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Post by omaklackey on Nov 1, 2011 23:48:24 GMT -5
I have been to busy to post my success so this will be a quick post but I'm now doing the instills about every other day, or every two days. Its great! I'm sleeping!! (that's even greater) and its amazing that I can watch a movie with my kids and only have to run out once during it for a bathroom break. Taking the pills four times a day is tricky with my busy/hectic/crazy life right now. MUST BE FAITHFUL!
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Post by semicolon on Nov 2, 2011 19:03:13 GMT -5
That is great news! I have been following your thread because I still don't know what is going on with my bladder. I need a new regular ob/gyn since I don't want to go back to the one who said I couldn't have endo, and I found a practice who has a urogyno a couple towns away. I'm hoping their practice might be a bit more progressive with her on board.
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Post by omaklackey on Nov 2, 2011 19:25:50 GMT -5
Have you gone on the IC network site? They have a list of doctors they recommend for IC. It might be a good idea to look and see if there is one close to you.
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Post by semicolon on Nov 2, 2011 19:50:01 GMT -5
I'm still not convinced I have IC, but I thought having one in the practice I go to couldn't hurt! She was not on their registry (not too many choices in NH) but I think she is new. I'm trying to wait a bit to see what my body is doing before jumping to any conclusions (and emotionally, I need a break from it all!).
Btw, loved your Halloween costume!
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Post by omaklackey on Dec 24, 2011 15:02:16 GMT -5
My hubby is working Christmas EVE and DAY so we celebrated Wednesday. I had the worst flare of my IC yet. I can't get a good therapeutic drug level going cause my pharmacy sucks so bad that every time I run out of something its literally a week and a half to refill it. So frustrating!! So Christmas day for us was Wednesday (we totally surprised the kids with the early Christmas) and I spent the day on the couch or bed with a heating pad absolutely miserable. I had one dilatid left from my surgery and I used it to sleep that night. I was up about every hour all night long, the longest stretch of sleep I got was 630 to 8. Its funny cause I was used to that and now that I know what a good nights sleep is like... ugh! It felt like my worst period cramps which is so awesome since I don't have a uterus anymore. My bladder instills which usually work I was having to do twice a day and it was really hard to keep them in long enough to do their job. I can't believe with all the endo stuff, I'm now dealing with this. Its uncool
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Post by omaklackey on May 15, 2012 23:07:46 GMT -5
I had been in a beautiful IC remission until yesterday. I started getting in a whole lot of burning pain after I peed. I finally realized after a whole day of drinking like crazy that maybe it wasn't just a flare. Turned out I had a UTI and it was starting to back up to my kidneys a little bit judging by the amount of pain I'm experiencing right now... So Bactrim for ten days and I'd better get some live yogurt after it. I'm just glad it wasn't my IC " flaring" but is fixable. Apparently it may cause my IC to flare up though so that's a bit of a bummer. I was enjoying life without a million trips to the toilet. (like every commercial break watching TV) I also don't have my Lidocaine, or my Heparin so I can't do any kind of Instills. [glow=red,2,300] GRRRR[/glow] Stupid pharmacies and the stupid pharmacists who don't know how to use their computers. (and yes I'm bitter)
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Post by chibineko717 on Jul 9, 2012 18:15:57 GMT -5
Karla, Dr. M diagnosed me with IC, but didn't say anything about it at my post op. I go in for my second post op next week. I think the surgery really aggravated the IC so I am always up all night. How has Dr. M addressed your IC?
My friend got me You Don't Have To Live with Cystitis and it lists some foods to stay away from like many acidic fruits and food high in tyrosine, tyramine,and tryptophan. How have you been able to keep your IC in line while having endo?
I hope you are feeling better.
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Post by omaklackey on Jul 9, 2012 20:17:30 GMT -5
Hi, Ask Dr. Mosbrucker about the home bladder instillation's. She teaches them in her office. AND yes the surgery pisses it off pretty bad! As far as foods, most of the worst of the symptoms can absolutely be managed by diet. The IC network has great suggestions for diet and drugs etc. Also I'm on a muscle relaxant, Hydroxyzine, and Tramadol for my IC and Pelvic issues but the treatment that works is the home bladder instillation's. Here is the link for IC network! Check out their diet page as its got great suggestions for safe hot drinks, and safe cold ones. www.ic-network.com/forum/forum.phpI have had such good succes with the instillations and drugs that I know only get up once or twice right before sleep and then sleep through the night. Its pretty awesome!
