Thread: Help, Guidance needed!!!
02-04-2005, 08:13 PM #1
Help, Guidance needed!!!
My name is redmowii. I was diagnosed in Nov. with IC, but I suspect I've had it for a year and half. They first blamed my pain on endometriosis. I have both but the endometriosis isn't very bad. I am struggling with how to deal. I feel trapped and closed off. Like the air is being sucked out of my body. The stress is killing me. I think I have developed an eye twitch. I only thought that happened in movies!!! I have read the handbook, but am struggling with what options are next. I think I need to know more, but there is so much info., I don't know where to start. Any ideas would be welcome.
02-05-2005, 03:15 AM #2
The best advice I can think of is to follow the IC diet and work with your urologist on treatment options to help you feel better.
My IC was diagnosed thirty years ago and I just would like you to know that there is life with IC. It may take a while to find the most effective treatment options for you and which foods and drinks are a problem, but most of us do get there.
And keep in mind that for every individual posting here that they are in pain, there are literally hundreds out there who have IC, but are not posting because they feel good and don't need the support of the boards.
Warm healing thoughts,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
02-05-2005, 04:40 AM #3
- Join Date
- Mar 2004
- Viera, Florida
I have had the pleasure of both diagnoses and more than my share of stress lately. The only thing I can offer is to back up Donna's comments(she is an IC goddess)and to say that even in the darkest days good things do happen. My endo was eradicated and then IC reared it's ugly head. My suggestions are to make sure you find a doctor you trust and can speak to openly, have uro that actually knows about IC, and that you educated yourself as well. Knowledge is power. The IC diet, although I have had to give up all of my favorite things(chocolate, Dr. Pepper, and Cherry coke) is a godsend.
Hugs and best wishes as you begin your journey,
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
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"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
02-05-2005, 11:38 AM #4
The info here does seem overwhelming in the beginning. My best advice is to take it one day at a time. Read one section of the Handbook a day. Or, get The Interstitial Cystitis Survival Guide by Robert Moldwin from either the ICN Shop or on amazon.com, and read one chapter a day. Don't try to do it all at once, because it really is information overload if you do that -- especially if you're not used to reading medical stuff. Eventually, you will absorb the info, and that's a good thing, because as Barb points out, knowledge IS power. You will be better able to work with your doctors and be an active participant in your care when you are well-informed, and also, that powerless "Why me?" feeling will start to dissipate as you read.
Also, Donna's right -- most ICers find the treatment (or combination of treatments) that helps them feel much better. You will too -- it may take a little time and trial and error, but eventually, you will find it. There IS life with IC!!****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
02-06-2005, 12:13 PM #5
Take your time in going over the information here on IC. It can be extrememly overwhelming at first! I do want to echo what was said before, most of us do find treatments & various self-help strategies that make living a full life with IC possible. The diet is a great place to start. I found my IC symptoms dramatically dropped in severity once I eliminated problem foods. Between diet & meds I even forget I have IC now from time to time!
Hey, I have this eye twitch thing going on too! It started the day my daughter told me she & her husband are separating, so I'm blaming it on 'nerves'. (I'd like to kick both their butts, but that's another thread!) Stress can also play a role in IC flares, and your twitch may be related to that too!
Hang in there, -things will get better!
02-06-2005, 12:55 PM #6
hi and to the IC family.
These ladies has already gave you great advice!!
what is most important is that you follow the ic diet to help keep flares down and take something to coat that bladder. The bladder walls has to be coated i use heparin and marcaine cocktail treatments other use elimron which is a very good coating drug but takes up to six mths to a year for icers to notice any diff.
others use dmso to help there bladders.
Please be open with your doctor the realtionship between a pat. and a doctor is very important the more he knows about you the more he can help you.
I will never forget when i finally opened up to my uro is when i was in his office one day and i really needed to tell him something and he could read it all over my face he said Rhonda what is it you are wanting to tell me?
I looked back at him and told him i really need to tell him where i was hurting at and what i was doing but i was embrassed for two reason one he was a man two i didn't know him well.
He looks at me with the biggest grin on his face and said Rhonda you can tell me anything if it would make you feel better I will go out and put a wig on and dress in drag LOL okay that done it i felt better after that appt. I felt more like he was my friend not just a doctor who didn't care one who wanted to care one who wanted to understand and listen to me. I just had to be open and honest with him for him to help me and truely at one time i was about ready to give up hope on him and he was on me because nothing we was doing was helping me.
Then one day out of the blue I decided to listen to him about trying the heparin and marcaine at home at first i thought OH NO i can't cath my self at home NO WAY your crazy but heck what else did i have to lose?
at first nothing i was still deeply in pain and he wouldn't give me any more pain medicine because he thought i was a jenky (sp?) after a ivp one day they sent me back up stairs because the way i was breaking out in sweat on the table down stairs because of the pain they was sure it was a blockage.
The rn came out after reading the test and ask me had i heard about the new study where it was safe for me to use heparin as much as three times a day if needed. I started doing this. to my suprise it was a God sent the uro went back in my bladder and seen how bad it was still but he knew i wasn't lieing to him about my pain.
I have never lied about my pain and I honestly believe 99% of icers don't lie about there pain.
Sorry I didn't mean to go into a story about me I just really wanted to let you know the most important thing was to follow the I.C diet and use a drug to coat your bladder so it can heal.
forgive me for the novel I wrote.
sending you hugs and prayers
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
02-07-2005, 03:26 PM #7
to the ICN! I have endo and IC ....you are from alone and we can help you handle and feel better! Having both is painful and upsetting....but we can work towards relief and it does happen. Let me know if there is anything more I can do for you!
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!
http://www.ic-network.com/forum/show...0935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
or find me on facebook http://www.facebook.com/kat671?ref=profile
Be the Miracle! & Pay it Forward!
firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
02-08-2005, 03:02 AM #8
Welcome to the IC Network !!! You have been given great advise. Go through the handbook. I refer to it all the time and the books mentioned are also a good purchase.
I would have to agree diet is a key element to helping your IC symptons. When I first started I only ate what was in the OK column and then over time added more foods. It was frustrating and a struggle but glad I did it and now I have a good menu that I follow with a great variety of foods. I'm still trying to come up with new ideas, helps when you like to experiement in the kitchen.
Looking forward to chatting.Jen ...
02-08-2005, 03:41 AM #9
I found Coffee, Chocolate and artificial sweetener is the worst thing for me, but erveryone is different. You have kind of find out what your tolerance is through trial and error. This board has helped me a lot. Also I am taking cornsilk, and it seems to have an effect, I cant take Elmiron.
02-12-2005, 12:04 PM #10
Thank you all for all of your advice. I think this web site is what saved me from a nervous breakdown. The twitch is still there though, mostly when I'm at work. I can find humor in myself agian though. So that is an improvement. I really appreicaiate all of your thoughts.
02-12-2005, 12:18 PM #11
- Join Date
- Sep 2004
Hi, my name is Judy and I live in Nevada. I can really relate to your post. I'm not only confused but very, very scared. I have been using the alternative methods, Algonot etc. and have had success. But I recently have been going through a flare up. I haven't seen the uro yet but my gyno thinks this is what I'm dealing with. I have been able to keep it under contol until recently. I went back on line to read as much as I could and find a lot of things confusing. This only leads me to believe that what they say is very true. What effects one person one way doesn't necessarily effects another person the same way. It seems to be trial and error kind of thing. But I do see where the IC diet is a big help. I would be glad to correspond with you by private e-mail if you would like. Mine is JDYGEE@AOL.COM. JUDY G
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