Help what do I do?

[bellaluna05]

I went for my last second opinion and all it did was scare me and confuse me terribly. This Doctor, Dr. Boyd (or Boid) is the head of urology at USC and he claims to be the best in the world. Have any of you heard of him? He did seem to know a lot about IC, he understood it. I thought I already had the best doctor in the world, Dr, Raz, many of you have heard of him. I heard from every body else that he treated and worked with that he is the best in the world, 3 other people that I have seen on this board, are seeing him, so this makes me trust him. Dr.Boyd, told me himself that he was the best in the world, a little conceeded huh?
Anyway Dr. Boyd agreed that removal of my bladder and urethra is my only option at this point, but he thinks that I should wear the bag on the outside, not have the pouch on the inside. He is actually very against me or any IC patient wearing the pouch on the inside, he said I would greatly regret it, I would get IC in the pouch and have a lot of complications. Dr. Raz never even mentioned a bag on the outside, he just told me what he was going to do and that is a pouch made from my intestine inside my body, that I would cath through a stoma every 6 hours. He never said anything about the compliacations, and possible reoccurance of IC. He said that my frequency and food alergys would definitly be gone and there was an 80% chance that the pain would be gone too. He swore that there was no way I could get worse that I am now, but that is not the picture that Dr. Boyd painted. So What do I do? I just turned 30 I really don't want to wear a bag,I am too young for that, I want to have a life, get married for the first time ect, I think a bag would really hold me back, but I don't want all the pain and risks that come along with the pouch on the inside. I am so scared! I was just starting to have some hope about the surgery and now it is gone. Please help me, which way is better? Less complications, less pain? I really need your help please tell me what you know! I just want my life back I just want to be rid of this unbearable pain. I am suffering so badly every second, it never lets up, I only leave my apartment for doctor appointments because of the pain. I cry till 6 or 7 am then maybe get an hour of sleep, I have to get some relief, I already feel like I am going insane. I always fall into "that never happens catagory, I've never seen anyone get worse from this before" This is what scares me so much. I am afraid that if there is the slightest possiblitiy that I could get even worse, I will. I am so terrified!!!! What should I do? Please help! Thank YOu!!!!
Lara

[ICNDonna]

Hopefully you'll hear soon from some who have had both kinds of surgery.

I know you are facing a difficult decision, but you're the only one who can make that decision. I can tell you what I would do if I had to decide, but that won't necessarily be what you want to do.

First of all, I'm not faced with bladder removal, but if I were, my option would be the internal pouch, even knowing that it's possible that somewhere down the line, I might have to have it removed and replaced with the external bag --- because there's also the distinct possibility that the internal pouch would be totally successful.

I absolutely don't envy you being faced with the surgery, and along with that, having to decide which surgery.

Sending encouraging hugs,
Donna

[Imustpee]

Dr Raz is removing my bladder and urethra Dec 23rd...I trust him totally....after wearing a foley and a bag for the last 2 months I can say that the internal bag is going to be great...there is a constant odor that I fight with everyday...there is alot of cleaning, hygiene matters, and it's just a pain in the butt..as the bag fills with urine it bulges under your clothes and it make a sloshing noise if it gets more than half full. I have talked with many people that have had their bladder removed and they all say it was the best thing they ever did,,,,,

[DebbieD]

Hello. I have worn a Bag on the Outside that Drains Urine it for 21 Years. There is no Odor.I was in Ostomy Support Group in TN, and That Over 50 Percent had a urstomy. There is No odor. I swim with my Bag on the Outside. I Go to Nascar Races and Hike. My Bag Has Never Once Poped Off. There has Been a Couple of Leaks like where the Bag Miight have a Hole in it. But if that Happens I always Carry around Undies and Suppiles with Me. I just go in the Bathroom and Change. Life Goes on. You will adjust. I promise. The DR. Must have a Good Reason Why he wants you to wear the Bag on the Outside.

I wear Shorts in the Summer.

I am Praying for you you wil Be okay. You can do anything you want to do with a postive attudide.

Hugs :grouphug:
DebbieD

[DebbieD]

. I had my UrostomyLara you will Okay. I had my Urostomy 2 Months before I got married. My Husband has Been By My side foe 21 years now. Compared to what I use to go through I will wear the Bag. I use the Surfit System. It is a 2 Piece applaince. There is a wafer that goes on the then the Bag. It Snaps on Like a Tubberware seal. Now wehn They want a Clean Catch urine. They will Cath my loop to get out the Urine. Then he just snaps the bag Bag On.

Like I said Be fore. there is No smell. I change my Bag and wafer Every day. I hook up to a Jug a Night thatGoes to the foot of my Bed.

