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Yesterday, I read an article in the NYT about the dangers of opiates. It reminded me of how glad I am to have chosen to be a patient of Dr. Brizman. In the fall of 2013, after 4 months of unsuccessful instills, my urologist advised the time had come for me to go on opiate suppositories for pain management. He further indicated it could be for the rest of my life. "WHAT?!" I said. "I'm in my 40s!". I left his office (never bothering to find out into which oriface those suppostories were to be inserted) and googled "alternative treatment for IC" and came across this site. Something that struck me immediately about this forum was how warm, helpful, intelligent, funny and hopeful those on it were. Prior to this, I had certainly perused the "other" website which always depressed me. I found it worrisome that those on the forum would sign their name and under it put the types of drugs and treatments they had been, or were currently on. This bothered me 1. because many had been on a lot of drugs with side effects and without freedom from IC and 2. connecting the drugs to the name made it seem like these drugs were now apart of their identity. I didn't want that for myself. Since starting with Dr. Brizman in January 2014, my symptoms have improved imensely and all without any western drugs. I feel extremely fortunate. I've had IC for over 20 years, so I didn't expect to be doing as well as I am doing a year in. I'm really glad I took the leap to try this treatment. My gut (while damaged) was correct, this approach was the right one for me. I'm making my body (and those of my family) stronger and healthier. Of course, there are lots of other reasons to wax eloquently about this treatment (another post perhaps) but I thought I would just mention how great it is to be free from pharmaceuticals and traditional modes of treatment that just mask pain and make the body weaker. Sometimes when I get down due to a flare, my husband will remind me that this treatment is a thousand times better than the alternative and I'll go "yah, your right, I could be inserting opium up my yingyang right now"! Of course, he's referring to other aspects of my life with IC before this treatment, but his point also applies to the fact that I"m drug free which I am so happy about. As an aside, my flares are becoming shorter in duration and also less intense so while the treatment is slow and can be painful, it's working!
whooo hooo!!! LOve it!
whooo hooo!!! LOve it!
I've been in treatment almost
I've been in treatment almost as long as you (Feb. 2014). And I've had IC for 18 years. I am SO happy to hear you are doing so well. That is fabulous!!! I also went the conventional route for a little while and I know this approach is better. Unfortunately, I'm in a horrific, super long flare right now so my enthusiasm for the treatment is not what it once was. I know pain is messing with my brain but I'm just having a hard time being patient when I'm losing sleep, losing hair and losing my mind. In some ways, I feel so much worse than I did before treatment. But stories like yours make me happy and motivate me to hang in there.
Hi Deir and Melinda, How are you doing Deir? I understand where you are at Melinda and I"m sorry you are in pain. This treatment can seem relentless and I sometimes lose my patience also. What I was trying to say above is that the alternative is really no better and in fact, will likely make things worse in the long run. I'm holding onto the hope that this (relatively) short term pain is for a long term gain. I know, it is hard for me the next day when I don't get sleep due to getting up to use the washroom. And doing that for nights on end can drive me batty also. It's interesting you mention hair loss. I am fretting about this very issue. Last night, I went to yoga for the first time in like 4 years. There was a mirror in the studio and there I was, in a moment when I should have been acknowledging massive improvement, shaking my head at how much hair I've lost. I didn't see it happening, but sometime in the summer I woke up and it seemed that I had a lot less hair and the ends of what I did have looked ratty. Evidently, things really haven't improved since then. I keep forgetting to ask Dr. Brizman about this but do you know why this happens? I've been pretty good about accepting no manicures, pedicures, less hair color, baths, bubbles, face creams and fancy shampoos but I've been lousy at accepting this hair loss. I do remind myself that one of the side effects of Elmiron is hair loss. I also read somewhere on here that it grows back. I've taken to wearing my hair up in a barrette to hide the loss from myself. (People say it's not that noticable?!) But yah, this treatment can be hard. I don't know if it was the same for you during the last 18 years, but my problems started intermittently. I would have what I thought was a UTI that wouldn't get better with antibotics for a few weeks then no symptoms for a long stretch and then I might have some VV that would last a couple of months and then again a reprise. Over time, the stretches between bouts would get less and then in the last few years, it got to the point that I was in almost a constant flare of bladder and/or vv and/or urethra pain. Stress seemed to play a factor. It seems to be going in the reverse now. I was in a constant flare for the first 8-10 months of treatment and then things started to let up a bit. In fact, there have been a couple of times since December where I've had very little pain for a week at a time. It certainly is getting more manageable. Plus, over the course of the year, I've seen a lot of stuff exit my body either into the toilet or through rashes and itches. Also, I had a physical through my GP at the one year mark and my blood work showed I was really healthier than my last one a couple of years ago so I'm convinced this slow treatment is working. I'm trying to stay positive (which might be easier for me than for some as I live on the Westcoast which is having an extremely mild and sunny winter) and focus on the many positive changes that have come about. But again, I hear you. When I wake up flaring my spirit sinks and some days it's hard to overcome. I find that when I'm in a flare, the pain prevents me from concentrating fully on what I"m doing. I'm less engaged. I don't get as much done at work or at home and I put less into my relationships. I believe that just as stress helped to bring it on in the old days, an absence of stress is helping it leave. The good news is I'm having some moments now when I feel like my old self (I might even say a more "authentic" old self) and I"m more engaged that I've been in a long time. One more thing, about a month ago, I also started to think that I was doing worse than before treatment and then I reviewed my intake form and promptly realized that it wasn't the case. I believe the pain I was and am now experiencing was/is different in location and feeling than what I had before treatment and thus, I'd forgotten about the pain I used to be in. None the less, it can be disappointing. Please feel free to email me directly if you need to and STAY STRONG!
Ejh, Thank you so much for that encouragement. I really appreciate it. I think because I have had this for 18 years, I just am so impatient to be set free. I pray all the time for healing. And I don't know if it's going to happen instantly (my preference!) or through this process, but I do believe that God will heal me one way or another. My IC symptoms began shortly after the birth of my first child (like when I was still in the hospital). I felt like I had a UTI and then I couldn't pee after so they had to catheterize me. It was awful. What should have been one of the best times of my life brings back so many awful memories. I struggled with symptoms and a diagnosis for a year or so and finally had a hydrodistension and got the IC diagnosis. I went to a naturopath, after trying some conventional stuff, and his diet and herbs did seems to help. I went into a long remission (like 7-8 years) with short flareups here and there, but mostly lived a normal life. Then 6 years ago, it all came back with a vengeance. It started with a flare that lasted about 6 months without a single day of relief. I've had periods of no symptoms since then, but more than anything it's been days of low symptoms. Then flares. A cycle that never ends. I had a horrific flare at Christmas time in 2013. That's when I found the Brizmans. I flew out last February. I think my hair loss early in treatment was because of detox. At least, that's what a lot of other patients have said. Now, I think it's a residual effect of my anemia, which I struggle with. Either way, it's no fun. And seems like it's just another thing this stupid disease has robbed me of. I understand about the low energy. That's one of the things I absolutely DETEST about this disease. It robs me of the motivation and desire to put into my work or into my relationships. I just want to lay on the couch. This latest flare (5 plus weeks) is in a lot of ways different that any flare I've had before. Most of the pain is very low in the bladder or in the pelvic floor and vaginal area. I've never really had pain there before (or at least not for very long). So who knows what's going on? Even Boaz doesn't really know. Which isn't very comforting. I truly am glad you are doing so well. I hope soon I can say the same. :) Looking forward to keeping in touch and following your progress. My email meansmm@earthlink.net