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  • #1

    Interstim for IC & Diarrhea

    Has anyone had Interstim to help with both IC and diarrhea?

    My new uro is recommending Interstim - I currently have a trial scheduled in October. I am not 100% sure yet that I'll go through with it. I am researching everything and understand the risks. I've read articles talking about how it can help diarrhea, but can anyone share any experiences with me?

    My IC is mainly retention - I am considered to have a neurogenic bladder, and in one article it mentions Interstim has shown to help only 25-50% of people with a neurogenic bladder. I also have frequency and urgency - but my biggest issue has always been pain stemming from a bladder that is never fully empty.

    I've had IBS all my life but have had ongoing, chronic diarrhea with accidents since last December. Any feedback would be great!
    Conditions:
    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

    Medications
    Elmiron 3x day
    Trazadone at bedtime
    Tramadol as needed for pain
    Monthly B-12 injections
    Continuous Birth Control (even though I had a hyst, to control cysts)
    heating pad, hot epsom salt baths, strict IC diet
    Interstim implant 9/11
    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

    Failed Bladder Treatments
    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching
    Tags: None
  • #2
    Hi, Kathi ~

    I was just going to post the question you asked and decided to research the site a little first. I must have missed your post somehow. (I think when I don't get to check in, the site will only show the last 100 posts.)

    I have IC with retention problems and pretty bad urethra pain when the urgency strikes. I also have fecal incontinence and my uro/gyn has suggested the Interstim. Right now I'm controlling things with 1/2 Imodium each morning and 3 stool softeners each evening. (Quite a combo, huh?) It still constipates me (rock hard poo) which sure aggravates my IC but I'm able to go every day. Sorry if this is too much info.

    Would love to have your input on how you came to your decision for the trial. You may PM me if you prefer.

    Sure hope all goes well for you and you have great success!

    Blessings,
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment

    • #3
      Hi Nana!

      I'm glad to know that I'm not alone, but sorry to hear that someone else has my same problems. It's no fun.

      I'm still not 100% sure I'm going to go through the trial of Interstim in October. It scares me. My bladder is always painful and uncomfortable - but I can live with it. The diarrhea, I can live with. The fecal incontinence, I can't handle - this week I had an accident at work that was so humiliating.... I would do almost anything to make sure that doesn't happen again. So the idea that the Interstim can help my bladder - great! The thought that it could resolve the incontinence is really what is pushing me towards considering the trial. I am at the point where I can hardly leave home, which means I can hardly work. I have several accidents per week.

      I've had all the bowel tests - colonoscopy, endoscopy, CTs, pill camera, stool tests, celiac tests, allergy tests, etc. Everything is 100% normal. I also have PFD - and although I've had pelvic floor therapy in the past, the thought is now that the PFD or else the pelvic nerves are causing the incontinence, and maybe even the diarrhea. I'm going a clinic in MN that specializes in pelvic floor issues. I'll see what they have to say. Everyone around me (mom, hubby, neurologist) is pushing me to wait on the Interstim. But I want a life, and the possibility that this could work has me leaning towards going through with the trial. It's such a tough decision.

      I'd be happy to talk more if you'd like!
      Conditions:
      IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

      Medications
      Elmiron 3x day
      Trazadone at bedtime
      Tramadol as needed for pain
      Monthly B-12 injections
      Continuous Birth Control (even though I had a hyst, to control cysts)
      heating pad, hot epsom salt baths, strict IC diet
      Interstim implant 9/11
      Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

      Failed Bladder Treatments
      Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

      Comment

      • #4
        You have a difficult decision to make. If you do decide to go for the trial, you'll know if it helps with the incontinence problem.

        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

        • #5
          interstim

          Originally posted by KathiB View Post
          Hi Nana!

          I'm glad to know that I'm not alone, but sorry to hear that someone else has my same problems. It's no fun.

          I'm still not 100% sure I'm going to go through the trial of Interstim in October. It scares me. My bladder is always painful and uncomfortable - but I can live with it. The diarrhea, I can live with. The fecal incontinence, I can't handle - this week I had an accident at work that was so humiliating.... I would do almost anything to make sure that doesn't happen again. So the idea that the Interstim can help my bladder - great! The thought that it could resolve the incontinence is really what is pushing me towards considering the trial. I am at the point where I can hardly leave home, which means I can hardly work. I have several accidents per week.

