Newly diagnosed male

[colinmac]

Hi there,

I've just registered on the ICN Forum. My name is Colin and I'm from Donegal in Ireland. I was diagnosed with IC in November 2006. I have changed my diet. I avoid all fruit and foods containing citric acid. I take no processed foods. I have reduced my salt intake drastically to less thatn 900mg per day. I don't take tea, coffee, soft drinks or alcohol. My medication:
Elmiron 100mg x 3 daily
Amitriptyline 25mg x 2daily
Would like to hear from other IC sufferers.

[leelee88]

:welcome:
I am glad you found us...

[colinmac]

:welcome:
I am glad you found us...
Thanks for your reply. It's 6.40pm over here....so My replies might not be immediate due to the time difference.

[colinmac]

Thanks for your reply. It's 6.40pm over here....so My replies might not be immediate due to the time difference.
Just read my last quote and it makes me sound stupid. I meant that if I don't always reply to the quotes straight away it could be because it is night time here.:dizzy:

[humpieumpumkin]

:welcome: I hope you are alreay noticing an improvement with diet and your new meds. The diet really seems to help me. I hope you get the same results!:smile tee

[SandyRN]

Just wanted to :welcome: you to the board! You've come to a great place with lot's of wonderful people. There is a section on this board that you may want to read and it's about men with IC. Hopefully some of the guys on here will come on and welcome you as well. I've got some major Irish blood in me too...red hair, green eyes...and a rotten temper :)

Anyway, glad to have you here! Ask lots of questions and never feel shy because we've just about heard it all.

If you haven't already, you may want to check out the patient handbook, the link is at the top of the page. There is also a diet link there that can give you some great tips, also check out the diet section here on the board.

Again, welcome!

Sandy

[kjd]

Hi Colin

Welcome!! What are you main symptoms? I am taking the amytriptaline too, do you find it helps?
How are the doctors in Ireland? I live in England and IC isnt well recognised so it took me awhile to get diagnosed!

kate x

[SharonA]

Hi Colin and :welcome: to the ICN...

I am so glad you found your way here. This is a great place to get to know others who have IC.

I am very impressed with how proactive you are. You have probably already discovered the IC Diet. In the Diet, you will find that you may not have to avoid all fruit. Most of us can tolerate blueberries/pears. That could be good news for you if you like those fruits.

Don't worry about the time difference. We are rather used to it. We have people who post from all over the map. We are just very happy that you are posting. Like SandyRN already told you, don't feel shy about any questions you may have. We talk about all kinds of stuff here.

:) :) :)

[colinmac]

Hi Colin

Welcome!! What are you main symptoms? I am taking the amytriptaline too, do you find it helps?
How are the doctors in Ireland? I live in England and IC isnt well recognised so it took me awhile to get diagnosed!

kate x

Hi Kate,
Started off thinking I had kidney/bladder infections, however when tested they came back clear.After several trips to consultants went for cystoscopy and was diagnosed with IC...Probably!....During the procedure the surgeon thought that my bladder looked quite normal...But when he stretched it with 500ml fluid everything went crazy.blood pressure dropped..... had difficulty breathing..pulse went crazy...I gave them a bit of a scare. After coming out of the anesthetic I was in severe pain....I was given several types of pain killers but they had to resort to morphine in the end......it even took the morphine an hour to kick in. During this time I was in severe agony but I believe that the surgeon didn't think so as he stood explaining what his diagnosis was to me while I was literally rolling around the floor in pain.He seemed oblivious to the fact that I was suffering. I also passed alot of blood for a couple of hours afterwards when I urinated. His advice to me as regards treatment was to check out the internet!!! As far as he was concerned there was no treatment. Only through searching the internet did I find out about diets and Elmiron which my local GP sourced for me. So that's my story so far. The amatriptyline keeps me sane as I went into severe depression after my hospital visits..as there seemed to be no light at the end of the tunnel. I've read since that this drug has also been thought to help IC symptoms through blocking pain at nerve ends. My main symptoms at the beginning were severe burning in the pubic hair area and they have subsided alot but now I have the burning pain/sensation in my penis all the time. It is not easy to talk openly to people about where my pain is or how it affects me. This site is a great way to talk to others that are experiencing the same as myself. Keep in touch and hopefully we will get better soon.

[colinmac]

Hi Colin and :welcome: to the ICN...

I am so glad you found your way here. This is a great place to get to know others who have IC.

