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View Full Version : What I think caused my IC


CharAnn74
07-31-2004, 05:30 AM
Last year I was very sick from June to October with colon problems.In early June I went to a Gi for occasional bleeding, and bm problems, and pain.He did a scope and Dx'ed IBS, with non-bleeding internal hemmies.
3 weeks later I was in horrible pain most of the time, and ended up being hospitilized 3 times during that 4 month time, with very dark bloody diarrhea and horredous abdominal pain.
They kept saying I had ischemic colitis, but it kept happening and they could not figure out why.I had 17 inches of ulcers in my colon!! They ruled out Crohns and Ulcerative Colitis by biopsies,and bloodwork.
I finally got fed up and asked for a refferal to a new GI after my last hospitilization.He looked at the biopsy reports from the other GI, and said it looked like an infection.He did a scope shortly there after, and found all the ulcers healed up, with some minor inflammation in the rectum.HE DX that it was infectious colitis,that cleared up on it's own.
I was MAD! :cussing:
I suffered for 4 months with something that could have been treated.I think this lowered my immune system alot.
Right before my last hosp stay I started having muscle aches and pains all over.(Turned out to be Fibromyalgia)
Then shortly thereafter when my colon healed, I started having bladder pain.I had already been dx with an over-active bladder when I was a teenager.SO I have always suffered with freq/urgency/leakage.But no pain.I kept going to the Dr,ER, Immediate cares etc....thinking for sure I kept having a UTI, no bacteria, just blood,a few times they put me on anti-biotics with no relief.
I thought I was losing my mind, I was in so much pain for no reason from what they was saying, one Dr told me it was GERD !?!?! :loco:
Finally in Jan of this yr they sent me to a uro doc.She put me on Detrol for my 'over active bladder' It made things worse for me, could not pee, and in more pain.I stopped it, and they finally decided in April to do a hydro, and I got my dx.
I think the fact that my immune system was a mess from the infection, that it caused my IC, and my FM.Plus ever since then I have been sick on and off the past yr with other things, like chronic sinus infections and bronchitis.
I had a GI bleeding episode in March also, and they found nothing,GI guessed it was the NSAID'S I was on for FM.Not sure if I believe that since this time it was bright red bloody diarrhea, and upper GI bleeding would be dark.
Quit taking NSAID's up until here recently.I am careful though what I take, and not take very many.An advil here and there.They put me on Toradol after my last distention last week, and it tore up my gut immediately, got my IBS going bad.So I stopped it and it cleared up.
Anyways, this is my theory on what caused mine.It just seems like to much of a coincedence, that my body started falling apart soon thereafter.
:dizzy:

Sharon
08-05-2004, 10:25 AM
17 inches of ulcers :yikes: You poor thing! You have been through alot.

CharAnn74
08-05-2004, 12:45 PM
PS-I also belive the initial colonoscopy started the infection, and half thought about suing the doc, plus the fact he mis-dx'ed me for 4 months.But, did not have the energy.My internal med doc now thinks I may have the Ebstein Barr Virus, and I am awaiting blood work results on that. :(

Katrina
08-05-2004, 01:55 PM
:grouphug: :grouphug: :grouphug: :grouphug: Why do our bodies always fall apart all at once? Is it the first thing or something else? I don't know but I know it can't just be a coincidence. I am so so so sorry you went through all of that....I am very multi diseased and understand the mess. If you want to talk feel free to contact me.

:kiss: :kiss:

ICNJess
08-05-2004, 02:09 PM
Boy, when it rains it pours! For years I suffered with IC, Fibro/CFS, and IBS without knowing what was happening. As soon as I got one diagnosis, the rest fell into place. It was not easy to get dx'd, as doctors were reluctant, but it all began to make sense after I researched IC and said "Hey that's me!" and demanded better care. Hang in there, it will get better. :)

Take care,
Jess

MakinIT
08-07-2004, 08:11 AM
Hmmm..we are just having a dashingly wonderfurful time herein the great northwest.I can hardly stahwake (my meds) and I iudid want to let you know how it started. I've had about 4 years of major abdominal surgery and affter the lastone,in2oo3 =, lot of adhesionsions, were removeed. So I am unhappy becauese4 weeks after that, my symptoms began. Thus entered the world of exams. patronazation, and............well....cloudy headededness, here I am/Worse for the wear.


Bleah/
tracey

sadgirl1950
08-15-2004, 03:46 PM
what do people with ic eat im scared to eat anything

CharAnn74
08-15-2004, 04:08 PM
Hey Sad,
There is an IC diet you can follow.It is on the site somewhere but I am not sure where, I got a copy of it from my urologist.I have found some of my triggers and try to avoid them.My biggies are caffeine,alcohol,acidy food like tomatoe sauce,marinara,citrus,lemonade etc....I know artificial sweetners are another one for some.(I never use that stuff anyways) Carbonated beverages,and many more.Hoepfully someone will come along who can direct you to the diet area.I think it is on the main IC page....

CharAnn74
08-15-2004, 04:11 PM
Jess,
That is how mine started IBS,then FM, then IC....

sleepyangel30
08-15-2004, 04:31 PM
I'm sorry you've been through alot. I was put ditropan xl for over active bladder which is something I didn't have before I was dx with IC. When I had to pee I could not pee. I think it messed up my bladder capacity. it caused me so much pain as well. So I stop taking them. I will never ever take them again....

CharAnn74
08-15-2004, 04:46 PM
Sleepy,
Ya know what they put me on Detrol right b4 my dx thinking that would make my freq/urgency and pain go away,Cause I was DX with an over active bladder about 13 yrs ago or so.All the detrol did was cause me not to be able to pee, and in more pain too.......Did I mention the uro who dx me was an idiot LOL.

MakinIT
08-15-2004, 04:55 PM
I'm a little more coherant tonight... :) I feel just terrible for all the stuff that CharAnn has gone through. Unfortunately, it takes just these episodes to realize that doctors aren't gods, they are people. some got through med school with A's other with C's...Some are very empathetic, others are pathetic. :toilet: I have been fortunate enough to assemble a good team. Lord, I have about 6 docs + a psych and they meet about every 3 weeks regarding my plan of care. I can't bull**** any of them. They've all decided I'm way to messed up on my meds (I have stronger word but the editors would just bleep it out) to be driving. So, they we're going to pull my license while I was on these meds. Fortuanatly, hubs was there (actually, it was an appointment for him) and he made it clear he drives me everywhere. which is true. except to the 2 block away Fred Meyer or 1 mile away Safeway.

My pain gets so intense sometimes, I can't see straight. This weekend I've had some fun new stuff. Pain shooting down my lower back into my bladder. Very Fun. Started on myright side now down my entire back. whee. Last week I had a UTI on from these stupid installations I'm doing. (I think I'm having difficulty because the first two installations were latex)

Good luck all of you. Although I don't wish this disease on anyone, I'm glad others are out there to help.It was a dark winter and times were ugly for me. This website, and my docs, saved my sanity.

Tracey

CharAnn74
08-15-2004, 05:00 PM
My new uro saved my sanity :)

MakinIT
08-16-2004, 11:13 AM
I just feel blesssed to have the medical support I do even though I ***** and whine occasssionally about them and they make me crazy. At least they all know my name, voice, and often will put me straight through to the doc. ( New nurses give me the protocol, so I politely give my name and a nurse usually calls me right back then puts me through if things are ugly) I really hate people with nasal noses who keep repeating "I'm sorry, you can only give a message to the doctor so give me your name and number....GRRRR"