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Post by 1234 on Oct 14, 2012 9:27:46 GMT -5
Quick question in IC. Dr. Belizan prescribed me a week long dose of nitrofuritoin (sp?) when I went for my postoperative appt. I've googled, and it seems to be an antibiotic that is often used for IC. Can't quite figure this out--how would an antibiotic, which kills bacteria that causes inflammation, treat an autoimmune condition of inflammation? I feel like I am missing something fundamental here.
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Post by semicolon on Oct 14, 2012 9:39:51 GMT -5
Hmm, I get your question. Did he excise any endo from the bladder, and/or were you on a catheter for a few days? I'm wondering if it's more a preventative thing following surgery, rather than an IC management strategy. Maybe you just need ask his rationale on that.
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Post by omaklackey on Oct 14, 2012 9:45:58 GMT -5
I'm not sure why he put you on that? I would suggest asking the at http:/www.ic-network.com as they may be able to help you. They also have a list of doctors to go see. I wouldn't necessarily assume your endo doctor can help you with the IC. Endo can definitely cause it, but its not otherwise related. Find a doctor that can get you on Bladder Instillation's as they are by far the best treatment. I only do mine about once a week. I'm only on the hydroxzyine for my IC otherwise, which is an anti-histamine. The histamines are believed to be causing the inflammation in the bladder.
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Post by 1234 on Oct 14, 2012 10:11:15 GMT -5
Thanks to both of you. Yes, Semi, I had endo removed from the bladder and was on a catheter. I actually swelled so much from the cystoscopy that I couldn't pee without a catheter for a while. So damn painful. I bet that was the reason, not the IC. I'll check at my next appt.
Thanks for the info, Omak! I haven't started to figure out what to do about the IC yet, but will certainly use those resources. Thank you!! I sort of want to wait and heal from this surgery and see where I am, so I can know the effects of what I am trying. I will keep coming to you for answers as I work on this.
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Post by omaklackey on Oct 14, 2012 15:05:14 GMT -5
So I looked my that drug, its for preventative or recurrent UTI's. I imagine he just gave it to you since you did have a catheter and to prevent a UTI. However be aware if you start having a lot more peeing issues than usual it can be very irritating to some people with IC. Also diet is a huge factor in controlling IC. There is a great list of some of the agravators in the IC network and I have posted some of them before on this thread. Sometimes things that bother one person are okay for others. I noticed that anything Citrus, oranges, lemon etc. is instant hate for my bladder and you will find other things that are like that. Sometimes its things that are "healthy" so be very aware of what you eat and what causes your bladder to get angry.
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Emily
Full Member
Posts: 148
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Post by Emily on Jul 31, 2013 17:03:14 GMT -5
About a month ago, I saw a Urologist because I have been having really random bladder pain/frequency and had some endo removed from my bladder. When my bladder flares along with my endo, it is truly debilitating and my boyfriend has to carry me to the bathtub or to bed. She found blood in my urine and based on my symptoms she wants to do a cystoscopy and try a med called Vesicare. I stopped taking the Vesicare after about 2 weeks because of side effects and I have the cysto and a CT scan with IV dye coming up next week. She opted for the cysto without hydro at first just to be conservative, which I agree with. I have also been trying to cut out acidic things from my diet. So my question is for those of you who had a cysto while awake. Did you need any down time? My doc said that she recommended that someone drive me home and I would be a little uncomfortable, but fine to go straight to work. I took the day off just in case but am wondering what other ladies did. Thanks!
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Post by omaklackey on Jul 31, 2013 20:28:59 GMT -5
Cystoscopy is fine, no down time. Its a very small camera on a catheter. I won't lie, catheters if you have IC are uncomfortable! But considering the pain we live with its not bad. Ask for Lidocaine jelly on the catheter before they install it. (demand it, if you have to!) it will help! However as a warning many people do not get a diagnosis for IC without the Hydrodistention. I was one of those and it caused a lot of issues for me having that delay in treatment and a diagnosis!
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