I would be thankful for any advice you might have for me.

[BillB]

Thank you for your advice. Without being able to read your replies, everything would have been a lot more stressful.

My urologist mentioned that the procedure takes only a couple of minutes, so it would seem that the cystoscopy that he has in mind doesn't include hydrodistention, or using that solution that irritates IC bladders, but not the healthy bladders.

Is it the case that if some raw vegetables (e.g., sweet peppers) have been irritating my bladder, there is a chance that the cooked vegetables won't do that?

[ICNDonna]

Usually if something is a problem for me, it still is --- whether it's cooked or raw. Not everyone has a problem with sweet peppers --- I don't. I actually dice them, then boil until they are tender, puree and freeze in containers of about 3/4 cup, then thaw and use in dishes where I would have used tomato sauce.

If you think they "might" be a problem for you, I suggest you stop eating them for a week, then try them again.

By the way, I think it's good that you have a urologist who is willing to explain things to you. If he suggests instillations, I suggest you ask what will be in the solution instilled --- so you can do some research ahead of time.

I'm glad to know I am helping.



Donna

[BillB]

Tomatoes used to be my staple food. It was what kept me from gaining weight. I actually haven't had any tomatoes between the onset of my symptoms and the present day. Have you ever heard of anyone with IC who is able to consume tomatoes and be ok?

[ICNDonna]

Yes. There are some who find they can have the yellow ones and some who find home grown are less acidic --- and some who don't have a problem with them. If you opt to try them, please wait until you are feeling better --- then try a small amount at first --- you may be one of the lucky ones.

Donna

[BillB]

I had my cystoscopy done earlier today. Unfortunately for me, the urologist hasn't seen any lesions or tumors. Everything looked normal. When I asked about bacteria in biological film, or viruses or fungi, he pointed out that in that case he would have expected to see some irritation in the bladder, but he saw none. His diagnosis is IC...

[BillB]

Today I thought I followed a strict IC diet, but for some reason I began having a flare after 11 pm.

Is it normal to sometimes get flares even when one follows the IC diet (and one can't think of any other triggers)?

Often I seem to get worse in the evening. Is a daily cycle like that something you heard mentioned by other sufferers?

Thank you, Donna!

[ICNDonna]

Yes, it can happen. Diet isn't the only thing that can have an effect on symptoms. It can be stress, over-exertion, fatigue. Are you keeping a diary? It could e that there's something listed on the food safe list that's a problem for you --- the diet isn't 100% --- so far I've only found one thing on the safe list that's a problem for me.

I do think you're making some progress. You have a diagnosis --- and it looks like you have a doctor who is familiar with IC, and that's a plus. Do you have a treatment plan yet?

Donna

[BillB]

"a doctor who is familiar with IC"

I am worried that giving a diagnosis of IC is the doctor's way of saying "I won't be able to help you".

"Do you have a treatment plan yet?"

When the doctor brought up Elmiron, I said that I wasn't prepared to take it because I already have only one functional eye left, and I am concerned about becoming blind. Then he proposed Amitriptyline. He wants me to take it for three months and then talk to him if it isn't helping. I didn't want to make a bad impression on him, so I didn't tell him that I learned that Amitriptyline can significantly increase the risk of dementia, and that that's the reason I am not prepared to take it. I asked about bladder instillations. The doctor said that it's a good idea to first determine whether changing my diet and taking Amitriptyline would help me. My plan is to ask him again about instillations three months from now.

Yesterday I saw a YouTube video where a California urologist mentioned adding Elmiron to the bladder instillation cocktail. I would really like to have that done, but I am worried that I won't be able to find a Canadian or a Washington State urologist who could do this for me. Would you know if that's something that's common?

The same California urologist on YouTube recommends that IC sufferers take an antihistamine like Claritin. In your opinion, is this a good idea?


"I've only found one thing on the safe list that's a problem for me."

What food was that?

[ICNDonna]

What dose of amitriptyline is your doctor suggesting? You might want to think about taking a low dose, such as 10 mg, for a few months to see if it helps. You really need to let your doctor know when you have concerns about a medication. Some ICers feel they are helped by antihistamines, some are helped by antacids, such as Tagamet. It can take time to find which remedies will work. We are all so different. I hesitate to say which "safe" food is a problem for me because MOST ICers tolerate it well and it's an important part of their diets, but my body does not like garlic.

