One year on the way

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Hi everyone.
I'm new at this forum.
I'm in the treatment process for a year now.
My name is Carola and i'm from Holland.
It is hard living far away, but i'm doing all the best i
can , sometimes the language gives problems some
times the time difference.
I do know i takes a lot of time and patience to
complete this treatment, but it should be nice and
helpfull to talk to other patients in this treatment.
I'm having a very bad time at this moment, so it
might be not a good idea to start on this forum now,
but you have to make a start so here i am.
Are there more people who still feel very bad after a
year?
because i do, i do have some good times in between
as well, it's not all bad, but i fall down as easy as i
came up.

Carola

nicole's picture
nicole

Carola,
I have been intreatment a yr and 2 months now and although I have seen improvements I still have ways to go. I still  have a lot of urethra pain and I have talked to others who don't seem to get better in a  yr. It seems to depend on how you got here in the first place. For me I was on antibotics at 2 yrs old and took it my whole life. I was on it for 12 yrs allmost stright and then also did the depo when i wasnt on the antibotics. I do not expect for some thing that was here a life time to be gone in a sinlge moment. I know a yr doesnt sound like a single moment but when you compare it to the life time of damage it is. I find that what helps is to hold on to the things that have gotten better so that you know theres proof you ARE getting better. I am glad you decided to share your journey with us all here its always nicer to have more people to relate to. Honestly I do not expect to begin to feel better for another yr to a yr and a half. I have a feeling after 2 1/2 that is when it starts to move quicker. It just seems like the people who are more like me have that pattern. Hang in there though that doesn't mean it will not get better a long the way and with out knowing your symptoms and story Its hard to say what your going through. I always tell people not to compare themselves though because we have all had different journeys that got us here. Our paths will be different. It's natural to have depression at times with this disease and i imagine that its the end of the yr for you and that is bothering you. I can relate all to well with that being that i am a yr and two months and my birthday is 4 days after christmas. try to get yourself some special grade of protien  you don't normally have sometimes i will have lobster or the best cut of organic steak I can find I try to put love into it more then normal and make it as special as possible. Right now I am thankfull for all of my IC friends who understand how hard this is and I am trying to tell my self by this time next yr I should be much further along and just say I will not be in this place. I also have to tell my self that last yr I was shaking sweating and pooping on  a bucket in my room alone in the dark for months during the christmas time. try to find your light. YOu will come out of this. <3

Melsvensen's picture
Melsvensen

I love what Nicole had to say.  I am very new in treatment, but I want to wish you a big huge welcome to this blog site.  It is amazing we have a dr. who cares enough to put this together and keep it running.

Carola's picture
Carola

Hi againThanks for replying.It's very nice to talk to others suffering from thishorrible disease.I will give it all the best.I'm feel very bad at this moment, so i will not say toomuch because i don;t want to be negative.I hope that with this treatment we will all get ourlife back, and make the best of it.I have hard times believing that it will so that's why iwant to be on this site as well, to read other stories.Carola

Kriste's picture
Kriste

Carola welcome to the site.  Do not feel guilty to post if you are having difficulties.  This is a wonderful place for support.  I have been in treatment for 1.5 years and do post positive and not so possitive comments.  I am so thankful for those who post supporting or helpful words.  I too have difficult days weekly still but have also made progress.  When having difficulties it is sometimes hard to focus on that progress. 

Carola's picture
Carola

Well i do have the problem that i ask to many questions, but what i really would like to know is what you all eat during the day, i still have problemswith breakfast, and i hate vegetables, that is a problem.Carola

Kriste's picture
Kriste

I do usually eat an egg and either left over veggies and or cucumber.  I do sometimes when time permits have a large rice pancake (crepe like) with apples and plain yogurt.  This last option is for sure for someone a little further along.  I do sometimes make turkey patties and have this in the morning with veggies.  I too never ate veggies for breakfast but it is growing on me.  Food for me now is vitamins.  I just look at it in a different way.  I wouldn't mind hearing other's options.  I have heard of others having rice flakes.  I have not tried this but plan to.  I do miss having a quick bowl of ceral.  I have found puffed rice cereals with no sugar on it which is okay with almond milk and if you can have blueberries.  I do not find that this fills me up though.

