Re-post for mhilliard

[vm]

mhilliard
IC Friend

Join Date: Mar 2007
Posts: 7

Confused about remissions
Hi there. I am pretty new to all of this. I hope that some of you can help me out. I have been dealing with IC for a year. I was diagnosed in Jan. 07. Last year they gave me Detrol which seemed to help at the beginning. Then I went into a month of remission and than it came back for about 6 weeks. I went off the Detrol again and I felt better. So from Septemeber until late Dec. I felt 100% normal. IS this waht they consider remission? I was VERY excited. Last Dec. I came down with bad upper resp. infection and the problems with frequency and pressure in my bladder began again. My gyno. said to start on Vesicare but that I should see my uro. again. I was seeing her for a 2nd. opinion about my bladder issues. She too said IC, but to see my uro. At the end of Jan. after taking the Vesicare and not seeing much imrovement, my uro. said he is now going to treat me for IC. I stopped the Vesicare and started Elmiron. The next day I felt so much better. Obviously not from the Elmiron that fast! Like when stopping the Detrol, stopping the Vesicare seemed to help??? Anyway, the Elmiron made me very sick to my stomach and my hair began to fall out at week 4. I was feeling much worse although I believe my bladder was feeling better. I started to become very depressed over the side effects I was experiencing with the Elmiron and thus my bladder began to flare up again. My stomach was a mess on the Elmiron even after cutting down the dose and breaking open up the pills. The doctor told me to stop taking the Elmiron. That day I began DMSO cocktail treatments. My doctor was very understanding and the nurses were so kind to me as I was a mess.

I am having a series of 8 treatments. The first four were weekly and now I am going bi-weekly. Compared to when I started, my frequency is down to like 5-6 times a day. I maybe went 8-9 which I guess isn't so bad compared to what many of you are going through.

I am handling the treatments pretty well. Other then the initial discomfort. While the frequency is down, I still have the pressure in my bladder and some occasional burning ( not when I go though). My nurse told me to give this time. Many people don't get improvements until after 6 treatments or so nad even after we will do maintence treatments as I need them. My doctor said he wants to see how I do and then maybe try taking Elival. I am scared to take any meds. after the reaction I had to the Elmiron. Did Elival help anyone?

So after all this blah.blah I have written......when you go into a remission do you feel pretty normal? I know many of you have been dealing with this for a very long time and with much worse conditions then me. I haven't felt normal in 4 months and am wondering if I ever will!

I am sticking to the IC diet as I have GERD so that helps both! I am on Protonix for GERD. I take Prelief at times and I take AZO at times to help with the pressure and burning.

I just want to feel better. I am glad that my treatments are helping and I know I have to give it more time. I know I can't expcet a years worth of problems to be solved in 6 weeks. I trust my doctors and my nurses and I know that they told me they will have to keep trying until something works.

For some reason today this is really bothering me emotionally. I have 3 small children who need to happy mom. I have a great husband but he doens't understand.

Any suggestions any POSITIVE stories to give me some hope.

Thanks for listenting and Happy Easter!
Melissa

[vm]

Melissa - You have every reason to feel hopeful and I know how scary it is to trust and believe that. I totally remember being afraid to think things might get better in case they never did. They did, though.

In the beginning, I would come and read as much as I could about IC, its treatment, symptoms, research, etc. and it helped me build my arsenal of tools and helped me partner the best I could with my uro. But.... it also scared the crap out of me when I read scary stories and outcomes. I remember logging off crying many times just feeling overwhelmed.

I think as you spend time here you'll find a handful of folks whose posts will just really speak to you. Those people are different for everyone, but when you find them - focus on what they say. I had 2 or 3 people who had very encouraging stories for me and people who gave solid, non-sensational information about IC. I CLUNG to the words of those people. That helped me SO much during the early days of my IC.

Now I have had a few years of feeling normal. I cannot remember the last time I flared. At the start I was diet sensitive and was quite strict about avoiding my triggers. As I got better and my symptoms left I was able to add back in my trigger foods - slowly and one at a time - and now I can eat and drink whatever I'd like.

I am so grateful that for whatever reason I feel good today. I promised myself way back when I logged off crying that I would STAY if I felt better b/c I wanted to be one of the hopeful stories that had kept me going in the beginning. So, when you feel better - you stick around, OK?

[mhilliard]

Kim-
Thank you so much for your reply. I am feeling exactly the way you did. I have read a lot on hear and I get so scared and afraid that there is no light at the end of this tunnel. Many times I begin to cry and that seems to make things worse. I will continue to stay on even when I do feel better. My husband keeps telling me that more people will tell about bad things than the good. That is what is so hard! On the other hand I have learned a lot about dealing with this by reading all I have. This is a great support to have.

I know I will get through this and I know things could be much worse. I have to stop asking myself why me and just accept this.

Thank you sooooooooooooooo mcuh for sharing your story with me. I am so happy you are feeling good!

Take care and keep in touch.
Melissa

[mhilliard]

Kim-
I read your story link. How great for you. I read that you take Elmiron. I was really wishing that the Elmiron would work fo rme. I was so sick on it I had no choice but to stop. My doctor agreed that I shouldn't take it anymore. He said there are other things to do to treat this, such as my bladder instills. that I am ok with having done if it will help me. I just hope that the Elmiron isn't the only thing that would have worked for me!
Melissa

[L. Thomas]

Oh please don't think this dsease is a fate worse than death.

