View Full Version : Hello
09-10-2004, 04:49 AM
Hi everyone. I have been lurking on the boards for the past few weeks and have found this site extremely helpful. I am newly diagnosed (yesterday was hydrodistenion and confirmation of IC). It took a bit for my docs to figure out the problem (started with Pylonephritis that took forever to respond). I have Gilbert's disease (that only effects me when when I am really ill with hyperbilirubin anemia and jaundice which increase fatigue dramatically causes itchiness and nice yellow glow), fibromyalgia with accompanying irritable bowel. I thought the side effects from antibiotics were the culprit. I have a high pain tolerance but IC has really got the best of me. I also have a high drug tolerance/intolerance. Only antibiotic that doesn't keep me in the bathroom 24/7 is macrodantin, and nti-inflammatories are impossible. I don't think it would be so bad if pain meds didn't because I took them all the time and had built up a tolerance. I use to think I was unique until I started working in my present job. Ironically it is an anesthsia pain clinic so I see patients on high doses of meds regularly.
One of my major problems is sleep or lack of it. 4-5 hrs use to be the norm form me and when that is dropped to 2-3 it is hard to function. (some nights it's zero). Elevil 200mg didn't even make me yawn. and ambien is good for an extra hour or so. I was just started on elmiron yesterday and am hoping the side effects (diarrhea) are miniimal. I have been off work since July because I can't function with a pain score of 8-9, no sleep and diarrhea 15+ a day. (tried almost everything for that and had just sort of adjusted to 6-10 times a day before this started. )
I also have retention never uder 100 cc post void and had a big problenm after the fluro voiding and detrol (?) stopped me completely. The cathed me after that for 10 days because there was no way I could self cath (pain) and could not pee if my life depended on it. I HAD a large capacity 750+ during test. Now if my foly even kinks for a bit I have incresed pain. I have my second foley in less then a month (kept in after hydrodistension). I can barely tolerate the pain and burning let alone the spasams and feeling that i have to pee all the time. At least I get it out next Wednesday. I have 2 weddings coming up and was thinking of designing an elegant cover because the leg bag is a PITA. Okay well I guess my novel can be cut short (rambling is what I do best). Oh my biggest problem right now will be diet...I am not sure if I can eliminate chocolate and still survive. Not sure if my kids (daughter 11, son 8) and hubby even want to be around me for it :dizzy:
Okay done now for sure.
09-10-2004, 04:56 AM
:welcome: to the boards! I'm glad you decided to post. I am very sorry you're dealing with all of these conditions and now have IC on top of everything else. That's a real bummer! I hope you have lots of luck finding treatments that work for you.
Come here as often as you like/need to find support. Everyone, as I'm sure you've seen, is wonderful and there is a lot of love here :)
09-10-2004, 05:17 AM
:hi: :welcome: So glad you posted. Sounds like your medical plate is as full as most around here. I am so sorry you are having such a hard time right now. :grouphug:
Oh, that diet is such a pain but it can make such a big difference. It can feel so depriving, but it really can help your little bladder feel much better. It's worth the struggle - and you can always come here and commiserate with others about how much you miss the foods. ;)
I am glad you finally posted --- nice to meet you! :)
09-10-2004, 11:36 AM
Hi and welcome. Glad you decided to join us! I'm sorry you've had IC piled on top of your other health issues. Every time I read a post like yours I feel fortunate I've only got IC!
09-15-2004, 12:07 PM
Hi everyone thought I'd share the good/bad news since i went to see uro today. Goodnews...Foley is OUT :woohoo: :woohoo: :woohoo:
Bad news...my bladder is a mess.
My doc said that I had a great bladder capacity (1200cc) and because I use to hold it for ever thinks that contribute the large extent of IC (entire surface was raw and bleeding everywhere). Since it expands to that large a capacity there is more surface area to be inflammed and raw and bleed. She was suprised when she looked (most ICers have smaller capcity so when it was over 1000 she though it would be negative.) I can expect to continue to bleed for the next couple of weeks. (still passing clots up untill they removed the foley). I am nervous about retaining again (due to pain according to her). She told me to stop taking the macrodantin once I finish the 2x a day script. I was suppose to stay on it once a day but am vommitting when I take that and the elmiron. If the nausea and vomitting don't go away I go in sooner then 3 months to see her. She also gave me dilaudid with refills for pain so that will help. Now I start the diet (no voiding diary until foley out.) and diet for real (although no chocolate/tomatoes/caffiene). I miss chocolate already....I figure I will try to do the strict diet rather then just stop a few of the bad things (my original plan)....Especially since doc says I am bleeding everywhere. I have been following the diet up till now but not really keeping track...well okay I was following the diet only because I was vomitting up everything :rolleyes: My docs says I may not notice that the diet makes much of a difference right now since it's such a mess, but in a month or so when it has calmed down I will be able to tell what is a problem when I start adding them back into my diet. I am trying to stop myself from using excuses like If it doesn't matter and i won't notice right now why bother. OR It hurts no matter what I do why bother :headbang: (see already have excuses ready)
The other big thing is my uro wants me to get into rheumatology asap. She really thinks that I have some autoimmune disease or syndrome since I have Fibro, IBS & IC. Also my family's histoy (diabetes, scleraderma, lupus, sorjen's, rheumatoid arthritis). I haven't seen anyone in the states for it since I was diagnosed 12 years ago in Canada. She thinks I need to se rheumatoid since all three are tied together and she want's to rule out anything else. Oh well what is one more doc...
