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  • icdebbie
    replied
    Hi again!
    Can you share with me the type of catheters you do use.
    DEB

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  • icdebbie
    replied
    I agree with you 100% about Dr. Dell. We have been blessed! I read so many blogs and have talked to so many people that cannot find a Doctor that understands IC.
    I am feeling much better today . I started a flare Feb 1, 2010 . It lasted about 8 days . I was diagnosed in 2007 and stayed away from coffee and worked the IC diet for about 2 years. Then i started eating and drinking whatever i wanted and for about 9 months i was in remission and havent had to do an instill all that time. I was on no meds period. This week i started back. I mix Heparin, Sodium Bicarb , Elmiron and Lidacaine in my instills. I just started back on Enablex and i believe i will make it through this! YEA!!! I was starting to worry for a while there! LOL
    After a week of instills i am turning the corner.
    Do you have any idea how your IC might have started? What might have caused it?
    I started in 2007 doing Elmiron by mouth for 6 months and within 3 months i had no pain but i was one of the unfortunate ones that started loosing my hair. It was right after that i started instill training at Dr. Dells. I have recently had a problem drinking coffee. What kind of coffee do you drink? Its nice to read your posts . It was nice to hear that you reuse your catheters. This can get quite expensive! Have a great day!One hundred cheers to DR. DELL!
    DEB
    Have a great day

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  • L. Thomas
    replied
    You won't find an MD any better. I have been seeing Dell since 2004. I live in Sparta, TN so I have to drive about 90 miles to see him..but I would drive 900..that is how good I think he is. I did Elmiron in the instill when there was a shortage in heparin. I didn't find Elmiron helpful in controlling my symptoms. I basically had to do instills daily. I was soooo happy when heparin was available again.

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  • icdebbie
    replied
    From Knoxville Tn

    Nice to read of your success! My name is Debbie and i see a Urologist in Knoxville . He is great ! I was diagnosed in 2007 and for most of the years have been remission . Just flares here and there. I do home instills also. For some odd reason i am in a flare this week and am on my 7th day of instills. I know it will get better.Im not sure what caused my flares but i am practicing acceptance and moving on.........
    I do Elmiron in my instills. Is that part of your instill? Nice to meet you and read about your story.
    Happy that all has worked out for you!
    I see Dr Jeffrey Dell and i am very pleased being under his care.
    DEB

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  • L. Thomas
    replied
    I went for my 6 month follow up this week. There has been no progression of my IC. It appears to be arrested even though not in remission. So I guess you would say I am better since I am not worse. I am to continue instills PRN.

    I talked with him about IC and allergies. He said there was a preponderance of research that indicated a definite connection to IC and allergies. I have IC flares in September-October and March-April. I have had the total battery testing for allergies and I have very specific allergies.

    We talked about the histamine release and the reaction of mass cells. I have decided to talk with my allergist about the way allergy shots work. If they eliminate the histamine response I think I will try the shots. The way I figure it, the least I have to lose is aggravation of seasonal allergies and the most is reduction of IC flares

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  • L. Thomas
    replied
    I do not have food sensitivities. So I don’t have to worry about the diet. I had to have allergy testing before total knee replacement and when the allergist found out I had IC he did all the test for food sensitivities and they were all negative. I thought that was sensitive of him. He was familiar with IC and thought it would be helpful to me. He knew my insurance would cover it because I was having all the metal allergy testing. Normally insurance won’t cover the test until you have had “normal” treatment for allergies and it doesn’t work.

    Before I started instills, it was a problem. I felt like I had to go to the bathroom all the time. I never seemed to empty (THAT IS BECAUSE I WASN’T). I really timed myself and went every 30 mins. If I didn’t I would pee all over myself. I did pee when I had sex with my husband. It did bother me but didn’t seem to bother him. He never complained.

    Originally I was treated for OAB but all the meds did was slow my urine to a dribble and did nothing for urge or frequency. My urogynecologist diagnosis by using a “bother scale”. I had to have urodynamics testing for a totally unrelated condition 2 years after I began treatment and it confirmed IC. My urogyne says that IC is progressive but effective treatment can arrest the progress in most cases. Now have absolutely no interference with anything. I do treatments the night before I go on a trip or when I know I won’t be able to get to a bathroom easily. Other than that I just watch for my symptoms (in signature) and when they are bothersome I do treatment. Sometimes that's everyday, sometimes it's 1 time in 2 weeks, but most of the time it is 2-3 times a week. It takes me longer to mix the meds than do the instillation.

    I don’t know where you live but I would check around on the site and try to find someone in your area that has found a good MD. Most MD's don’t know enough about IC to associate it with mild symptoms. I live in TN and I drive about 90 miles to my urogyne.

    If you are not relieved from your symptoms I would keep trying to find someone that could help.

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  • cc_orchids
    replied
    Question for L. Thomas

    L.