I didn't even know what IC was before I was diagnosed. I couldn't even pronounce it. I don't know that I consider myself in remission but I do consider myself normal.

I sort of think of IC like diabetes. I have it but it is controlled with medication. I am totally satisfied with the quality of my life and IC is only a mild annoyance. I just have to do an instill when I have any symptoms and everything is just fine. I take supplies with me when I am going to be away form home for more than 24 hours.

My urogynecologist says that IC is unpredictable. He thinks that my case is pretty well set and probably won’t get worse. I can live with that.

I hope that you will be encouraged knowing that it is not the end of the world for me.

[mhilliard]

Thank you very much. I will not let this beat me. I am trying to remain positive. I know there are lots of medical conditions out there that aren't curable but helped with meds. I keep telling myself that! That is a good way to htink of this.

Your reply put a smile on my face and for that I thank you. I hope once all the newness of being dx wears off I will mentally as well as physically be in a better frame of mind!

Thank you a million times!
Happy Easter!
Melissa

[vm]

It is too bad that Elmiron didn't work out for you, but there are a lot of people for whom it doesn't help ---- but most still find things that do help. So don't worry about that - I'm sure you'll find your "thing". It may take some time and some experimentation, but most ICers do find that "something" or "things".

Your husband is SO right, Melissa. Another thing to keep in mind always, and ICNDonna told me this back in 2001 and it was a huge help to me: when you read stories on this board ALWAYS remember that most of the people who are drawn to this board and who stay are still in the battle. They are still in discomfort and are searching for their answer and support. The ICers who feel good move on b/c they no longer need the support of this board. I have seen this over and over again - they are out living their lives again and feeling good! So you will read many more "scary stories" here than good ones - keep that in the back of your mind when you get scared.

[mhilliard]

Thanks Kim! I really appreciate your kind words and advice!

[soccermom32]

Hi Melissa!
I am not exactly a success story yet, but I am getting better. I was officially diagnosed on March 1st, but have had horrible IC pain since November 2005.

I do take Elmiron and am fine with it, but I know a lot of people can't. You will find treatment that works. I also take an antihistamine called Hydroxzine, and instead of Elavil I take Nortriptyline which is the same family but has less side effects according to my doctor. I recently started another drug for nerve pain which I think is really helping.

My point is, there are tons of treatment. As you find what works and pay attention to your body, you will realize what works. I am finding out that the first 2 weeks of my cycle I can eat whatever I want (but NOTHING on the top do not eat list like caffeine, tomatoes, soda/coffee/tea etc..) and the week before my period and week of, I have to be really careful and stay away from most things acidic.

I get twice a week rescue instills and have PT for pelvic floor dysfunction. I'm in active treatment for 1 month and I can honestly tell you I feel SO MUCH better. Not that I don't ever hurt, b/c I do. I have recent posts about urethra pain or whatever. The thing is the pain is NOT like it was before treatment and it always goes away. Before I was in constant, unrelentless pain 24/7.

I absolutely 100% believe I will go into remission and get this completely under control. You will too, you just have to believe it and follow through with the treatments you can tolerate.

Reading the boards help and you will notice they move really slow. With that being said, there are a lot of IC'ers out there feeling better and not posting at all. That will be us one day soon!

[mhilliard]

Thank you very much. I am trying to remian postive. Sometimes that is easier said then done! I am glad you are feeling better! Happy Easter.
Melissa

[miz_sunshine87]

Melissa,

I also want to tell you that there IS hope, and I suspect that a lot more people go into remission than you would think from the posts on this site.
I went into remission for ove 4 years. When it came back I literally couldn't remember what it was like to have IC.

Interesting enough I also had a bad cold for over a month before my IC started up again. Maybe it wasn't just a coincidence?

Sorry that you can't take the elmiron but hopefully the DMSO will work for you. If it doesn't, there are many other treatments to try. Elavil
(amytriptyline) is one to try. I have been on it for about 5 years and it hasn't caused me much trouble, aside from making me very sleepy. When my doseage was increased I felt like a walking zombie! Luckily that affect has subsided now though.
You might also consider putting elmiron in an instillation, like with the DMSO. If it goes directly into your bladder it may not be as hard on the rest of your body. Not all doctors will do this though, but it may be worth mentioning.

Anyways, good luck and try to stay as calm as you can. You will get through this!

[mhilliard]

Thank you so much for your reply. I do get very discouraged reading all the horrible things so many people are going through. But it is a good support. My DMSO treatments are a cocktail and I believe they have heperin in them as part of the solution. I believe that is like the Elmiron. I have been thinking about the Elavil. My dr. wants to see how I do with the installs. My frequency is way down but I still have the burning and some pressure. I use prelief and I really stick to the diet. I see you take the glucoclososme (sp) does that help with pain???? I would give anything to feel normal just to get all thes bad feelings out of my head. It was so nice the few times this past year when I had no problems at all.I go for my 6th install in 10 days. They keep saying give it time. I guess I need to trust them. My dr. said they will keep at it until something works!

Thank you so much. I really enjoy hearing that there is hope out there.
Take care and feel well!
Melissa