Unanswered IC Questions?

[markov]

I was just diagnosed with IC several months ago but still have alot of unanswered questions. This website is a God sent so I hope you can help me. Here it goes:

I know flareups can vary but how long can a flareup last (I am going on 3 weeks currently)?

I thought I was in remission over the last month but perhaps I am not clear exactly on what remission is? Are your symptoms totally gone/slightly there/or on and off symptoms?

When you are in remission, can you go back to eating a normal diet or will I always have to stay away from trigger foods?


I have been living on water and milk for the past 3 months, are there other beverages you can have besides tea (which I am not fond of) that others are drinking?

What can you expect when you see a urologist? I was given the test, an RX and sent on my way with no return appointment scheduled. Is this normal or do most people go back to the urologist for checkups?

Does IC ever go away for people permanently or is this something I will have the rest of my life to contend with. Are there any that get over it permanently?

Thank you for all of your support. I would love to establish a buddy system with a new IC person, one who has had it for several years and a veteran who has had IC for many years.

Marilyn

[Briza]

The first 18 months I had symptoms, I was basically in a nonstop worst of my life IC flare. I have flares that last a few hours, day(s) weeks, month(s). Some days no symptoms at all, other days "my normal IC" symptoms, managed well with my meds. FLares I consider above and beyond what my usual symptoms are, and are harder for me to get under control even w/ my meds.

I am currently in remission for almost 5 months (symptoms started in 2003). I am not taking any meds at this time. All of the meds I did take I took as needed, usually not on a daily basis, so for me, remission is no symptoms for an extended period of time without meds. After I had gone 2 months without symptoms and without meds, I began to be hopeful that it would continue, and that that having been much longer than I had ever gone without symptoms, big or small, I started to think that maybe I was in remission. Now that it has been 5 months, no symptoms, no meds, I do believe that I am certain I am in remission. :)

I still watch my diet, I have few but the classic trigger foods (coffee, wine, vinegar, condiments like ketchup and steak sauce) which have given big problems in the past, and drink lots of water. I am able to handle some foods now that I would normally avoid, in moderation, but since they are few, and not good for me/my bladder anyway, I don't miss them, especially since I've gotten out of the habit of eating/drinking them.

I drink mainly water, milk, low-acid OJ. A lot of IC patients find they can tolerate pear juice.

What test did you have? How were you diagnosed? What were you prescribed? It does seem unusual to not have scheduled a follow up, especially since urologists often have a long wait for appointments. I would think the dr would want to see you to see how your meds are working?

Although there is no known cure, many people do go into complete remission and never have their symptoms return. If you don't see them posting here, then it is because they are probably out living their normal lives! That said, most of us with appropriate treatment, time, diet, good doctor(s), do live very normal lives. A lot of those people probably aren't posting here for the same reason, because they've got their symptoms under control and don't need the support they may have needed in the past.

Finding what works for you takes time and effort and money, so hang in there and don't give up searching for the right doctor and the right treatments. If you don't feel that this urologist is the one for you, please search out another. Actually, tho I was dxd by a uro, my gyn is now my IC doctor.

Best wishes, Bri:)

[Wolfe]

Marilyn, you will develop those relationships here on this site. This is the most valuable, extensive site of any kind that I have ever seen. Keep following the threads that interest you and you'll have answers to each question from many perspectives.

I mostly live on water and milk too, though apricot and pear nectar when you can find them are very IC friendly. When you are not symptomatic, I recommend that you still watch carefully what you eat and drink so you can stay that way.

You didn't say what prescription you were given, but I should think your doctor would want to know how you're doing on it, so call the office in a week or two, even if only to leave them an update on your condition. Also, your doctor is the best person to answer your questions, so make a follow-up appointment if you feel that you want one.

Finally (from me!), Elmiron seems to be one of the most frequently helpful medications on this site, so if you aren't trying it, you might want to ask your doc about it. I'm one of the old timers, and I've been on it a long time. Don't hesitate to Private Message (PM) me if you want to chat.

Sending you healing thoughts!