I am very impressed with how pro-active you are. You have probably already discovered the IC Diet. In the Diet, you will find that you may not have to aviod all fruit. Most of us can tolerate blueberries/pears. That could be good news for you if you like those fruits.

Don't worry about the time difference. We are rather used to it. We have people who post from all over the map. We are just very happy that you are posting. Like SandyRN already told you, don't feel shy about any questions you may have. We talk about all kinds of stuff here.

:) :) :)
Thanks for your kind welcome :smile tee I eat pears and blueberries but there's only so many you can take! I'm going to try bananas this week so fingers crossed that they don't cause a flare up.:woohoo:

[ICNDonna]

:welcome: to the IC Network. I also am glad you found us.

Be cautious with bananas --- many ICers find they are a problem.

Donna

[Silverfern]

Hi Colin and welcome

Bananas are the ONLY fruit I can tolerate. One thing you can be sure of around here is that we're all different, especially what we can each tolerate in the diet department! All you can do is try things and see how they go. Good luck!

[colinmac]

Hi Colin and welcome

Bananas are the ONLY fruit I can tolerate. One thing you can be sure of around here is that we're all different, especially what we can each tolerate in the diet department! All you can do is try things and see how they go. Good luck!

Thanks for that Lynne. I had 1 banana yesterday and so far so good:)

[leelee88]

Colin, I know there are not many men on this site, but all the woman here are great and will help you in any way, please dont be embarressed to ask us question, because even though we are woman, we still feel your pain and know what you are going through..I was so alone and wanting answers so bad, until I found this site, I recieved more help on the ICN then any drs had givin me..

Well take care and if you need anythin just let us know:smile tee

[colinmac]

Colin, I know there are not many men on this site, but all the woman here are great and will help you in any way, please dont be embarressed to ask us question, because even though we are woman, we still feel your pain and know what you are going through..I was so alone and wanting answers so bad, until I found this site, I recieved more help on the ICN then any drs had givin me..

Well take care and if you need anythin just let us know:smile tee


can anybody tell me if you eat something that causes a flare up how long on average does it take from eating the food until the flare up occurs? How does a flare up affect you in terms of where and how severe the pain is.

[leelee88]

Colin,
With me I start feeling bad about an hour after I eat, but remb we are all differant..It starts feeling kind of like heartburn, but more in the bladder area, then it turns to spasms and pain, so you have burning, spasms and pain, but like I said thats just me..
But once I feel the burning start I take 2 tums and start drinking lots of water, because if my bladder is burning I know it will burn when I pee, so I drink the water to dilute the urine and to get watever I ate flushed out of my body as quick as I can... Hope this helps:smile tee

[colinmac]

Hi ronda,
Thanks for the info. This is all new to me and I'm still trying to find out as much as I can about IC.:)

[Silverfern]

Hi again Colin

Glad to hear bananas may be on your 'good to eat' list!

I find I get different time responses to food or drink that disagree with me. Usually it's within a few hours, but sometimes it's the next day. That's what makes it so darn hard to figure out just what the culprit is sometimes. You do get pretty wise pretty fast when it's something that your bladder really hates, but it's the things that only slightly irritate which are the real bummers. Unless you get rid of these they tend to just keep things simmering along. I actually prefer it when I get a very positive reaction as it makes it so much simpler. You'll soon get the hang of it though!

Keep the questions coming!

[Texas Baby]

Collin,
I'm so glad you are here!. This site is a tremendous help for people like us. As far as how long and how severe a flare can be ,everyone is different. For example,if I drink coffee within an hour i'm writhing in pain. My bladder hates it. But If I drink a glass of red wine Within 24 hours, I'll have a flare. My flares are usually a 6-10 on the pain scale. I hope that helps. There is a book you can order off our web site here called IC survival guide that is full of information. I have 2 of them and even gave one to my URologist. He was quiet impressed. Anyway there may be some things in there that will help you.
Eva:)

[alianne]

Hi Colin,
I was in Ireland on my way home from a mission trip to Africa in 2001 - I spend a week in Dublin and the surrounding country. I loved it - but I am part Irish too. When I eat some things it hits me within about a half hour to an hour - especially liquid stuff (except I had some amazing wine tonight and it hasn't been really bothering me, however my pain has been so bad that I maybe can't tell what is doing it). Fruit is very bad - especially berries and citrus (which is hard because I grow 4 kinds of delicious berries on my farm) and this pain usually hits within a couple hours. If I am good on my diet then I can have a little bit of "bad" stuff - but if I overdo it I can be in a lot more pain for about a week. I am sorry you are experiencing this.

ali