ic may be back

[vicky Gordon]

Hiya guys

Havent been on here for a while as a lot has been happening.
Had my bladder removed in sept 05 and all was great. Got pregnant a few months after and gave birth to a beutifull baby boy in Jan this year. Things were still great no pain, urgeny infections nothing until a couple of months ago.

The pain is not as constant as it was before the op but it's the same pain.
I get no urgency but i do get a lot of green gunk from my mitro and my uretha, i am starting to leak down there also and have to wear a pad constantly. Trying not to go on pain meds at this stage as enjoying life without them but i know i will eventually have to make an appointment with my GP soon to get them.
I have tried calling my Uro doc but will have to wait a good few months to see him.
I am very scared an hoping that IC has not returned even though i know it will sometime but surely not his soon..............
I know we have alked about thisbefore but can stress be a part in it as my father in law (who i treat as my father as mine treats me like crap) has just been diagnosed with bowel cancer and is in-operable. also can it be the difficult labour that has brought it on.

If someone can give me a little advice that would be much appreicated.

Thanks

Vicky & Ethan
XX

[ICNDonna]

If this is the first time you have had "green gunk" you might want to be checked to be sure you don't have an infection working. Hopefully others will respond who know more about bladder removal.

Donna

[vm]

That was my thought, too. Maybe if you mention the green gunk to the uro you would be able to get an earlier appointment? At the least see your GP or go to an urgent care to make sure you don't have an infection. :kissing:

[kari1980]

I'm confused, if you had your bladder removed, how does the IC come back? I'm so naive sometimes, just trying to understand, thanks.
I wouldn't definitely get checked though if you having green discharge still. Hope your feeling better.

Kari

[vicky Gordon]

hiya
Yes IC can come back at any time. It's something to do with the Urine that makes the bladder wall diseased hense why we cannot eat/drink citrus type foods. I had another bladder re-created out of my intestines which i emoty through a mitro hole in my abdomen.

Wen to the GP ref the green gunp and he is no help what so ever.he tested for infection which came back clear. He has no idea what to do

Thanks

[kari1980]

Geez, you can have your bladder removed and then still have IC return? That seems so unfair.....I'm sorry your Dr. didn't help you, maybe you should go to another Dr. that can? Hope you get better soon....

Kari

[ICNDonna]

Even though it's unusual, the IC can come back after bladder removal.

Donna

[kari1980]

But if you have your bladder removed, then where is the IC coming back to? I feel really stupid, but I'm just puzzled.

Kari

[Judith56]

Kari, there is so much we still dont know about IC, that I dont know how to answer your question. We do know that many people with IC also have other auto-immune type illnesses, so maybe it is somehow all connected? While I no longer have my bladder, it was taken out over 21 years ago, I still ahve some symptoms with my internal pouch. I found out last summer that I have IBS in my internal pouch which again is related to the whole class of illnesses that tend to go along with IC. So while I don't have IC in my pouch I do have a similar type of problem in my pouch which is made from my bowel.
Vicky, like the others I was thinking that you may have some type of infection, just out of curiosty did they culture your urethra? Since you still have the urethra, you may want to ask the uro when you see him if it is possible to still have IC in the urethra. If so maybe if they remove it then your symptoms will get better? A big congratulations of the birth of your son! Judith

[kari1980]

Thanks Judith for trying to explain that for me. I guess I just assumed that IC is a bladder condition that if you didn't have your bladder, Voila' no more IC!! Guess I was wrong. This disease is so complicated as you say, I guess nothing is for certain. It's sad to think that you could have your bladder removed and then still have problems. I'm sorry your having the problems your having, it's really sad....Well thanks again for enlightening me, I'm still trying to figure it all out.