Larry And i still have sex. You can get a cover to Go over the bag when you are Huging each other. :bow:

Each Person is different. But you will be Fine.
Any other Question on the Urine on the Outside bag I will help you the Beat I can. :grouphug:

DebbieD

[Judith56]

Lara, I have had both. My experience has been that doctors who tend to push for the standard urostomy- where you wear an external pouch do not do the internal tyupe or if they do, have not had great success. To be honest, I had more trouble with the external pouch than with my internal one! I had my surgery done when I was 30, I am married and raised two sons. I could not have done all that I did while raising them if I had kept my bladder. I was room parent, have worked part time ever since they were very little, traveled to many places, eaten what ever I feel like, etc. I also have never heard of Dr. Boyd, he does sound conceited and I would be leary of any surgeon who touts themselves as being the best! Please ask me as many questions as you need to! Hugs, Judith

[Imustpee]

Ahhhhhhh...went to my regular uro today for pre surgery tests and placement of another foley...well, the smell I have had is from an infection...oh joy...another round of antibiotics for me... :rolleyes:

[carly]

I had my surgery Nov. 1. I have an external bag. There is NO odor. I initially thought I was going to have the internal bag, but my Dr. didn't feel like he had enough experience doing it. He also said there are more complications such as malabsorption with the internal bag. The bag is not bulging. It is a huge adjustment, but this is a major surgery no matter what you do (internal vs. external bag.) I don't want to see this become a battle between internal vs. external. I joined the urostomy group at Yahoo groups, and they have been a hugh support to me. It is a tough decision. I just keep telling myself, thank God I didn't have my bladder removed for cancer. Did you know Bob Hope had a colostomy for 50 years? My stoma nurse told me that before surgery. I never would have guessed that with his busy, incredible life that he had an external bag.

[carly]

I just sent Judith a private message, and realized I need to tell the whole story. I am having problems with sores under my wafer. I am going to the wound clinic next week. I think this is a fairly common problem. My urologist had to cut through a hernia repair that I had in Jan. and I think I have a seroma around the hernia. Tomorrow I am seeing the surgeon who did the hernia repair, and if I am right, he will drain fluid from my stomach. My urologist told me he would have a general surgeon there to deal with the hernia, but told me afterward that he talked to some surgeons and they told him what to do. I don't think he would know anything about draining the fluid from around the hernia. I also have a lump next to my stoma. I am trying to make the best of this situation. My urologist didn't tell me until the night before surgery that he didn't feel comfortable doing the internal pouch, so I didn't feel emotionally prepared to wake up with an external bag. As I said though, many people live with it, and have wonderful lives. Good luck with whatever your decide. Part of me wanted to cancel the whole thing after he called me at 7 the night before surgery. I still don't know if I did the right thing. I was so sick the night before from the antibiodics you have to take on an empty stomach that I coulnd't think clearly. I really thought I wouldn't survive the surgery because of my lungs. They did collapse after surgery, but I survived. I had to put my faith in God, and feel guilty now about doubting my decision. I know how much pain you are in, and I can say the pain is much better now. Pray, pray and pray to make the right choice!

[Imustpee]

Hi Carly! Nice to see you.... :)

[Kara29]

Lara,

Please read my patient story.

http://www.ic-network.com/patientstories/kara.html

I am 29 and do NOT want a bag. I haven't had my babies yet. There seems to be a myth about IC coming back into the pouch. If you have a GREAT SURGEON whom know what they are doing, then your IC will NOT return. Please know that you should choose the best doc you can and you should choose in a doc that believes in what he does. If the doc does not believe in us we can believe in him or ourselves. If it was my choice at your age, I would choose the pouch internally. This is ony my personal opinion. I went to 6 docs before I had my bladder out and they all told me not to do it. They were all wrong. It was the best thing I ever did for myself. I do have some complications but NO PAIN and the complications are nothing like living with IC 24/7. Find the best surgeon though or else you will end up with trouble.

Best of Luck in what you choose!

HUGS,


Kara :grouphug:

[Kara29]

Carly,

I am not against the bag for others just for myself. It's a psychological thing for me. I hope your bag gives you much freedom and your life back. I hope you will be on your feet soon and the sores go away so you can start to live. I originally wanted the indiana pouch but my doc did not want to do that. He wanted me to be able to use my urethra so he made the neobladder. Sometimes we have to go with what the docs want for us. I hope it works out to be the right move for you. Keep on pushing on. You are a fighter. Look how far you have come thus far. You did it!!!!

Please know that you are in my heart and prayers!


Kara :angel:

[bellaluna05]

Thank you all so much! After all of that I went to see Dr. Raz today with my Dad who is visiting from Texas. Anyway, Dr. Raz said he wouldn't want to do a external bag on me, that I am too young for that, he definitly didn't recomend it! He said that in his experience it is very rare for the IC to come back and infection is rare too. I have to cath myself now anyway because of my augmented bladder, and I already get infections from that so what is the difference. I am so glad that Dr. Raz isn't behind the external bag, because no offense to those of you that have it, I just wouldn't want to wear a bag although it would be nice not to have to cath but I just couldn't handle it mentally. I would if I had too because it would be heaven compared to IC, but Dr. Raz is very positive about the Indiana Pouch he is going to do for me. He said he can't wait for me to start to be able to have sex again so I can come back in and show him my big pregnat belly! He is a really sweet man, I should just try harder to trust him! He is supposed to be the best so i hear!
On another note, I got two emails from other women on this site that both told me they thought that I might have a thyroid disease that sometimes doesn't show up in blood tests. This disease is called Hypothroidism and it can cause all of the same symptoms as IC, and fibro, even constipation, all kinds of stuff. We should all be tested for this. I have been praying so hard that something would happen so that I wouldn't have to have surgery and then I got two emails about this thyroid disease in the same night! Seems like a sign. So we should all get tested, one of the women siad you have to have the free T-3 and free T-4 tests these are more reliable and doctors don't do them unless you ask because they are expensive. Stupid doctors! Maybe this is it for all of us! Even if you have already had your bladders removed I think I have seen that you all still have other health problems, maybe this will help those and we could all be complete again. If any of you find out that you have this the medicine to ask for is Armour thyroid, it is not synthetic like the other prescriptions for it and I think it is supposed to work better. I guess there are no side effects and that over time it can repair all the nerve damage the disease caused. I am probably getting my hopes up to much, but it is worth a shot!
I am so glad that I found this site, I love all of you and you are all in my prayers!
Lara

