hello my fellow i.c. sufferers

[sojo]

[B]i have been suffering from this for the last 3 yrs. i have traveled all over the world,my last trip to s.e. aisa. well when i returned home within 2 weeks i started having severe pelvic pains and diareha,went to my local care provider and told him my symptoms.they thought it could be a parasite or some type of bactieria,gave me cipro and something for parasites.
by now the pain in my pelvic region left living in bed or on my couch until work. i had been taking roxycodone from a motorcycle crash earlier that year,lost approximatly 1/3 of my skin and a fractured ankle and wrist lucky to be alive. well the next visit to the doctors they took blood,urine and fecal stuff for lab work,came back good but the urine test had high levels of blood. but the m.d. thought it was a gastro problem,he set me up with a doctor 45 miles away from home[i live in key west fl.** he did all his poking and prodding andordered a cat scan,did that. everything was normal.
went back to my local doc and they prescibed cipro again,by now i was noticing that i had to pee very often while painful,i could not empty my bladder went back to the doc and told him of my problem they once again prescibed cipro xr.by now my life was put on hold nothing but doctors and work. my next visit to the doc he set me up with a urologist,i went to see himand he gave a prostate exam{my first] and looked over my catscan then he precribed more cipro xr. he then told me i needed a colonoscpy, i made a appt. with a doctorwhich would be in 3 weeks, everything in key west takes so long. iwent the gastro doc,he gave me another prostate exam poked and prodded then prescibed more cipro. i set up a appointment for the colonoscpy witch i would have to wait another 3 weeks. i called the hospital where his office was and was told that he was no longer allowed to work there.
by now the pain was so severe that i would injet my self in the bladder with lidocain i did this probably 10 times if not more. i told my doc what i was doing and he told me to stop,they then raised my pain meds up tp 30mg. 3x a day,no problem this relieved the pain and i could work and do some errands that i could not do before. i made a appointment with a different gastro doc,2 weeks later i got to see her,one again a prostate exam poking prodding this time a different antibiotic,made appointment for colonosopy 3 weeks later had the proceedure done,everthing a-ok. by now i am on 2nd year of pain with hardly a life work go home lay in bed or on couch till work. it now is time to have a cystocopy{great** make appointment with urologist,3weeks later see the pee doc,one again here comes the prostate exam{i know i live in key west,but i am straight** takes a urine sample and what do you think they found more blood hell i ould have told him that i see it everytime i pee. this all ocures around december and he tells me that he wont be able do the proceedure until jan 14 ok i said we'll set it up with the recepinest i go to give her insuranse card "oh sir we dont take insurance" 485.00 later there is no way that an afford for him do do it and the hospital bill.
well i go back to get meds for the month and my doctor who also was my nieghbor had to go home to take care of some personal buissness,so i saw another doc who filling in for him,i told him that just needed a refiil.he said to me that could not write the precription he said i think you have addiction problem, i told who in the hell would go through all the things and money just to get pain medication. he did not care and said why dont you try methadone i said sure if it will help. well i filled the prescription and thought this is good i ll be getting off the opiods, well i tried these for about 10 days, i would fall alsleep at or talking to my freinds.went back to the doctors and told what was happenig and asked him to please give me my regular meds,no, i will lower the dosage but what good would that do me go bak to that miserable life that i once lived,no way,itold him that would not do that. now i am without any pain medication,well i lost my job due to not being able to work,not being able to work meant no money for rent. i had to to move out and sell all my belongings i had no where to go, i am now homeless living in friends places. thank god the lady who was living at my mothers moved out,thank god.well i finally got a appointment with the head of urology at jaqckson memoial in miami beach i had my cystopy no anasteia holy crap did that hurt. the doctor said he could not see any problems and from all my symptoms i probably had i.c. one more test to check out. my main problem is most doctors dont believe the severe chronic pain that i have does anyone else have the same problem please let me know and if there is anything that can be done. by the way my urologist does not prescribe pain medication he
refers them to a pain management clinic in miami but i live 170 miles away. i just want to live my life more than in a bed all day long.


thanks sojo

[creatingkarma]

Hi Sojo & :welcome: to the ICN. Have you checked out the patient handbook? The link is at the top of the page & it's full of a lot of self-help ideas for us IC'ers. I'm sorry to hear about all the run-around you've been through. It has taken many years for a lot of us to get a diagnosis. I've had problems since I was 3 & I didn't get diagnosed until I was 26. Have you had a cystoscopy with hydrodistention yet or is that what they're doing next? Hopefully you'll get some answers & some help with your pain soon! I'm so sorry that you're suffering - in every aspect of your life. I hope things improve for you.

