Thread: need help with treatment options
04-26-2005, 08:09 AM #1
- Join Date
- Apr 2005
need help with treatment options
I have had IC for 10 years, diagnosed for 1 year. I have had a hysterectomy unneccesarily and have IBS ( bile induced diahrrea from gall bladde removal). I have many specialists now that I have procured but nothing seems to be working. Narcotics are unbearable with side effects and dont touch the pain, tried Elmiron, Amitryptiline, diazapam, histimine blockers, biofeedback, physical therapy pelvic floor, uroxotrol, sanctura and have been living the IC diet strictly for over a year. I want off of the narcotics as I know they are not good for my organs long term. My doctor is now recommending interstim. Does anyone have any experience with this option? I am desperate, so tired of living in pain every day. I am 37 and cant envision another 40 years of this.
04-26-2005, 09:14 AM #2
Hello Gretchen and to the ICN
There will be a lot of people here who will tell you the same thing I am about to tell you...Interstim is not for pain. It is for frequency/urgency. Please check out the posts that have been written about this issue from the people who have had this surgery. There is a whole section of the boards decicated to the Interstim. Take the time to do your research. Learn all you can about this.
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
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.
04-26-2005, 09:26 AM #3
and to the ICN boards there is many on here who have had the interstim some have good exp. with it others not so well however all i know about the interstim is it isn't for pain.
the ic diet may help you you can check that out if you haven't already at www.ic-network.com/handbook you can also read about other treatments there for i.c that may help.
know we are here for you and care.
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!
04-26-2005, 03:16 PM #4
Please read the posts under Interstim. I had the trial done and it did not work for me. If you want to chat about it, please email or PM me. (firstname.lastname@example.org)
Best of luck-
MelanieI am blessed to have an Indiana Pouch now....I am glad I did it even though it has been a long road to recovery!
IC since childhood, finally diagnosed at 31 yo
Low Back Pain s/p spinal fusion at 19
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12
Hysterectomy 2/3/12, Wicked UTI 3/12, another 5/12, another 6/12, Nephrostomy with poor L ureter flow on L side (OUCH)----scheduled for more surgery Aug 2012.
Iron 2 x a day, Vit D- 2,000 u 2 x a day- playing with dose, Vit B complex, Ambien 10 mg at night
Aspirin 81 mg a day, fluoxetine 60 mg a day
Docusate 2 2x a day, Mirilax daily (bad at taking, pay for it), Vit C 500 cc day
Methanamate-1 g daily, Ibuprofen 2 x day
Valium 10 mg suppository TBD?, Norco 10/325 as needed
04-27-2005, 02:30 AM #5
Hi I am sorry for your pain. I like you had a uneccesary hystrectomy, this was before my IC was diagnosed. I have had IC for 9yrs and was finally diagnosed in 2001. I have urgency freq and pain. I also have the interstim. I also can tell that the interstim is not done for pain relief. Some patients who have gotten the interstim have found some pain relief but this was a added bonus. The interstim is done for urgency and freqency, not for pain. Please make sure you do your research before agreeing to do this, espeically if you want it for your pain. There are pros and cons with this treatment and it is done as a last resort, when all other forms of treatment have failed. Please look at the treads for the interstim on this site. You will see my story along with others that have had postive things happen from the interstim. Best of luck to you.God grant me the serinity to withstand the days ahead!!!
My myspace link...
In Memory of My Father (Lawerence) 1/25/2007
Interstim Sept 2001
1st InterStim Removal May 2005
2nd Interstim Implanted May 2005
2nd InterStim Removed March 2007
Tubes Tied 1997
Me and my kids
Taylor (my daughter) Me and my daughter My son Cody and Taylor
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