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Never have I felt worse!!!

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  • IC/IBS Hopeful
    replied
    Sorry to hear your in so much pain. You mentioned Michigan my doctor is leaving and moving to Michigan not sure where but his name is John Stoffel if you happen to hear his name he is very good and very nice. I had my bladder out in 2008. The constant pain of IC is all gone. but I have had many difficulty's with my loop and hurnias. I would not hesitate as what do you have to loose. You are misserable right now. Yes it is hard to make your mind up but when I did it my bladder was not working any more and I had to cath over 40 times a day. I figured I never want to have the urge to pee again. I told the doctor if I still have pain well at least I don't have to run to the bathroom anymore we can manage the pain. I wish you the best I will answer any questions you have Just ask nothing is too personal when it comes to this. good luck. Oh I had trouble with depression also once I had my bladder out and weened off long acting pain meds I was better. best wishes.
    Lynn

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  • Imustpee
    replied
    I had my bladder removed in Dec 05...altho I had alot of complications, I would do it again in a second! I went back to college at 46....worked 2 part time jobs at Dr's offices, gave piano lessons, taught at the college I graduated from for 2 1/2 years and got the old band back together 4 months ago...it's a HARD road, but well worth it for me..
    www.paydaydaddyband.com

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  • Judith56
    replied
    Glad that positive things are happening for you. I hope it continues.

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  • classicclem
    replied
    classicclem here

    Just thought I'd drop a quick line to tell you all about what has been going on with me. I've been fortunate enough to be introduced to Dr. C. Nickel in Kingston Ontario through Dr. Ken Peters at Beaumont Hospital in Royal Oak Michigan. I sent an email to Dr. Nickel when my family doctor was reluctant to send a referral to Dr. Nickel. (that is required in Canada) Dr. Peters couldn't do it because it is another country. Anyway, short and sweet I got an email back from him the next day and he said he would see me. That was May 10 and I've already been up to Kingston on the 24th and he has a game plan already in the works with bladder removal being the very LAST option. There is a trial going on in Canada now with lidocaine which is instilled in the bladder and I've crossed one obstacle to be excepted but have to get funding from the "powers that be" as I'd have to be there 12 days and then there is the transportation and meals as my hubby would accompany me. Dr. Nickel's thinks this will fly but his back-up plan in being set in motion for laser surgery of the Hunner's ulcers asap. I know that the Good Lord is watching over me as Dr. Nickel's waiting list is about 3 years. All the prayers are helping!!! Took the train to Kingston last weekend (about 500 miles) and back on Wednesday--was just horrible and am still suffering but hopeful. Should hear from the "powers that be" sometime this week as Dr. Nickel's wants me up there early June. Good things do happen!!!! Thank you all for your responses and prayers. You are all in mine also!

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  • Mothergoose
    replied
    Thanks Mary, I kinda muddle through it myself for a bit first, and find a new uro as mine closed his office due to medical reason a couple of weeks ago.

    Thank You MG

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  • maryla
    replied
    Originally posted by Mothergoose View Post
    I am not to the point of removal yet, but my Dr. just told me I should be thinking about it, as he is sure the time is comeing for me too.

    So I guess I will being do some research on this topic too.

    MG
    I'm so sorry.....If I can help at all please let me know!

    Hugs and blessings,

    Leave a comment:


  • Mothergoose
    replied
    I am not to the point of removal yet, but my Dr. just told me I should be thinking about it, as he is sure the time is comeing for me too.

    So I guess I will being do some research on this topic too.

    MG

    Leave a comment:


  • RebekahB
    replied
    Go for the removal!

    Of course no one can make the decision for you, but for me it was the best decision I have EVER made. I was diagnosed with very severe IC when I was 14 years old, the worst case my doctor had ever seen. After 6 years of trying everything any specialist could come up with I had my bladder removed. There were some complications but all-in-all it was an amazing outcome for me. i am basically painless for 5 years now, after being in severe pain for seven. If you have a doctor that can do, go for it. It was worth it for me, and if they cant find any other relief for you, I think it will be worth it for you as well.


    I hope you find something to help you! This is a terrible disease to be stricken with. Good luck!

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  • maryla
    replied
    Carolyn,

    I am so sorry that you have to made this decision. I had my bladder removed Jan 7 2010 and although I have had many complication and still do , I DO NOT have any regrets. All that horrid pain is gone!!!

