GREAT news I am In Remission...

[hoping4acure]

I just posted this under succsess stories also...

Hello Everybody!

I have great news...after I had my hydro done on June 9th, I went for a post op visit with my uro and she told me that when she went in to do the hydro my bladder looked like it had a new lining!! There was a significant difference from the last hydro I had. When she pulled out my bladder had NO blood ( or clots)...just a little bit of pink!

She seems to think that I have been through the worst part and she thinks I will be in remission for a VERY LONG TIME! I had tears. I was sooo happy! Of course my first question was "do I have to stay on the IC diet?" LOL...
She's encouraging me to start introducing more things into my diet. I have and I have found that I can now eat things I wouldn't even dream of eating
2-1/2 years ago...chocolate, decaf (and a little caffinated) COFFEE, tomatoes, some spices...just little things like that. My husband and I go out to eat on the weekends and I find that most of the stuff I didn't DARE try...I am trying and my bladder is still staying happy.

I am back to JOGGING! I did a 5K run the other night with no signs of a flare at all. It just all seems to good to be true. I asked her what would happen If I did try something that didn't agree with my bladder (would it kick me back to where I was?) she said absolutely NOT...it will just take 24-48 hours to leave your system and you should be fine. Now, I did push the envelope a few times and yes I did get a MILD flare. I just did what I normally do, drink a lot of water and let my bladder rest.

I want to thank all of you for all for the wonderful advise and support you have given me.

A special thanks to Jill for encouraging me and guiding me through the whole exercise thing. Jen, Katrina, VM, dianne, dixifireball, & all the moderators. Of course everybody else who gave me advise.

I just hope that I'm not speaking to soon. It's just to good to be true! I feel like a completly new person. Some of the things I did that helped me:

*Support from this web site & My wonderful Husband :)
*Prelief (lots of it...still use it)
*Algonot (still taking)
*Atarax this is what helped the most in comonation with the Elmiron
*Elmiron
*Elmiron instills (Elmiron, lidocaine, and bicarb)
*HYDRO'S!!
*Marshmallow root tea
*Colostrum
*cornsilk
*B&O
*Vicoden
*Ativan



Well, I have gone on long enough. I will still pop in once in a while, and you know, should anything happen...you will see me back on the boards, but hopefully I will remain in this state for a very long time

I can't thank y'all enough for the support you have given me, and each and every one of you will remain in my prayers.


Love ya all!

:grouphug:
:woohoo: :woohoo: :woohoo: :woohoo: :woohoo:


__________________
Warm hugs and prayers coming your way.

[SharonA]

What happy news. I am so happy for you. :) :) :)

[Katrina]

:woohoo::woohoo::woohoo: Yippee, I am so happy for you!!! I certainly hope you are in remission for a very, very, long time....and that a cure is created before you have any symptoms again. Thanks for sharing your story!!

[classics]

That's fantastic news! Thanks for posting the list of the things that helped you.

[K9wife]

Congratulations!!!! Is being a little envious a nasty thing??? LOL! We are all very happy for you!

[ICNJess]

Congrats!!!!

[liznazz]

Excellent encouraging news!! It is so good to read stories like this. I know your current cysto/hydro was June 9th. When was the first one done? How long in between cysto/hydro procedure till you got the good news? Wishing you a LONG TIME in Remission. liz

[hoping4acure]

again, thank you to all of you. It means alot to me. This board was what kept my going! I will never forget that.

Liz: I had 4 hydro's done in all...the one before this in June was November. The one before (November) was in April. The one I had done in April of 2004 was the worse one. I bled for 3 days with clots (gross, I know.) and the last one, like I said, there was hardly any bleeding at all. So, basicly, I was going about 6 months between hydros.

My uro told me the good news two weeks after the procedure. She actually told me that day, but I was to drugged up to remember!



:grouphug:
Louann

[Bethrlk]

It was nice to hear you are in remission.....we are all striving to be in your place someday soon!! You gave me a much needed pick me up today!

