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Hello, all. I am new here.
I was diagnosed a few months ago with IC. Like many, I'm sure, I have had urinary tract (and IBS, reflux, and asthma) issues my entire life. But one day in March, I knew that my UTI was different. To make a long story short, I couldn't get in to see a urologist for weeks after my primary physician gave me the suspected diagnosis; so, I read everything I could get my hands on. On the one hand, I was so pleased to find that it was not crazy that wine, sodas, and orange juice seemed to cause "UTIs" for me. On the other hand, I've been so depressed about the incurable part.
I've read and listened to all of the information that says I didn't cause it--I just was a lucky recipient of this fun diagnosis. But deep down, I knew that my terribly unbalanced diet that was facilitated by my parents from a young age had to play into it. This is embarrassing to admit, but I can remember as an elementary-aged child and well into young adulthood drinking 4, 5, or 6, Cokes in a day. I can't believe my parents allowed that! I gave up the habit years ago, but still drank one or two a week until this happened. I also enjoyed alcoholic drinks, though only socially. I also have never enjoyed vegetables, and being a really thin person, I never saw the need to change my diet. If you look okay, then why change your diet to be more healthy, right? What a mess I've made!
I've also dealt with a lot over which I haven't had control lately, and I'm sure major life stressors didn't just coincidentally occur at the same time as the onset of IC.
I travel frequently by plane for work, which seems to make things work, but with lots of water I'm managing things. My physicians have me on fistfulls of medication (e.g., Tagamet, Atarax, Elmiron, Cysta-Q, Prosed), and I don't feel great about that. But I was not sure where to even begin. Anyway, I'm happy to find this site (which I happed upon out of desperation for something else to help). I can at least begin by starting with the more restricted diet--I've been eating ice cream every day, because it is on the ICN diet. No wonder I feel so bloated and awful every night (as I sit here suddenly looking 7 months pregnant). I knew that was a bad idea, but it is "allowed." Sticking to the incredibly short "list one" will be hard, but I guess I've already worked through the greiving of losing my favorite foods. As long as I can believe that eventually I will be healed and able to have most of them (I miss strawberries and tacos SOOOO much!), then I can cope. Well, most of the time. The past few days have been anything but pain and tear free.
For now, flying cross-country is not an option, but I have a work trip scheduled in CA in October and am hoping so piggy back a visit to Dr. Britzman. Insurance will not cover me out of network, so that will have to be figured out if I'm to do this, too.
Ah well, things are good, though. i'm fortunate to have an INCREDIBLY supportive husband and children. I wrote my sweet husband in the middle of the night after I learned of the diagnosis and sent him a link. It was a depressing link that gave the statistics on sex and marriage difficulties--something like 79% have marital "breakdown." His response the next morning when he received the email: "The only thing I can promise is that the chance of marital breakdown will be zero%." I cried. How great is that? I do have some pain-free days, and I'm fortunate enough to have a very flexible job where working from home is always an option--unless I'm scheduled to travel, which is only about twice each month. Overall, life is good, and I am thankful for all that I have. This has taught me to be thankful for everything I have at any given point. It's also given me new empathy and caring for those who suffer from chronic pain.
Thanks for listening. I look forward to making my way through all of the entries here.
Hey there, Lee Ann, I'm at
Hey there, Lee Ann,
I'm at work so must be speedy, but didn't want your post to go unanswered. Sorry you've had a crap couple of days. V glad you've found this site. I developed IC last October, had a grim couple of months, then started tackling with diet and acupuncture. Got myself into a much better state, and flew out to see Matia in May. I've only been on her protocol for two months (and had a flare in the last couple of days!) but I feel like I'm seeing more good days - more days where, in fact, I'm symptom-free - since seeing her (frequency and urgency resolved with the diet alone). I've had IBS for years too, and that's been awful for the last couple of months, (constant diarrhoea - lovely!) but that, too, has settled since she upped my probiotics, only flaring a little over my period. I'm expecting this to take a long time, but I feel hopeful and, crucially, supported. It's too confusing to tackle on your own. If you can get out there in October, do! And really go for it with the diet, meanwhile - it helps tremendously. Oh - and if you're taking birth control pills, stop if you possibly can (I'd been taking them for 15 years - major part of my problem, along with endless NSAIDs, a course of steroid injections and gallons of antibiotics!)
Oh, and don't stress about the coke - it's in the past. I grew up in the north-east of England in the 1980s. Don't think I ate a salad until I went to university. All you can worry about is what you're doing now!
Sx
Welcome Lee Ann, You may
Welcome Lee Ann,
You may notice changes in your pain level as well as other symptoms with switching to diet list 1. It will not treat you by any means, but hopefully it will alleviate your most bothersome symptoms.