Ohter then not sleeping, bleeding and being in pain I feel relatively okay...At least it didn't take years to diagnos and I have things I can do...much better then last year when they ruled out everyhting and ruled in IBS. That left me with only questions and no further ahead then when I started. Plus This forum is a great help too...
Thank all for your support, Laura, Barb, Katrinna and everyone else. I am actually looking forward to going back to work where I can start looking into more things to help us all (one of larger more advanced pain clinics in Michigan) :love:
09-25-2004, 04:45 AM
hey i'm on the west side, near grand rapids. i'm so sorry you have so much going on, i feel like a wimp i have a couple other bladderthings and castro-chrondritis, ADD, and anemia blah blah blah etc. things doctors are familiar with. i have real empathy for people like you in all that need this site is awesome for that though you need support it's here you want to support and help back it does that too. so many kind people here, sometimes life makes you feel like people are so cruel like in small town michigan society ppl seem very close minded and cold. i'm a liberal little west michigan girl and it can be hard. you know now coming here that the reason you are different and kind is that the disease however horrible breeds such a compassion in us for others. there's one support group near me at spectrum health, i know another in st. joe but you know how long drives feel.... if you know or want to know more local stuff not on the site let me know. feel better! with care,
09-25-2004, 04:51 AM
one more thing- wups got off on a tangeant up there....sleep med that i started is awesome with no 'hangover' drowsiness- i went to a psychiatrist in holland to make sure none of my meds were counteracting b/c of my sleep issues and she gave me a pill called trazadone- start out small because its intended to give u deep sleep where urgency will not wake you up at all-especially in large doses. i guess my doc's brother wet the bed at age 34 by taking too much. she wrote it for 100 mg. to give me more for my copay and i just break them in halves.
ps. sorry i got confused and thought u were from here- brain fart
09-25-2004, 09:27 AM
Hey, I normally don't butt in to conversations, but I will this time :D I gotta say to you, Amanda, Trazadone is great stuff! I got it back for insomnia when I was 12 (not related to IC at the time, other stuff) and WOW, you sleep like a baby. I think it's almost as good as Valium, much better than that OTC stuff. Good luck with it, don't take too much or everyone thinks you're having a huge handover :lmao:
09-26-2004, 02:58 AM
Welcome!!! :) Chelsey
09-26-2004, 05:11 AM
I wanted to say welcome as well. I was just diagnosed this week and everyone here is so helpful. I hope you are feeling better soon.
09-28-2004, 05:54 AM
Sorry i have been quiet for a bit. I have no net connection (on hubby's now). Well I started back to work 11 days after my hydrositension. I managed to struggle along until wham...I had my period. I didn't realize how good I was feeling (took at least 2 days after they removed my foley that was in for 7 days.) I was still passing blood and clots in the foley. at first i though it was just the period thing and it would settle down....BUT NO....after 4 days of bedrest I was worse then before my hydro. Then the other night I noticed a rather large abcess on my labia. My doc called me in antibiotics because she knew I had an infection then. Sure enough I started spiking a temp last night and the same old regular S&S of a uti reared it's head. I just got back from my GYN/OB. unfortunatly it was one of the residents running the acute ob clinic but my OB was staffing him. I ended up having it lanced a 1" cut thru the abcess. The resident wanted to pack it with iodaform gauze but my ob said no way I was in too much pain with the ic as it was. I guess I can look forward to having my privates feel like I've been raped or had a baby and an episiotomy going to the front, when my ic flares. I go back to work monday....oh i got a letter from work saying I exhausted my medical leave and had to return to work with full medical release. Any additional abcense was unauthorized and would be dealt disciplinary actions. Good thing my disability coverage didn't require me to restart the whole thing since I had not been back fro 14 days. Thank god i have the boss I do. I brought him the note from my doctor and he said. Don't worry we'll see you on Monday. I think it is as a personal leave not sure. The other silver lining is that hey...the distension did work somewhat...it was just the uti complication...
I also made sure I got the caths so I can self cath when I am in too much pain to pee. Nasty circle PAIN-Can't pee &/or retain 200+-causing more pain.....I hope I don't have to in the next couple of days....the slice the ob did hurts on it's own without me fiddling around....Now to just be able to tolerate augmentum, Bactrim DS, elmiron and not puke/poop forever. Oh as for antidepressants....I have an unusally high drug tolerance...I was actually up to 200mg elavil every night and it didn't make me yawn. My doc tried tramazone at the beginning...NADA. I end up either getting out of bed and doing something (sucked not having the internet last night since that was the case...and not slept yet). Or if I can actually stand to lie in bed (pain isn't so bad i get up) then i will myself into a zponed out state. Starting at the toes to the head....conciously relaxing each and every muscle. It only works if you can bet the pain and stress down to a bearable level. I can put my hubby and kids to sleep droning on and on about their legs getting tired..like hypnotism. Just can't always do it with me. Well this is my sitting limit for the day. Thanks everyone for still being there. (feel very berift without you all.....)
Powered by vBulletin® Version 4.2.0 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.