Kriste's picture
Kriste

I do usually eat an egg and either left over veggies and or cucumber.  I do sometimes when time permits have a large rice pancake (crepe like) with apples and plain yogurt.  This last option is for sure for someone a little further along.  I do sometimes make turkey patties and have this in the morning with veggies.  I too never ate veggies for breakfast but it is growing on me.  Food for me now is vitamins.  I just look at it in a different way.  I wouldn't mind hearing other's options.  I have heard of others having rice flakes.  I have not tried this but plan to.  I do miss having a quick bowl of ceral.  I have found puffed rice cereals with no sugar on it which is okay with almond milk and if you can have blueberries.  I do not find that this fills me up though.

shar's picture
shar

I've had difficulty with eating vegetables and meat in the morning, too.  I actually love vegetables, but not early in the day.  I think the easiest one to eat is spinach with eggs.  I eat broccoli and cauliflower with lunch and dinner.  You can saute or steam the spinach and eat with hard boiled eggs or whichever way you like it.  Now I'm in the routine and just eat the same stuff everyday knowing this is all temporary. 

nicole's picture
nicole

Matia said that you don't have to have the veggies in the moning it's the only one we aren't required to do. It depends on my energy level if I cook the eggs with veggies or not. As of late I have been doing leftover potatoes making hasbrowns in my pan with some olive oil 2 sunny side up eggs and a veggie juice no more then what I would eat or i will do a scrambled egg with zuccni and spinage. i carmalize the veggies so its nice and sweet. with the juice it is a half a carrot a spinage the amount that would fill a salad a half a cucumber deceeded and peeled thats it and it gives me about 6 oz I love it. I used to have the green tea too but not sure how i do so i am waiting to try again. I don't tollerate any grains so no toast or I would do french toast and eggs .

Carola's picture
Carola

Doe any one know what works really well with constipation?I'm trying spinach with garlic powder, but maybe there are more options.I'm not able to finf rice flower, cakes or what so everover here.I'm always eating the same things during the days.I am eating spelt bread with butter, but i read on thissite that most of ic patients can't handle this inthe early days, of treatment.And how do i make the veggie juice?My englisch is not so good that i can understand it allsorry.Carola

maltsnme2's picture
maltsnme2

Hi Carola..You will always have good times and bad times, but the good times will overtake the bad ones, trust me.  I've been with Matia for 7+ years and I don't even think of my bladder any longer..   I have slight bumps here and there, still but I pretty much eat normal. (Normal to me, is healthy foods. no sugars, no fast foods, no garbage, because that is NOT "normal".  Your body learns to crave good foods and you won't want to go back)     To give you some insight, I was on this list for my first 9 months with Matia:chicken, beefeggs butterno yeast toastasparaguslettuceprovolone cheese (hardly ever)pasta noodles (organic)celerybroccolicauliflowerno sauces, no nothing else.   oh salt and dill to flavorand olive oil.I couldn't even tolerate potoates or rice.  After the first 9 months, then added in potatoes and was on that for 2years.  then I added in tomatoes.I never cheated, ever, not once and I was a sugar aholic pre Matia.  i ate sugar for every meal day and night.  So, I went cold turkey with this program.    Is it boring..yes, but you are healing your body.   As I said in my earlier post, how long does a cheat food stay in your mouth..seconds.  that's it..but can cause DAYS of symptoms.  simply not worth it... You will have a normal life..   I did and I was  in bad shape when I met Matia.  I had had IC for 2o+ years.   You have control over this disease, with Matia's help.  You are a lucky one.  You found her.  There are thousands out there, that do not have a clue what to do, no help, have no idea what food trigger and so suffer and don't even know why.   So hang onto that...that YOU are one of the lucky ones.   Happy Thanksgiving.

nicole's picture
nicole

thank you Maltsnme for sharing part of your journey its so nice to hear the long more difficult patients it gives me strenght to keep the fight  I have been stuggling all of my life so hearing that someone else who has had a long journey really means a lot thank you
Nicole

Carola's picture
Carola

I do want to do all the best i can, but i still (after a year)Don't know what kind of foods i do respond on, ido know that i need to have a normel bowelmovementagain because of my haemorrhoids it's pretty badso is my bladder.And i still think of edometriosis, if that gives me all this problems than i do need surgery.I am in pain now, in my whole body.Have lost weight very quick last week, i know this is not good.I now am not eating anymore hardly.And i hate it that i live so far away.Carola

