I don't know where to start

[missusg]

I haven't been diagnosed with IC. I am hoping, and I know that probably sounds sad but I am hoping, that I actually have it. I have had pain for a number of years and it is a constant cycle, run to the doctor, you have IBS, send to a specialist who presses your belly and agrees in 2 minutes that is exactly what you have. Don't like the diagnoses so during the next flare up start running again, get a new pill, try it, don't like the side effects, quite it and start again. Finally one blood test came back and I found out I have Celiac. my doctor and I both thought there finally the solution.

BUT NOOOOOOOOOOOO!!!!

I am still in pain, constant chronic pain. I have tried keeping a food journal. Sometimes it seems like yes, its say french fries that bother me or bacon or ?????. then the next time I am fine.

Does anyone have any suggestions. I am going in for SANS treatments hopefully in the next little while, my urologist just told me about them. Has anyone tried these treatments? did they work. I don't want to take medication...

thank you to everyone who posts or even reads this. :angel:

[Claredale]

Do you know for sure you have IC? I don't really know what Sans treatments are, just about the SANS unit which is a major surgery as well as an expensive surgery which most doctors don't use until all other treatments fail. I know you don't want to take medications, I certainly didn't know what was in store for me when I was first diagnosed 20 years ago, but I learned as much as I could about every treatment and med that was tried on me. I never would have thought I would have tried so many meds, but it was what I had to do to find out the right combo that worked for me. I am finally on a good med combo which is allowing me to live practically normal especially during the day. I no longer have the pain I had for a number of years.

T83

I did have the sacral nerve implant surgery in 2002 and had great success, but my doctor nor my insurance company would have even considered it until all other treatments were tried.

I

[missusg]

the SANS treatement is done by acupuncture. I really don't have any information on it but am willing to try just about anything.

and no I haven't been diagnosed. everything is a fight here....even getting bloodwork can be a hassle

[Claredale]

Honestly, I know I am old school, but I have a very good uro/gyno that stays current on the latest research of IC, plus I also still stay in contact with my prior doctor that is a pelvic pain specialist, so I often bounce things off her when I am doing my research. I have actually had great doctors during my entire time with IC and was diagnosed within a few weeks of the onset of my symptoms. If I were you, I would have at least the PST test done to see how that goes. I would also have the hydro/cysto done under anesthesia. Back when I had it, I was just following the doctor's advice. I was young and just wanted to know what I was dealing with since my IC did come up on me quickly with constant pressure to empty my bladder. I was so relieved when I actually heard the diagnosis. Like I said earlier, I had no idea of why was ahead of me, but it definitely gave me a starting point to which I was able to gain alot of information to be the best advocate for myself that I could be.

At least that way you and your doctor know exactly what you are dealing with if it is in fact your bladder.

[SharonA]

Hi and :welcome:

I noticed one of your posts was asking about which diet a member was following. The one that most of us use is the IC Diet and information about it is available here: http://www.ic-network.com/diet/ Diet can play a major role in IC symptoms for many of us...me included.

No one wants to take medication...absolutely no one *she says as she is raising her hand and waving it in the air in agreement*...but sometimes it is exactly what we should do. I had major pain when I was first diagnosed, but found a doctor who wrote a prescription for low dose Elavil and it has given my life back to me. I will gladly take it for the rest of my life as long as it helps me to never have that kind of pain, again.

I hope you and your uro can discover what is causing your symptoms so you can start to feel better.

[missusg]

I do take one pill. Dicyclomine that my family doctor gave me. I take it only when I need to and today is definitely one of those days (weeks)
my pain starts in my lower belly (I call it my bellyhouse) and then it travels in my back and even down my thighs.
I don't seem to have a lot of symptoms others have with my urethra and such, just my bladder (bellyhouse). it doesn't hurt to pee though sometimes I feel a pressure on her.
I hate this as much as each and everyone of you.

[missusg]

and are you referring to the A and B diets, chosing one of them...what would I have for breakfast?

