Hi older long time patients- question for you

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As most of you know- I have not responded so great to this treatment (as far as symptoms go- maybe inside is healing!) I came into this almost a year ago thinking I'd be super fast due to what I considered mild IC with no other health issues besides PMS. I also cam einto this already eating an almost completely whole foods diet. Well, I am struggling. I truly believe in Matia and in this type of treatment but I would love to know if there were any other patients who took a long time to see any improvement or even got worse in my case- and still went on to heal? I was hoping maybe some older patients knew of someone who started off pretty mild as far as symptoms, struggled and reacted but got better? I was doing so well emotionally but this past month has been terrible and I am really struggling to have faith in my body's ability to heal.I'd love to be able to contact someone directly.

btw- I have never once cheated. I wish I had so I could blame something.

 

 

TIA

flygirlsam's picture
flygirlsam

I wish I could be one of these people you are searching for and I am still hopeful that someday I will be (right along with you!). I started treatment in 2009, but as you know, I cheated from time to time (not badly but I guess enough to not work for me which stinks because i put in so much effort 99.9% of the time).  I do think once people are well they never visit this site again.  I'm sure it wouldn't be on top of my list to come back here, truthfully, for fear of dredging up old fears and anxieties.  Just reading through all the success stories really helps, I find.  Being that you haven't cheated is tough indeed, but I just keep thinking, it took SO long to get to this point and the body just can't be rushed.  The more you worry about it and obsess over it the longer it will take. Some days I honestly think, well, I might deal with this forever, it is "chronic" after all, but at least I know I am in great hands and at least my symptoms are, for the most part, manageable compared to what they were before.  But, I completely get how frustrating it all can be.  I think matia needs to stop giving people the "you should be well in a year" statement...yes, it provides hope, but we are mostly so anxious and type-A as it is, it doesn't help when that doesn't happen. I feel it makes me more impatient and anxiety ridden. Ugh, hope this is making sense.  Anyway, I know, in my three years of being on this site, that I have seen many forum names come and go, presumably because they got well. I hope anyway.  Many names that were once famliar just aren't here anymore. I do hope yours (and mine) is one very soon too.

deir's picture
deir

Thanks sam. Do you really think if I worry about and obsess over it-it will take longer? This makes me even more obsessed? Because now I have the pressure of not obsessing! LOL
But really- this is not a rhetorical question- how does one NOT worry about this? I have found some helpful tools along the way but nothing takes the fear completely away because this discomfort is so unnerving. If I have a good stretch of days I am fine. I was never prone to anxiety before IC.
 
You have improved some though right? I can't say that I have yet at all. In fact- my symptoms are worse in some ways.  That is what is scary! Again- I was never horrible like I see some people describe on here but still my life is very much hindered by this.If I could see some tangible improvement I would not be so worried. Infact at this point I'd accept some discomfort if I could just have soem decent stretches of days. I guess I could live like that. I have an appointment on Wed and I need to be really honest and just figure out  how to get some perspective with this.
 
I also hope you leave this site soon- and I mean that in the most positive way!
 
Thanks so much

fahlmank's picture
fahlmank

Deir, I hope I can be of some help.
As you know, I am only 9 months into treatment with Matia, but this is not the first time I have had a go-around with IC issues. When I was 19, my onset was severe- I began working with an alternative Dr and following a diet very similar to Matia's anyway- It took me about two years to feel some real ground under my feet.... to be able to look at my day and say... "Well, for most of it, I will not be in pain." I would certainly have flare ups depending on what I ate etc. but the waxing and waning became less over time until I realized that I really wasn't symptomatic anymore. I went on living my life and fell into "standard American" eating habits that landed me back into IC world. I also do think that having a baby really threw me for a loop and took my body awhile to rebalance the hormones after delivery and subsequent breastfeeding. Not only was my body trying to find a balance back from childbirth but also an imbalanced gut. 
Also, when I contacted a number of Matia's patients when I began treatment one woman said it had taken her four years to get her life back and a full year before she began to see improvement.... she admitted it was slower for her than for most, but she was very glad she kept at it and now has her life back;)
You will too--- You are too full of life not to;)
Katie

deir's picture
deir

Oh katie- THANK YOU! That really helps a lot!
 
*edited to add* BTW- the next time I go into this same old thing- you can tell me to check your old posts! LOL

flygirlsam's picture
flygirlsam

Have had definite improvement, that is for sure! Just so subtle and more often than not I seem to plateau and then not budge for a long while. I still get die off from time to time but those instances are so less frequent which is a good sign. In the first year I waxed and waned but got about 60% better I guess. But then plateaued and feel like that past 2 years have only inched along (some my own fault). So hang in there. I do think obsessing will hinder progress. I know stress drastically affects my burning and frequency, but as you say how can one not obsess? It's a huge leap of faith to believe that it will all work out, but you have to. I'm about to go on vacation and it depresses me that I can't take a vacation from IC! I just want to not think about every single little thing I put in my mouth. I want to be able to go into a restaurant and not ask 8 million questions about the food. I want to stop writing down every food I eat and every time I poop! I've had enough! But somehow I keep believing it will someday be a thing of the past. I'm amazed at the education and gratitude I've learned along the way so that has been one positive from it all. And meeting some new, lovely friends here!

deir's picture
deir

Thanks!! I hope you enjoy your vacation.
 