[Claredale]

I ditto what Briza wrote. It is so important to be in control of your medical care. I was also diagnosed by a uro and for it being 20 years ago, I was diagnosed really quicklly, within a few weeks of the start of my symptoms. My husband and I did a lot of research on what we could on the internet and my doctor actually listened to me. I did go into remission after a few years. I have no idea how or even how long I actually was, but I pretty much stuck to my diet since citrus was my main food trigger and it also bothered my skin issues. I have always been a water drinker, so that did bother me to drink water, but I did find that I could drink rootbeer and ginger ale on occasions.

I am not in actual remission since I still require meds, but I am steadily going off meds and doing well. I go to a uro/gyno these days, but I was treated by a Pelvic pain specialist until she moved to the other end of the state. I have been very fortunate to have great medical care and the doctors that have treated me have been very involved in getting me to feeling as normal as possible.

T83

[SharonA]

Even though I do not have many days where I am feeling bad, I don't consider it remission. I still take the one medication that helps me...Amitriptyline (Elavil) 25mg. Actually, since I am usually feeling good, I am too chicken to stop taking it. I tried a few years ago to reduce the dose, but found that the bladder burn came back in a couple of days. I haven't tried since.

I am not very diet sensitive but do have my trigger foods/drinks...citrus. I have not eaten an orange or had a glass of orange juice since my first symptoms in August of 2001. I don't want to risk having problems. I am able to drink decaf coffee, decaf iced tea, milk and water.

[markov]

Bri-It is so refreshing to know that there is hope with this illness. I am so glad to hear that you have been in remission for 5 months, I am sure it feels like a breath of fresh air.

Your comments have been so helpful. I pray that I am on the end of a flareup right now which started 3 weeks ago. Since this is my second onset of a flareup since I started IC, I have no idea how long anything will last. My swelling is subsiding and I am only having discomfort when I eat, regardless of what I eat at the moment.

What medications are you on currently and what are your normal symptoms? I feel like a rollercoaster with my symptoms going from pelvic pain, to swelling, constant frequency to not being able to go much at all. Every day is a new adventure!

I am glad to know that you have been able to bring some foods back into your diet but I do not think I will ever rest with IC. Since there is no certainty on when it will come and go.

I am so grateful for this website.

Mar

[waterflow]

I've had IC for 11 years and still don't understand a flare. Since you can drink tea have you tried snapple? I love the stuff but put two and two together and it made me pee more. Had to give it up but I have found the flavored plain water is ok which is a change instead of plain water. I found chocolate milk will work ok while regular/skim milk won't.

[girl]

I was diagnosed in 1995, so that makes it 13 years for me. The length and severity of my flares vary due to what caused them. A flare from food will last three days; a flare from stress can last anywhere from a few hours to weeks or months.

I only drink water, since I have other diets I must follow also - oh, but I can have rice milk. I have heard some like pear juice (I can't do pears).

I was in remission for eight wonderful years out of that thirteen. I could eat anything except citrus and tea ( I don't drink coffee, so I don't know about it). I took no medications. I live for the day I go back into remission again (although, it is extremely discouraging to come out of it after that long).

[markov]

I was diagnosed in 1995, so that makes it 13 years for me. The length and severity of my flares vary due to what caused them. A flare from food will last three days; a flare from stress can last anywhere from a few hours to weeks or months.

I only drink water, since I have other diets I must follow also - oh, but I can have rice milk. I have heard some like pear juice (I can't do pears).

I was in remission for eight wonderful years out of that thirteen. I could eat anything except citrus and tea ( I don't drink coffee, so I don't know about it). I took no medications. I live for the day I go back into remission again (although, it is extremely discouraging to come out of it after that long).
Hi, thank you for your feedback. May I ask what took you out of remission? This illness is so unpredictable. It seems like you have to live day to day and I don't know if I should test things or not. When in so much pain, the thought of bringing on more is not bareable. It is difficult to even know what caused my flareup. If food only cause a few days of flareup, why has mine lasted 3 weeks? How do you turn off stress in your life, it is every where you turn!

[markov]

I ditto what Briza wrote. It is so important to be in control of your medical care. I was also diagnosed by a uro and for it being 20 years ago, I was diagnosed really quicklly, within a few weeks of the start of my symptoms. My husband and I did a lot of research on what we could on the internet and my doctor actually listened to me. I did go into remission after a few years. I have no idea how or even how long I actually was, but I pretty much stuck to my diet since citrus was my main food trigger and it also bothered my skin issues. I have always been a water drinker, so that did bother me to drink water, but I did find that I could drink rootbeer and ginger ale on occasions.

