broader level, I understand how people feel when they are stuck in bad situations beyond their control, in general - bad jobs, caring for dying loved ones, etc. Things that are hard. Because life is just really really hard for everybody, even if they seem to have it easy at one time or another.

Trishann, I don't know if it's possible for the bladder to heal itself entirely, but it's wonderful that your capacity under anesthesia improved - and when I saw the studies on CyA, it showed that bladder capacity under anesthesia did go up slightly for those who benefited from the drug. So that tells me, scar tissue isn't the only thing shrinking the bladder - sometimes the bladder is stiff also just from the inflammation. And if the inflammation is healed, then that part of the bladder is able to expand again. It all just kind of depends on how much scar tissue versus inflammation you have. I suspect you do have at least some scar tissue, with a capacity that small. But your capacity increased once from 100cc to 200cc - I am hopeful that perhaps with treatment to stop the inflammation, it could increase even more. Probably not back to what you were born with - 1,000 to 1,200cc - but maybe enough that you could have a good-enough quality of life.

If your disease keeps marching on, if it gets to that point - Kara and Judith and many others have been down that road before us, and one IC'er who just had that done not long ago, is now getting straight A's in her classes and heading to a new, exciting career! They all showed us the way - they showed us that it is hard, but we can get through it and out to the other side, hopefully to a better life on the other side. Again, we may not come to that point, but if we do - I think we will be okay.

Blessings,
Lori
P.S. Thank you, Sandy, I appreciate your kind words! :) Actually the last couple of days have been good - I have painkillers for my teeth that are shutting my bladder up, LOL - life is good! :) Plus I'm grateful that I can get great dental care to try to save my teeth - my mother was in full dentures before the age of 18, as was her mother - genetically messed up, soft teeth that had rotted down the gumline within a few years of erupting out of the gums. My teeth are also wearing away, and dissolving - but I'm capping them a couple at a time, a few at a time. I hope to hold on to my teeth as long as I can.

[Trishann]

Lori, I am happy to know your spirit is being lift up. I know this will take time and you might get low again, but this is a start. A start is a beginning of something you can work with, and little by little you will be able to stand again.

About feeling bad and writing it, NEVER feel that way. I don't know one person that never went through a low time in their life. And if they never had those days they evenutually will have it in their lifetime.

Lori thank you also for the information about inflammation. This is something I will have to find out with my doctor. That does make sense. You are right about the caring people like Lesa, Judith, and Kara. They truly are a inspiration to us. I thank God for them.

Hugs, Trishann

[Kara29]

Lori,

Its ok to talk about whatever you are thinking. This message board is how I made some of my most important choices in my IC life. It's ok to wax and wane in your feellings as to what you want to do. It's ok to talk about surgery and then change your mind all together. This is how to brainstorm decisions. No matter what you do to treat your IC. I will be here with you all of the way and so will the rest of us who are hanging around. Friends stay with you no matter what you do in life. When you want to talk about CyA or Bladder Removal or anything else regarding IC, we are here for you!

Love and BIG HUGS!!!!!!!!!!!!!!!! :kiss: :grouphug:

Kara

[Kara29]

Trishann,

In answer to your question, can you bladder heal itself. Maybe some others can answer this. I know for me it was already pretty much dead. You could ask your doctor about this question. Have you tried calling him on the phone to ask questions? He may surprise you with the answers.

Kara

[Trishann]

Kara, thank you, I will ask the doctor the next time I have an appointment.
I hope you are feeling ok today. We just keep on going and I am glad you are here too.

Hugs, Trishann

[mum43]

Hi,
I am feeling totally depressed today.
I have had all the pre-op checks done yesterday and seen all the doctors involved.
Then just when I'm getting on the train to go home and get ready for my ops, the hospital phoned me.
They have postponed my op again for the 3rd time now, because the surgeon has to take his annual leave and can't do my op untill the 17th november now, if the surgeon can fit me in. I really don't need this.
The pain is getting worse and the doctor has upped the morphine,it's not helping me much.
Why they never realised that the ops wre booked at the same time as the surgeon's holiday, I don't know.
This means I will have a lousy christmas because of the catheters and bags stapped to my leg and the stents etc.
I won't be able to cuddle my grandchildren, or do anything.
Arrangements will have to be changed, and now I have to wait for a new date.
take care everyone xx

[Trishann]

Mum, I am so sorry. I don't think they realize when we have an appointment for surgery that it needs to be done then. I don't think they realize what roller coaster ride they put us through when they up and cancel appointments. I wish there was something I can do, but I only can give you a big hug.


BIG HUGS, BIG HUGS
Trishann