Before anything else may I
Before anything else may I say how wonderful it is that your husband wrote that to you, that must have been such a comfort and relief.
I am also a UK patient and have been with Matia since January. I didn't think I would be able to make the trip as I was in so much pain and discomfort but somehow I got out there and although I have still not really seen any improvement yet (had some better days but going through the mill a bit at the moment) I still feel there just is no where else to go and she understands this wretched disease more than anyone else.
I am glad that you have some pain free days and that hopefully is an indication that you will respond well and quickly to the treatment. I have not had a pain free day since my IC started last July but I hope that in time they will come.
You also sound like you have your head in a good place which will also help you so much. Keep the faith and at your next opportunity see Matia, you will not regret it.
It is hard, really really hard but she has helped so many to regain their life that it is worth the fight.
We're all routing for you and of course we're all routing for each other.
WELCOME!!!! I think we were
WELCOME!!!! I think we were all super scared to start list 1 but it does seem so incredibly limited but most of us do not stay on it very long. It really depends on your case but I was only on it for two and a half weeks. I have been in treatment since January and was already on list 3 by May. So don't fret by the diet... you will grow SO USED to it. I don't even think about going to list 4. It kinda amazes me how I have adapted to this way of eating so quickly.
Also like the advice given to you earlier - get off you birth control if you are on it. My symptoms went down 50% within a month of getting of bc. (Again we are all different but you might see a change). And Matia will not want you on them.
You are making the best decision of your life by being under Matia's care. Oh, and your husband seems awesome.
Welcome! I loved your post,
Welcome! I loved your post, thank you!
I have been with Matia for two years now and dealing with IC for 3.5. Like you I went through all the conventional, urologist routes prior to getting here as well.
I am a commercial airline pilot and had to take over a year off work because the medications weren't allowed by the FAA. Then I found Matia and got off all that junk and started feeling well again and got back to flying. I am not completely symptom free (far from it actually) but mange it well with diet, lifestyle and herbs. My job flying every week is a definite obstacle to my progress but I have accepted that and know it may take more time, but in the end I will be well and still doing what I love! Anyway, I can share my tips and thoughts with you on how to TRAVEL well with IC. I am fortunate because I am able to bring liquids through TSA when I travel in uniform, which is always what I do. It's a bit more challenging for regular passengers I know. Message me or contact me through my site http://www.destinationwellness.us
All my best and definitely get in with Matia as soon as you can! You will never regret it.
Warmly,
Samantha
Wow!
Wow! Thank you all so much for your kind responses! I can't tell you how much that meant to sit down here tonight and read all of that.
I made a trip to Whole Foods today and bought foods that were on list one. I haven't had anything sugary today, and I feel so much better than I did yesterday. I'm not nearly as bloated, and my symptom of pressure is pretty mild. I wonder if it may have been the dairy and sugar causing all the bloating. I've never been that into sweets, except for strawberries, so I'm fortunate that cutting those out may be easier for me. But I did eat cartons of strawberries each week. Guess that may be part of the problem... Anyway, mostly I miss fruit and tacos and cheese. Man, I LOVE cheese! Okay, I digress...
As for birth control, I have a question: I've not been on birth control pills for ages, but I have a Mirena IUD. Does anyone have any experience with this? Could it be causing a problem? I've had it for 5 years. I only have it to regulate my periods but don't need contraception. I wonder if I should have it removed.
I'll definitely look forward to learning more about travel with IC! I have a flight next week, but fortunately it's just a short 90-minute flight, then return the next day. Lately when I fly I make sure and drink tons of bottled water while on board. I fly Delta and drink whatever bottled water they serve. Dasani, I think.
Anyway, thank you again for your kind welcomes. I've enjoyed surfing around the site and reading posts from everyone here. I'm learning a lot but feel I still have so much to learn. I sure wish I could get a jump start on what supplements to take/not take, but October isn't that far away.
Take care, all.
Oh
Oh, and I was taking 6 ibuprofen each day and stopped that today. It was really scary to stop something that I thought was helping with discomfort and inflammation, but I did. So far nothing awful has happened.
I agree with Christine, try
I agree with Christine, try to drink a nicer spring water. Matia insists on this because filtered waters still have chemicals and chlorine in them. A few spring waters I have heard were good were Arrowhead, Poland Spring, Deer Park, Evian. She will tell you which one to drink. Her favorite is Arrowhead. I personally drink Poland Springs because I am on the east coast. As for the birth control ring - I am not sure but I think she will tell you to take it out? That's a great question and I would love to know what others say.