Best of luck,
Beth

[tigger_gal]

yippe I am so glad you are in remission :) I hope you stay there forever ;).. I love to hear when one of us icer's go into remission
Brat

[windwalker]

Congrats on your remission!!! Thats wonderful news! :)

[minnie_min99]

congrats on your success!! How did you do it so that the lining came back. Just wondering because mine is so damaged it is gone for good. Enjoy all the new things you can do and hope it lasts a long time

[jeannine willia]

Need2Heal....I am so happy for you and hopeful for me and the rest of us IC people...i've had symptoms and pain for a month now...have had 5 instillations...helped only a day, and am on Elmiron, Atarax, I've started taking Whole Leaf Aloe Vera, from www.desertharvest.com...have only been on the aloe for 3 days, so I'm trying to be patient...your post of success gives all us out here in the Bathroom and in Pain lots of hope..Good for you, God Bless, Jeannine in Texas

[poetgirl]

Woo hoo! :woohoo:

That's awesome news -- just the sort of thing we hope for! I hope it continues...forever! :)

[hoping4acure]

Thanks again everyone.

minnie_min99: I don't think the lining came back...it just repaired itself enough to make me go into remission. It will always be there and can come back anytime. I am just thinking possitive and hopeing it wll be a VERY long time. I listed the things I did that helped me, the two things that worked right away were the Atarax and the cystopac (algonot.) I wasn't in the worse stage either. I am in the middle some where.

I will be glad to answer any questions I can...feel free to PM or email me.


:grouphug:
Louann

[lisanki]

great i hope you stay well forever!!!how long did it take you to recover from hydro operations??

[Butternut]

I wonder if the lining heals somewhat, will that increase the chances of being cured possibly? Has anyone been "cured" that you know of? Maybe they had symptoms for awhile, was careful in diet, treatment, etc and then got better and maybe didn't have to have any more treatment?

[hoping4acure]

Hi

lisanki:

This last Hydro took about a week and a half to recover. Everyone is different though. I have read on this board that some times it only takes a few days to recover. I had one done last April and it was the longest recovery ever--6 weeks! I was bleeding really bad for 3 days with that one.


Butternut: I haven't heard of anyone being "cured" from IC. I think it's just a matter of what works for you. I am hoping that this hydro last longer than the others did. I still take precautions and I still watch what I eat. Don't get me wrong---If I never have to see a URO's office again, it would be to soon. I just keep the faith and count my blessings every day.

Thank you for your concerns.

As always
:grouphug:

Louann

[minnie_min99]

butternut,
my doctor has assured me that there is no cure yet for ic. you can feel good about yourself by following the diet and taking medications but there is no cure for it yet. there is also things like bladder replacements and catheders that you can have if you have a really big issue with your ic but i would try all possible ways of feeling better before considering any other procedures. i know that we have to do alot of sacrifices and that it may not be all that fun but it not your fault that your like this and its nobodys fault from what we know because they also dont know what causes it in all of us.

hope this helps a little

[Elle]

I am so happy for you! This is really GREAT NEWS!! :woohoo: :woohoo:

[Dixiefireball]

OMG i'm so happy for you!!!!!!!!! Congratulations!!!! I'm sorry i'm just seeing your post i've been threw so many surgery lately i had a hy may 17 then a blockage was found in my left kidney and a stint was put in last Thursday boy does that thing hurt and i have to ware it for four weeks!! So i've really gotten behind but to come back and find this wonderful post brings tears to my eyes.
not sad tears but very happy tears indeed.
I look forward to hereing more great remission post from you. Please come back from time to time to share your wonderful story to give newbies hope!!!!!
We love you hon and will always be here for you!!!!!!
Rhonda

[hoping4acure]

Dixiefireball: Hi. Thank you...I have learned a great deal from you on these boards. I always keep you in my prayers. You have been through so much! I hope you feel better soon.

I will visit, and have, as a matter of fact been logging on every so often and trying to encourage the newbies.


Take care
:grouphug:

Louann

[Ginny Doll]

These stories inspire all of us. I am on year 5 and in remission for 3 years. If I only drink water 90 per cent of the time, I feel normal. YEAH!!!! Let's pray for remission for anyone who has ever suffered the pain of this difficult disease. Hugs, Carolyn :)

[mags]

Carolyn,

What meds are you taking that have caused you to go into remission?

[Ginny Doll]

Hi Mags, In answer to your question, I take elmiron 100mgs 3 x a day, neurontin 4 times a day , nortriptilyn 25 mgs morning and night, nexium ( for reflux following the more serious surgery) , ditropan XL at night, allegra 2 X a day. Early on I took about 10 -20 mgs of oxycontin twice a day. Stopped after year 2 when I added nortriptlyn. Ironically the nortiptylyn is more effective for me than oxycontin has been. I drink only bottled water and on a rare day a glass of Grand Estates chardnonnay .. My bladder tolerates this cheaper great wine! Strange, huh? Breakfast is Kix with low fat milk ( this year blueberries seem OK) or instant oatmeal. I avoid foods with lemon or vinegar but a little of either will not give me a flare. I get a warm bladder instead and that is my signal to cool it with those additives. For snacks I eat Bit o Honey, caramels , nonni biscotti with the chocolate coating, and fat free puddings. I have gained 5 pounds in three years and so i watch it. I am 120 and trying to hold that weight. But i can tolerate almost any dessert but not Pepperidge farm cookies. This year yogurt seems fine and spaghetti sauce has been fine for three years. We do grill alot and i do marinate always but that seems to burn off on the grill. I avoid soy. No sugar substitutes of any kind for me. Ok that is the scoop. I began IC five years ago with horrible burning that felt like razor blades. It was a nightmare. My angel was Teri. She helped with many ideas and urged me to be a stong advocate for myself. I printed lots of stuff to share with my doc who worked with me. He is a regular primary doc. The uros here on Cape Cod were lousy. I did see Dr Sant in Boston who felt I was doing very well and felt my primary was right on track. I am now three years in remission and have had IC for 5. Hugs to all and feel free to ask me any questions. Carolyn

