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  • #1

    I have a 4 month old son & IC...help

    My IC started w/pregnancy and no one believed me. "You're pregnant, of course you're peeing a lot"-but I KNEW something was wrong.

    4 months postpartum I'm miserable and can barely leave the house. I want my life back desperately and want to be a good mother to my son.

    Please, anyone...suggestions?
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!
    Tags: None
    • #2
      IC and a little was is so rough, I know. My IC was so out of control after pregnancy I thought the same thing. Hopefully giving your body 6 months to recover post partum and then starting the medicine game you will find the right medicine combo to help you out. Sending you big hugs from one IC mommy to another.

        Comment

        • #3
          Pregnancy CAUSING IC?

          has anyone heard of pregnancy CAUSING their IC? i just don't know how else it could've happened? i am miserable and am literally at the end of my rope.
          (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

          Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

          I'd like to be on House, MD as a medical mystery.

          Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

          Connor & Mommy by the tree:


          Connor with Santa...so happy!


          I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

          Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

          I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

            Comment

            • #4
              Originally posted by verdicries
              has anyone heard of pregnancy CAUSING their IC? i just don't know how else it could've happened? i am miserable and am literally at the end of my rope.

              Anything that stresses your immune system could potentially start IC if you're predisposed to it.
              *IC-- Summer 2004; PFD--October 2005
              *Fibro--Fall 2000; CFS-- Fall 2000
              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

              Total Abdominal Hysterectomy--adenomyosis--9\08

              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment

                • #5
                  Verdicries -- First of all, are you seeing a good doctor, who has experience with IC and whom you trust? Are you breastfeeding? If you are, and are putting off taking medication for that reason, it might be time to stop.

                  If I were in your situation (and I do have an older child), I would try to get the IC treated as aggressively as possible, as soon as possible, because that baby is going to be mobile before you know it.

                  Do you have family in the area who can help out so you can get some rest? Are you working?

                  I'm not trying to interrogate you! I just feel like I don't know enough about your situation to know what to suggest. Tell us more, or PM me. I have been through almost 12 years now of illness and motherhood.
                  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

                    Comment

                    • #6
                      It is my opinion that trauma may be one cause of IC --- and I would put pregnancy in that category. It's a strain on the body.

                      Have you found the Patient Handbook? It's at http://www.ic-network.com/handbook and has a lot of helpful information. If you aren't following an IC diet, I suggest you begin today. And please, if you haven't already, see a urologist for some help with your bladder pain.

                      Sending encouraging hugs,
                      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

                        Comment

                        • #7
                          Pregnancy CAUSING IC? reply

                          I'm not breastfeeding...and I WAS happy w/my urologist until now-I think it's time to find a new one.

                          I am not on ANY meds right now (except lexapro which isn't doing a damn thing); I'm petrified to try them b/c ever since my pregnancy I have become allergic/HIGHLY sensitive to EVERYTHING. I am using bladder-q hoping to find relief. I watch what I eat and drink something to the effect of 10-13 8oz glasses of water a day.

                          I can't continue to live like this...I'm only 28 and have had Fibromyalgia/IBS since age 13...the IBS was very manageable; few flares until AFTER giving birth. The FM is controlled with tart cherry pills (work WONDERS--ask me about them if interested). This is NOT LIVING. I am practically a shut in and yes, I am depressed b/c of it. I can't work anymore .


                          Help me, I really can't live like this anymore.
                          (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                          Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                          I'd like to be on House, MD as a medical mystery.

                          Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                          Connor & Mommy by the tree:


                          Connor with Santa...so happy!


                          I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                          Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                          I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                            Comment

                            • #8
                              Originally posted by verdicries
                              I'm not breastfeeding...and I WAS happy w/my urologist until now-I think it's time to find a new one.

                              I am not on ANY meds right now (except lexapro which isn't doing a damn thing); I'm petrified to try them b/c ever since my pregnancy I have become allergic/HIGHLY sensitive to EVERYTHING. I am using bladder-q hoping to find relief. I watch what I eat and drink something to the effect of 10-13 8oz glasses of water a day.

                              I can't continue to live like this...I'm only 28 and have had Fibromyalgia/IBS since age 13...the IBS was very manageable; few flares until AFTER giving birth. The FM is controlled with tart cherry pills (work WONDERS--ask me about them if interested). This is NOT LIVING. I am practically a shut in and yes, I am depressed b/c of it. I can't work anymore .


                              Help me, I really can't live like this anymore.
                              Do you have any help at home? Is there anyone to help you with the baby, or give you a break?

                              Please write if you need someone to talk to okay? I had a severe kidney infection and infected incision when my first son was born. It lasted for weeks and I didn't have any help. It was terrible.

                              Please write and let us know how you are doing okay?

                              Hugs,
                              Moonheart
                              http://www.TheCraftyEwe.etsy.com

                                Comment

                                • #9
                                  PM me any time. Did I give you my phone #? Well, if you PM me I will send it; call anytime! I'm not that far away from you.
                                  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

                                    Comment

                                    • #10
                                      Update

                                      Thank you to everyone who messaged me w/support.

                                      I am trying valiantly to get thru this but it is not easy. My son is more & more mobile by the day (yikes!). I have no family nearby (my family lives in Northern NJ, 1 1/2 hrs away). My mom comes once a week to watch Connor while I go to PT.

                                      It's just Connor, me & Gizmo the whole day; my husband is gone from 7am-5:30pm My dog is my l'il buddy. I feel horrible for not being able to spend more time with both Giz & Connor *sigh*.

                                      Back to the bathroom. Again, thanks to everyone.
                                      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                                      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                                      I'd like to be on House, MD as a medical mystery.

                                      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                                      Connor & Mommy by the tree:


                                      Connor with Santa...so happy!


                                      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                                      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                                      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                                        Comment

                                        • #11
                                          My IC started one month after my second son was born by c-section. So I had a 3 year old and a newborn - it is stressful and certainly affects your mood. I know I was completely and totally overwhelmed.

                                          I hope at some point you'll be able to find some medications that are safe for you to take that can help you. Some of them can make such a big difference. The ones I am on have given me my life back and I thought that would probably not ever happen.
                                          Kim

                                          Diagnosed August 2001

                                          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                                          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                                          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                                          *****************************

                                          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                                          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                                            Comment

                                            • #12
                                              Sending you more hugs. I know hwo stressful motherhood and IC can be. I have a 2 year old that is beyond mobile. more like Harry Hodini's wanna be. My 11 & 14 year old are in tons of after school activities and I seem to always be somewhere with someone and by the time I stop my bladder wants to go crazy from all the things we as mommies have to do. I would also suggest maybe a mommy and me class where you meet other parents and have a support system that may help you on bad days with Conner. Maybe a high schooler who will come after school for a couple hours and you can rest until hubby comes home. I also think trying some IC meds may help out some as well. We are all so different and finding the right med combno may take some time to do.

                                                Comment

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