          I've had all the bowel tests - colonoscopy, endoscopy, CTs, pill camera, stool tests, celiac tests, allergy tests, etc. Everything is 100% normal. I also have PFD - and although I've had pelvic floor therapy in the past, the thought is now that the PFD or else the pelvic nerves are causing the incontinence, and maybe even the diarrhea. I'm going a clinic in MN that specializes in pelvic floor issues. I'll see what they have to say. Everyone around me (mom, hubby, neurologist) is pushing me to wait on the Interstim. But I want a life, and the possibility that this could work has me leaning towards going through with the trial. It's such a tough decision.

          I'd be happy to talk more if you'd like!

          Kathie, just out of curiosity, have you ever had a defacogrpahy test done, re your bowel problems?
          I also have fecal incontinence to some degree, and that was the test that was suggested to me.
          It shows how the muscles are working together in the rectum and I think also in the rest of the pelvic floor.
          It' done using an MRI, so it's pretty non-invasive. I had it done a while back and it showed that my rectal muscles are not working properly,(not in sync), so I was given a referral for PT of that area.
          So far I have only gone once due to all sorts of other problems, but I will try again and see if it helps.
          I hope you find what works for you.
          Good luck with the stim. trial.
          Laurie

          Comment

          • #6
            Hi, Kathi ~ Unfortunately it seems like we're actually not alone! I've had the Anorectal Manometry and Anal Ultrasound. These tests lead to the Defacography test that Laurie mentioned. My results showed my rectal muscles are basically shot. There is a fairly new procedure possible (the Secca procedure) that only one doctor in my area performs and of course she is out of my network. I'm thinking of appealing my insurance before I consider the Interstim but I've read that it is helping with FI as well as Urinary Incontinence. Regardless of how successful the Interstim "may" be, reading about the actual negative results make me cringe. I've already been in that extremely low "percentage" of those affected negatively from at least 2 procedures/surgeries and the thought of being in that percentage for the Interstim is unnerving for me. It's such a big decision for us and yet our doctors do it all the time. I trust my doctor explicitly but I'm still gun-shy of that particular machine.

            I totally understand your frustration about embarrassment. Oh, my....I hate the thought of going anywhere when my symptoms aren't controlled. It's just not as acceptable as urinary incontinence or even being sick to your stomach that's for sure. As I mentioned, I'm taking Imodium and stool softeners which keep the "leakage" under control but makes things "rocky", ha ha! Still better than the diarrhea type. Can you ask your doctor about trying that? I could actually live this way so much easier than thinking of me being possibly disabled with the Interstim. Just so difficult to make that decision yet.

            I appreciate any comments/suggestions from you or anyone with regards to this helping the FI.

            Take care.
            Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

            11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
            8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
            8/2010 Surg gallbladder
            TREATMENTS (updated 4/15)
            IC Diet since 8/2009 (Able to vary 4/15)
            Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
            Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
            Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
            *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
            Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
            PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

            Comment

            • #7
              Hmmm... well, I never had fecal incontinence, really, although when my IBS flared really badly some years ago I did have a few accidents (luckily, I was not working at the time and they happened when I was at home, but still humiliating for a woman in her first year of marriage, as you can imagine).

              I DO, however, have the Interstim, and interestingly, I have noticed that it has helped both my bladder and my IBS. I rarely have that horrible diarrhea anymore. I noticed a difference in my frequency/urgency due to IC first with the Stim, but after several months with it, I thought, "Hey, I haven't had diarrhea in forever!" I told my urologist about this and he said that he'd had a number of other patients report the same thing. Certainly not all of his InterStim patients had this result, but a decent number did.

              Sooo... it is possible it may work that way in some patients. However, the Interstim is a commitment, and it is neurosurgery (albeit a fairly minor one as far as neurosurgeries go) so it should not be taken lightly. Get all the facts and try everything else first - I did. I could list the meds, instills, TENS units, PT sessions, etc... but we'd be here forever.

              I just wish the thing worked better for my pain situation... but I'm really quite happy to be out of the bathroom as a start! I went from 30-40+ times a day down to about 10 on average after the Stim.
              ****
              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

              • #8
                Hello ladies!