    The last 2 months before getting my bladder removed were total hell. After I made the decsion to have it removed I felt very relieved and knew that it was the right choice.

    I would encourage you to read all that you can of the old posts in the bladder removal section. Ask many questions here even IF you consider them dumb or whatever????

    I have an Indiana pouch and love it. Since having it removed I have had many infections and my family got together and had a discussion and want me to have it put on the outside. Isn't family fun at times.

    Also during my healing process I had many life alterning events happen, which I believe that impeded on my healing process. That's slowing getting a little better.

    Two weeks out of the hospital, I lost my sister and 13 days later my husband lost his brother. I miss her so much. Just this morning, there was something I wanted to share with her, and for a momment, I reached for the phone..........

    I am here for you!!

    Many blessings and hugs,

    Leave a comment:


  • classicclem
    replied
    Dear MOTHERGOOSE:

    Thank you for your reply and prayers. This ugly disease didn't rear it's ugly head until after I retired at 49 (thank goodness for that) I had no surgeries, accidents or stomach trauma so who knows where it came from. My capacity is diminished greatly and I have lots of pain due to Hunner's ulcers. I've tried every treatment, medicine and therapy to no avail. I'm scared but am at the end of my rope at 62. I have a DR who doesn't listen and my Urologists are out of town. The car ride isn't a pleasant experience. Will keep you posted.
    Thanks again.
    Sincerely
    Carolyn

    Leave a comment:


  • classicclem
    replied
    Dear Fiona

    Thank you for your kind words and advice. Yes, It is a VERY difficult decision to be making but the depression is just getting deeper since I have no life. I have 2 grandchildren whom I want to spend quality time with, at least, in the future. I'm scared to death but the pain from the Hunner's is getting impossible to bear and I have a Dr. who isn't much help. Even after 12 years I'm not sure he believes anything I say. Have had 3 wonderful Urologists involved (1 in Michigan and 2 in Ontario) The 1 in Michigan is the closest and the most compassionate man but the cost is out of the question for surgery over there. The other is 200 miles away and the third in 600 miles away. Just trying to figure out all the ins and outs before the big day. (Not booked yet)
    Sincerely
    Carolyn

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  • Mothergoose
    replied
    Classiclem

    Hi I am sorry in my last post I forgot to say how sorry I am to hear you are in such a postion not a nice place to be.

    I can't speak about having my bladder removed, all though before I was diagnosed (which took many years, Long story) I certinaly thought about it.

    I do have expirence with putting off surgeries and being afraid.

    Starting at 30 I was told repeatedly 10 years I need a hysto and I wouldn't have one.
    1. I think this is a sugery that Dr's do because it's an easy out for Dr.'s rather than actually figuring out what is wrong.
    2. I had a few friends who had problems afterwards, prolapse, early meno etc.
    3. I wanted it done vaginally, they wouldn't said my uterus was too big and it was too dangerous to do it this way. I didn't want the incission, vanity and scared of recovery, vain I know but that was my thoughts at the time.
    4. I wanted at least one more child, although I was told I probably could not.
    5. I was plainly scared, to me it was a big decission, and at the time my kids were young, and my husband worked 24/7, and felt I needed to have housework done etc by the time he got home form work, at the time he was not very good about stepping in when I was sick for a day let alone a 6 week recovery.

    Anyway I did have another child at 34, everything went fine for the most part, had a major flare and ended up in hospital for a week and bed rest for 2 months, but I ended up with a son who has brought me so much joy in my life it was worth it.

    After he was born my menstral problems became much worse and I was told no more children for sure, I could have them but should not. Two years later I had a prgenacies scare and realized I don't want more children any more, I wasn't sure till this point.

    I had my tubes tied, the Dr.'s were really tring to get me to consent to a hysto at the sametime I refused. I am stubbron type and just not ready, but the thing is I was really suffering, and suffering I didn't need to go through.

    Some where along the line I started getting gallbladder attacks which should be pretty straight forward to diagnose, but this too took years to diagnose and many attacks. I had a polup in my gallbladder that would from time to time fall down and cover the outlet of the gallbladder, although they would say this and then say but I am not 100% sure if we remove your gallbladder it will help, I needed to know it was going to help.

