No announcement yet.

Not sure where to go from here

  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Well the time is nearing and I still don't have any answers.

    My son said today he actually now doesn't start work till the 4th of July so I am now trying to see if I can get his flight changed to the city my uro is in so I can go pick him up and see the uro at the same time and make one trip.

    My husband has decided I am too sick to make these trips alone, which I am.

    After speaking to my Dr. yesterday he does not want me to put off the uro app.

    I had tentatively decided to try putting it off for a week or 2.

    but here I sit with a million things to do and no phone call to say if they can change flights.

    Oh well patients. It will all work out.

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


    • #17
      MG - reading your story, first of all I feel so badly for you. I hope you were able to get to the URO and get your son. Post an update so we know you made it through.

      Second, I've seen a few of your other posts, and I feel like we could be twins! I have such severe retention issues - often times I can't walk it hurts too much because my bladder is so full. I can't ride in my husband's truck, I can't go in the boat anymore since the bouncing hurts too bad. I get UTI's, not quite as often as you, but one every couple of months. My low back pain is horrendous, plus I have bowel and pelvic pain issues on top of it all. Just wanted to say "hello!" and tell you that I feel your pain, and I hope you are getting through it all ok.
      IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

      Elmiron 3x day
      Trazadone at bedtime
      Tramadol as needed for pain
      Monthly B-12 injections
      Continuous Birth Control (even though I had a hyst, to control cysts)
      heating pad, hot epsom salt baths, strict IC diet
      Interstim implant 9/11
      Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

      Failed Bladder Treatments
      Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching


      • #18

        It has been a whirl wind here, things should slow down now.

        We ended up changing my son's plane ticket to fly him into the city the uro was in.

        I went into complete retention for a second time in 2 1/2 weeks, after this my Dr. was pretty adamant that I really needed to go see this new Uro. Also my husband finally got it that I was not capable of driving by myself to the uro app when he had to bring me home from a dinner out, I sat through dinner and did not eat and then we were to go to church. I just could not sit through it, I was in lots of pain, could not pee very well and I was exhausted from getting up so many times Trying to pee at night.

        He went to church because we had taking his father to dinner and church so he needed to go back and be with him, I was very okay with this I just wanted to crawl in bed with my heating pad. I was asleep before he got home.

        So my son flew in at noon, my Mom and a niece went to the airport and met him, I cried not to be there, but my husband had to work that day he just couldn't get out of it. When he got home from work at PM we left to make the 8 hour drive to the city. I was really uncomfortable, I had pillows, blanket, heating pad, books, Ipod, snatches, meds of all sorts. I stayed a wake because my husband was really tired we had got up at 5 am that day, I could have slept but I was afraid of him falling asleep. We arrived at 2 am, I immediately went into my son's room, he's the baby of my children and I had not seen him in 11 Mons. I hung on to him and cried my eyes out.

        I sent away a boy and got a young man back, he had gone on a student exchange, I missed him so much, but it was really good for him. He was sick as a child and spent many years housebound, so I had wondered if I would ever see the day that he could function in the world. He's healthy, has gained lbs of muscle, he joined a gym and worked out to build muscle mass, he went to school, worked on a farm, lived with a family with 7 kids ages 2 to 19. He learned a second language and is fluent in it. It was a win win all the way around, he traveled a bit in Europe and saw some different ways of life.

        The next day we hung out and my Mom went home to her home, it was nice to see her even for only a day.

        The next am my husband and I went to see the uro. I am not too sure what I think about him, he has a bit of an abrupt manor, bit I think hopefully he may know his stuff. He did an in office cyst, but it was not painful at all, he said he didn't know if I had IC or not as he didn't inflate my bladder enough to see IC, but that it is very large and flabby, it holds a very lg volume of urine and it apparently doesn't work to empty. He asked me why it didn't empty I thought he would tell me, not me tell him.

        He asked and answered his questions before I had a chance to answer him. He kept asking me if I had MS, I have had this ruled out, he must have asked me 3 X's if I had Fibro, or Lupus and didn't seem to happy when I said I did not, he said but you hurt all over I said no just my pelvic and lower back.

        He finally decided that he didn't have enough information so he got me to sign release forms so he could get info from past uros. He asked me to get my records from my GP, anything that pertains to my bladder. My GP has already done this he faxed him 25 pages of reports and test result for the last 8 years, my history goes back much further than that but it was about then that they realized I had voiding problems as well and most other IC symptoms.

        I am to go back to see this uro again in Sept after he has had a chance to review my records and he will have plan of treatment by then. I am sure he is leaning to wards self intermittently cathing.

        But go figure after the second episode of total retention, my retention issues have improved a bit, so I am not as uncomfortable as I was for quite a while.

        But of course with this condition you can't have it all, my bladder as far as IC symptoms have been pretty good for a while, no burning, or pinching upon voiding, no urgency, I would not say a total remission but IC symptoms were better than they have been in a long time. I had quite a flare from Trying a medication a few weeks ago, but it did clear up in a few days, but now it is back. It is not like a flare it is more like when I just had constant symptoms.