I am not in actual remission since I still require meds, but I am steadily going off meds and doing well. I go to a uro/gyno these days, but I was treated by a Pelvic pain specialist until she moved to the other end of the state. I have been very fortunate to have great medical care and the doctors that have treated me have been very involved in getting me to feeling as normal as possible.

T83

Tracy-How do you know when you can go off meds. I am trying to avoid meds as much as possible with the hope that the diet, heating pad, prelief and tums will help to heal this. I used the baking soda once with my doctors recommendation but am I expecting to much that this heal itself or do you need more medicine for that to even be possible?

[markov]

Even though I do not have many days where I am feeling bad, I don't consider it remission. I still take the one medication that helps me...Amitriptyline (Elavil) 25mg. Actually, since I am usually feeling good, I am too chicken to stop taking it. I tried a few years ago to reduce the dose, but found that the bladder burn came back in a couple of days. I haven't tried since.

I am not very diet sensitive but do have my trigger foods/drinks...citrus. I have not eaten an orange or had a glass of orange juice since my first symptoms in August of 2001. I don't want to risk having problems. I am able to drink decaf coffee, decaf iced tea, milk and water.
Sharon-I know what you mean about taking chances. I am so uncertain as to what I can and cannot do when it come to eating foods and activities. My husband and I are planning to move to the Carolina's in the future and would like to have a boat. I love to water ski and love boating but I am not even sure I will be able to do something like that anymore. We would like to go on a cruise next year when my daughter graduates from school and I don't even know if that is possible with this. Can you share any information about things like this, are they doable or would I be setting myself up for a fall?

Marilyn

[ICNDonna]

I've had diagnosed IC since 1975. I feel good most of the time, but I do avoid my diet triggers even when I feel good. I don't think of myself as being in remission; I just feel glad when I feel good for many weeks at a time.

Donna

[girl]

Marilyn,

As with everything else about this disease, they are not totally sure what brought me out of remission. They think it was probably a combination of my discontinuing a steroid medication which I was on for other problems, and entering perimenopause with a vengeance. (My IC is definetely tied to hormones, and to allergies, which the steroid helped with).

As for the stress, you can't eliminate it, but I have learned coping techniques so that I deal with it better. When I am coping better, I don't get the pain that stress brings.

And, for me, food flares last three days; stress flares have lasted for months at one time; and last year I had the never ending flare which lasted about six months. They still don't know why.

The flares were more frequent and lasted longer when I first came out of remission (and at diagnosis, of course). After being treated for a while, and staying on the diet a while - the diet will probably be your best friend - my bladder seems to not be as irritated to begin with, so flares are less frequent and milder when they occur. I hope you too will begin to feel better with treatment!

[SharonA]

Marilyn...I try not to let IC rule my life. I watch what I eat, take my med and go about living. Sometimes, I am not able to do everything I want, but I do what I can. I encourage you to make the move, get the boat, take the cruise.

One of the best things about enjoying time on the water in your own boat is that you can jump in and empty your bladder any time you want or feel the need. :wink: I have friends who own a Tri-pontoon boat that even has a curtained area at the back where a porta potty can go. That is pretty cool if you ask me.

:) :) :)

[Mothergoose]

Go for the curise I have been on two cursies with this. I just try not to over do it by tring to do it all. They are quite relaxing. Take you meds with you and a little extra pain meds incase so you don't have to miss out on too much. We went with friends and between the 8 of us I didn't have any more down time than the rest of them, everyone lost a day for something. It was an 18 day cursie. i just didn't do much of the late night things, I am worse if i don't get enough sleep.

Mothergoose

[VickiB]

Flares that went on for months were common for me before diagnosis, meds, and diet changes. Now I rarely flare, and when I do, they tend to only last a day or two. In hindsight, I think my never-ending flares were likely diet related.

Even though I go for weeks and even months at a time feeling good I wouldn't call it remission. I'm pretty sure that all it would take is one glass of grapefruit juice and I'd be back in that same old misery I used to know!

Vicki

[Mothergoose]

I read in an article somewhere that remmission is when there are no syptoms at all, I feel the same when I am doing pretty good I am sure if I ate an orange I would flare. Although I may be agle eat somethings with no problems, but definatly no citrus.

Mothergoose