                It sounds like I need some more testing. I am being referred to a gastro clinic that has a pelvic floor speciality - they will do all of the testing on the fecal incontinence. I am pushing to get in quickly - so that I can make a decision if I need to postpone the Interstim trial (now sched. for late October). I am scared of the Interstim and don't want to jump into it, yet at the same time I don't yet want to give up my trial appointment - because what if it does help? And what if the testing shows I should go through with it, then I don't want to wait several months to get an appointment. I have been 'randomly pooping' liquid stool for 10 months now and I can't take it any more. That's on top of the retention and regular bladder infections. I'm a mess. I will keep you all posted.
                Conditions:
                IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

                Medications
                Elmiron 3x day
                Trazadone at bedtime
                Tramadol as needed for pain
                Monthly B-12 injections
                Continuous Birth Control (even though I had a hyst, to control cysts)
                heating pad, hot epsom salt baths, strict IC diet
                Interstim implant 9/11
                Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

                Failed Bladder Treatments
                Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                Comment

                • #9
                  Hi, Kathi ~ I really understand your situation with tests/trials and your hesitation with the Interstim. It's sure a hard call. I'm with you, this is just awful and I was thinking about it wondering how it'll be when it's me in the hospital instead of my Mom someday since most hospitals are so interested in our bowel movements and the minute they see some form of constipation they want to pop us some stool softeners. They sure will create a mess for themselves with me!

                  I don't know if I mentioned the Secca procedure. I'm still wondering if that would work for me. You can Google it for more information.

                  I'm sorry I couldn't reply sooner....I've been staying with my Mom continually in the hospital for the last 11 days and 5 days at another hospital prior to that. While I was with my Mom I ran out of my Imodium and my problem is already creeping back (we just returned home today)....the good thing about the hospital stay is that I've been off my feet a lot (except running to the bathroom since her room was the farthest away) and eating only IC friendly foods....this has made my IC symptoms better.

                  Sure hope you get the tests completed soon so you have time to make up your mind about your trial with Interstim.

                  Take care....
                  Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

                  11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
                  8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
                  8/2010 Surg gallbladder
                  TREATMENTS (updated 4/15)
                  IC Diet since 8/2009 (Able to vary 4/15)
                  Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
                  Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
                  Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
                  *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
                  Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
                  PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

                  Comment

                  • #10
                    Well, I had the manometry, anal ultrasound, defography (sp?) and some nerve testing done last week - I have a very, very minor exterior sphincter muscle tear, likely from childbirth. However the dr. specifically said it was not enough to cause the fecal incontinence. I had another accident at work yesterday. Sigh. So at this point, I'm going through with the Interstim trial. My fingers will be crossed the whole time... Hopefully it will work out, like it did for Sarojini.

                    Nana and Bubbe1, how are you doing?
                    Conditions:
                    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

                    Medications
                    Elmiron 3x day
                    Trazadone at bedtime
                    Tramadol as needed for pain
                    Monthly B-12 injections
                    Continuous Birth Control (even though I had a hyst, to control cysts)
                    heating pad, hot epsom salt baths, strict IC diet
                    Interstim implant 9/11
                    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

                    Failed Bladder Treatments
                    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                    Comment

                    • #11
                      interstim

                      Originally posted by KathiB View Post
                      Well, I had the manometry, anal ultrasound, defography (sp?) and some nerve testing done last week - I have a very, very minor exterior sphincter muscle tear, likely from childbirth. However the dr. specifically said it was not enough to cause the fecal incontinence. I had another accident at work yesterday. Sigh. So at this point, I'm going through with the Interstim trial. My fingers will be crossed the whole time... Hopefully it will work out, like it did for Sarojini.

                      Nana and Bubbe1, how are you doing?
                      Hi Kathie,
                      Well, I'm glad all that testing is over. I'm sure it was a real pain in the butt. I wish they could have found something more helpful for you, but hopefully, the interstim will do the trick.
                      As for me, not so much, uh, leakage this month. I don't know why it starts and I don't know why it stops,(though constipation is definately a factor in causing it). At this point, I'm just going with the flow,(sorry, in a silly mood)!
                      Bladder is behaving pretty well,(I probably shouldn't say that!), so I'm not complaining.
                      I hope you're doing okay aside from the fecal incontinence.
                      Let us know how things go.
                      Laurie

                      Comment

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