[traceann]

Let me say :welcome: to the ICN! You have found a great place here for information on everything IC. And support.

One thing I would recommend, is trying the IC Diet. Many of us are food sensitive - our bladders have problems with certain foods. There are a few universal ones (tomatoes, coffee, chocolate, cranberry juice etc) but there are also foods that are out there that may bother me, but not someone else. So, that means a trial and error stint on finding what yours are. Here's a link right to the IC Diet foods list -

http://www.ic-network.com/handbook/diet.html

Just watching what you eat can make a HUGE difference in how you feel. It took me about 3-4 weeks on the diet to really get my bladder in a better place, but it was very worth it. I figure it took a long time to get my bladder aggrivated to that point, it was going to take awhile of friendly foods to allow it calm down. It had been barraged for so long with anything and everything, that eating "friendly" really helped.

What I did (what was recommended to me when I first came here) was to build myself a diet solely from the "usually ok" list. Then after the 3-4 weeks, started adding in foods from the "may be ok" list, one at a time, no sooner that at least 2-3 days in between. That way you will be able to tell, if you have a reaction, most likely what food was the offender. I am sure you will find you can eat more than you thought you'd be able to. Remember the list is a general compilation from many many ICers. It's a guideline basically, and a starting point, to help give you direction. We are all different, what bothers one, may not even cause a twinge in another.

Here are a few other self-helps that I have learned here:


Heating pad/Thermacare Heat Patches: I now have a heating pad with an auto shut-off so if I do fall asleep with it one, I am safe. The heat patches are wonderful for when your heating pad isn't feasible - like for travel or sleeping. Heat was my number one friend for my bladder!!!!

Prelief tablets: These are tablets you can buy in your drugstore or online that help to reduce the acid in foods. You take them right before you eat. They have helped me to expand my diet and tolerate some things I wouldn't normally be able to tolerate. I get them at my local Rite Aid, I spend anywhere between 8-10 dollars on them, and that's for a bottle of 120. It's just basically a calcium supplement, but it's wonderful.

Baking Soda/Tums: If I had eaten something that did not like me, I would drink 1/2 -1 tsp of baking soda in a big glass of water. Tastes yucky but helps neutralize things, even used to help with my urethral spasms. But be careful with it if you have salt-sensitive health issues... Also eating a couple of Tums can help as well. I usually use that trick for travel than the baking soda in water.

Uristat/AZO Standard: These two are over-the-counter Pyridium. Basically an analgesic for your bladder/urethra. It numbs things up quite nicely, and they had helped me immensely with urgency and frequency problems! But, they are for short-term use only, it's not a regular every day thing. I think the directions say not to use more than 2 days in a row. I talked to my doctor and got the go ahead to dose more than it stated, but you do have to talk to your doc if you want to use it more often. Apparently from what I have read and understand, is, it can build up in your kidneys and cause problems. And it also makes your urine orange, therefore can stain undergarments...

Voiding/Pain Diary: This was a HUGE tool for me. I recorded everything in a little spiral-bound notebook. Every time I peed - approximately how much I went and rated any discomfort/pain on the pain scale I found on the site. I logged in what day I was in my cycle as hormones can affect your bladder -- I found I always have some troubles around ovulation and right before my period. So, it was nice to be able to flip through when I couldn't figure out why my bladder might be acting up and see that it was most likely the normal hormonal kind of thing going on. I noted when my husband and I had sex, etc. Everything -- I logged everything. It was a great tool to have to turn to, and a great gauge of my progress. I would have never realized I was voiding 30+ times a day, and 3 times at least at night. With my diary I could see the numbers start to fall.... And those I would have not recognized either, since it was usually a decrease of one or two times a day.... Now, I am at maybe up to 10 times a day, and mostly because I constantly am drinking something, usually water water and more water, lol.

Hope this helps a little bit, and once again welcome to the gang! I know that there are many who are having the same medication challenges you are, hopefully some will chime in and be able to help you out a bit in that department!!

[dyno]

Hi, I wanted to add my welcome and wish you well. Definately look through the Handbook, there is a lot of useful info in there.

[emilyrose197377]

:welcome: to the ICN. I also wanted to add take a look over the handbook.

[ICNDonna]

I'd just like to add another :welcome: to the IC Network.

I honestly think it's more difficult for a man with IC to be diagnosed than it is for a woman --- probably because the vast majority of IC patients are women. I hope that soon you will have a diagnosis so you can get started on some treatments.

And I do agree that the diet can be a huge help.

Sending healing thoughts,
Donna

[delie]

So sorry to hear you have been through so much, hope you get some relief soon