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  • #1

    Help Us PLEASE!!!

    Please forgive any typos here... I'm running on two hours sleep and maybe another half hour of light dozing...

    My husband woke me up in the night with horrible stomach pain; he started with diarrhea and vomiting. It was horrible, he was moaning and cussing and telling me "If this is what IC is like.... God....."

    By this morning, his diarrhea has become BLOODY and he's still in excruciating pain. I am calling his doctor's office to let them know but I will most likely then take him straight to the ER... this doesn't sound good. Usually viruses do NOT cause bloody diarrhea. It's only the nasty foodbourne bacteria that do this, like E.Coli or Clostridium. I'm even more suspicious about that because Saturday night we went out to eat and he, against my wishes, ordered his ahi tuna RARE. I never, never order anything rare at a restaurant; who knows where they got it, who's working, etc. He said, "It's a nice restaurant, they won't do anything." YEAH RIGHT. It can happen anywhere.

    So I am totally scared for him. Please, if you pray, we'd appreciate it. If you don't please just keep us warm in kind thoughts.... I'm afraid he might be hospitalized.

    And please, please don't think I'm selfish, but I have a wire sticking out of my a$$ and am supposed to have my permanent Interstim put in Friday. I am terrified that (1) I will get this disease somehow while handling Hubby, ruining the surgery schedule, (2) I will get an infection in my incision in that germ-infested ER, (3) if he is admitted, there will be NO ONE TO TAKE ME TO MY SURGERY. I have no friends who can take me, and as we all know, my co-workers hate me for some reason. Maybe I can get my father or my father-in-law to come here -- but my own dad has about at 12-16 hour drive to get here from MA.

    I am scared and upset for both of us.
    ****
    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.
    Tags: None
    • #2
      oh god jen you poor thing. If I lived near you I would take you to the hospital and help you in any way!
      I am so sorry to hear about your hubby it sounds terrible. If its any consolation my mum has a similar bug in January and there was blood in her sick so I paniked!!!
      We took her to ER and she has food poisoning and thankfully didnt have to stay in hospital!! They said the bleeding was due to an irratated stomach so perhaps this is what your hubby has but the other end????

      If it is food poisoning then you dont need to worry as its nothing you can catch but I understand what you mean and I would feel the same!

      Please let me know how he gets on and I'll be thinking of you!

      x
      Started with symptoms 2004 after a severe infection.
      Was diagnosed with IC Feb 2006 after cystoscopy.
      Diagnosed with vulvodyina and PN in july 2006.
      Dignosed with ME and IBS Oct 2006.
      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
      Also doing IC diet and regular use of heat packs.
      Still struggling with IC and controling my symptoms so looking for some help

      also recently had abnormal pap, CIN III and just had LEEP done 2007

        Comment

        • #3
          Sarojini..
          Poor thing, You sound like me if its not one thing its another..I wish I lived closer to you I would certainly help you out...
          I hope your husband does not have food poisoning or Ecoli..I lnow I had food poisoning one time and I thought I was going to die...

          I will be praying for both of you...I hope he gets to feeling better soon..
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment

            • #4
              Jen,

              You both are definitely in my prayers. I wish I lived closer to you too - you would then have nothing to worry about as far as getting to the hospital for surgery.

              Please keep us posted.

              Sending lots of prayers and hugs,

              April

                Comment

                • #5
                  That is so horrible Jen! I hope that he'll be okay. Because he eat that really rare tuna on Saturday that's what I would think it would be and if that's the case then at least you don't have to worry about catching it. I really hope that he's okay and you'll still be able to have your surgery as scheduled since you have been doing so good. I will keep you in my thoughts
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

                    Comment

                    • #6
                      Oh Jen, I agree to get him to the ER asap. I had a stomach viruse the day after I came home with my trial and started my period so I know what you mean about not wanting a nasty bug right now. I wouldn't wish that on my worst enemy. Please let us know how he is.

