Bladder removal/Stoma

[Jim Beech]

After many years of suffering I had my bladder removed last December and a stoma fitted.Since then I have a new life. I have no pain or anxiety and get a good nights sleep every night.I can also travel where I want and when I want.I got used to the stoma in no time at all.I can honestly say that I am completely cured.I might add that the whole process was absolutely painless. They kept me on an epidural for several days.
I did have a slight complication in that they discovered I also had bladder cancer and that involved another lesser operation in April. However, there were no further complications and I am completely cured.
I thought I would post this message to reassure any fellow sufferers who are agonising over whether to have the same job done.

[karhopp]

I also had my bladder removed. Mine was done on March 7th. Although I had a rough surgery and 2 months of complications following the surgery, I can now say that I am IC free, doing fine, and feeling good. I can sleep all night, go places, shop, ride long distances in the car without stopping, and eat and drink anything I want to. My stoma is easy to take care of. I change my pouch once a week. Just pull off old one, wash, dry, and slap on a new one. My skin is not irritated or sore and I have only leaked twice. Both times it was a pinhole in the pouch. I suspect both times was caused my one of my cats on my lap as they all still have their claws. I've been getting in the pool, riding my bike, and I work in a factory. My only restriction is that I can't lift, pull, or push anything over 25 lbs. As far as the phantom bladder goes, I have that occasionally. Sometimes I feel like I need to go pee. It's temporary and doesn't last long. This is far better than that miserable IC bladder. I don't miss my bladder at all. Good riddance to it. If anyone wants to contact me about anything at all, my email is karhopp@yahoo.com. Love, Karla

[jaime15]

What is a stoma?

Jaime

[Don]

The stoma is where they bring the hole thru your stomach with part of your small intestines. The bag or called appliance attaches to the stoma. hope this makes sence.

[whiteshoe]

I'm a 60 yr old woman with IC 6 yrs. Pain is so severe that bladder removal was recommended 5 yrs ago, but i have not done it yet. Appreciated reading of your success

[whiteshoe]

I'm a 60 yr old woman with IC 6 yrs. Pain is so severe that bladder removal was recommended 5 yrs ago, but i have not done it yet. Appreciated reading of your success

[jodiii]

Hi Everyone its been a while. I have been very ill and have not have had a chance to visit the sight. thank you for the posts on the stomas I am going to be having my bladder out sept 16th. I am a little scared of the recovery so your note is very helpful. I am not scared to have the bladder out. I am just more worried of the recovery. Thanks again for the post.
Jodi tongue.gif

[Jim Beech]

Although I had no unusual post-operative problems I was told by the consultant that it would take 12 weeks for a full recovery. He also told me that I should not drive for 6 weeks. The time element was important for me as I have been a full time carer since my wife had a major stroke 9 years ago. In the event I felt fine within a month although I had to avoid heavy lifting.I didn't drive for the full 6 weeks, although I felt ok Also I was fortunate enough to have sisters who took turns to stay with us until I was strong enough to take care of my wife on my own.
I am 68 years old and have always been fit, apart from the IC, so age alone doesn't necessararily seem relevant to recovery. I believe, and the consultant concurred, that attitude is very important.What I did, mentally, was to tell myself that I would be having an uncomfortable couple of months and keep my sights ahead of that.
I concentratyed on how wonderful the rest of my life was going to be.
The new life started in May with a trip to Baltimore for a couple of weeks to stay with our daughter and we several other holidays booked both here in the UK and abroad.
I hope I haven't gone on too long but I am anxious to reassure fellow sufferers. Of course I can only speak from personal experience but, in my opinion, anything had to be better than what I had before

[needabrk22]

Hello! Im new to the site so Im trying to figure out how this all works. My question is I dont understand the difference between a stoma and a neobladder. Do you have to wear a bag w both of these or do you cath w one and not the other??? Im lost. If anyone can explain. Thanks Christy

[karhopp]

The neo bladder is inside of you and you have to cath it to empty it. You don't have a stoma for that procedure. If you choose to have the ileal conduit, the external bag, then you get a stoma and you put the bag over it to collect urine. The stoma is made from intestine and they bring it out through your stomach. The ureters are attached to the conduit. The intestine they use serves as a conduit for the ureters. Hope that somewhat explains it. Love, Karla

[icnmgrjill]

Jim,

Thank you so much for your encouraging post. I'm sure that everyone is greatful to hear your story and that Kara, in particular, appreciates your success story!

