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Possible IC but connection with IBS...any advice appreciated!

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  • Possible IC but connection with IBS...any advice appreciated!

    I have had IBS- c for over a decade and have learned well how to cope with it. Last June I started having severe pain over what felt like my ovaries but it would also cause massive pain in my colon under my breast bone and between my ribs .. I can only describe it as though it felt like my whole colon was being twisted viciously and it could major acid pain as well. The connection though to what I now think is ic came with an urge to urinate that was vicious and then heavy lower abdominal cramping. I had never experienced any of this with just IBS alone. I should also state that prior to what I now think is ic, I had a lot of infections...I.e. BV and yeast...over and over and with several rounds of antibiotics over the. Purse of a few years. I have been through blood tests, colon and endoscopy, stool tests. Been to the urn and gyno. The urn thinks this is what I may have but is loathe to do the distention/cytoscopy thing...problem is that my IBS symptoms are so much worse and think it is due to possible ic. I am taking femdophilus caps, probiotics and bladder ease with kava (per my naturopath)...I have been to many different doctors over the past year because of the extreme changes since this possible ic and the pain and intensity it appears to be causing to my IBS. For my IBS I take milk of magnesia and have done so for over 10 years. My questions are 1. Have any of you experienced a severity in IBS symptoms and how do you control it? And 2. I am so desperate to fix this that I am at least thinking of getting the hydro/cyst done...he already did a bladder fill with water and said my bladder looked pretty good in that regard...but now what? I don't have as much the urgency as pain and when it's painful it is painful. I am going to see a urn gyno this Monday and am considering going through with the tests to see if I do have ic. I have a friend who raved about DMSO but I don't want to create more pain for myself. Can anyone relate or shed light on the connection with these two issues and any personal experience? Many thanks in advance!

  • #2
    Before my IC started, I had IBS symptoms for a few months. Mysteriously, my IBS seems to have disappeared for good but I'm left with the IC so I'm not all that lucky!

    Regarding IC, I think you definitely need an actual diagnosis. Once you have that, you can start trying different treatments like Elmiron or something like Elavil, anti-histamines, etc. There are a lot of different treatments. Personally I wouldn't do DMSO right off the bat without trying less invasive things first. But that's just my opinion.

    Regarding a connection between IBS and IC, I'm not sure anybody knows why. But I think it may have to do with a loss of the lining in the bladder as well as in the digestive track. Possibly due to chornic inflammation. Also, those areas share a lot of nerves, and those nerves can bring inflammation from one area to another. But I think there are a lot of guesses out there as to why.

    Take care. I hope things turn around for you!
    Last edited by ICNDonna; 04-11-2011, 06:25 AM. Reason: Removed sales site information.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

    [/COLOR][/SIZE][/FONT]

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    • #3
      Thank you so much. I tried elavil last night and it seemed to work well but am concerned about weight gain. I'll keep searching for the right Meds. Thank you for the referral to heather's site!!

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      • #4
        Originally posted by jacqueline76 View Post
        I have had IBS- c for over a decade and have learned well how to cope with it. Last June I started having severe pain over what felt like my ovaries but it would also cause massive pain in my colon under my breast bone and between my ribs .. I can only describe it as though it felt like my whole colon was being twisted viciously and it could major acid pain as well. The connection though to what I now think is ic came with an urge to urinate that was vicious and then heavy lower abdominal cramping. I had never experienced any of this with just IBS alone. I should also state that prior to what I now think is ic, I had a lot of infections...I.e. BV and yeast...over and over and with several rounds of antibiotics over the. Purse of a few years. I have been through blood tests, colon and endoscopy, stool tests. Been to the urn and gyno. The urn thinks this is what I may have but is loathe to do the distention/cytoscopy thing...problem is that my IBS symptoms are so much worse and think it is due to possible ic. I am taking femdophilus caps, probiotics and bladder ease with kava (per my naturopath)...I have been to many different doctors over the past year because of the extreme changes since this possible ic and the pain and intensity it appears to be causing to my IBS. For my IBS I take milk of magnesia and have done so for over 10 years. My questions are 1. Have any of you experienced a severity in IBS symptoms and how do you control it? And 2. I am so desperate to fix this that I am at least thinking of getting the hydro/cyst done...he already did a bladder fill with water and said my bladder looked pretty good in that regard...but now what? I don't have as much the urgency as pain and when it's painful it is painful. I am going to see a urn gyno this Monday and am considering going through with the tests to see if I do have ic. I have a friend who raved about DMSO but I don't want to create more pain for myself. Can anyone relate or shed light on the connection with these two issues and any personal experience? Many thanks in advance!
        I didn't start having IBS symptoms until about year after starting the Elmiron, and at this point I'm fairly certain that I had them because of the Elmiron. To try to stop those symptoms I just took about 3 Immodium daily, just dealt with the pain (trust me at times it sucked). However I may be able to help you with some of your other things. I've been told that Milk of magnesia is not good for IC (although for short times it can help) but taking it daily is not good and that could be causing some of your irritation right there. For the acidic symptoms, eat a banana - I get acidic symptoms often daily even now and banana's seem to sooth it. Even now with my IC urination issues seemingly in complete remission - I do still get pain in my lower back, stomach, and lower stomach... for this do you ever try sitting differently? I've found with mine if I move in different ways i can usually find a comfortable position that make it hurt less. For you, you could probably just take medication for it too, to help with the pain (for me, medication usually has side effects that aren't the most pleasant so I avoid them like the plague now)...

        Just know that there are others out there like you, rooting for you to get help..

        -BrandyDW
        Diagnosed with IC when I was 14 (in 2003)
        Diagnosed with IBS when I was 19 (in 2008)
        -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
        -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
        -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
        -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
        -Did instills weekly for over a year (after that I got chronic uti's)
        -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
        -Medications that I'm taking right now that help with IC symptoms:
        -hydroxyzine hcl 25mg
        -amitriptyline hcl 35mg
        -Cyclosporine (unmodified) 400mg (dosage subject to change)
        Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

        -Brandy

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        • #5
          For me my very worst time was before diagnosis when I didn't know what was happening to my body. Once I found out what I was dealing with, I was able to begin treatments and make some diet adjustments to help me feel better.

          My suggestion is to consider being tested.

          Warm healing thoughts,
          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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          • #6
            Oddly, and I mean very oddly, the meds for IC have helped significantly with my IBS as well. Also, I have noticed that if one flares, so does the other. It's like a 2 for one deal sometimes. Usually, it'll start with the IBS and that will cause me to pee more...etc. Then I take some pain meds and that kind of stops the IBS and slows down the peeing. Make sense? Trust me, you'll find some odd things that will help both. Diet has been essential for me to control most all of my symptoms along with physical therapy.
            Your Friend,
            Michelle

            Diagnosed: 10/16/09

            Elmiron, 100mg 2x per day
            Imipramine, 10 mg per day
            Diazepam 10 mg for sleep
            Zyrtec
            Zovia, birth control (ongoing-no periods)
            Probiotics
            Hydrocodone, 2 pills a day (at any time of day)

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            • #7
              Thank you all!

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