                        Comment

                        • #7
                          Sending lots of hugs and prayers and warm fuzzies your way! Do keep us posted!!!!!!!
                          Hugs,
                          Tracey
                          How do you eat an elephant? One bite at a time...

                          Harry arrived 2/23/09!



                          *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          IC Diet Cheat Sheet:
                          http://www.ic-network.com/diet/2009icdietlist.pdf


                          Dx's:
                          IC dx'd Nov 2004
                          Lymphocytic Colitis dx'd July 2005
                          Possible IBS
                          Current IC Meds
                          Vistaril 25mg in the evening
                          Previous IC Meds taken:
                          Cystoprotek - 2 caps 2x's a day
                          Elmiron, 100mg 3x's a day
                          Ditropan, 5 mg 3x's a day
                          Others:
                          Wellbutrin 150mg 2x's a day for Anxiety/IBS
                          Pepcid 40mg a day for GERD
                          Zytrec for Nasal Allergies
                          Align Probiotic daily for IBS

                            Comment

                            • #8
                              More prayers from Oregon. This is definitely not a good time for you.

                              Also sending gentle 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

                                • #9
                                  Oh, Jen, honey, I'm so sorry. I hope so much he gets better FAST and that nothing else bad will happen. This is terrible. You both will be in my prayers!

                                  Blessings,
                                  Lori

                                    Comment

                                    • #10
                                      Ugh! How awful for both of you. Saying prayers, for sure.
                                      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

                                        • #11
                                          Thank You all so much to everyone here for all your sharing, caring and support!
                                          < My "Bear"
                                          CurrentTreatments:
                                          Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
                                          IC Diet
                                          Hydroxyzine 50 or 100mg at night (Is restarted)
                                          Zoloft 100mg 4/8/07 (Is restarted)
                                          Klonopin 1/2 mg 4 X Day (started 3/17/07)
                                          Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

                                          Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
                                          Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

                                          My Myspace page - http://www.myspace.com/42620225

                                            Comment

                                            • #12
                                              Already been praying and will more. Take care of yourself and you hubby. I am sure someone can get you to the surgery if needed. It is times like these when we have more friends than we thnk we do.
                                              Interstitial Cystitis Stomach problems
                                              diastolic dysfunction
                                              vascular insufficency of left leg
                                              pelvid floor disorder
                                              hypothroidisim
                                              asthma
                                              bread cancer - 5yrsl. remission
                                              swollowing difficulty
                                              fatigue
                                              lots of doctors
                                              lots of med.














                                              Keep your eyes on the Lord and he will direct your paths.

                                                Comment

                                                • #13
                                                  Geeze Jen...Here comes a great big hug and I will be saying a prayer for both of you. This is just horrible. I hope he is OK (both of you for that matter.)


                                                  Please keep us udated when you can...






                                                  Minds are like parachutes-they ony function when they are open.
                                                  -Thomas DeWar-


                                                  ICN Newbie Volunteer


                                                  *ICN Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                                                    Comment

                                                    • #14
                                                      Kadi

                                                      -------------------------------------------------------------
                                                      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.
                                                      ------------------------------------------------------


                                                      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                                                      Source - Pinterest
                                                      "

                                                      Current treatments:
                                                      -IC diet
                                                      -Elavil 50mg at night
                                                      -Continuous use birth control pills (4-5 periods/year)
                                                      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                                                      -Pyridium if needed,
                                                      -Pain medicine at bedtime daily, as needed during the day several times per week
                                                      -Antibiotic when doing an instillation to prevent UTI
                                                      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                                                      -Dye Free Benadryl 50 mg at bedtime
                                                      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                                                      -Managing stress= VERY important!
                                                      -Fur therapy: Hugging the cat!

                                                        Comment

                                                        • #15
                                                          Of course I will pray for both of you. Drats...I wish you still lived close to me.

                                                          Sharon

                                                          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                                                          Where I can be found most days.



                                                          Link to the ICN Patient Handbook:
                                                          http://www.ic-network.com/handbook/

                                                          Link to the IC Diet:
                                                          http://www.ic-network.com/diet/


                                                          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                                                            Comment

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