Hi and welcome! I just want
Hi and welcome! I just want to say like everyone else you are making the right decision coming to see Matia. I've been a patient of her's since April and am doing much better already. I am also on List 3, some people can move pretty fast through the lists. I just wanted to say i am glad you stopped the ibuprofren, that stuff is bad for IC and also try to only drink Spring Water, it will make a difference!
Hi
Lee Ann,
I have been a patient of Matia's for a while and would highly recommend reading her dissertation. It will help you start to put the piees together. Regarding birth control, I think Matia recommends condoms. Do a search on this site to find the best birth control advice. Glad you are starting on your road to wellness!
Thanks, you all! I filled
Thanks, you all!
I filled out the patient form on Dr. B's website and look forward to hearing back. I didn't realize that bottled waters were different (e.g., spring vs. filtered). Thanks for the tip! At home, I've been drinking Deer Park, which seems to be on the list. But at restaurants I've had tap water. What on Earth are we supposed to have at restaurants??!! Lots to figure out. I'm busy with work today (and into the night tonight) and tomorrow, but then I'll start making my way through more of your posts to get answers to the many questions I have.
Today was an almost symptom-free day. Woo hoo! Well, except I'm pretty hungry. That's a super low-calorie list there! But I'll take hungry over crotch-on-fire any day of the week! :)
Thank you so much for your kind support!
At restaurants, I order tap,
At restaurants, I order tap, but only take a few sips. Did you know it's much better for your digestion not to drink anything with a meal (hot tea is ok) because it's like cooking rice and adding cold water to the cooking process halfway through. Think of your stomach like a rice cooker. Throwing in cold water in the middle completely messes up the cooking (digestive) process. So I order tap when out, take a few smal sips if I need to wash things down, but otherwise drink my spring water before and then a half hour after the meal.
Also, I fly for Delta. The Dasani is not a great choice for us, though I can tolerate it okay now and then. I BUY bottled spring water in the airport (inside security) before the flight and use that as much as possible. Also, it sounds like you must fly First Class a lot because on Delta, if you fly coach, they use spring water in BIG 1/5 liter bottles in that cabin to fill the plastic cups, but in First you get those little individual bottles of Dasani. Just a tip! I wouldn't even bother asking them to let you use the water from coach if you are in first....I know that would be somewhat annoying to them and I hate being such a burden when I can't get into the WHY i need spring in the first place. So just buy your own after TSA, but make sure it's spring! Hope that helps.
IUD
Regarding the IUD, Matia has told me that Hormone FREE IUDs are okay for some people once they are well into/out of treatment. I believe Mirena is the IUD with hormones in it, so she will probably suggest you have it removed. There is one copper (hormone free) IUD in the US market, I think, but I'm not sure what it's brand name is.
Thanks, you all. The Mirena I
Thanks, you all. The Mirena I have is almost at the end of it's utility anyway, so it seems that removing it certainly can't hurt my IC. It's been nice to not have periods, that's for sure.
I don't buy first class tickets but am gold so I get bumped pretty often. I would have never noticed what type of water was on the cart before. Thanks for the great tip--I'll know to buy spring water if I'm in first. I'll definitely be in touch before a couple of international trips I have next winter. Sounds down right scary to me right now.
Off to watch TV with the family with a big glass of spring water and not think about IC now :)
Lee ANn- It sounds like you
Lee ANn- It sounds like you are totally on the right track and you have a great attitude!
As far as being hungry- list one doesn't need to be low calorie. I eat a ton of butter and you can have potatoes and rice as well. I had lost more weight before starting Matia's diet because Iwas reacting to so many foods, i couldn't figure out what to eat. Make sure you get enough fat- that will keep you satisfied.
I'm new too
Hi Everyone. I'm new as well. I posted a few weeks ago asking about peoples experiences with treatment. I have been on the List 1 diet (almost completely)for the last 3 mos. Have been wanting to go see Matia to get started with treatment but was concerned about whether I would get sick when I start treatment, as I take care of my mom who has dementia. After hearing others responses and encouragement, I made my appt. I'm flying in on Tuesday, 7/12 and will see Matia on 7/13 & fly back that afternoon. I'm SO excited and a little nervous. There have been so many times that I have seen drs thinking this would be the day that I get answers & will get well, only to be disappointed. I don't feel that will be the case this time. I can't wait! I'm anxious to see what her estimation of how long I might take to get better. I'm also wondering which list I'll be on. I have a feeling it will still be list 1 for awhile as I still get alot of reactions to foods. I hope everyone is doing well. I'm glad this forum is here for us. It helps to hear of all the weird stuff others go through. It makes me feel less alone with all of this. My friends & family try to be supportive, but I can see their eyes glaze over if I try explaining why Im on the diet or that I'm feeling sick yet again. Thanks for being here :-)
So happy to hear you made an
So happy to hear you made an appt! Let us know how it goes!