[mags]

thanks Carolyn.

[TexasHoney]

Congrats :woohoo: That's wonderful news. I hope your remission is permanent.

Take Care
TexasHoney

[bowerbird]

:) How good to hear somebody getting some relief. In Australia Cranberry juice as well as Aloe Vera are very popular... My Dr suggests that a anti athritis product is showing good results for IC and Trigone and Urethra problems, it contains Glucosamine sulfate 1000mg. Hi to you all over there!

[windwalker]

Hi bowerbird, beeeeeee careful with cranberry if you have IC, it usually doesn't go very good w/this disease, causes a lot of pain. Its alright if you have an infection or something, but well, I call it a bladder bomb lol. Glucosamine is pretty well known w/ic'ers too. But welcome to the boards and take a peek around, if ya got questions, we may have some help for you!!!

[bowerbird]

Thanks for all your answers... Great to be able to talk with other sufferers, don't feel so alone... sorry to hear about your dreadful floods, we are aware of all the terrible things happening.... like the Tsumami, so many deaths...God bless them all...

[hoping4acure]

Again,

Thank you all for your support. It's coming up on 3 months now :woohoo:
I just found out the other day that I still can not tolerate tuna fish! I thought I was going die. I haven't felt that pressure and bladder feeling for, well, like I said...3 months. I can put that on the top of things to AVOID!

Anyway, thank you again. This is an incredible site. Each and everyone of you are in my prayers. ;)

Louann

[hoping4acure]

repost:


I just past my 9 month mark of being in remission! I want to thank all of you for being so supportive.











:grouphug:

[windwalker]

Thats fantastic news!

[megancolleen]

AWESOME! May it continue!

[Oxana]

Louann, it is WONDERFUL!!! I am SO happy for you! :woohoo:
Keep it up! :dance:

[danii26]

Wow!! That's great! You lucky thing. I just wanted to ask all the people that are taking lots of different meds how you know what is working for you? I'm only taking Elmiron (3 times a day) and Desert Harvest Aloe Vera Caps (2 x 2 times a day). Because I've only been on Elmiron for around 3 months now I don't want to try any more meds because then I won't know whats working for me. So how do you all know whats helping you?

[hoping4acure]

Hi Danii.

If you go back to the beginning of this thread, you will see what helped me. I am currently still taking the Algonot (2) 1xday and Flax oil 2,000mg a day.

I think what helped me at the onset of my IC is the Elmiron and Atarax combo. I stongly believe (just me now) that the HYDRO's were a big factor also.

I would stick with the Elmiron for another 3-4 months to give it time to work, I believe I started seeing results about 6-7 months with the Elmiron and 2-3 with the Atarax.

What symptoms are you experiencing? I was a huge pain patient (24/7) so, I had just about every symptom. Biggest complaint was PRESSURE and urgency/frequency.

I am confident that you will find the right combination that is right for you too ;)





:grouphug:

[Franny]

Congratulations Need2Heal! :woohoo: I have tried Flaxseed oil but felt it bothered my bladder. Have you ever heard or tried Primrose Oil? Fran

[hoping4acure]

Thank you!

I have heard of Primrose Oil but never tried it. I take it you have had good luck with it? I'll look into it :)

[danii26]

Hi Need to Heal

The symptoms I'm experiencing are mainly frequency and pressure. I don't experience pain which is a huge positive. I've only been on Elmiron for around 2-3 months now so I haven't felt the benefits as yet. I will give it another 3-4 months. I just hope it helps me because I'm so sick of feeling my bladder and never getting any relief. I'm also trying out the diet which is very hard as food is my best friend.

