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  • For April

    Please keep our ICN member April Chen in your thoughts and prayers. She had to go to the ER because she couldn't urinate for 32 hours; then they admitted her to treat her for dehydration; and now she's just been told that she is septic with some kind of bacteria in her blood. She is still in the hospital.

    April and her husband Aaron don't really have any extended family nearby, so this is even harder on both of them. April is only 26 and is still a newlywed.

    I hope you'll all keep April and Aaron in your hearts.
    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

  • #2
    Carolyn

    I will pray for her too. You are right about things seem to be harder when family aren't near bye.

    Trishann

    Comment


    • #3
      Will keep April and her husband in my prayers

      Please keep us posted on April.

      Thank you.
      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

      Comment


      • #4
        She will definitely be in our thoughts
        ****
        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.

        Comment


        • #5
          *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


          • #6
            Will be praying ....

            for her and husband. That must be really painful on top of having IC. Do they think it's from a reaction to a U/F med (Vesicare, Detrol)? I've heard that can happen. Most likely her bladder was so inflamed, she couldn't go. I don't know... so many people suffering. I don't understand why!

            Everyone have a good day!
            Dani


            -Bladder surgery to correct reflux-'68
            -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
            -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
            -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
            -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
            PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
            -DX'd with IBS in 2000
            -Rhabdomyolysis in 2001 (has not returned)
            -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
            -DX'd with TMJ in 2000-wear splint
            -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
            -DX'd with Epilepsy -2000
            -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
            -DX'd with Fibromyalgia (2006)

            Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

            Comment


            • #7
              coming their way
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...
              www.myspace.com/patricia_luvs_matt


              Patricia

              In Memory of My Father (Lawerence) 1/25/2007

              Procedures:
              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996


              Me and my kids


              Taylor (my daughter) Me and my daughter My son Cody and Taylor

              Comment


              • #8
                Prayers going up for April and her husband. Thank you for letting us know. I really hope she gets better soon. Do you know if her hospital has a patient email site where we could send our get well wishes online? I would love to be able to send her an email card or something to let her know she is in my thoughts and prayers. Thanks again for letting us know. Hugs, Amy

                Comment


                • #9
                  April

                  Talked to her yesterday. I believe she has her laptop with her, so hopefully when she's feeling up to it she will see of all this. I will be thinking of her and hoping she gets some answers. Feel better soon April!

                  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.

                  Comment


                  • #10
                    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


                    • #11
                      Yes, she should be able to get online in the hospital, but she was pretty heavily medicated when I spoke to her, so she may not be up to it much. But please go ahead and PM her; I'm sure she'd be glad to know so many people are praying for her and wishing her well.
                      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


                      • #12
                        Thank you guys so much for writing me. I feel better today than I have felt in days and yes, I have been really heavily medicated...getting 50mg Demerol and 12.5mg Phenergan every three hours. Plus, last night they added the 50mcg Duragesic patch.

                        So, in the morning I am having another hydrodistention under general anesthesia here at the hospital. Please pray that this helps because today when my URO came in, he said he did not have anything else to offer me other than the hydro again. However, he said if that does not work, his plan is to talk to and persuade Tricare military insurance to pay for me to go to the Mayo clinic or somewhere else where there is an IC specialist.

                        Also, I have had my catheter out since about 10am this morning and I still have not been able to urinate at all. I feel a lot of pressure down there and it feels like I have to, but I sit there, turn the water on and nothing happens. I even tried a peritoneal water bottle with warm water and squirted it on my genital/pubic area and it has not worked either. I am at wits end at what to do.

                        Sometimes I wish I could have my bladder taken out, but then there is the whole issue of nerve pain. I am terrified about doing this because either it seems to go well...or NOT. I have read about Kara's and Lesa's stories which are completely opposite. Whereas Kara had a horrible time with it and still suffers with pundental nerve entrapment and other nerve pains from where her bladder used to be; but Lesa has experienced good success with it. She is even going back to work.

