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  • #1

    Dr. started to talk about this...

    The last time I was at my doctor the topic of bladder removal came up, and considering that things have actually gotten much worst since this time I am guessing it may come up at my appointment next week. He is a very good doctor, one of the best. He will NOT pressure me into any decision at all, which is something I have very mixed feelings about. It's a mark of an amazing and respectful physician to give so much power and trust in his patients, but at the same time, I'm like, can't you just tell me what to do haha? I know that's not realistic, but a girl can dream right?

    It's so funny 'cause I did a search for this topic and found an old post where I wrote I was super tired of going to the bathroom every 45 minutes! Hahahaha! Now I go to the bathroom like 50 times a day. Sometimes a little more and sometimes a little less. Sometimes I get so incredibly tired of going 50 + times a day and I hold my pee in longer and just deal with all the pain. Well, either way there is a lot of pain involved I guess.

    A recent development is really bad urinary retention. I wrote this in another post too, but I went several weeks where my bladder just wouldn't work at all. I had to cath every single time I wanted to pee. Not wanting to cath myself 50 + times in 24 hours (OUCH!!!!), I would hold it in. Well, that back fired and I got a nasty kidney infection that took a couple weeks and two rounds of antibiotics to get rid of (I do not recommend kidney infections - it was not fun at all). Now I pee on my own when my bladder spasms (I run to the bathroom when I feel the spasm to get as much out as I can), and when I go for awhile without a spasm I have to go back to the catheter.

    For the retention I tried to go down on some of my medicines, but the pain was too much for my body to physically bear, and so that wasn't going to work. I guess I'm pretty depressed because it's incredibly hard to go places. It's a huge deal and I'm already exhausted to no end as it is. Even going to the movies can wear me out big time. Some people tell me the IC is worst because I'm sad, but I'm pretty sure I'm sad because the IC is worst. Sometimes though, if I hear enough of that talk I get really really confused.

    Oh, and I've tried like everything. I even ordered Uracyst from Canada. I tried natural and traditional medicine, vitamins, IC diet/organic living, therapy, alternative treatments, off label stuff, etc. I've had IC diagnosed for several years, but had pretty bad bladder problems off and on when I was a kid as well. I have had some times that are better, but haven't had one in awhile and things are just worst than ever. Even in my "good" times, the IC can be pretty symptomatic but I would just try to take meds and work around it the best I could.

    I'm terrified of having my bladder out, but I'm about at the end of IC treatments and obviously things are pretty bad. I do not have any support from my family for the surgery which is pretty heart wrenching to tell you the truth. They do not understand. They think I just don't try hard enough to "live with" the IC. Yikes! There's no way. I'm always drugged up and my doctors at the pain clinic got mad at me saying I should be drugged up more. I'm absolutely terrified of becoming a vegetable. I don't know what to do. I want to consider the surgery, but I know it will be hard without support. I'm scared of it coming up in the appointment. There's no pleasing me. The surgery scares me, but not having it scares me too because he already mentioned if I don't have it I may just be "waiting to see if something new comes out" in the field. It's just depressing to live this way. Any thoughts? Words of encouragement? ANYTHING that might make me not so scared lol? Thanks!
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.
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  • #2
    Oh, and if it wasn't super clear in my message, I'm in pretty early stages of thinking about this surgery of course. I think it's hard for me and others who know me to think about sometimes because I have had some remissions, like a pretty good one that allowed me to finish college, but it's been almost a year with my IC just being pretty brutal and I have recently just hit an all time low. Another thing that muddies the water on the support front is that I always try as hard as I can to find some positive in things because I know this has kept me going and kept my life from being a waste. But I know things could be a lot better. I would really like things to be a lot better. Since no IC treatments have had a huge impact on my IC, I think that is why my doctor brought up this as a possibility. He's very nice. He will not even consider it until I say it's what I really want. I just don't know how to make a decision like this. I'm young. I NEVER would have thought I would be making a decision like this right now. With IC it's not clear cut. I could make a pros/cons list, but seriously, how do you decide if you get a new bodily organ or not lol?
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

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    • #3
      I'm so sorry you are in such a difficult place. I hope you feel better soon.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.       [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        Ollie,

        I had my bladder and urethra removed Jan 2010 and even though I had many complications and still have been having MRSA in my Indiana pouch, I would do it all over again. The horrid pain is gone. The constant urge to pee is gone. I have to say though that sometimes especially when I get in the shower, I feel like I need to pee. But it is short lived.

        It is a "VERY" hard discision to make. I know it took me a couple yrs to do.

        But, here are a few suggestions you may want to try. Have you tried the Gaba-Ic protocol. Also, Low Dose Naltrexone is an another alternative.

        If you want more info on both pm me and I would be happy to give you the info.

        I'd also suggest that you ask many questions, research til the cows come home before you do decide.

        Many hugs and blessings,
        MARY


        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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        • #5
          I was once in your place. I was 30 with 2 young children- ages 3 and 5.I was really scared how that would impact my ability to be a parent, but at the same time I knew I was being the type of mom I wanted to be with all my health problems from the IC. For I decided that sure the surgery would not be easy, but in the long run after all was said and done in the end it would be for the best. I was right and now 25 years later I am not sorry for that decision that I made to get it out. I initially had the surgery for an ileal conduit- the standard type of urostomy where I wore an external pouch cause the internal ones had not yet been perfected. I had that for 6 years and then I switched over to the internal one. I wont sugar coat things and say it was easy, but I will say it has made life much easier once I was healed from it. Now I honestly don't really think about it its just who I am. When I think about all the other bad things I could deal with this is nothing! I would see if there are any ostomy support groups where you live and I am sure will get ots of support from people there. My local support group really helped me in adjusting to life with out my bladder.