Kari

[mum43]

Hi ya hunny, I have been very unwell and have not been on here or COB for a while, how is the little guy?
I am sorry you are having probs at the moment and hope that your uro can sort them out for you soon.
I am 3+ weeks away from having the rest of my bladder removed and a neobladder.
I am having my ureter removed because of pain and leakage etc.
My bladder is in excruitiating pain right now(bet I spelt that wrong), and I have a hernia on my mitrofanoff which is to be removed in surgery.
I have tried emailing you but can't send it for some reason.
Give Ethan a kiss from me won't you and look after yourself ok.
love Jill.xxx:bunny:

[DebbieD]

Hi! I had a total Bladder removal at First and they did leave my Ureatha in. Well a Year Latter I had to have my ureatha removed cause I was Passing Green Stuff. On me at the end of my Ureatha I was trying to form another Bladder. It was the size of a Golf Ball. At First I had to get Cathed to Drained the geen stuff out. It had a Foul Smell. The they went back in and took out my Ureatha and that stopped the Green stuff.
If you need to know More Let me Know.

I hope this Helps. It did happen to me. You do need to see the Uro again and tell heim. Please do not Put it off Okay

Hugs
DebbieD

[DebbieD]

You can Still have IC ecen if your Bladder is removed. I still have it. I had my Bladder removed 23 years ago. Then in 2004 I had my Kidney removed cause IC attacked my Kidney. Believe me you still have the IC in the Urinary tract. I have a Great DR. for 35 years now. We have Battled this for years and Years.

I hope that you Feel Better. Now Remember That IC affects different People in Different ways Okay.But I would Talk to your Dr amd Please Let him/her know what is going on Okay.

DebbieD

[Trishann]

Vicky we haven't heard from you lately and I hope the no news is good news. How is your wonderful baby boy? I just hope all is well and hope you the best.

Take care, Trishann

[vicky Gordon]

Hiya all,

Thanks very much for the replies. it has helped.
I have been up and down the last few days, not just me but little ones teeth are annoying him.

Debbie- can you go into detail about the uretha removal. Just so i am prepared if the time comes for me to have it removed also. I wont be scared off. I also have green stuff coming out down there and also my mitro hole. it is deff not an infection as tests came back all clear.
Have gone back on the ic diet now. It is much harder with a little one. Sometimes i dont have thne time to think about what i'm eating as i have to stuff it so fast. he he he

Jill- I will e-mail you soon and hope everything goes ok with this seccond op.

Thanks again

Vicky
X

[Kara29]

I also had my bladder removed first and then a few years later, my urethra was removed. I still have some issues that feel like having to pee but they are related to pudendal nerve entrapment and vestibulitis. I am having a vestibulectomy in a few months. Pudendal Nerve Decompression Surgery to follow if I still have trouble. For now I am just hanging in here and trying hard to take care of my self. I take Lyrica to ease some of this pain and Ambien to sleep at night.

I can explain the urethrectomy from my own experience. They basically remove the entire urethra and the space where the urethra was and close it off. The urine will get diverted. I'm not sure in your case where that would be. It is done under general anesthesia. Your Surgeon will go into more technical details of how your exact surgery would be.

About the geen stuff. Do you have a Urologist that can check that out for you?

Good to hear from you.

Kara

[vicky Gordon]

Thanks Kara,

I have a mitrofinoff do the diversion was not a problem. Just wanted to know if was a bad op or just a simple quickie.
As for the green stuff, it started when i got pregnant and i put it down to that but since giving birth in Jan this year it hasnt stopped.
My Urologist is 200 miles away. I have an appointment in April next year as i was doing so well i went on to have yearly app's. Tying to get through thesecretarys here is pathetic. i will call them again in a few weeks to see what they are doing about bringing my app forward to atleast sometime this year.
It's not urgent as there are people out there who need it more. I would just like them to say yes we can fit you in such and such a date..........it's not much to ask. he he he.

do you still suffer quite badly Kara???

[Kara29]

Vicky,

I don't suffer with IC anymore. The PNE and VV do give me some REALLY BAD days. I also have some good days where the pain is mininmal. I live for the better days and take the bad days as slowly as I can with much rest.