YES! it will be a thing of the past!!! I am grateful for some things already too. This has already been such a huge spiritual journey for me and for that I will always be grateful.

Vicky's picture
Vicky

I know it can be frustrating sometimes but as the progress is very slow, it can seem for a while that you are not improving much.  I'm already 3 years in treatment, and I was a mild case too, my improvement has been quite slow as well, but you surely get better as time continuous.  I still have some issues, but everything has gotten better and I feel a lot more healthy now.  I notice that I forget about improvements sometimes and that I suddenly feel that something has passed or has gotten better.  What triggers my symptoms most now is stress, when I'm going through stress, I know that something will pop up.  When I realize that it's causing me pain or symptoms, I try to relax and calm down :)
Although it seems like you are slowly improving, a lot is going on in your body and you are getting better.  You will also get there!!
Vicky

natasha149's picture
natasha149

Hi Deir:
I think I may be of some help, I am a very old patient of Matia, I've known her for almost 8 years. I was in treatment twice (if you search for my posts, you'll see pretty much everything I went through: relatively fast recovery the first time, about 2 years with horrible upps and downs but still a recovery, very easy pregnancy with a health baby, slowly going back to unbalanced eating, Chinese food, sushi, tons of fruit instead of normal dinner, etc. I relapsed terribly withing a year and rushed back to Matia. This time it took me much, much longer, about 8 months of pure agony and then month and months of ups and downs, but today I am symptom free, eating very, very well and remembering lessons I didn't learn the first time around. My bladder and general state of health is 99%. I am actually grateful it is not 100, because (it might sound crazy), but I am holding on to this 1% of unwellness as an insurance to stay back on track with food, staying away completely from sugar and alcohol and other bad habits. If I overeat fruit I would have a very vague sensation in my bladder the next day, but enough to remind me what will happen if I keep doing it. So this is what recovery is like for me and I am eternally grateful for it. I am also grateful for someone/something giving me enough strength and patience to hang in there through all these years. I rarely visit this site, even though I keep in touch with Matia and have appointmnets with her every 2-3 months for maintenance and all food/health questions that I might have. EVERY CASE IS DIFERENT! I am sure you've heard it a billion times, but I can't help but repeat it. But the bottom line is you WILL RECOVER if you stay with Matia. Unfortunately I can't tell you the time frame, but you absolutely will!

deir's picture
deir

Vicky and Natasha- THANK YOU SO MUCH!
 
I just had an appointment last night to talk about this and help me get some perspective. This whole process has been such a process of me getting to deeper levels of acceptance. I have not done well- or as well as I expected.But I believe so much in the idea of whole body healing and I know I am on the right road. I am currently trying to accept the fact that I am a tricky case and I am not a superstar as far as fast healing goes! It is hard enough for my ego toaccept that I was sick to begin with. But I can't keep trying to convince myself that I am seeing improvements that just aren't there. The reality is I am having a rough time BUT I know I need to go through this. I want to be a healthy old lady! My husband and I talked about what it would be like if I was doing conventional treatments for this and it just makes us shudder. I say a prayer of gratitude that I chose this road even if it is a long and rocky one.
 
MY next level of acceptance- Maybe I will never have another glass of wine. sigh....I'm trying to get there!
 
I appreciate SO MUCH both of you reaching out to me!

soniafa's picture
soniafa

thanks Vicky and Natasha! you made my day

Mrs. A's picture
Mrs. A

I have read and reread both of your posts.  I sure appreciate you both taking the time to encourage us. :)

jumper's picture
jumper

hi everyone, 
Thankyou so much Vicky and Natasha, flysam for all the positive feedback, its lifted my spirits enormously i could cry!
So good to read these posts as i,m also feeling very similar to Tia, ive had a very bad month emotionally.
 Matia originally  predicited it would take me 18 months to get well, i was hanging onto that so now i,m finally 18months in,Its really sinking in i,m not going to get through this that easily .I have made progress symptoms wise ,especially in the day but its mainly down to the fact i,m still on a very restricted diet, as evertime i try and move on it aggravates again, My nights are still on & off ,i,ve had a few nights completly symptom free but it doesn't last long,  So its nowhere near the progress i;s imagined as i started out so well with her. But reading flysam's posts is enncouraging too as i too seem to plateau and then take 2 steps forward , one back etc but at the moment I find myself questioning everything and suffering lots of anxiety , weepy etc, which is not something i had before, its probably part of me coming to terms with the fact that this is going to take me a lot longer than i thought and still not being able to act normally around friends family , travelling etc ...i,m stressing the longer this goes on the harder it is to justify my journey.  i know i have to get busy so not to dwell on it and make myself worse as sinking into negative thought patterns will affect my body. and ineed to hangonto the fact how easy to perspective changes on pain. I read my diary last night from a year ago , as yesterday i was obsessing that i was better then than now, and i could eat more things that now i can't tolerate but when i read it back it made me smile as i realised i wasnt at all,i was recording lots of day symptoms which is something i rarely think of now, apart from occassional frequency if skip lunch .
I  usually avoid the forums when i,m feeling "dodgy" but these posts are fabulous so thankyou & big big KISS to you all.
louise .x