I am upset and in pain

[Kara29]

It's 2:40 AM here. I am in too much pain to sleep. This Vestibulectomy has thrown me way off course. I have a lot of things to take care of at my home and at my Mother's Home this week and then we are both off to a planned vacation with another ICer that I've been as close as family with for almost 2 years. They have planned a nice trip for us. We are excited. It's just these days when I am in so much pain and so upset that get me down on all of it. Everything that I've worked for and everything that I wanted for myself.........I keep reaching for pain relief in any way I can but there is just no escaping this. At least for now. The Doctor says that I have to give it at least 4-8 more weeks of healing time. I have literally hundreds of stiches right in the center of the vagina. I have to take 4 sitz baths a day for 30 minutes at a time to try to dissolve the stiches faster. In the meantime I've been resting in bed and not sitting.

My fear is that this surgery will not have done enough to cover the pain relief and that I will be this way for the rest of my life..........except for one last surgery the PNE Decompression. I can't even think about it now.

I'm going to go for now.........very nauseated, tired, and did I say tired?

I just needed to let out my feelings.

I hope all of you are enjoying very nice slumbers.

Kara

[krisillis]

Hang in there Kara, it always feels like the end of the world at 3 am when your sick as a dog with no sleep and your pain meds refuse to kick in. Hopefully by the time you get this you'll have been able to get some sleep and things will seem brighter in the light of day. I'll get out and push and see if I can't spin the world a little faster to make those 4 weeks come quicker.

Christine

[ICNDonna]

:grouphug:

Donna

[SharonA]

(((Hugs))) :kissing:

[sandymarie]

:grouphug: Sending prayer and hugs.

JJ:pray:

[Mel53H]

I'm so sorry!:grouphug:

[gopher7895]

Kara...So sad to hear you're in pain. I wish I could do something to help you. You are in my thoughts and prayers. I've been in a 3 week flare myself and am pretty frustrated with that. I was trying herbal supplements but started taking Elmiron and Vistaril last week as I can't manage to live a normal life with all this pain. Hope you can get some sleep and feel better soon...Sue

[SandyRN]

Kara,

I wish I'd gotten online. I was awake when you wrote this...lots of things on my mind as well and lots of pain here too. I'm so sorry things are not better for you yet, but they will be once you heal. I'm sure of it. I can only imagine that with all those stitches your pain is unbearable but once they're gone/melted away I bet you will feel so much better. Keep thinking of the day that the last stitch is gone and how much better you'll feel. You've come such a long, long way in the past couple of years and you're a fighter. You'll come through this too.

Take care of yourself.

Hugs, Sandy

[leelee88]

So sorry Kara...:pray:

[tracyscherer]

:pray:

I asked God to give you rest.
Tracy

[ICNJess]

Aww Kara, I hope you start feeling better. Hopefully the pain will ease up for your trip, you really need a break.

((((Hugs)))))
Jess

P.S. Still digging through my pics, I'll get back to you one of these days! :)

[Judith56]

I hope by now that the pain has eased and you are feeling better. Hugs,Judith

[christinaw]

Hi Kara,
I hope that you are feeling better with each passing hour. I am up and in pain EVERY NIGHT too . . . I wish I would have logged on and seen this email then . . . I would have responded sooner. Sending you hugs!

[Kara29]

Your thoughts and prayers and well wishes were all taken. I am so grateful to have your support through this. It's not over yet, but I did get some sleep last night. I will continue to fight.

I would like to have some good days back without pain meds.

I just have to wait for my body to heal and reject those stitches.

Then we will know if it did anything helpful to lesson some of the pain or not.


I'm going to try to take lots of photos of my trip. Maybe I'll have a good day in there.

Kara

[Emma's Mommy]

ouch that does NOT sound fun.....i hope you're doing much better by now...if you need anything just give me a call, i'm not working much right now (i'm trying to take some form of maternity leave) so i'm usually just sitting at home with the baby!

serously call me if you need anything!!!

[Kara29]

Maybe I will do that Erika

[Emma's Mommy]

well i'm only a phone call away!