Vicky's picture
Vicky

Hi Carola,You mention something about endometriosis, I have mild endo and before I had surgery I was convinced that it had to be a very serieus type of endo because I was in so much pain, but I only have a very mild type.I think it is a combination of everything, we have problems with our bladder/urethra, with our bowels, our muscles,... so there is so much that has to be healed that it will probably take a long time.  I'm 8 months in treatment now and I have improvements but I still have a lot of problems, but I believe that this will work if we keep on fighting.By the way, I'm from Belgium Vicky

Clueless's picture
Clueless

I eat fish and red potatoes for breakfast.  Hope this helps.  Hang in there.

nicole's picture
nicole

I use  a juicer I myself have a champion brand its great because you can do all kinds of things with it. I will be able to make nut butters when i get to that stage all kinds of things it even has a mill attachement you can buy to mill your own flour. http://www.championjuicer.com/
it was worth the money but i do see them on http://amsterdam.craigslist.org/fuo/1460241897.html just click on your area. Any juicer will work but I love the champion personally it lasts a long time the motors don't fail and they juice everything some juicers can't handle things like baby spinage it just spits it out . It looks like amsterdam is the closest craigslist listing to you there may be listings in holland under the amsterdam listing .I am personally finding new ways to make the same foods tast different as much as possible. I think its hard when your still in constant pain to figure out the foods. Hang in there there will be better days ahead.
 

Carola's picture
Carola

So that's nice that someone lives not far from me,Where in Belgium do you live?And what is your own laguage?Have you been to LA as well?And if yes, did you go on your own?I am a person who asks a lot of questions, there are so many things i want to know, and it's really nice tofinally have some contact with others as well.Please say so if you don't like it, i don't want to border any one.Carola

Carola's picture
Carola

Bye the way, it is now so bad, that i might need to go to the hospital, i am losing weight very quik now.And feel very bad.I am still at home now, but don't know for how long.I still don't know (after a year) what i can and can't eat.I was started with list 2 but went back to list one againby myself.And hardly dare to eat.Oh and Vicky, if you're in Belgium, what kind of waterdo you drink?Carola

Vicky's picture
Vicky

No problem at all, we are all here to support eachother!I'm live in a small village near to Antwerp (so my native language is Dutch), where do you live?Yes I went to LA with my boyfriend, despite all the problems it was also a nice holiday for the both of us, we had never been to America before.Are you losing weight because of your diet or do you eat enough?I'm also on list 1, partly on list 2 but I found several nice recipes.I drink Chaudfontaine.I hope you will soon feel better!Vicky

Carola's picture
Carola

I live in Holland, in a small village near Groningen.We speak dutch as well(of course).I lost 11,5 Kg Partly of the diet, but last two weeks it ddrops without a reason.I try to eat enough, but always the same foods.I drink spa water, but don't know if that's ok.I really want to try other recepies, if you are on list two than you must be feeling a bit better all ready?If so that's very good.What is your age, and for howlong do you have thishorrible illness?I thought a few months ago that it started to workbut now i'm very bad again, and not sure anymoreBut i will try and stick to it.I hope that you're feeling improvement.Carola

Vicky's picture
Vicky

Hi Carola,It's indeed always the same kind of foods, but I try to make as much variation as possible.  I think Spa will also be ok, I started with another brand and then switched to Chaudfontaine but I didn't notice a difference.I'm on list 1 and I eat some things of list 2, there are a few foods from list 2 that I react to, like onion.It's not always easy to find out what causes reaction, but with onion and fresh garlic I notice increased burning.I'm 29 and I'm having problems since 3 years.  But the first signs started a long time ago, I have IBS since I was 18 years old.  Then I got endometriosis and a few years later I got constant urethra burning, it came on very sudden and never went away.I really hope that you will soon feel better, it's with a lot of ups & downs, but we will get there!!  I have small improvements, like less pain from my bowels, a little improvement in my menstruation, very strong finger nails, better skin, but I still have a lot of problems so I still have a long way to go.  Now I'm suffering from neck pain and headaches because I fell a month ago, so I'm also having a hard time with that right now, but I try to stay positive and believe that this will also get better...Hang in there Carola, you will get better again.Vicky