The Urethrectomy is a big operation.

If the green stuff is an infection, a Doctor should see you immedately so that it doesn't turn into something worse or go into your blood stream.

I'll be thinking of you. I hope you enjoy your little one.

Kara

[DebbieD]

I just hopr that I do not step on anyones toes or get affened.

Just Like when they Made my first ostomy they Cut me from Belly Button down to Plevic area. Remade a New Loop-stoma. Then went through the Vigna and cut some things in there. I aslo had a Vigina Pack in that stayed in for 4 days.. I was stapled also, then I had 2 JPs for Drainage. I aslo had a Nasal tube and a Catherin my stoma. The second Surgery was harder than the First. Cause they have already used alot of intestines on me already.I was in the Hospital for 12 days.

But at the end of my Ureatha I was trying to grow another Bladder. My Dr. said it was wierd. It was the Size of a Golf Ball. But I did hfeel like I had to Pee and I would sit on the Toilet and strained then that is when the Green fouly smell stuff would come Out. I also was seeing a Local uro at the time and Every week I would have to go to his Office for him to give my 100 of Demerol and then Use a Baby infant feeding to to cath me with to drain the Green stuff. We did that for 6 months before I went to have the Ureatha removed. But Usually after the Surgery you do have a packing inserted down there. But after that no more Green stuff or Pressure to Pee.

I hope that this helps.Let me know if you need anything else okay.But Please let the Uro know.

Hugs
DebbieD

[marsi4]

I just want to add that whatever is causing us to have ic, inflammation and irritation in our bladder, may continue to cause inflammation and irritation in the new constructed pouch which is made from our bowels. I am considering bladder removal and are in agonizing pain that I can't control with pain meds anymore. I fear having the surgery and suffering still yet during the long recovery period and praying I will be better after this ordeal. But sadly, it doesn't seem to end there, this cruel disease can strike back and attack and affect the new pouch again as we are seeing with some ic patients. I hate this dreadful disease and I wish that it wasn't so stubborn and difficult to eradicate. Vicky, my heart goes out to you. I admire your courage and strength and pray that it's not ic that is causing you the pain, but some other treatable cause. Try and get an earlier appt if possible and stress how urgent it is for you to see your doctor and how stressed you are worried and afraid. It makes me upset how some doctors think it's okay to make patients wait months to be examined when they are so distressed and are having serious concerns and problems with their health and surgery. We deserve better care than what we are given. I truly hope you get better soon and go back to feeling well again. Please keep us informed and I'm so sorry you are going through this very difficult period once again. My thoughts and prayers are with you. Congratulations on the birth of your son. You are an inspiration and you have shown us that many things are still possible even when we think it's impossible.

Marsi4:pray:

[mum43]

I have a horrible discharge from my urethra too, luckily it's all coming out soon.
I was tested yesterday for infection and the result was clear, but the IC symptoms are very much still here, I have been up running to the bathroom all night and cathing 30+ times a day because my bladder is so over active since I had the Clam Cystoplasty.
I will be glad when this is all over and hoping that this time the op will be a success.

Vicky hunny, look forward to your email.xxxx(((hugs)))
Take care everyone xxxxx

[lbcharel]

Hi wow I wanted me Dr to take my Bladder out but he wont didnt know the IC would come back I thought all pain would go,I have a bad cause of it so I have the dmso treatments every 3 months but have had a bad flare up for a week take care hope you all get feeling better is so hard cry get down but it does help by talking to you all thanks so much keeps me going

[vicky Gordon]

Hiya,

Just to let you all know that i have had my earlier appointment through. i will thankfully see my uro on 7th August which i am very happy with. much better than April next year.
He he he
Will let you know how i get on

Take care

Vicky
XX

[mum43]

Hi Viky,
Glad you got your app brought forward.
Talk soon love Jill
:bunny: xxx