Been in hospital
 

Hi everyone, sorry I have not been around. I had the bladder distention and biopsy for my IC last week and ended up having complications. I started having horrible pain and bleeding on Monday and my doctor was not taking it seriously, I ended up finally convincing them to see me on Tuesday because I lost more blood and clots and was not able to eat or drink anything. I saw my new GYN and found out my endometriosis is back and in my hysterectomy scar and basically the doctor had been making it worse because all she did was put me on straight estrogren for about two years! So, I was upset about that and then I went to my Uro appointment and they made me wait over an hour and then finally saw me and saw that I was urinating blood! They made me have a catheter treatment and irrigation without numbing meds and I cried and begged them to stop and after they cleaned out more clots and blood and I almost passed out on the table they sent me to the hospital. I had to have another surgery yesterday because the bleeding would not stop and when they finally went in they saw that a clot had come off the biopsy places and I had been bleeding from an artery! If I would not have had the surgery I would have kept bleeding and I would have bled to death! It was extremely scary because of the blood and clots but also the horrible excruiating pain that was the worse pain I have ever been through (and I am counting kidney stones and spine stuff). I am still in alot of pain but they finally let me go home with a bunch of medicines. I have horrible spasms that cause my body to shake everytime I drink something and go to the bathroom. This week has been really bad on me! This also started up while we were planning our wedding ceremony and looking forward to the wedding is the only thing that is getting me through all this bad health stuff. We won't even know if the distention helped anything for another few weeks and if not I have to go back on the catheter treatments :( I also found out my bad kidney is doing so bad that it is making my healthy kidney work harder and I have kidney stones in the bad one again. Now I am up to a total of having 16 surgeries since I was seventeen years old! My stim has been doing great though so that is a positive but anyway I just wanted to let you all know what had been going on. I will be around when I can since I am still recovering from this surgery and in a lot of pain , hope you all are doing well. Take care!

Oh Dear Tara.....
 

I was surely wondering and concerned about you, being the reason I sent the PM yesterday. Your situation has been so dire, so difficult, and the care has now been shown to be less than you needed. I am glad your spirits regarding your forthcoming wedding are still high, and hope and pray that you find your health issues to be on the mend without further surgeries needed to assist.

You precious lady, you have been such a pillar of strength bearing up under all of the difficulties which came your way, an inspiration to us all when it comes to bearing up under the issues you have shared.... and now to hear we could have lost you. I pray thankfulness that the arterial bleed was located and also that it has been properly attended so it is no longer an issue.

Thank you for messaging us, and may you mend to that all things will be well.

Restfull peace to you tonight,
Mark56:hug:z

....(((Tara)))....
 

Oh sweet TARA! :(
I can't even come up with words right now.......

Thank God Mark has his witts to voice what I want to say as well....

I'm speechless dear one. Speechless.

I will pray.....and shed a tear :(

BUT also will have FAITH that you will pull through all of this and am very grateful that you've got doctors all over these issues.....

Please know how much we care....
I would have sent you a teddy bear if I'd known you were hospitalized....

Big HUGGS
Rae
:hug::grouphug::hug:

ohhh my dear how terrible. Gentle, gentle hugs:grouphug::grouphug::grouphug:

Tara, good wishes and many prayers are out to you. Keep your hopes up and focus on your beautiful wedding. Lisa

Hi Tara
 

Just continuing to send you prayers and hopes for gentle and complete healing.:circlelove::Heart::Heart:

Mark56:hug:z

Tara sorry to hear that you have been so unwell. My goodness you are really going through the mill. I too have included you in my prayers. Was at Mass this morning and I prayed for all the lovely people here on NT....

I hope you will start to feel much better very soon. I hope GIGI is looking after you too :D


Take care

Jackie :)

That is SO nice Jackiey
 

Thank you for/from all of us!
Mark56:grouphug:

You are all so sweet and kind!
 

Thank you everyone for your kind words and prayers. I am still in a lot of pain and I am experience horrible spasms that shake my body every time I go to the bathroom :( I am not eating very much or drinking very much cause it makes my pain worse. I am also very tired (exhausted) and just feel bad all over. I am also really thinking that the treatment did not help instead it is making things worse....too bad there is no stimulator for IC patients lol I am feeling so down right now and yeah I am excited about the wedding but its been a rough few weeks :( Jerry has been taking good care of Gigi for me because when I first got out of the hospital I was at my moms a couple days it even hurts when I walk around and as soon as I got home from hospital I had to take a test in my psychology test so that stressful my other professors are giving me extensions which is good. This all I can write right now I will be back when I can I need to try to get some sleep so take care yourselves :hug:

Hugz Tara
 

HUGZ:hug::grouphug:
Mark56

Pain is getting worse again!
 