Re: Hello I'm new
Thanks Christine. I'm so excited. I will post after my appt.
Good luck with your trip! You
Good luck with your trip! You won't regret it!! As far as diet- I think it is so individual. I am sure my IC is relatively mild compared to what i read on here and other places yet I am super reactive to food- I am still on list 1 and I am disappointed but I am realizing food is my big trigger. I know i will be moving along eventually. When IC first started-I didn't know wht the heck to eat. I was so thin. Matia's diet has helped so much and it is such a relief to have someone else helping me navigate. Now i aM still thin but good thin.
Take care!!
Thank you Deir. I look
Thank you Deir. I look forward to sharing my experiences with treatment with everyone. Can't wait to go!
Hi, Lisa!
Hi, Lisa. I tried to respond to you the other day, but I only had my iPad, and for whatever reason I couldn't type in the comment block. Anyway, glad to meet someone else at the beginning of treatment. I'm so glad you are able to make the trip to CA so soon. I look forward to hearing how that goes for you. Best of luck with the travels. Lee Ann
Hi Lee Ann , I'm here now &
Hi Lee Ann , I'm here now & will see Matia tomorrow. I'm staying at the Holiday Inn Express nr her office. I should have been much better prepared- food wise. Starting with trying to get lunch at the airport. I thought I'd be able to get a plain hamburger & maybe a baked potato, but all I could find was Subway,pizza, Italian. So I waited until I got to the hotel- no room service. I went out walking around & found a restaurant where I got a steak. I also got a chicken breast & baked potato to eat for breakfast as I'm sure I can't eat anything they're serving. Also, there's no pool at this hotel & nothing to do nearby . Oh well, that's not what I'm here for. Just thought I could pretend that I'm on vacation. Very anxious about tomorrow. Hope Matia doesn't say I'm too far gone & she can't help me. I've got to stay positive. Hope everyone is doing well today.
Don't worry, I don't think
Don't worry, I don't think she would ever say anyone is too far gone to help!
You will like Matia. She is
You will like Matia. She is nice, intelligent, and down to earth. I had enough time to discuss everything and we finished about 15 min early. I picked up Megadophilis from her office. It stayed cool all the way to the East Coast. Good luck tomorrow!
Hi! Take the bus down to
Hi! Take the bus down to Santa Monica pier and walk around if you are feeling up to it or do a tour bus. I kind of felt like I had a mini vacation when I was there. God knows we all need it!
Lisajpl, u will be so pleased
Lisajpl, u will be so pleased that u decided to make the trip to see Matia. She would never turn anyone away. She has helped so many people. I have got my life back with her treatment. I cannot speak highly enough of her, she is very kind and patient and the guru on IC. Let us know how u get on. Best wishes.
Had My Appointment
Hello everyone, Well I had my appt with Matia. You all were right. She is great! Very easy to talk to, compassionate and nonjudgmental. She says it is a good sign that the diet alone has helped my bladder symptoms so much. Shes starting me on a couple of herbs and said I can go to List 2 provided I do ok with the herbs.I left there feeling very encouraged and hopeful about getting better, something I haven't felt for a long time. She validated all of the things I've been feeling for awhile- depressed, no enthusiasm about anything,feeling isolated. She said living with a chronic illness can have that effect on us. it was so worth it to make the trip. I'm soo glad I went. We talked about using safe products also. I was going to buy some & bring them home but Lynn said they won't let you carry them on & I didn't have any check in luggage. I understand that shipping costs are pretty high. Is there a list of safe products or can you all share which ones Matia has said are ok? I'd like to be able to get some from Whole Foods. Hope everyone is doing well.
Glad you had a good visit!
Glad you had a good visit! There is a lot of info. on products if you search this forum. I think lotion can be big flair inducer. I use jojoba oil on my legs and face, it works pretty well. I bought organic shampoo and conditioner from Jason and do fine with it. I am fine using Ivory soap and I know some people use Dove and do ok. Make-up doesn't seem to be a big problem for most, I only stopped using lipgloss and bought some natural stuff. I also switched to floride free toothpaste and aluminum and paraben free deoderant. I would buy sunscreen from Matia if that is something you would need, they can be very harsh.
Trying to "clean up" my products
Thanks Christine. I went to Whole Foods and got the stuff I needed. I wasn't able to get the herbs for my protocol so I had to order them. They'll be here Tues or Weds. I'm looking forward to starting them. I hope I can tolerate them my body is soo sensitive to everything. Even without the herbs, I've noticed that when I have done things like stop drinking all water that isn't spring or remove rice from my diet, I seem to have some dieoff type symptoms. Weird. I look forward to the day when I am no longer ultra sensitive to Everything. Hope everyone is doing well :-)