    Anyways between these 2 things and IC I finally figured out I was not liveing anymore, mostly out of fear. Then I had a gallbladder attack in Hawaii, and put a real damper on the holiday for the whole family.

    After this I decided time to find a new surgen for my gallbladder and a more up to date gyno.

    I got luck and found ones I liked right away, the surgen said he was 100% sure that was my problem and I needed out ASAP or I was going to have to done as an emergency, I found a gyno who said a hysto would help me alot but he figured I had something else going on as well ( I know now it was the IC, and I think he had an idea), he took my case to a gyno convention and presented it and was told there was nothing else that could be done other than a hysto, so by now I figured I must need it, and this gyno promised me he would try to do a vaginal hysto, but made no promises because he said my uterus was the size of being about 3-4 mons prego.

    So it turn out one hospital called and said I could have my gallbladder surgery the very begiining of Jan 2000, by now I was 40. The surgery went fine, he said it was getting quite infected so would not have lasted much longer and the choice would have been taken awy from me. I felt better from this part right away, the recovery was a peice of cake. 6 weeks later I had a hysto, the gyno did a vaginal/lap assisted hysto, the recovery nurse said it is a type of sugery that was not done in that hospital at the time but it went fine and I was told I would need to be in hospital 5-7 days, but I felt so much better after having the surgey than I did prior to surgery, he let me go home after 2 days.

    I now shake my head at myself for putting myself through all that for nothing but my few stupid concerns.

    So no I have not had my bladder out and that is a way bigger deal than what I had. Only you can decided, make sure you are comfortable and ready to do it. Even thought I really suffered all those years I still don't regret not doing it sooner I just was not ready to do it, and I think part of your healing has to do with your state of mind too and if you are regretting it, in my opinion you will have a harder time recoverying and I hear it is a very hard recovery.

    I am sure there will be people who think I was absolutely crazy to do what I did and I do wish now I had done things differently, but hind sight is 20/20. You have to to what is right for you, and get many different opinions on your case.

    Good luck with what ever you do, I will pray for you.

    MG








    The surgen couldn't figure out why someone had not taken out my gllbladder he was quite sure that was my problem

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  • Fiona R
    replied
    Classiclem,

    I have just read your post and I feel so desperately sorry for you. I had a urinary diversion done in 2003. I have a ileal conduit as I no longer have my appendix which they would have used to make a neobladder.

    I'm going to be absolutely honest and tell you that it was a really tough decision and when it was done, it was all done as an emergency and I was so out of it on Morphine, I didn't really have a clue what was going on.

    My pain was totally removed and after getting over all the post operative pain I was pain free for the first time in years. I can't say that it has all lasted and I have been suffering from ongoing pain since 2005 but that's because my ureters have shrunk and there is concern that the IC has spread. I would point out though that my pain is nowhere near the pain I was in before the operation, and I still maintain that it changed my life for the better.

    I am under the care of a pain management team and wear Versatis patches which are a lidocaine gel patch, which really seem to work alongside Pregabalin and Duloxetine.

    It is a big decision but if you have tried everything in the past, then how much more are you expected to be put through. Have the docs considered a temporary nephrostomy which would see if diverting the urine would help in the short term.

    Contact me anytime if you have any questions and I will do my best to help you at this really difficult time.

    Take care, Fiona

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  • Mothergoose
    replied
    Just out of curiosity did you say the pain meds weren't working too well, I have heard of this before where a person says this and the Dr. response is well there is no point in taking them.

    I have also read the tricyclics help make the pain meds work better, so I would have thought he would have added them not taken the pain meds away.

    I would go back to the gp and talk to him again about it, not only is it cruel to just take them away you can have withdrawals etc for stopping abruptly.

    Just my thoughts MG

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  • classicclem
    replied
    Dear Judith

    thank you for your reply and any info you can give me to enter into this fully armed would be much appreciated. Do you have an ileum loop and stoma? and just where are they located? Hope this isn't too personal. I was in a much better state of mind until I saw my GP today and he took away my pain meds to try some other anti-depressant. Why do they do that? It wasn't doing the best job but at least made it more bearable. My URO (who is 220 miles away) has conferences all this month so I can't see him until June 3 and he leaves any pain control up to my GP anyway. Another miserable night and so much anxiety needed to get it off my chest. I'm at the end of my rope and I think my husband is, also..................All I do is cry.

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