I am so sick of this and tired and depressed right now. Instead of the pain getting better it is actually getting worse :Bawling:and I really wish I could stop eating, drinking, and going to bathroom! All of those things make everything worse of course even though it already is worse :( I feel bad coming here because I know this is a stim/pain pump forum so I am trying not to be a bother but I got in trouble at the IC website because I told my story and people got mad! I was only sharing the truth because I don't want other people to go through what happened to me but people get mad if you say negative things about a doc even when you don't mention names or anything. This is the reason I usually end up leaving forums/websites for my health problems because I want to be honest with my experiences both bad and good. Anyway, that is why I appreciate you all so much because you have all been very supportive through my journey and after wards. I have to get three chapters of homework done by Friday and I feel like I am going to pass out, in fact just walking around hurts me inside which is probably where they cauterized things (bladder surgery). I am thankful for my stim working right and I am even having my stim guy and his family at our wedding! He is really like part of our family because he and I have talked about everything and he was the one that fought for me to get the paddle leads and even the new pain doctor! The other reason I am such a mess is lack of hormones and this has made me way more depressed and crying a lot so I am not very fun to be around at this moment...but I know this will pass. I do have faith that the hormones will get fixed and that hopefully my IC gets better again without having to use catheters again and I will be heading down that aisle this fall feeling like a whole new woman! Sorry for these crazy ramblings, you all are so amazing and I appreciate you listening to me. I will try to catch up on how everyone's stim is doing...but its going to have to wait til after this bladder nightmare is over:eek:! Take care and you are all in my thoughts and prayers!

Please continue giving us these updates!!
 

Tara, we care SO MUCH for you and EVERY aspect of your life!
You've become a big part of our little forum here.

I am VERY CONCERNED about You!!

PLEASE don't allow yourself to get dehydrated Tara!! PLease!!
This happened to one of my sons several years back and he was hospitalized and it was a VERY SCARY thing to deal with!
I know you dread taking in liquids because you are in pain.....but PLEASE keep using that catheter or whatever it takes to stay properly hydrated ok?
Promise?! :hug:
You'll end up suffering needless setbacks if your body isn't getting enuf fluids.
I know you know this already, but it's always good to hear it from a friend who truly cares..... WE ALL CARE ABOUT YOU!!!

I can't understand why those other forums chewed you out! Evidentally they aren't 'support' forums!! To heck with them! You need SUPPORT!
You will never 'wear out your welcome' here, my dear...you know that! :hug:

It's thoughtful of you to come here and give us these updates because we know you've got so much going on and if we DON'T hear from you, then we can't help but worry. So, thank you. Thank you for hanging in there and fighting this thru! You've got great reward waiting for you - but I know you probably don't feel like it's going to happen. You are being bombarded.
It's so hard to comprehend why someone so sweet has to suffer like this.

Big hats off to Jerry and the rest of your family for their support.

Please feel free to come here any time to vent! You are part of this 'family'....and if you ever feel inclined, we can even put out prayers for you on the 'Spiritual Sanctuary' Forum here as well. We are blessed to have some pretty powerful 'Prayer Warriors' here at NT.
The door is always open. And if you prefer to just keep it here with our little SCS family, then so be it! You can also PM any of us at any time. I've had my share of 'female issues'....I'd be more than happy to talk about anything if you ever feel the need ok? It's important to talk things out and try to make sense of things that just DON'T make sense!

I am so very concerned for you.....
PrayingCaring Always
Rae
:hug::grouphug::hug:

Rae is on top of it Tara
 

Somehow you do need to preserve hydration, even with the pain the healing bladder is producing.

I have you in my prayers,
CARING,
Mark56:hug:z

Talked to the nurse
 

Thank you :hug:Rae and :hug:Mark and everyone else who cares so much about me:grouphug: :) I talked to the nurse yesterday and it did not go well. They basically said there is nothing they can do for me, the meds should have worked and if I need better pain management I should go to the ER! They also made sure to remind me to drink water, watch my diet for IC flares, and other things that I know and have been doing. Part of me just wanted to know if it was normal to be in this amount of pain since that surgery but of course they could not even answer that. I was in a very bad mood after all that and cried most the day and was frustrated and angry! I do have an appointment on Monday because we have to find out my biopsy results and I am going to tell the doctor about everything. I am thinking about switching doctors to especially after they put me through more torture by the irrigation catheters last time when they should of just straight put me in the hospital :( I learned before about how important it is to change doctors when I had to change my pain doctor in order to get my stim fixed but it still is not a fun process. I am sorry for being so grouchy and negative lately but its been really rough because the pain is so bad :( and the doctors are acting like it is normal or it is my fault. I have to go but will definitely let you know about Monday's results. I have to get my homework done and I have a little puppy at my feet that wants my attention ;) Take care and have a good weekend!