Progression

[creatingkarma]

I have been diagnosed with IC for 4 years now. Before then, I went through 8 years of so-called UTI's every 3 months. I can even remember having problems when I was a small child. I was hospitalized for my kidneys? when I was 3, but no one in my family can remember exactly what was wrong with me. I remember having intense pain when urinating during grade school & can remember having blood-soaked underwear quite often. My IC went undiagnosed for a long time because every time that I had a flare, I was seen by a different doctor each time in the emergency room, who passed it off as a UTI. Anyways, my 1st urologist gave me the cysto/hydro & seen the pinpoints in my bladder. He put me on a daily dose of Bactrim & told me not to drink anything with caffeine in it. I took these anti-biotics for a year & 1/2 & decided that they didn't help anyway, so I quit taking them. I seemed to have had a normal life at this point. The IC was a bother, but only when it acted up, which wasn't very often. My IC had almost zero effect on my life during this time. I could work, I could play, I could eat what I wanted & had plenty of energy left over. Then a couple years later, I started feeling a little worse & kicked myself for not keeping up with my health & going to the urologist. I decided that I needed to continue seeing a urologist, especially after my chiropractor (who's wife has IC) told me about Elmiron. It sounded like a wonder drug to me & I was very excited about it. I decided to try this new uro that my chiro talked so great about & made an appt. First, he put me on the Elmiron & my body didn't accept it at all. My nose started bleeding a couple times a day, so the uro took me off of it at my next appt. I was also scheduled to have an in-office cysto but had an infection, so the uro decided to schedule it to be done in the hospital along with the hydro & an instillation (January). Then 5 more instillations a week apart after that. Oh yeah, and he told me about the IC diet, which I immediately started & have been pretty faithful to since November. Anyways, what I'm trying to get to is, it's been almost 3 months since my last instill & I feel like crap. I felt better BEFORE I started trying to take care of myself. Before, my IC was just something that bothered me once in a great while, now I am in constant pain all day long every single day. I used to go out with my friends & boogie all night long & now I can barely walk from my car to the entry doors at walmart without my bladder spazzing out & causing me great pain. Then when I get in there, I need to sit down before I do my shopping. It is now a hard struggle to get my daily housewife chores done. I never feel good anymore. I never have a pain free day. I feel 200 times worse. I knew that there was a chance that the instills wouldn't work for me, but I had no idea that they might make me worse (if that's even what caused my relapse). I don't know what I'm asking for. I guess I'm just wondering if anyone else feels worse for trying to feel better.

Thanks,
Karma

[crystilclear]

I'm so sorry to hear that things aren't going well for you. I feel the same way you do. I can't seem to keep up with the things I used too. I have had 6 weeks of DMSO and I'm on the elmiron 3x a day, elivil 1 at night, and nulev 3x a day. It's not cutting it. I'm super stressed and have 3 kids as well. I wish I could offer you some good advice as to what has worked for me but I can't. :(
I'm waiting on a referral to see a doc at Baltimore University. I had talked to Jill and she said that it is the leading research center in the USA I think. If I find out anything worth passing on I'll definately let you know. I heard from some else that increasing elivil has weorked for her , and low levels of vallum have helped the spasms. I'm no doctor. She is lucky enough to have Doc Moldwin close by to aid in her treatment. If only we were all so lucky. You can email me at chris0310_96@yahoo.com if you need to vent or talk. I hope things get better for you and you get some much needed relief. - Chris

[Sarojini]

:grouphug:

Karma, so sorry to hear this. But I can kind of relate... my urgency has decreased, but my frequency is sort of high (although at least I go 15-20 times per day rather than 30-35 like I used to). I've been having a lot of "pain" days lately too... I am going to do another set of 6 DMSO's, and maybe ask about trying Elavil. SO -- I'm better in some ways, but not in others... I had been hoping for a more dramatic change, I guess, but it seems it is a long process...

I hope you find something that works for you!!

[teelag]

I can also relate too. Prior to my cysto, I had only 5-10 days of pain or symptoms a month...even would go months with absolutely no symptoms. I even thought about cancelling the cysto because I felt so good, but my urologist thought I should have it done to be on the safe side. Now he's almost positive it's IC, but ever since the cysto, I have had definite pain, burning, etc; every single day for the last 5 weeks. Not long by most people's standards but IC is a new diagnosis for me. The antibiotics and bladder analgesic are doing nothing for me...will definitely start on the IC drugs when I see my urologist tomorrow. Hope you feel better soon!