    I have a few questions for you. I think I've had IC since May when I got a really bad case of pyelonephritis, a kidney infection caused by a urinary tract infection. I've had frequency for years (started also when I got my first UTI) but the urethra burning sensation, constant full bladder, and feeling like I didn't finish definitely started after I was released from the hospital this May. My doctor has diagnosed me as having overactive bladder but I'm going to get a second opinion. I am convinced I have IC and that it is at the early stages (i've never really experienced pain). Anyhow, I have a few questions for you because you say that your treatment only consists of home instillations. What about diet? Do you follow the IC diet as well? What about in other aspects of your life? How does IC interfere, if any, with social gatherings and intimacy (you don't have to answer that one if you don't feel comfortable)? Your story is just so encouraging, I just want to believe that I can also be another IC success story.

    Thank you,
    Claudia

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  • sandramac
    replied
    Great post . Well written. :woohoo:
    Hugs Sandra

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  • ICNDonna
    replied
    I learned how to self instill in one visit. My uro's nurse was a good teacher and told me if I had questions I should call.

    Donna

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  • L. Thomas
    replied
    I think 2 visits will be enough. The third visit was more or less an evaluation of how the instills were working and how to draw the meds from the vial into the syringe. I know you won't have problems if you have a nurse a home that you can ask questions about mixing the instills. Learning how to self-cath is basically practice. You won't believe how simple it is after a month. I can't tell you how scared I was. It took me more than a week thinking about it before I decided to try it. I knew that the instills were working but I also knew how incredibly expensive it would be if I had to drive 180 miles 3 time a week. PM me if you have questions I will be glad to help. It have tried to make the instructions as clear as I can but if you have any questions be sure and ask.

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  • Anjita
    replied
    Hiya,
    i am very happy for you that you are feeling well and that the home installations are the treatment No 1 for you. I live in England at the moment but i am German. i am flying home today for only 3 days to go to my urologist to learn how to self catherize. Do you think that 2 visits at the doctor will be enough to do it myself? Doctors here in England are crap!!! They want around 600 USD for one installation! So i'd rather do it myself. I am very scared but i have to be brave to make it as i dont have a choice. I will be having Chondrotitinsulfat installed into my bladder. Hope it works.
    I'll keep you updated.
    I printed out your very helpful instructions..so i will try those out...
    thanks
    Take care...

    Leave a comment:


  • L. Thomas
    replied
    Updated Success Story

    Just wanted to renew my success story because I added more information that might be helpful. Thanks for reading my thread. Let me know if I can help.

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  • L. Thomas
    replied
    Originally posted by sami4 View Post
    Thomas; did your prolapse occur as the after effect of a hysterectomy? If not that, then what do you think caused it to happen?
    Sammi
    The prolapse was about 6 months after the surgery. My gyn said it was related to the ligaments that were reattached to hold the vaginal cavity in place. As you can well tell, I had no pelvic support whatsoever. He was not too surprised. Neither was I. My muscles and ligaments were just shot and had no support. I don’t think you can have a vault prolaspse unless you have had a hysterectomy.

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  • sami4
    replied
    Prolapse

    Thomas; did your prolapse occur as the after effect of a hysterectomy? If not that, then what do you think caused it to happen?
    Sammi

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  • L. Thomas
    replied
    I was evaluated in Sept for a new procedure that my urogyn learned in France last year(and is teaching a med schools now). Vault prolapse is abdominal surgery and really nasty recovery. But the technique he learned is vaginal procedure or at least for the most part. After evaluation he suggested that I wait a little longer. The prolapse has progressed more but (as insensitive as it sounds) I am not falling out yet. The surgery would probably help a little now. That sounds to me like the surgery wouldn't affect my IC that much. I can say that I can see how regular bladder prolapse repair would help IC. It took care of my stress incon. 100%. That surgery puts the bladder in the proper place. Unfortunately because of the vault prolapse my bladder is still prolapsing.

    Urge incon is a problem that does occur after bladder sling. It is not rare but it is uncommon. I think most of the bladders do calm down but the way I understand my urogyne my bladder is in shock and shaking instead of contracting. So the instills calm it down and then for a few days, sometimes a week or more, it works great.

    The vault prolapse is just like any prolapse. It is when the top of the vagina continues to fall. It may be cause from failure of the ligaments that were attached to the top of the vagina failed. Anyway if you have a vault prolapse you will know the exact day, time and place it happens. It doesn't hurt but the sensation is sort of like the game "London Bridge is falling down" and it was that fast.

    My surgery was a 6 procedure 4 hour surgery. It was total lap. surgery. I had oophorectomy, plastic surgery to repair the pelvic floor and baldder, large intestine, small intestine, uterine prolapse repair. He called it the "Blue Plate Special".
    Last edited by L. Thomas; 05-04-2007, 04:17 PM.

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