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View Full Version : Veteran IC'ers - Could this possibly be???


karen10300
11-27-2005, 05:06 PM
I need some opions please. Sorry that this is going to be long but I really would appreciate your thoughts.
A little background first so that maybe you can give me a better opion. First of all, I have been in terrible pain, the most awful burning pain and also have had the frequency and urgency since Feb. of this year. Towards the end of October I ended up in the emergency room for a kidney stone. They lasered the stone to break it up so that it could pass. I have done instills with heparin and also heparin and solu-medrol which started to help and then quit helping. After that we switched to DMSO along with the heparin and solu-medrol. I had had 5 of the DMSO instills before I got waylaid with the kidney stone episode. After the kidney stone thing I skipped the next two weeks of treatments because I had a stent in my urether and that caused so much pain that I couldn't imagine going through a DMSO instill with the stent in.
When I next went to the doctors 2 weeks after my kidney stone I told them I was beginning to feel much better. The awful burning was letting up and that has always been my biggest complaint. Now they seem to believe that my kidney stone was affecting my IC and that that was why I was feeling so terrible and flaring so badly. I'm not totally sure I believe this even though I'm am so happy that I am finally feeling so much better. I never had any pain with the kidney stone until the night I ended up in the ER with it. I've had many stones in the past and was told about 2 years ago that I had a stone in each kidny. After I had this stone removed they also told me that there were still some very small stones in my kidney's. So I guess my question is, do you believe a stone that was not causing me any pain could have aggrevated my IC so badly for almost 9 months? Or maybe has the DMSO started to work? or one other maybe it has to do with that I stopped taking black cohosh for my hot flashes about the same time?
What ever it is, I am so thankful because I am feeling so much better. I was at the point were I didn't think that my IC would ever improve. I actually can go through a day without pain pills and I truely didn't think that would ever be possble for me. I keep reminding myself of how bad my pain had been so that I remeber to watch my diet and to take my Prelif. This is actually going to be my first week of skipping an instill because I am feeling better. I will do an instill next week and if things continue to go well we will schedule them apart more often.
I do have to say again how thankful i am for Jill and everyone on this board for all that I have learned and all the love advice and encouragement that is always here.:grouphug:

ICNDonna
11-27-2005, 05:17 PM
It could be a combination of everything you have done. I'm just glad you're feeling better and hope it continues.

Hugs,
Donna

Dixiefireball
11-28-2005, 04:02 PM
I'm sorry that happen to you. I know those stints hurt really badly i had to have one for two weeks and thought i was going to die it hurt so badly, but i'm so very glad you are doing better now.
Keep us updated on how you are. We are here for you and care always
sending you hugs and prayers
Rhonda

karen10300
11-28-2005, 05:57 PM
The stents sure are terrible. I imagine I will never know for sure as to why I am feeling better, I'm just so thankful that I am.

jaime15
11-29-2005, 11:35 AM
I'm glad you are feeling well too! I had 2 bouts with kidney stones before being dx'ed with IC. The last stone I couldn't pass alone, so I had the surgery with stint to get rid of the little mongrel.
Stint's are very annoying. I hope you don't have to go through it again anytime soon.
Take care.......... :grouphug:

emilyrose197377
11-29-2005, 11:59 AM
I am glad your feeling better and I hope you continue to do so.

Silverfern
11-30-2005, 06:48 PM
I guess if you were really masochistic you could try the black cohosh again to see what happens, but why would you want to put yourself through all that pain again when you're now feeling better. If it was me I'd just run with it and fingers crossed whatever was causing it won't come back in a hurry. :) I sure hope you continue to improve.

{{Hugs****

karen10300
12-01-2005, 04:53 AM
My fingers are crossed and I think I could be a marathon runner for as fast as I'm running. I'm not planning to try the black cohosh again. That may not have been the thing that caused my pain but I'm sure not willing to take the gamble with it and try it again. I'll suffer through the annoying hot flashes and night sweats before I'll possibly be in that kind of pain again. I'm continueing to feel pretty good. My mom asked me the other day how I was feeling and I told her good. She was so shocked and happy for me and said that that was the first time she had heard me say that in a very very long time. I hope and pray that everyone out there that is in pain will also find some relief as I have. My relief may not last forever and any time I get a little twinge with my bladder I think ,oh no, it's attacking me again, but so far it's keeping it's ugly head at bay. If you would have asked me a month ago, I would have told you that I thought that I would never ever feel good again. I just keep reminding myself how bad I did feel so that I watch my diet ect..

marsi4
12-02-2005, 04:30 PM
Kidney stones can affect the bladder but I doubt that the kidney stone made your flare last that long. I had a 9 month flare and did not have kidney stones. I,ve only started feeling better recently, and I know how exhausting, scary, and debilitating long term pain can be. I'm sure the instills helped. Glad you are feeling better just in time for the holiday. I pray that I never have to go through that again. I'M traumatized from my experience and have not yet recovered psychologically or emotionally. I take one day at a time and pray I never ever have to endure such a flare again, but know how unkind IC can be when it decides to act up again at any given time. Let's enjoy the good days and hope they outnumber the bad. Wishing you many painfree days.

Marsi4

karen10300
12-03-2005, 02:21 PM
I know what you mean Marsi. Now that I am feeling better I feel like I'm walking on egg shells just expecting the pain to return at any moment. I hadn't thought of it as you put it but I do understand when you say about being traumatized by a 9 month flare. I think that is pretty much how I feel also. I continue to hope and pray that everyone who is in a flare and having pain will find some relief soon.

Babs RN
12-03-2005, 02:49 PM
I have had multiple stones with the IC and when I get rid of them tend to do better with the IC and infections. For me, I believe there is a correlation.

Hugs,
Barb :grouphug: