IC symptoms not yet diagnosed

[agilityme]

Hi all,

I have been having IC-like symptoms since the beginning of August this year. It presented as fairly severe UTI. I went to my primary, gave a urine sample and was prescribed Macrobid. The lab did not perform the culture so we don't know if I initially had a UTI or not. The Macrobid did not work. My doctor then prescribed Cipro. The Cipro did not work. I went back to my doctor, gave them another urine sample and was prescribed Bactrim. A few days later, my doctor's office called to say that the lab culture was negative and I did not have a UTI. They referred me to a urologist.

While waiting for approval for the urologist visit, I found this site. Thank you, thank you, thank you for putting so much valuable information together in one place. I started a voiding log and began to religiously follow the IC diet. Not an easy feat as I am already vegetarian (by choice) and gluten free (for Hashimotos). But worth it as it has helped immensely. The pain, frequency and urgency have subsided so much that they are bearable now. The only time my symptoms "flare" is when I ovulate, have my period or try a new food that makes my bladder angry.

I saw my urologist for a consult and gave another urine sample on 9/26. Don't have the results yet. He has scheduled an in-office cystoscopy on the 17th of October. From what I understand from this message board, it isn't likely to reveal IC. But, I'm hoping it will at least rule out other abnormalities or conditions.

I have a couple of questions.....

If one has a mild case of IC, does it tend to stay mild? Or does IC typically start out that way and progressively get worse?

Does the IC diet help other urinary tract problems? What I'm wondering is if the IC diet is helping me, does that make it more likely that I do have IC?

Thanks for all your help and sorry to be so long winded
Pam

[ICNDonna]

Only a very small percentage of IC patients worsen after the months when it initially appears. Mine did its progressing during the few months before diagnosis. That was 36 years ago and I do much better now than I did then.

I know diet is at least part of the reason I do well. At the time I was diagnosed not much thought had been given to a diet connection --- I learned on my own which foods and drinks are a problem for me. Interestingly, my triggers are all listed on the "caution" column, with few exceptions.

Donna

[Pammylynn8]

Hi Pam, I am a Pam too!
I was just diagnosed in August, the only way they could diagnose me with with cystoscopy and hydrodistension. The urine cultures never reavealed my IC.
I too am on no gluten diet along with no dairy, no eggs, and no red meat for food allergy purposes. I just took them out 3 months ago.
But I do know the diet has helped me tremendously - the low acid diet!! My IC has gotten better with diet but during my period it is sooo painful and I have to go all of the time. So I am hoping that it doesn't get any worse overtime.
I would assume that the low acid diet would help other UT problems??? But I think it helps IC the most. Good luck!!
pam

[eyeliner128]

Answers:

Ah, sorry to hear they didn't test the culture initially - it isn't good to be on all those antibiotics. At least, for me, they mess up my system. I'm glad that the diet has been working for you though!

An in-office Cysto might reveal I.C. Mine was diagnosed during a Cysto under anesthesia so they could also perform a hydrodistension (that's where they see how much liquid your bladder can hold). Usually, an I.C. bladder will rupture at around 300 cc and pinpoint hemmorages can be seen = classic I.C. I'm not so sure that a urine culture can show I.C. but there is a potassium test that is supposed to show if you're prone to it. It is a great idea to have the test done though, to rule out other possibilities.

As for your Q's:

"If one has a mild case of IC, does it tend to stay mild? Or does IC typically start out that way and progressively get worse?"

Once I.C. is diagnosed, usually people see improvement because they begin therapy like following the diet and taking Elmiron. The earlier it is caught and the younger your age, the more chance it will improve with treatment. For me, I had been having symptoms for about 2 years before they found out what it was - needless to say, my bladder was quite damaged but since I was only 13 at the time, my body responded well to treatment and now my bladder feels alot better than back then.

In summary, since it sounds like you "caught it" pretty quickly after your first symptoms, you have a great chance of improvement

"Does the IC diet help other urinary tract problems? What I'm wondering is if the IC diet is helping me, does that make it more likely that I do have IC?"

I'm no expert on the diet and I don't follow it myself, so someone else can probably give you a better answer. I would think though, that if you're having success with the I.C. diet, perhaps you do in fact have I.C. Only a Cystoscopy can tell for sure.


Good luck with your appointment and feel free to ask me anything - I've consulted with the top two I.C.-specialized urologists in the country and have personally been learning alot over the last 7 years.


Molly

[agilityme]

Hi Donna,

Thanks so much for your reply. Your experience with IC has made you quite knowledgeable I'm very happy to hear that it is not common for symptoms to continue to worsen after the first few months.

That must have been so challenging and frustrating to have to figure out about your diet all on your own. Thank goodness for the internet - it sure does make finding that type of information so much easier.