[DebbieD]

I had a friend that Had Alot of Things wrong with her. But anyway, She Has so many Kidney stones that it would Fill up every state. :bonk:

But they Removed that part of her Thriod Glad to Hope that it would stop TheStones from Forming. Well It did not work on her. Bless her heart she Has at least one a Month.

Hugs
DebbieD

[ICNDonna]

I have never read any research study that indicates that low thyroid causes IC or contributes to IC. A thyroid screen is not part of the diagnostic process for IC nor is thyroid therapy considered a treatment for IC.

If you feel you may have a thyroid problem, then by all means ask your doctor for testing. I have been screened and I do not have a problem with my thyroid. It is absolutely possible for someone with IC to have either hyper or hypothyroidism, but that doesn't necessarily mean the two are connected.

Sending warm hugs,
Donna

[Imustpee]

Hi Lara...I see Dr Raz too! I will be having my bladder and urethra removed on Dec 23rd....I trust Dr Raz completely..he is the best...He never mentioned the external bag to me either,,,he said the internal bag made from lower intestines is the way to go..I will cath every 4 - 6 hours!!!!I have a foley in now but I was peeing 40 times a day...I can't leave the house and I had to quit my job in May...this is going to be a whole new life! :)

[Dianne]

I followed this lead too and got tested. Totally normal T3 and T4.

[bellaluna05]

Even though your tests came back normal did you try the medicine anyway? These women that I have spoken to said their tests came back normal as well and did not know for sure until they tried the medicine, and the medicine worked. One said it really helped her bladder another said it only helped her bladder a little but it got rid of a lot of other really bad symptoms.
I am not saying that there is a definite connection with thyroid and IC but I did some internet searches and I have found a lot of IC patients who have thyroid diseases. This should be reconized, just like how Fibro, and CFS are connected to IC a lot.
I am no longer thinking this will save me from surgery, but I have a lot of other health issues that will not be helped by surgery and could hopefully be taken care of by this whole thyroid thing. I am having all my blood tests done on Monday, please wish me luck! Thank you!
Lara

[ICNDonna]

I would never take a thyroid medication without first having proof that it is needed. Most physicians will not order them without a diagnosis. (There was a physician in our city who lost his license for, among other things, prescribing thyroid medications without adequate testing and/or diagnosis.)

Donna

[Kara29]

Lara,

I hope your testing finds you what you need to feel better. Work with your doctor on this issue, maybe the two of you can work something out after your tests come back. This thyriod issue seems controversial but then again when I wanted to have my bladder removed 4 years ago, it was very controversial but I did it anyway.

When we are facing bladder removal we will look for last resort things to try and fix the bladder. It's natural. When I was about to have my bladder taken out, my mom made me go to a wholisitc healer for acupunture and some other funky stuff......she was just exausting every last thing so that I would not have to have the bladder removed.

I think it's good to try eveything you and your doc can think of even if some people don't agree with it. It's up to the two of you to figure out what is best to try and not to try. That is what your doc is there for.

Sending Healing Thoughts Your Way!

I will be here no matter what you decide to do!

HUGS,

:grouphug: Kara

[bellaluna05]

Thank you so much Kara I really appreciate that!
For some strange reason this topic has seemed to ruffle some feathers, I don't understand why. Some very nice people shared some valuable info with me and I thought everyone would appreciate the same info. Oh well you can't please everyone.
I don't think it will save me from surgery, but like I said before I have a lot of other problems that the surgery won't help, so I am very grateful for the information. Normally I would never try medication if I didn't know for sure I had the condition but, over the years I have learned that medical tests, even blood test are not always accurate. I have even been told before by doctors after a cystoscopy that I didn't have IC and now my bladder and urethra have to be removed because of IC.I have also missed out on a lot of more accurate tests for various things because they were more expensive and my insurance wouldn't cover them, the cheeper tests arent as thourough and so I was never treated for certain things. Now that I am this severe I will really try ANYTHING. I have even tried all those alternative treatments you MOM had you try and more. I really have absolutely Nothing to loose at this point, nothing!
Thank you so much for your help and support!
Lara

[Kara29]

Lara,

You are always welcome!!!! Keep on pushing on!

Kara :grouphug: