View Full Version : New with IC
Hi I have been reading posts here for almost a month(lots of info) :) but haven't introduced myself. I was dx. with IC on the 3rd of Aug, at which time I also had a total hysterectomy due to precancerous endometrial tissue and ovaries. My IC has been much worse since this surgery. Has anyone else experienced an increase in IC symtoms after a surgery? My urogyno. put me on Elmiron which I started about a month ago. HEadaches are killing me.I know it can take some time, I just wish I had some relief now. I really hate being me right now, well at least being in my body. I am grieving for the old me. I'm not depressed but it may not take me much longer to get there if this keeps up much longer. My family has been great, but I feel so bad for them, having to put up with me right now. Does life return to normal after a while? I have a demanding job and have been missing more work lately due to this dang IC. Thanks for letting me vent. I am so sorry that people have to put up with this disease, but its nice to have others to talk too.
09-29-2004, 10:46 AM
:welcome: It takes about 6 weeks for your bladder to calm down after a hydro... Only you will know if you feel like you can go back to work and handle your job..... I wish you the best of luck.....
you came to the right place for support.
09-29-2004, 11:41 AM
:hi: and :welcome: to the ICN family. I'm sorry you have ic but you will find lots of support from all of us here.
have you checked out the IC diet? its a good way to make your own no no list so to speak you will find you can eat somethings on the list (most people do not all) :( but we are all diff with our diets.
anything high in acid is a no no for me. like tomatos (unless home grown) some can't even have home grown ones. hot spicey things i can't touch either.
there is also alot of treatments out there please check out www.ic-network.com/handbook it has tons and tons of information there please keep us updated on how you are
we do care
sending you hugs and prayers
09-30-2004, 02:45 AM
I am not sure how good it is, but it can only get better. Thank you to all of you who replyed to my message yesterday. It is of great help and I am doing my best to go by the diet. I am having surgery in a month for some overian cysts. She is also going to look for endometriosis(spelling). So I am not looking forward to that. For those of you who asked I am in Auburn washington with no family close by and no one who understands what I am going through. I have some other things wrong with me as well so it makes the pain even worse some days. Well I hope everyone will have a good day and ladies life can't get much worse..
09-30-2004, 02:50 AM
:welcome: Glad that you introduced yourself. I think maybe the stress from surgery can make your IC flare, and if you had a cathader inserted that hads to the pain as well. everybody is different but I know for me I know I have to try and keep my stress levels down. When I had my gall bladder removed the two nights after that I was flaring and feeling like having to go to the bathroom all the time. Hope you start feeling well soon.
09-30-2004, 02:55 AM
:welcome: to the IC Network family.
You should be pretty well healed from your August surgery by now so it may be that it's your IC that is kicking you right now. One of the potential side effects of Elmiron can be headache --- you could try emptying the capsule into water and taking it that way. Many have found that the capsule itself is the problem.
Have you been checked to be certain you don't have a urinary tract infection? Sometimes it's difficult to tell a UTI from an IC flare. And there are many, many treatment options for IC. I suggest you talk to your doctor about those.
Sending warm healing thoughts,
09-30-2004, 03:58 AM
Pam... :welcome: to the ICN. So glad you are with us and that you introduced yourself. Hope you begin to feel better very soon. :)
09-30-2004, 05:03 AM
i also got really bad headaches from the elmiron.
the uro suggested freezed-dried aloe vera capsules.
you can buy them on the main ic-network.com web page thru desert harvest or go directly to their web page, desertharvest.com.
i just went this morning for heparin, xylocaine, and sodium bicarb for my instill.
went fine, but i haven't been able to go to the
:toilet: for about 1 1/2 hours. i have retention, recently. no wonder why i feel :dizzy: and nauseous.....
well, sorry you have ic. hope you can find one of these treatments that help you feel some relief.....
09-30-2004, 06:35 AM
:welcome: to the ICN! You've already received a lot of good advice here, so I'll just say hi :hi: and send a big welcoming :grouphug:
thanks for the warm welcomes. I still have so much pain. Had to go the ER due to severe pain. No UTI(did culture) but major blood in urine. I told the Doc I had IC but he really thought I must have a stone due to all the blood. I mean I can see blood when I pee. ( sorry for graphics) is this normal? Needless to say tests showed no stone. I think maybe I have found a good Dr. He has put me on ditropan and Atarax, but boy am I dryed up. When i had the hydro all I remember the Doc saying was that lots of blood was present and no doubt its IC (severe stage)atleast if feels good to know I haven't been crazy for the last 7 years. This is how long it has taken for a diagnosis. Again thanks for the advice. I am trying to follow the IC diet. Bought every avaible bottle of preleif I could find. Only problem is makes me severly constipated. I am 38 and on Hormone replacement therpy due to having my ovaries removed and take calcium supplements also. maybe I should cut out the supplements . anyways thanks for giving me the forum to rant and the kind words that lets me know I'm not alone. :)
10-03-2004, 10:16 AM
hi and welcome. the diet is a good idea and i hope you find releif soon.
Hi, and wanted to add my welcome to you, along with the rest of the gals. Great place to find information, support, and lots of understanding from the gals, and the guys here on the network. This is a wonderful support group, and always here to help through the bad days, and the good, welcome hug, and glad to help you any time needed, Iris. :hi: :welcome: :grouphug: :flower:
10-03-2004, 11:45 AM
Hi Pam, and welcome!
I'm sorry you're in so much pain right now. A while back, Katrina put together a list of things to try for pain. You'll find it under the pain management heading. Perhaps you can find something there that will make you feel better.
Wishing you better days ahead!
[QUOTE=pmap]Hi I have been reading posts here for almost a month(lots of info) :) but haven't introduced myself. I was dx. with IC on the 3rd of Aug, at which time I also had a total hysterectomy due to precancerous endometrial tissue and ovaries. My IC has been much worse since this surgery. Has anyone else experienced an increase in IC symtoms after a surgery?
When I had my total hyster, the doc told me they would use a pediatric catherer, and removal of all the stuff was to be just easily pulled through the vagina.
What a crock. I found out that my uterus was much larger than she expected, she had to cut the thing up inside and then pull all the pieces out of the canal. This was to be the simple way.
I will tell you that it took me 6 months to get over the pain induced to my bladder by that operation. I had IC for at least 13 yrs by the time I chose to do the hyster. I really regreted doing it after the pain it caused me.
I called the doc up and told her that the lortabs did not help. SHe would not believe me, and made me come to her office.
I was put into the waiting room, I felt so sick and in so much pain, that I took to the floor all crumpled up in my coat.
The other paitients were not so happy and the nurses and doctors got a bit worried, so they rushed me back to an examination room.
My doc finally came in, saw how pale and in pain I was, and gave me an Rx for demerol. This all could have been avoided if she would have listened to me in the first place. I told her I had the bladder problem, and then the banging up of the uterus and the bladder and the urethea, didn't add up to one or two lortabs every 6 hours.
So, you need to be agressive with your doctors. If you are in that much pain, make her/him give you pain meds. Elmerion doesn't work for months and sometimes doens't at all.
I feel so bad for you, but more angry at your doc.
take care, and call them , let them know how bad you are.
If necessary, go to the office, and let them see the pain you are in!
Miki: a newbie here also, altho I have had IC or whatever for 20+ years.
10-05-2004, 12:55 AM
I've just been diagnosed with IC this week although I probably had it most of my life. Since I turned 50 in April I've had many things wrong with me, to the point it's doing a job on me. I also have a platelet aggregation disorder so I may not be able to take Elmiron. Please I need people to talk to me to help me deal. I know there are people out there who are worse off then me, but still it has been a rough few months. I am a male. Would appreciate all replies.
Miki thanks for the info. saw the Doc. but all they gave me was some type of steroid pack that is suppose to break the pain cycle. HA I am also sooo worried about an upcoming trip. I will be riding a school bus for 4 hours one way to take my students to a leadership conference. I have to go, these kids have worked so hard to get there. we had to raise all the money ourselves though fundraising. I can't let them down. Anyone have any ideas ,tricks that I may be able to use to get though it? Miki sorry you have had such a hard time with your IC after the hysterectomy, I'm not sure I can last 6 months. Doc told me I would only have problems for maybe a month. Well been over a month and IC is still worse than it was before sugery.
Sparky50. Sorry you have joind the ranks of IC. The ladies here have been so supportive. I think you found the right place.
10-05-2004, 05:06 PM
Just wanted to add my :welcome: to the ICN!!!!
I am thankful for finding this site. Everyone is so helpful and supportive.
I am getting better now, and the flare is almost gone. I hate to say that for the tempting fate thing. But I know I will get another one at some point. I am just enjoying the fact that I am on the way away from this past flare!
10-08-2004, 02:20 PM
Hi all. I've been taking Elmiron, Elavil(Amitriptiline) and Vistaril for about 6wks and being a male, I've also been taking Uroxatrol (alpha blocker to help urination). I had a lot of lower abdominal pain and urethral pain. I'm feeling better after a long painful summer.
I'd strongly recommend the Elavil. A recent study in Germany showed its effective for pain in a high percentage of people. It can make you tired at first but if you take it before bedtime(2hrs) it can help you sleep as well a reduce pain. The tiredness goes away after a week or two. Hydrodistention also helped me. Hurt for a couple of hours afterwards but reduced my symtoms subtantially. My pain which was almost debilitating and I missed a lot of work, is now more of a discomfort but usually present. I'm working and when I'm busy I don't think about it all the time. Wished I could get a little better, but I can enjoy my family and work again.
Hope this helps
I am going to ask my Dr. about the Elavil. He wanted to try the Atarax first, but I see no improvemment. Thanks for the info. I see him again on the 18th, thats right after my trip with 90 teenagers and an 8 hour bus ride. EEGADS I'm not sure I'll make it. I am wondering if I should try to reshedule before this trip. How long does it take Elavil to help with the pain? Thanks
10-09-2004, 07:00 AM
I started to feel some relieve after about a week on Elavil. I'm taking 50mg/day at night. For first 3 days I was groggy but able to work (I'm an engineer so I don't have to do a lot of physical activities like a teacher does). You may want to start on a lower dose(10-25mg), to keep you from feeling so wiped out. I talked to a woman that we see on occation who knew I was having bladder problems. She has been taking Elavil for over 7years for her bladder problems. Sounds like she had a tough few months too. She went to Mayo Clinic in mid 90's for help.
I was so concerned for myself and family this past summer, not knowing whether I was going to be able to work or not. I've found that you have to put in some effort to help yourself. I went to 3 urologist to finally get a diagnosis which took several months. I'm still looking for the "silver bullet" too, but I can function now. I surf the web alot to read about IC. This helps me have hope that someday a medicine will be found to take away all the pain and discomfort.
Do what you can do. I've got a feeling that your students would understand if you were in too much discomfort to go on trip. Sounds like you would be the most disappointed, though.
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