[marsi4]

You have no idea how sad I feel for your pain and suffering. I have prayed and hoped that your pain would subside somehow someway. It's not fair that anyone should have to go through what you have and are. I'm so very sorry and I can only imagine how painful all those stitches are in such a sensitive area. I'm at a loss for words as my tears roll off my face. Please hang in there and try and get some enjoyment from your trip. I will keep praying that some doctor can do something to ease your pain. Sending you my love,

Marsi4:angel:

[Kara29]

Thank You Marsi! Your kind words mean so much. Some days are good and some days are really bad. It's hard because I never know how I am going to feel from one day to the next or even from one hour to the next. That's why I have to take the times when I am feeling well and run with them and get as much done as I can. I had a wonderful trip.

Kara

[Sally939]

I am so happy you had a great trip. You are so lucky that you were able to enjoy it. I hope your good hour grow.

[sue041]

My doctor said that I am at the end stage of IC and wants to remove my bladder and whatever else he thinks is giving me the most pain. I got another pain pump July 23 and the pain Dr. just starting to get it up enough that I do not have to take as many pills, but I am still on the pain patches and 200 Oxyir a month. It seems like a lot when you read this, but they are only 5mg. He will not give me anything stronger, why I don't know he thinks my level rate is some where around 4 at the pump setting, I am at
3.3 now and go back every two weeks to get it turned up and to get another script. I do not want my bladder out, it seems like it just keeps on going from one body part to another that has to be removed then you also have the paythom pain, plus nerve damage. Where will it end and does anyone out there know how they decide that it is at the end stage?
Thanks for all your help.
Maybe I am a chicken, but I would rather have the pain pump turned up more and more and then the pain has to stop.
You are all so brave, I can't imagine letting them butcher your body up in experament for the good of finding a real cure, I think the only cure is when we die. I don't understand how some of you are in remission and how you got there, I watch what I eat and do not take vitamins, because they cause me to flare, Maybe when I get the pump turned up high enough I will have a life with not as much pain. What do you all do when the doctor says it is in its end stage. My pain doctor just rolled his eyes when I told him what the uro gono said.
Take care I will keep you all in my prayers.
Sue041:pray:

[Judith56]

I had my bladder out over 21 years ago. I have never been happier. I do not have phantom pain, never did. I did have phantom urges to urinate but in time they went away and I can't even remember what it feels like anymore to have that urgency feeling. What are you talking about as far as nerve damage? I could have never done all things I do or did while raising my two sons if I had kept my bladder. I feel like I got another chance at living a fullfilling life once that horrid bladder was out of me. It is not experimental surgery- they have been doing this for many, many years. I am sorry that you need so much pain med to be able to be comfortable. The majority of people who have thier bladders for IC in general, are glad they did it. I was 30 when I had the surgery. I would be happy to answer any questions you might have. Judith

[Texas Baby]

Sue,:hi:
I too had mt bladder out in fact just this Feb. My life began when my IC ended. I have felt great since. I don't have any nerve damage tha I know of. I am so sorry you ar in so much pain. I can tell you I was on a very high dose of heavy narcitics at the end and could no longer function that way. some people do have phantom pain , but I didn't. I can't tell you whether or not to have your bladder out that is only a descion you can make, but it really trully saved my life. Bladder removal isn't for everyone though. Judith was a weatlh of information for me. PM me if you would like. I wish you luck!
Blessings & Hugs,
Eva

[Kara29]

I can't imagine letting them butcher your body up in experament for the good of finding a real cure, I think the only cure is when we die. I don't understand how some of you are in remission and how you got there, I watch what I eat and do not take vitamins, because they cause me to flare, Maybe when I get the pump turned up high enough I will have a life with not as much pain. What do you all do when the doctor says it is in its end stage. My pain doctor just rolled his eyes when I told him what the uro gono said.
Take care I will keep you all in my prayers.
Sue041:pray:

Dear Sue,

If you feel that it is not right for you then by all means you can reject that idea and find another doctor. Some of us had no choice but to have bladder removal. And it is NOT a cure for sure! It's another form of treatment. Every Doctor has opinions when they run out of options for patients. The fact of the matter is that at that point its time to find a 2nd, 3rd, or 4th opinion. Each Doctor may have something different to say for your care. You may even find one who has stumbled upon something new to try that is not so invasive. I hope your pain pump gets programmed to handle your pain and it may take time. If you get pain relief you won't have to worry about bladder removal or those of us who have had it done.