        I follow the diet really closely and attribute my bladder being pretty good from the diet. I have racked my brain, I didn't eat anything I shouldn't have, but as I said I guess you just can't have it all at the same time.

        Anyways after I was done at the uros we picked up out son and headed home, it had rained so much that there had been a slide on the road and a 8 hour drive became a 13 hour drive, it took us 5 hours to go about 60 miles. I had to pee so bad I had to climb into the bushes that were soaking wet from the rain, and pee. I could not wait any longer. If I have to wai to pee, then when I can go I can't go, so I had no choice I had to go in the bushes.

        Oh well it was not the first time and I m quite sure it won't be my last time.

        My older son had taken a couple of days off work so he was at our home when we got home at 2 am in the morning, he missed his brother too, so between the 2 of them being home it was a steady stream of people through the house for a while.

        Then a boy who I consider mine as he spent more than half of his life at our house, our youngest sons best friend, they have been close since being babies. He had been traveling since last Nov. he showed up to surprise us on Sunday night, it was great I really missed him too. He is part of the family, he has always just came and went as he pleased, eats what ever he wants, our home was truly his home too.

        My older son went home on the Sunday night, and the younger son started one of his 2 jobs the next day.

        Then of course no matter how many times I told him to sort out his course's for University in the fall, he of course left it for the night before, this was Monday evening, he then had to be ready for registering at 7:45 am Tuesday am, he pulled it all together and got into all the courses he wanted, and then headed off to work.

        So I am hoping things will settle down for a bit. I enjoy all the activity and company, but maybe that is why my bladder is unhappy now. It like things to be a bit quieter, and for me to be able to rest when I need too.

        anyways I guess I will let you know what happens with this uro in Sept.

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


        • #19
          Hey, just read this post MG! What a story, but yes it sounds familiar to what I have going on! I too have to travel for my Uro, but only half what you travelled - I cannot imagine going that far! I'm guessing you live in Canada? I don't know about there, but when I travel there are things to look into. Since it's near a hospital, some hotels offer discounts to people staying for medical treatments. Since my parents are so amazing, they book us a hotel room for a night or two. But I've been told there are charity places where you can stay for free or very little too.

          Definitely keep us posted. I have severe retention as well and am able to go on my own sometimes but cath other times. I hate it soooo much!!! So if you find any answers I would love to hear them of course. However, my doctor thinks my retention comes from PFD and the inability for my muscles to relax anymore because I'm always in so much pain :/. I say, then do something to take away my pain because I'm tired of it anyways lol! I hope something works out for all of us. IC is miserable enough without retention.

          PS - Reading your posts are very encouraging. I like to see how you just try to work everything out that you need to, even though I was thinking all that driving (even as a passenger) would be so horrible if I was in your shoes! So I give you lots of kudos for figuring all of that out and staying committed to the doctor even though it's such a hassle to see him. A catch 22 I guess! God bless, MG, hoping your flare is feeling better.
          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.


          • #20
            Thanks for the reply it is always encouraging to hear from someone in the same boat.

            I am lucky in that most Cities I have to travel too, I have family to stay with, this helps a lot, we ussally stay a day or too as my husband knows how hard the traveling is on me. This time just was circumstances. He had to work that one last day, the job was ending it was a contract and the whole thing would have had to wait for my husband to get back to be completed, so he really didn't feel he could leave them in the larch or we would have gone down during the day and probably on the weekend so we were there when or son arrived.

            Then our son who had been away for 11 months had to get home as he had 2 jobs to start to earn money for University, as he did not earn any money while away, but did earn experience.

            Our other son who lives 3 hours away had taken days off work to be at our home when his brother got back. It was really nice they got to spend 4 days together. there is a big age gap between them but they have always been really close, nothing the older one would not do for the younger one, they live together for a while when the younger one was in high school, so he could get all the courses he needed.

            When we go to my next app we will probably make it a bit of a holiday, see my brothers, and maybe go over to where my Mom lives or she will come to my brothers at the sometime.

            I planned this app for the same time my youngest has to move to the city to go to University, so it will be nice to stay a few days and see he gets started off right. Although he is very mature for his age and he will have no problems I am sure. Also my brother lives a few miles from the University and have told him he is invited to Sunday night dinner every week, and to bring his laundry to do while he is there. They also said he can come for dinner any other time he wants too, can use their car if he needs too, and can just come over to their house even if they are at work, if he wants some downtime or a quite place to study. I couldn't ask for anything more. both of their kids are away at Universities else where.

            As I said in the end I have faith everything will all work out, although my husband can be frustrating at times as he will never make plans in advance. He lives by the day, but we have lived this way for 30 years so we make it work and now with IC I have to live more and more by the day.

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


            • #21
              where do I go from here

              I'm so glad to hear that things are starting to work out for you.
              Also, how excellent that your son will have a place to go to on weekends for TLC and laundry!
              Feel well and have a great weekend.


              • #22
                My are with you all. May you all find a way to peace and joy in your lives.