Jill smile.gif

[DebbieD]

Good to see you have no Problems. I had my Bladder removed 18 years ago. I Still Have the IC in my Urine. I aslo have had 3 revisions done. Cause the IC just ate through the Loop. If this loop goes bad, we do not know what will happen. The Last revisions was in December 1999, they used my Transverse colon. I still get alot of kidney infections, bad ones. But are are alot of good days also. I change my wafer every 3 days. Can not get them to last no longer.

DebbieD

[Jim Beech]

Hello Debbie, I read your note with great interest and, I must admit, some puzzlement. I was not aware that you could get IC other than in the bladder. I thought it was a deterioration of the bladder wall that caused the problem. If you have it in the urine but have no bladder where do you get the pain? Also I would be very interested to know what the three revisions were and also what you mean when you say the IC ate through the loop. You also mention a wafer which sounds like nothing I have had or heard of.
I am very sorry to hear that you have had such suffering even after surgery. I suppose I was very fortunate to make such a complete recovery.I hope you don't mind me asking these questions but your case sounds very different from any others I've read and I'm sure other people would like to hear about it.
All my best wishes for a pain free future, Jim.

[DebbieD]

Hello Jim! Yes You can Still have the IC in the Urine without a Bladder. 80% of ostomy patients keep some infection all the Time. The Pain is in the Kidney! The revisions I talk about are making a urostomy 3 times out of a segment of Bowel each time. The Loop is the ileal-conduit. The stoma comes out. That is the Loop. The Last time they had to remake a new stoma and loop was in 1999. I had a Blockage at the begininging og the Loop! Stoma on the outside and you put a cathear in the loop sometimes to get Urine out. It was blocked. Urine was backing up into the Kidneys. It could not flow out.

Does any of this make sence? So they have to remake me a new uroatomy 3 times becacuse og Blockages in the Urters. or ileo-conduit. They use intestines to make. So I do not have much intestines left so the last time they took some of my Transverse Colon and made me a another urostomy.

All Surgeries have Been done at Duke University in Durham , North Carolina. I have a Great Doctor There.Yes you can still have IC even without a Bladder. It is a "Germ" in my urine that ate through my old loops.

I hope I helped you out. any other Questions just let me know!!
Or e-mail me

ldurham@comcast.net

DebbieD

[Judith]

Debbie, I wonder if some of your kidney pain is related to reflux? When you have an ileal conduit, they way it is constructed there is always reflux back into the kidneys. I know when I had my conduit I used to get kidney pain due to reflux. I now have a continent pouch which I catheterize (it's made out transverse colon) and the only time I now get the kidney pains is when I have an infection. Continent pouches are made with anti-reflux valves so there is no reflux. I am sorry you have not had a very good outcome even with all your surgeries. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Jim Beech]

Debbie, thankyou for your very comprehensive response. Your surgery certainly looks very complex. Of course, mine was much simpler. The surgeon simply removed the bladder, prostate and, at the same time, my appendix. I only lost about six inches of my intestine which, incidentally, had the effect of virtually curing my chronic constipation. The surgeon did discuss other options with me but my own research, via the internet, had showed that they were often plagued with problems and residual pain. The inconvenience of having an external bladder is minimal although I can understand that cosmetically it might not appeal to some younger people.
I hope your condition continues to improve and that no further surgery will be necessary, regards, Jim

[icnmgrjill]

Okay... I've had a few emails about what Debbie means by "ic in urine." Hmmm... hard to explain but I'll give it a go.

It's very well known that IC patients who have had their bladders removed MAY develop IC in their pouches. Dr. Parsons addressed this in his last guest lecture, and he called it "pouchitis." Whether it's IC or pouchitis, the process is the same. It appears that the pouches become irritated after time and exposure to urine.

So, the question then becomes. How would the pouches become irritated if the bladder is removed? Isn't IC just in the bladder?

That, my friends, is the $6,000,000 question. Clearly, there has to be something else at work if the pouch also becomes irritated. Do you remember the research by Univ. of Maryland (Susan Keay, Jack Warren, etc.)? In those studies, they found that IC patients had an unusual protein in our urine called APF (Antiproliferative factor). So, for the first time, we did have some indication that there could be something in the urine involved in the IC syndrome.