Big HUGS coming your way!:grouphug: (I hope that pain pump kicks in for you so you don’t have to think about this right now)

Those of us who had bladders removed were by no means doing it for our doctors to experiment with us. We have all had 100% expert doctors take care of us. This wasn't an easy choice for any of us and our medical teams to come to. When we came to this medical plan, we had a lot of support to get us through it. It also has saved many of our lives and we are grateful for that! As you can see we are all here and safe. Some of us still need other after surgeries that are involving other conditions.

Please feel free to PM me if you would like.


Kara

[ICNDonna]

If you've tried all other treatments, and nothing has worked for you, it may be time to think about bladder removal. If you aren't feeling comfortable with what your doctor is telling you, my suggestion is to see another doctor for a second opinion. That doesn't mean you have to change doctors; it just means you will have opinions from two medical specialists and can then make a decision that feels right for you.

Warm hugs,
Donna

[MakinIT]

Kara: I know you were deal with the P.N.E...I am so sorry I haven't seen this thread and seen the pain you were in. Prob because I was in my own self pitying cocoon. You are so sweet, during all this time I know you have been in pain and I've been whining about all the crap in my life. I sure hope you are feeling better.

As far as the bladder removal goes, how exactly do you deal with that? I'm not there as yet, my bladder continuosly hurts but it holds at least 400 ml before I'm really squirming ...But my chiropractor survived the bladder Cancer!!!!!! Stage 4, 2% chance and he's in remission. Only thing is, he has some activity still going on in his bladder. The doc wants to take his bladder out and he's not real happy with this plan. (I wonder, especially, how this would work for a man)

Anyway, hope you are feeling well Kara!

[Judith56]

I can tell for me having my bladder for the past 21 years has given me back my life. There is an adjustment period at first, just learning how to care for things, but after so long living with out a bladder, it is now all I know. In fact now when I dream that I need to go pee, I dream about cathing my internal pouch! I no longer dream about sitting on the toilet to pee. For me, not having my IC ridden bladder has allowed me to raise my sons, work, garden, go hiking ,etc. YOur chiropracter may want to talk to others who have had thier bladders rermoved due to cancer or other diseases. They he hopefully have some fears and questions answered. A great website is www.uoaa.org. They can also go to www.ostomates.org

[MakinIT]

Hey thanks for the info...how much urine can the internal pouch hold? (Like how many times do you have to cath?)

Thanks much

[Judith56]

In the begginning as you train the pouch you have to cath more frequently and it has to "grow" to hold increasing amounts of urine. Once it is all trained most folks cath about 4 hours or so and can get out about 500 cc's. It really deoends on how much one drinks and how large the pouch is made. My uro made mine extra large, I know mine can hold about 1,300 cc's, but it is not recommended to wait to cath when it is that full, in fact it is not good to have that much in it. Many people go by the clock as to when to cath because not everyone has the sensation when it is time to go, unless the pouch is very full. For me, I feel a pressure in the area of the stoma and if I don't cath it becomes increasingly uncomfortable. Again it really is no big deal, it is just a different way of urinating and with time it just becomes part of your routine.

[Kara29]

My Indiana Pouch can hold around 1,000 cc's. This is on a good day. I would catheterize every 4-6 hours at that point. The only time I have pain is if I let it get over that point. Then it feels like a very full and upset stomach. There would also be a lot of pressure on my anal area. As soon as it is emptied the feeling is gone. It's really very nice having the pouch. When I had my old bladder I could only hold 30 cc's so there is a huge improvement. :smile tee

Kara

(This topic is really old and I would request that we close it down) We can start a new thread to continue on to further discussions.