[swarr]

Need 2 Heal,

I have been reading alot of your posts and It gives me confidence. I am not so afraid, and feel in more control of my symptoms. I have noticed that sometimes I have this foul odor when I go to the restroom (sorry so gross) I wonder if it is an infection beginning to happen?? I was drinking blueberry juice to get rid of the bacteria, instead of taking antibiotics?

Sandy

[hoping4acure]

Danii: Are you on Atarax? That helped me with the pressure a great deal. If not, ask your URO about it ;)

Sandy: Thank you for the kind words, believe me, it has been a long haul for me and I am thankful for ANY amount of remission :)

about your question...I used to drink a ton of blueberry juice, and I never got that, I would call your doctor. It sounds like it could be an infection.

[swarr]

Thanks for the reply. Wishing you continued success.

[Franny]

Need 2Heal I haven't tried Evening Primrose yet but heard in another post that it is helpful . Something about increasing prostaglandins that are supposed to increase the mucus linings of your body. I think I read it in the "hormone" section by a member who is also taking Misoprostal (which is an ulcer medication which has put her into remission).

[hoping4acure]

oh yes...I did read that and I know who you are talking about. I'll try that (Evening Primrose) should my bladder start to scream at me. Thanks.

[helenprestegard]

COngratulations, im so happy for you . I had a hydro one year ago , that put me into remission, I now can cycle, walk, look at my kids and think ,wow where did the years go?I will have another hydro , I felt wonderful afterwards. I take now DIFLUCAN,aUGUMENTON,AND A SPASM CONTROL PILL. Beore my hydroI was on morphine, Oxycontin,Sleeping tabs, pain narcotic patches. YOu name it I tried it. I wondered what your email address was. I was so dreadingthe hydro, but the doctors give me morphine before I even had time to wake up from it, So Ifelt nothing at all. I had previously done self catheters, DMSO.
I am also taking natureal enzymes, they give me energy, and drinking lots of warm water. I definitly stick to the IC diet, But eat a lot of chocolate, which does not affect me. WIne , fruit, and yeast products are my downfall.
HOpe you all get some relief soon, I know there is an answer to this , I feel it will come very soon. I have had Ic for 8 yrs and I have seen tremendous changes in the way it is being dealt with over that short time.
Helenx

[hoping4acure]

REPOST....

It's been a little over 2 years now but...now I'm dealing with PFD! Does this ever end? :rolleyes:

Still keeping a positive attitude. The PT for the PFD is going very well. A big thanks to Jen for all of your encouragement :)

Overall, I feel wonderful.

Again, thanks to each and everyone of you for all the support and kind words.

I pray every night that someone comes up with a cure for all of us!


:grouphug:

[sandymarie]

I am sooo excited to hear a good report. Take care and keep us posted. I must have missed your post on the things you did, but let me know. Keep doing what you have been. Live life and never look back. congrats.

J.J.:woohoo: :woohoo: :woohoo:

[hoping4acure]

Hi SandyMarie...thank you for your kind words, here are some of things that helped me:

just hope that I'm not speaking to soon. It's just to good to be true! I feel like a completly new person. Some of the things I did that helped me:

*Support from this web site & My wonderful Husband
*Prelief (lots of it...still use it)
*Algonot (still taking)
*Atarax this is what helped the most in comonation with the Elmiron
*Elmiron
*Elmiron instills (Elmiron, lidocaine, and bicarb)
*HYDRO'S!!
*Marshmallow root tea
*Colostrum
*cornsilk
*B&O
*Vicoden
*Ativan

I can't thank y'all enough for the support you have given me, and each and every one of you will remain in my prayers.

[hoping4acure]

REPOST for a PM I received...

[daphne]

That is great! I hope it is forever. It took many different tries for me including hydro and instills for me to go into remission. I finally found a great Dr. in Connecticut Dr. Jill Peters-Gee. She is a Uro-Gyno. I had to go throuth rescue instills and I am finally on Lyrica and Vicadin. I just put up with the frequency (all the meds were to drying). I was so bad I considered an interstim. I just stated a flair 3 days ago (boy was I peeved). I had High levels of leukocyes and some blood but of coarse the culture was negative. So I take extra vicadin and add valium, also I find that ice and heat helps. I think it was brought on by stress. Does anyone else get flares from extreme stress. I am on Wellbutrin and Topamax for depression so that helps keep some stress down.:bonk: Hope all goes well with you. Keep up what you are doing.

[hoping4acure]

stress is a huge factor with alot of us...including me. Yoga, relaxation tapes, and acupunture work wonders.

Good luck

[hoping4acure]

*REPOST*

Sorry to keep reposting this, but I am getting PM's asking about my remission sorry...

[hoping4acure]

**repost**

[hoping4acure]

**REPOST**

:smile tee