[ICNDonna]

I find that when I have problems with frequency, antispasmodics really help me. I have taken several at different times and all seem to help me after a few days. The one I have now is hyoscyamine, which is very inexpensive, but seems to work well for me.

Sending warm healing hugs,
Donna

[creatingkarma]

I guess that I should give my drug list for a day:

Elavil - 50 mg
hydroxyzine - 50 mg
Lexapro - 20 mg
Zelnorm - 2 a day
Flonase
Nulev - when needed
Ativan - when needed
Provigil - when needed although dr wants me to take it every day

I think that's all, but it seems like I'm forgetting something. My current uro told me that I'm to the point where all available options haven't worked, so there's nothing more he could do for me. He knows pain is my biggest complaint, but has never been one to give pain pills. Although I really hate to add another drug to the list, I feel that numbing the pain is what I really need. The frequency & urgency is a bother, but they are the least of my concerns & the easiest for me to deal with. This constant pain is what gets me down. I feel like I'm in labor all the time.

I do have hope for tomorrow. I am going to see a new urologist at Kansas University Medical Center. He is the only dr in my area that the ICA recommends & I have heard great things about him, so I really have my fingers crossed. Hopefully this is the answer to my prayers.

Thanks,
Karma

[KimMulry]

I know what you mean about feeling worse while you are trying so hard to take better care of yourself. I have been dealing with IC for going on four years and currently my actual IC pain is not at its worst but my overall health seems to be at its all time low. I weigh more now than I did with any of my four babies due to the depression of everything. I injured my back last summer while i was taking Elmiron so the inactivity combined with the Elmiron side effects really messed me up. Elmiron was awful for me. I felt sick like flu sick all the time while I was on it and I had blurred vision. I don't know if that was from the Elmiron but it went away after I stopped taking it. All I am doing for IC now is Paying attention to diet. I had 5 DMSO's over the winter. I was so sick during them but I noticed an improvemment after a while. Right now I am always tired like I was when I was pregnant. I blame this on depression and I am taking prozac. Although, I don't think I would be this depressed if I did not have IC. IC treatments make you depressed and depression makes your IC worse! Hmmmmmm!!!

I went through a period of denial and stopped all meds and just tried to make myself well by wanting it so badly. I went to a "healer" (MIND BODY TALK) similar to Reiki. It was powerful for about two weeks and then I was peeing blood again. Back to Boston I went. It is just really hard to devote your mind to healing yourself when you have four kids under 12 and not alot of cash to do the stuff that makes you feel good.

I think if I could live by myself and shop for myself and only take care of myself I could possibly get better. that is a pipe dream!

The other alternative is to win the lottery and hire someone to take care of me.

How great would that be!
Hire an IC friendly Chef who can also cook for the entire family.
A maid.
A personal trainer.
A yoga instructor.
A massage therapist.
A chiropractor.
A chaufeur for the kids activities etc.
A babysitter for atleast one night a week. The kind that reads to the kids and plays with them and then does all the dishes and vacuums.(if the maid did not come that day)


Imagine if the above is the actual cure for IC!

[plaedes]

i'm sorry to hear your hurting so much. i had the cysto/hydro done back in april and i'm still not right from it. when i was first diagnosed the pain was horrible. after a few months of being on elmiron it started to subside. i had a bladder instillation done and i thought it was a miracle. i was out of pain for almost the whole year. then spring came and i had a gigantic flare. i noticed in your list of drugs that you are taking stuff for allergies. i don't know about everyone else, but it seems like anything i take for my allergies just wipes me out. i truely hope that you are not taking 50 mg a day of hydroxyzine and that it is really 5mg. i take 10mg at night and i can't wake up in the morning. it is worse than coming out of anethesia for me. then i'm in this fog all day. just feels like slow motion. lately i have just quit taking it unless i have a lot of problems and don't care if i sleep all day anyway. i tried cutting the 10mg pills in half and they gave me wild dreams. i felt more tired than if i had just stayed up all night. at any rate you may be a little over medicated or these just are not the right fit for you. good luck with finding something that works.

[Sarojini]

I take 25 mg of hydroxyzine at night. I'm allowed to take up to 100 mg a day, according to my uro, but I told him he just had to be kidding. I'm used to the 1 25 mg pill, although it is often REALLY hard to get up in the morning (especially if I took a pain pill too :dizzy:)... however, once I'm up, I'm okay....