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          • #6
            OllieR

            I am in the same boat, I could have wrote your post.

            I decided I need to think about this for a long while.

            My Dr. made me an after hours app a few weeks ago and said he did not feel I was there just yet but I needed to be considering bladder removal, so when the time comes I know all about it.

            It's the recovery that scares me. Well the whole thing scares me.

            MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment

            • #7
              I just want to comment on recovery. IT all depends on your age, health and what type of surgery.When I had my cystectomy with an ileal conduit I was in for about 10 days and then it took about 6 weeks afterwards, but I was 30 yrs old and at the time had no other health issues. I also had two young sons to care for so I guess I forced myself to recover quickly. When I had my pouch put it in took much longer because I had a long hospital stay, and I was older as well as having some other health stuff going on. For me tiredness was the thing I remember most as well as adjusting emotionally. We are all so different, but rather than dwell on the what ifs try to stay positive and think about all the good things that may happen as a result.

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              • #8
                Ollie, I understand your dilemma. Not a week goes by when I don't think about having my bladder removed. I also urinate about 50x a day but I am much more accepting of this then I was a few years ago. I just want to let you know that you are not alone and you are courageous.
                DX w/ IC in 2002. Received disability for IC in 04. Have severe IC. Hunner uclers, high frequency, moderate arthritis in lower back, severe Pelvic floor dysfunction. Anxiety due to changing amounts of pain meds. Hips misalignment (left leg 1/2" shorter).
                Past treatments: dmso and heparin instillations-in severe pain 24 hours afer emptying, hydrodistensions very painful because of ulcers, interstim twice--both failed due to infections at battery sight. PTNS-didn't reduce frequency. Botox jan 09 in bladder and pelvic floor and steroids placed on uclers. Burning pain 3 weeks after procedure but helped 30% with frequency and 50% with pain and spasms. Botox june 09 in bladder only and steriods injection into ulcers. Not as painful afterwards, put had to bear down to urinate which caused severe tightening of pelvic floor. Helped again with freq and pain. Tried physical therapy past 4 years. Has helped over time. On a regular basis I get deep tisssue massages, acupuncture and see a chiropractor. Had 3 caudal nerve blocks. Slightly improved PFD. Had Sacral nerve streriod injections on boh sides of buttocks. Helped with lower back pain, hip and buttock pain. Pudental nerve block 9-13-09. Severe pain 2 days following. No help with PFD. Steroid injections April 2010. Helped relieve some of the pain and frequency. Pelvic floor lidocaine injections May, August 2010. Noticeable relief of trigger point pain. Steroid injection into hunner ulcer August 2010. Very helpful.

                Current meds: percoset, ambien, trazedone, klonopin, flexeril and norethindrone (to control endometriosis). Probiotics and a high fiber/low sugar diet helps help with constipation.
                Meds that didn't work or had adverse side effects: elmiron, elavil, lyrica and several others.
                On a daily basis I walk 2-5 miles, pray and meditate. All of this gives me tremendous strength and energy in both my mind and body.

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                • #9
                  Wow! I knew I would get support, but you IC babes have written things that mean so much to me and I thank you for taking your time to give me security and open up about your own struggles, which I know is hard. My appointment went really really well. This did come up as a serious recommendation. I am having a hydrodistension in July. My doctor said that depending on the results, it will help make the decision easier. I appreciate all the support. I will definitely be printing out these posts and hanging them around my room as reminders of courage. I love that I can do that! Until the hydrodistension I'm trying not to think about it. The doctor did say he thought it could really improve my quality of life.

                  Now, I know all the risks and everything. I would really appreciate continued support. As far as bringing up other options, other treatments, and such, I really have tried everything and see one of the best doctors in the country. Anything I didn't try was because the risk of the side effects causing much more problems was too much greater than the potential good I would get out of it. With the bladder, the whole thing would be removed and I would have an internal pouch. As you know, this stuff is really complicated and I could not possibly write it all out as a post. Anyways, everybody has been perfect in their posts. But I had to bring that up because I'm in a super vulnerable position right now.

                  God bless all of you. My heart goes out to the others who must consider this option. This forum is so amazing because I love being able to talk to others who know exactly what I'm going through. My friends and family are crazy supportive, but it's just not the same as talking to others going through the same process. If you have extra questions or comments please ask away; you can PM if you like. The feed back from the ICN has helped make me soooo prepared for my treatments.

                  In fact, my doctor actually commended me on coming so prepared for my appointments and being so knowledgable about my illness and treatments. Most of this is because of you guys! I know if I decide to have it out, it will be the right decision. For now, I just have a lot to think about.
                  Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                  24 yo F

                  I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

                  Comment

                  • #10
                    PS - I would definitely, of course, love to continue to hear about those of you who mentioned you are thinking about this same decision. Updates are great! I'm sure you guys feel as blessed as I do to have others to lean on for support. We ICers have to stick together! Anyways, I would love to hear more about what you are considering, and what type of surgery you will get (I know sometimes people get an outside bag or keep the base of my bladder. My doctor said that I could not do that because he says: 1. I'm too young to have a bladder drainage bag hanging on me lol and 2.He knows I'll still have significant pain if he leaves in any part of the bladder).

                    I don't know if I made it clear in my previous post. When we talked he actually did say that I really needed to think about this. He said that with the medicines I'm on and all the complications I am having I'm going to need to have the surgery if my IC doesn't improve in the near future. That, along with examining how bad my bladder is with a hydrodistension make me feel sooo much better about deciding because I can make a much more educated one. Things you others can think about too if you're having trouble deciding and your doctors have not mentioned doing some of these extra things.
                    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                    24 yo F

                    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

                    Comment

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