                        I have also been reading up on CellCept because it is being looked at as a possible treatment for IC when nothing else helps. I think they call that Refractory Interstitial Cystitis.

                        Please continue to pray for us. It looks as if we won't be able to go out of town for the 4th because with surgery on the 3rd, I think riding in a car for five to six hours would NOT be a good idea...so hopefully my husband won't be too disappointed. I made some plans for us to get together with a couple other Lieutenants in the Air Force and their wives. Provided I am out of the hospital, we will be making Lasagna together and playing games if my husband agrees.

                        Thanks again for the prayers. There can NEVER be enough prayers.
                        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


                        • #13
                          I am so sorry you are in the hospital again. this one is from Feb and I got confused. Is this your second hydro since you had one in February right?
                          I do hope you find some relief.
                          I really think that Lasagna is a very bad idea. You are in the hospital now from bladder pain, and can't pee. I certainly would hate to see you get admitted again for having Lasagna sending you back into another massive flair.
                          Last edited by tigger_gal; 07-02-2007, 09:04 AM. Reason: typos
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #14
                            Originally posted by tigger_gal View Post
                            I am so sorry you are in the hospital again. this one is from Feb and I got confused. Is this your second hydro since you had one in February right?
                            I do hope you find some relief.
                            I really think that Lasagna is a very bad idea. You are in the hospital now from bladder pain, and can't pee. I certainly would hate to see you get admitted again for having Lasagna sending you back into another massive flair.
                            Hey tigger gal,

                            My new recipe for Lasagna is made for us ICer's. I don't use ANY sauce with tomatoes in it. I substitute that for Alfredo and seem to do okay with that. It took some getting used to for my husband, but then he said as long as it was good for my IC and wouldn't cause a flare, then he could get used to it. He really has done well in accommodating my needs as far as changes in our diet and the way I cook for us.

                            My first hydro was in January and my URO wants to do another one tomorrow morning (Tues.) because it seems that I was a little better for a while after that and my epidural nerve blocks, that he wants to take another look at my bladder. He also wants, this time, to take some pictures of my bladder so I can send them in to SSDI with a comparison of a normal bladder. I think this might strengthen my appeal.

                            I have not eaten anything from the hospital food in the past week since being here because everything they serve is a no-no on the IC diet. I even asked for the dietitian to come here and talk to me. Well, she did...but nothing was able to be changed. So, between friends from church, my family and my wonderful husband...they have brought me "safe" food to eat usually for lunch and supper. I don't normally eat breakfast because it's just not my thing.

                            There is something I am curious about if anyone knows the answer. I was catheterized from last Friday until this morning around 8am. They removed the catheter by order of my URO to see if I could urinate. Well, by 9pm, I had not urinated ALL DAY and I had been increasing my fluid intake, my bladder felt hard, full and painful. My RN called the URO and asked if I could have my catheter back or if she could do an in and out cath to drain my bladder because I was so uncomfortable that Demerol and Phenergan plus Skelaxin and Valium were not making me more comfortable because I just needed to PEE. The URO said I could not have it back and then they had to call back and ask if I could get a peritoneal bottle with warm water to squirt down there. Anyway, does anyone know the rationale of not letting you have the cath back if you can't urinate?

                            Thanks for everything and always being "there"!
                            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
                              12 hours is a VERY long time not to void, and most hospitals have a protocol after removing a foley, and in my experience that protocol is 6 hours, then in and out cath. Something is wrong with this picture. How much longer do they want you to wait?? You certainly can't go without urinating til you have your hydro tomorrow!!!

                              Tell the nurse, NOW, that you have to be straight cathed...it's dangerous to leave you like that. It's YOUR body, the nurses job is to get that cath order...ring her on the call bell and tell her your friend the RN said you can't let her go any longer without peeing!

                              Sheeeeeeeeeeesh!
                              *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

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