Update from an old timer

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Hello everyone, I haven’t properly posted in a long time, I wanted to have some improvement before I sent an update. Last year was a really bad year for me with the IC. I had so much pain from September to January that I felt like giving up to be able to find a painkiller that could give me some relief because I was really getting worse after thinking I was improving the year before, but in my heart I didn't want to give up, this is the path I wanted to take, it makes the most sense to me and I want to bring my body back to health not mask the symptoms. It was just very frustrating and exhausting not to see the improvement I had been hoping for after sticking to the protocol strictly for nearly 4 years. I spoke to Matia about this in my appointment in January and we decided to try something new; I came off everything for 3 days to see where my bladder was without herbs and there was no improvement which scared me even more, then we took out all starch, fruit and homemade agave treats and even starchy vegetables, no carrots etc. We added back in SF722 which had caused me so much pain last year and this time I could tolerate 12 capsules a day! It was hard to go back to being so limited with my diet and It took about 3 months to finally get some relief. About 3 weeks ago I started to have true comfort in my bladder for the first time in 4.8 years and the first time in 4 years of treatment. I've gone from peeing 30+ times a day and 4+ times at night (It's so unbelievably exhausting to live like that for 4.8 years as I know you all know) to 16 times a day and 2 times at night. I'm almost afraid to post this as I don’t want to jinx it, but I'm hoping that I've finally started to improve. Matia has been her usual kind, patient and amazing self through all of this and through all my fears and I'm so pleased I didn't give up. I still have a long way to go and as I write this I'm aware of my bladder, but I know around lunchtime the irritation will ease for hopefully the rest of today, I just hope this progress will continue now (and I really hope I can add back in coffee soon, it's what I miss more than anything ;)). I just want to say I know cutting out starch isn't good for most people with IC, Matia said it's rare for people to be able to be able to handle it, but my body seems to be able to handle it really well. I eat more often and I eat more food in general (I mainly eat meat, veg and cashew nuts) but it tastes a lot better to me now and I feel like I'm eating real food since cutting out starch, its weird. My husband has done it, too (when he eats at home) and he's noticed the same thing.

For the people who are struggling to improve I hope this gives you some encouragement as I've been that person struggling to improve for so long and the last 3 weeks of improvement with better sleep has been really huge to me. :)

C

btarrh's picture
btarrh

Thank you for sharing :)  I plan to begin treatment soon, and it's posts like yours that give others like me hope!  I'm so glad you're feeling better!  Please keep us informed on your journey! 

 

Hugs,

Brittany

deir's picture
deir

C-

Wonderful update. For those of us who have been at this for a long time- we are not crazy or stubborn- we are amazingly strong, brave and determined!!!

deir's picture
deir

C-

Wonderful update. For those of us who have been at this for a long time- we are not crazy or stubborn- we are amazingly strong, brave and determined!!!

C's picture
C

Absolutely, Deir! Though, I've felt crazy many times ;) I also feel determined, as with everything in life the key to success is not giving up :) xx How are you doing these days?

Brittany, so glad to hear you may start treatment, it's scary and a leap of faith in the beginning, but it soon becomes very clear that this is a really great option to restore health and to be able to maintain a healthy body. You'll be given the tools and understanding to take such good care of yourself on all levels. Good luck xx

 

 

Mrs. A's picture
Mrs. A

Thank you C! I am so happy for you. I can't eat grains, nightshades, and dairy. I hope to some day, but for now I can't. I tried eating out on my 34th wedding anniversary this past weekend ordering so carefully, but it was a disaster causing all kinds of bad symptoms to come back. I am still on the mend. Definitely not worth the few bites of steak that i ate. I hope you continue to improve and improve! And be careful eating out. :)

C's picture
C

Hi Mrs. A, I'm not eating nightshades though I am having some dairy. COngratulations on your 34th wedding anniversary! Thats amazing :) I can so relate, since January I've refused to eat out, it's just not been worth it to risk a flare when I know I can make something really tasty and SAFE at home for so much less money and I can actually make enough food to feel full ;) But I do miss eating out and can't wait for the day I can pick anything off the menu without fear. I hope you recover from the steak flare soon xx