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  • #1

    Back Home

    Hey Guys,

    Just an update on my previous message. I was just discharged from the hospital today after spending a little under a week on antibiotics and getting pain control. I ended up having a Streptococcal bacteria that fell under the staph family that can and is being treated by 750mg Levaquin. Now that they have gotten my nausea under control, I can take my meds--pain meds and antibiotics by mouth, at home with my husband. To me, this is a small miracle because it's February 13th and I, at least, get to be here with my husband on our first Valentine's Day.

    God Bless and I hope everyone is well!
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.
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    • #2
      Glad your home & feeling better,
      Enjoy tomorrow with your husband!
      Hugs Sandra
      "Never Give Up."

      To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

      My Photobucket Link:
      http://s237.photobucket.com/albums/f...ramack_photos/

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        • #3
          Wonderful to see you home!!! Happy Valentine's Day!!!!
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

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            • #4
              I'm so glad you're back home. It's always much easier to rest in your own bed --- hopefully snuggled close to your husband.

              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/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              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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                • #5
                  So glad you are home!! Will be pm'ing you back soon!

                  Lots of hugs,
                  April

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                    • #6
                      Thank you!

                      Thank you guys! Aaron gave me the most wonderful Valentine's Day gift today. He had a charm bracelet engraved with our saying on it...Je t'aime (which means I love you) in French. And it has our wedding date: 8-12-06 and Love~Aaron on it. On the other side it has the Chinese love symbol because he is a half Chinese. We try to honor his heritage alot. Anyway, thank you all so much! I really think having friends who understand what we're going through means SO much!

                      April
                      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                        Comment

                        • #7
                          Glad you are home!

                          April,

                          I'm glad you are home. Good Luck to you. Sounds like You have a great support system.

                          Kara
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:
                          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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                            • #8
                              I am so glad you are home and got to spend valentines day with hubby..
                              I hope you are feeling better.
                              'The will of God will never take you where the Grace of God will not protect you.'

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                                • #9
                                  So glad to see you are home and feeling better! I am glad you made it home in time for V-day. Hope you continue to feel better with each passing day. Hugs, Amy

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                                    • #10
                                      I am so glad you are home with that sweet husband of yours. The bracelet sounds beautiful. Hope you are feeling better.....there is no place like home
                                      Miss Bessie

                                      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                                      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                                      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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                                        • #11
                                          Thanks

                                          At this moment, staying optimistic is really HARD. I was released from the hospital the day before Valentine's Day. Here's what has happened since. On Valentine's Day, I was hurting so bad that I took three Percocet 7.5 (because I am allowed three per day).

                                          The hardest part to work through all this is that my bladder CONSTANTLY and I really feel like ripping it put someday. Now, I am dealing with severe left hip joint pain. Does anyone know if that is related to IC or is it another ache and pain?

                                          Also, in conversation with my pain specialist he is doing my last epi's in a series of three. The first one was at L-4/5 in the lumbar spine, the 2nd was a Thoracic Epidural and the third I think he is doing on my left hip. Also, he is wonderful about making sure my pain meds are working. If they aren't he changes them. I WAS on Lortab 10's three to four times a day for awhile, but now those stopped working and he changed me to Percocet 7.5. My next visit, he might have to increase the 7.5 to 10mg.

                                          Another thing I wanted to share was that when I was in the hospital this time, I was catheterized for five of the seven days I was there. Even though the catheter hurt and was uncomfortable, I believe that is the best I have felt since my IC diagnosis. Being catheterized (at least for me), took away the urgency, frequency and such. I still had pain, but not nearly as bad as it was BEFORE being cathed.

                                          How many of you actually do your own lidocaine/heparin instillations at home? I am trying to talk my doctor in to it, but his stance is that I need to come to the office so that they can make sure I am completely clean with betadine down there. I feel a little insulted because this doctor MUST somehow think I would not be capable of making sure my you know what is sterile. I am SO tired of going to the uro once a week for those instillations.

                                          Anyway, sorry this is SO long...I just needed to rant a little, well a lot! Opinions are welcome...especially from those of you who DO you OWN instillations at home. How did you convince your Uro to let you do that?
                                          Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                                            Comment

                                            • #12
                                              I do the instills at home now. However, for YEARS I had to go to my Dr. 3 x a week to get them done. It was a major inconvience! The worst problem was if I needed a rescue instill over a weekend. I had to go to the Fast Track at the hosptial to get them, and if they were closed (like after hours or holidays), I had to go to the actual ER to get them and wait for hours on end for the heart attack patients and car accidents etc to go first. It was ridiculous, when I was perfectly capable of doing them at home!

                                              My Dr. had the same objections as yours. Plus, I got UTIs so freq that he was afraid I would get even more by doing them at home. I just kept at him, and finally told him to let me try it and if I had a sudden increase in UTIs over what I was getting by coming to him, then we could always return to doing it in the office. So, he agreed to a one month trial, and I have been doing them at home ever since. He did tell me to get the home UTI test strips to make sure I didnt have a UTI before I do each instill. So, I do that. But, so far, so good!

                                              I hope and pray yours will let you do them at home too.

                                              Hugs,
                                              Amy

                                                Comment

                                                • #13
                                                  Didn't have to convince my dr. -- it was his idea, and I think more and more practices are encouraging home instillations. I have to get my husband to do mine, but most people seem to be able to do it themselves.

                                                  That's odd that they're worrying about sterlility; it's not a sterile procedure, it's just a clean procedure. Nothing pierces the skin.

                                                  Maybe the dr. you're seeing in March will let you try.

                                                  Call me any time!
                                                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                                                  Wishing you happiness and good health, and all the best out of life.

                                                  Peace, Carolyn
                                                  ___________________________________________________

                                                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                                                  On the Beach with IC

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                                                    • #14
                                                      Pain meds and Instills

                                                      Thanks guys. I have a praise to report. I called the new doctor's office yesterday and someone canceled at their other office which is only about 20 miles further than I WAS going to drive (a total of about 90 miles one way) and I am getting in on March 5th! Yay! Anyway, hopefully she will let me do them at home. Please keep Aaron and me in your prayers. When I take the Percocet and any narcotics, I get mean...and treat the one person (Aaron) who is so supportive like crap. For instance, yesterday he asked me to make him a sandwich when he came home from work. I was asleep and I snapped at him...not meaning to, but it just came out that way.

                                                      Do any of you get irritated easier when you're taking pain meds?
                                                      This is a big concern for Aaron....and addiction. My stance is that if you NEED them, you will NOT get addicted because they make living possible for most of us. Without them, I am not sure I could even move some days.

                                                      Thoughts?

                                                      April
                                                      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                                                        Comment

                                                        • #15
                                                          I think I've heard that if you take meds to live it is the right attitude. But if you live to take the meds then it could be addiction. I have a friend who has been labeled addicted to pain meds, but I think she really needs them. It is so misunderstood.

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