When I am prescribed a new medication, I'll admit that I research for side effects, then weigh the potential good against the possible problems before taking it. Unfortunately nearly all have some possible side effect

Your doctor telling you he feels you have IC is very likely saying that it may take some trials and some time, but he is going to do his best to help you.

You'll want to be sure to do that diary --- it can be very important in figuring out what makes you better, as well as what causes problems. It's not a permanent thing, but keeping a diary for even a few weeks can help pinpoint some important things.

Donna

[BillB]

The doctor is suggesting 10 mg per day for several weeks, to be increased to 20 mg if I tolerate it (and to be increased further until I reach a limit where I am not feeling well on it). Some side effects are easier to risk having than others. A side effect that's life long and debilitating is difficult to risk having.

Cephalexin is an antibiotic that I took when I was likely misdiagnosed with prostatitis. Its side effect is vertigo. As luck would have it, I got it. I thought that it would go away soon after I stop taking Cephalexin. Unfortunately, it has now been 9 days since I last took Cephalexin, but I still have vertigo lasting for many hours every day. I am worried that this is the result of permanent damage making my body even more uninhabitable.

I know that fish, rice, cabbage, potatoes, broccoli, cauliflower and bread don't set off an IC flare. My strategy is to add one food at a time and see what happens. Thus far Brussels sprouts and sweet peppers are the two foods on the safe IC food list that seem not to be safe for me. I will now be experimenting with lettuce and celery...

[ICNDonna]

It sounds like you're on the right track in developing your own diet. I know it can take time, but it's well worth the effort.

I have had vertigo and it can take several weeks to get rid of it. My doctor told me it's an inner ear thing and ordered meclizine for it.

Donna

[BillB]

Thank you, Donna! It is reassuring to know that after 8 days, there is still some hope left that my vertigo will eventually go away.

Donna, tinnitus sufferers have a concept of "habituation". After about 2-3 years, one starts to be not as bothered by the ringing in one's ear.
Do IC sufferers have their own version of habituation? If so, how long does it usually take for one to get habituated to urgency?

Yesterday I cooked some food using avocado oil, and I think that that's what might be causing my latest flare. I am already 24 hours into it, and it isn't showing any signs of slowing down. I am experiencing severe urgency with 150 ml of urine in my bladder... Avocado isn't listed as a dangerous food on that IC food list. However avocados are high in histamines, and histamines might cause flares, and this is why avocado oil Might be the culprit.

A week ago I went for a walk that included climbing a hill and I felt ok afterwards. Two days ago I went for a walk that included climbing another hill. My flare began after that walk. However, by the time it was time to go to bed the flare seemed to be over. The next day (yesterday) at around 5 pm the flare was back and it hasn't stopped since. Could it be that the strain of the walk kicked off a flare, and that there was "flickering" in the flare - a pause that had lasted for something like 16 hours? In other words could my flare be caused not by the avocado oil, but by exertion that happened a day before the flare began in earnest? Thank you!


I am absolutely horrified by the possibility that there was no actual cause of this flare and that I will be getting flares based on "a pain cycle" and not on me accidentally not following the IC diet...

Another night of sleeping for 3 hours. It really looks like this flare has to do with a "pain cycle" and not with anything under my control...

It is incredible to me that the doctors won't just remove the bladder. Having to have a plastic bag containing urine under my clothing seems orders of magnitude less debilitating than what I am living through right now.

It looks like those of us with pain cycles outside of our control won't ever be able to travel (as a pain cycle starting during one's trip would ruin that part of the trip)...

[BillB]

Donna, have you ever heard of Elmiron being added to the instillation cocktail (as opposed to it being taken orally)?

[ICNDonna]

Yes. It's actually not unusual to empty an elmiron capsule into the instillation solution.

There are reasons bladder removal is only done as a last result. It's a major, major surgery and takes a long time to heal. Sometimes even after the bladder is gone, the nerves that signal the need to urinate don't realize it's gone --- and the pain remains. It's called phantom pain. There are some instances when removal is the only option, but most doctors will not consider until other options have been tried and failed.

My IC was diagnosed 46 years ago and I have had a lot of vacations. We live close to the Oregon coast and have had many motorhome trips --- state parks are my favorite thing and having the motorhome meant our own bathroom. We also had 5 trips to Hawaii, two to the east coast, lots of California auto trips, and several Nebraska auto trips. There are rest areas all over the country that make vacations possible even with IC.

You will have better times --- you are already having some days when you feel better --- and there will be more and more of those.


Donna

[BillB]

Thank you for the information and for your reassuring words, Donna!