Pam
ps. Your Meggie is cute. I have four dogs and teach dog agility classes for a living.

[agilityme]

Hi Pam,

How funny that you are a Pammy - that is what my sisters call me I wish my urologist would have went with a cystoscopy with hydrodistillation. But, HMO and all..... I'm thinking the cystoscopy will at least give me peace of mind. Much as I doubt it will be found, the worry of cancer is always in the back of my mind.

Wow! Sounds like your diet is really restrictive too. It sure does get easier with time though, doesn't it. I hardly miss bread or cake anymore. Can't say the same for italian, mexican and indian food. I so miss curry. The hardest part of all is the social aspect. It would be nice to be able to go out to dinner again.

My period causes my symptoms to come back with a vengeance too. Do you take medication for your IC on a daily basis? Or is it something you can take only when you flare? I'm only asking because if I watch what I eat I only have 3 or 4 really bad days per month.

Pam

[agilityme]

Hi Molly,

My youngest daughter is your age and also a full time college student. I'm so sorry you had to go through this at such a young age. Jeeze, as if Jr. High isn't hard enough - lets go through it with IC. Ugh. That must have been tough.

Thanks for all the info. I'm really jazzed to see that things seem to get better instead of worse once you're diagnosed. The diet has improved my symptoms to the point where I CAN live with this

Thanks also for the offer to answer questions. That is kind of you and I'm sure there will be one or two after my appointment.

Take care
Pam

[Pammylynn8]

Hi Pam,

How funny that you are a Pammy - that is what my sisters call me I wish my urologist would have went with a cystoscopy with hydrodistillation. But, HMO and all..... I'm thinking the cystoscopy will at least give me peace of mind. Much as I doubt it will be found, the worry of cancer is always in the back of my mind.

Wow! Sounds like your diet is really restrictive too. It sure does get easier with time though, doesn't it. I hardly miss bread or cake anymore. Can't say the same for italian, mexican and indian food. I so miss curry. The hardest part of all is the social aspect. It would be nice to be able to go out to dinner again.

My period causes my symptoms to come back with a vengeance too. Do you take medication for your IC on a daily basis? Or is it something you can take only when you flare? I'm only asking because if I watch what I eat I only have 3 or 4 really bad days per month.

Pam

Hi again Pam! Sorry I used the wrong lingo before. It was hydrodistension not the other hydro word I used. I am sure your uro will do that (cystoscopy and hydro) once he gets urine test results back. I worried about cancer too, but my uro really thought it was IC.
I miss curry too!! that is one of my favorite spices! I also love hot peppers which I can't eat at all. I do miss bread and dairy the most.
I take Elmiron every day three times a day and it takes a few months for it to work. I am only on 1 month, so I haven't seen much of a difference. When I flair I try to make sure I only eat really really well. I also sometimes will take antacids and that works for me.

[SuziQ64]

Agilityme,

I too, am a vegetarian and am having difficulty finding food to eat. Could you please tell me what a day of eating looks like fir you. I desperately need some ideas!!! I REALLY miss my Indian and Thai food and despair at going to the supermarket now where as before I loved it!

One other question, I do eat Spelt bread. Is this considered gluten free?

Hope everyone has a lovely day!

Suzi

[ICNDonna]

Spelt is a variety of wheat.


Donna

[agilityme]

Hi Pam,

One hydro word or another.... I'm so new to this that it is all Greek to me. But, I understood what you meant I don't believe my urologist intends to the the hydro part of the procedure. He didn't mention it and as it is in-office w/o the benefit of anesthesia, it doesn't seem likely. My best guess is the cystoscopy alone will have to be done first to satisfy HMO requirements.

I'm looking forward to trying some of the recipes on this list. Hopefully, there will be some that make up for loss of spicy food

Thanks for the info on Elmiron. Knowing what meds are available, how they work and what the side effects are is my next project. I figure it will be good knowledge to have in case my urologist wants to prescribe anything beyond pyridium. Thanks for the antacid tip too. I'm gearing up to start my period and can already feel the bladder and urethra pain kicking in. Off to buy some Tums......

Take care,
Pam

[agilityme]

Hi SuziQ,

Donna is correct, spelt is wheat. I've yet to find a good gluten free bread. Most more closely resemble a Mr. Clean Magic Eraser than something edible.

I sent you a private message about what I typically eat during the day.

Take care,
Pam

[SuziQ64]

I have lots of Mr Clean magic erasers at home. Perhaps I should resort to eating those.

Everything is starting to taste the same.

Suzi

[SuziQ64]

Antacids is s great tip! I'm going to get some too!

Thanks!

Suzi

[mommy2T]

Buckwheat is gluten free and sometimes you can find pancakes or muffins made with that. I have Celliacs and have been on the gluten free diet for almost 7 years.

Jamie