Oh, I wish that I had more time but I don't. So, let me give you the laymans interpretation (and anyone out there more familiar with the research, feel free to clarify or straighten me out here).

My interpretation of that research is that the APF (and a few other factors) apparently interfere the with "proliferation" of cells in the bladder, in essence the healing process (aka. new tissue generation). So, I liken IC to wounds that are having trouble healing... in the bladder.

Well, the second phase of the Univ. of Maryland research was to locate the source of those proteins. Were they coming from the kidneys? another part of the body? Well, their research found that most of the protein was apparently made in the bladder but that, if I remember correctly, a tiny percentage was actually found in the ureters above the bladder.

So, if this protein is part of the IC disease process (as I think it is), AND a small part of it is manufactured outside of the bladder, then this could be the mechanism which explains why a pouch could develop IC like symptoms.

FYI - The University of Maryland has since found a few other factors in the urine... I'm not up to date on their latest findings here. Check our research library for more info. http://www.ic-network.com/library/


Here are a couple more references:

Check out the guest lecture by Jack Warren, MD in our guest lectures. He is one of the primary researchers and explains it much better than I.

Check out the guest lecture by Lowell Parsons who talks about pouchitis briefly and the importance of using something like elmiron or heparin in the pouch to give it protection.

http://www.ic-network.com/guestlectures/

Jill

[KarenK]

DebbieD, you are not alone. I had my cystectomy in March of this year. Both of my kidneys are blocked by strictures (Doctor is trying to decide what to do...my original surgeon just quit on me as soon as problems arose). I am also having "charley horse" like pulls in my stoma that makes it go from 1/2" protrusion to retracted. ET's can't fit me properly. I am also allergic to tape, stoma paste and, to a lesser degree, the adhesive in all of the barriers. My new doctor says that the stoma problems are most likely related to the "toxin" or APF in the urine causing the loop and stoma to be irritated and cramp. He says that is the same reason that I only get 2-3 days out of a "longer wear barrier" that is suppose to last 5-8 days. He says that my urine will eat away my loop over time and that I am looking at a lifetime of revisions. Right now we have to get my kidneys flowing and that will most likely mean my first revision...only 5 months post-op.

I heard so many success stories when I was trying to make the decision whether or not to have my bladder removed. I had no choice of having a continent pouch as the only doctor that my (then) insurance carrier would approve was my local uro who only knew how to do the ileal loop.

I have some phantom bladder, alot of kidney pain that right now is requiring morphine to control, and constant itching, burning and blistering under the appliance because of the allergies. If someone had allergy tested my before I had the surgery, I would not have had the surgery. I have tried that non-adhesive system...it is like wearing a huge fanny pack in the front and it leaks all of the time.

I don't know that the internal pouch would be any better as far as the urine irritating it but it would have been better for my kidneys and in light of my allergies, much better for my quality of life.

Has anyone had an ileal loop that was converted to an internal pouch? Is it any better? How far out from the first surgery were you before the conversion?

Thanks for any info and wanted to tell my experience with this.

Karen K

[Judith]

Karen, first of all I wanted to suggest you try Cavilon No sting barrier wipes( by 3M) on your skin before putting on your appliance. It may protect your skin against some of the problems you are having. I am allergic to a lot of things, but I can use these. There is only one type of tape I can use. Also have you tried any pouches by Nu-Hope? When I wore a pouch they were the only pouches I was not allergic to. To answer your other question, I did start off with the ileal loop and then was converted to an internal pouch. I made the switch after I had an ileal conduit for 6 years. I had a lot of problems with my conduit, and even had a revision. The pouch has worked out very well for me. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[KarenK]

Thanks for responding Judith. The no-sting cavilon barrier wipes were the first ones that my ET used on me. I am allergic to them also. Nu-Hope sent me some barrier foam with adhesive to patch test and I broke out with it as well. I sure wish I or someone had thought about patch testing for skin allergies prior to doing the ileal loop. Sounds like I will have a very long wait before anyone would even consider converting me to an internal pouch...although with the strictures in the ureters and the loop already, it may come sooner than I think. While I dread another major surgery, it will be better that living like this. The appliance hurts so much I can barely walk. Yuck!!!

Karen