[traceann]

Hello!! I am with the ladies, I agree the first thing to try to get done is get a diagnosis so you know which way to go treatment-wise. I had to really push my Gyn to consider IC, it was "here, let's try one more antibiotic" etc etc, finally I told him what I suspected etc, and we went from there. It can definitely be a battle to get a diagnosis for IC, I can't remember what the stats were, but I know it was like an average diagnosis time is like 5 years or something, and a few doctors in between.

Tracey's (T83) got a good idea PST (Potassium Sensitivity Test) it's done in office, so it's not as involved as some of the others. And it can be a good indicator of IC, and you could then decide from there what course of testing or action etc you'd like to take.

I also agree with Sharon - for me, my medications were a huge part in treating me - I would say it's divided between the diet and my meds as the biggest helps. I hated taking them, but I was able to function and enjoy things again, so it was worth it. I never wanted to go back to that horrific IC pain that I had. But it was depressing at first knowing that I had to take them to feel good. I went from being on no medications, to 3 all at once, lol. I took Elmiron, Ditropan and Hydroxyzine (the antihistamine Vistaril or Atarax). The only one I was still on until recently was the Hydroxyzine, that med was one that I never wanted to give up, it helped me so much, and was inexpensive. But hubby and I are trying to conceive and it's a Category C med, so I went off of it. It even helped my seasonal nasal/watery eyes allergies, lol!!! There's also a supplement, Cystoprotek that many have had good luck with. Once I got my bladder under control and I went off the Elmiron, I started taking it to keep things feeling good. :)

Have you checked out the Patient Handbook?? Sharon gave you the link to the diet page, that is sooooo helpful, I printed it out and carried it with me everywhere I went, lol, well, until I had it pretty well memorized, ;) The Handbook can give you information on lots of things, treatments, coping ideas etc. Have you tried the diet? I built myself a diet solely from the "Usually Ok" list in the beginning, then after about 4-5 weeks started adding things back in one at time to help find my triggers. But the diet really was a huge tool for me for managing my symptoms!

I too hope you get answers soon, so you can start doing whatever is needed to get you feeling better!!!!

Hugs,
Tracey :)

[leelee88]

Hello and :welcome:to the ICN

[missusg]

I did go on the link. which handbook did you print?

[traceann]

Here's a link right to the chart I used to build my own diet - as I said I founded one just from the "Usually Ok" list, then after a few weeks as things started to calm down, I started adding in foods from the "May Be Ok" list one at a time, and about 2-3 days apart, if I had an increase in symptoms, it went on my no-no list to be retried at a later date say a month or so. If I still had an increase, in went on my permanent no-no list, lol. It's a slow process, but it's worth it I think - I found out that I could eat way more than I thought I could! ;) It's just rather slow and boring in the beginning, but really, it doesn't stay that way forever!!! :)

http://www.ic-network.com/diet/dietcheatsheet.html

I too take dicyclomine :)I take it for my IBS! It really helps me out with the awful cramping, ugh! Was on it 4x's a day, but now am able to just "take as needed". So, does that help your bladder too? It's one of those antispasmodics, and I know that taking Ditropan helped my bladder out a bit, and I also have hyoscyamine for my IBS, and that is one that quite a few ICers take for the bladder/urethral spasms as well!! ;) But it too was a Cat C med, so back to Bentyl for me, lol.

[missusg]

which test should I ask my doctor to preform first.

[missusg]

I had printed that sheet off yesterday and went through the whole thing and check everything in all columns off. i am shopping this weekend for the okay foods and will go from there.

I thought I had to do the diet A or diet B in the link that was sent to me....basically eating nothing

[SharonA]

Ask for the PST (Potassium Sensitivity Test) first. Do an online search (like google) using PST as the subject of the search. You will find lots of information about it by doing that.

If you have IC, it will hurt but it is less invasive than the Cystoscopy/Hydrodistention under Anesthesia.

[missusg]

I will enquire...thanks

[traceann]

And as soon as they instill the Potassium into your bladder, and if you have a reaction, they immediately drain it and put in a solution to soothe it! ;)

As for diet, I asked here way back when and that was what was recommended to me to do - stick with the usually ok's then add in as you go along and things start to calm down. There is NO reason to starve on it! ;) I basically shopped fresh - fresh meats: chicken, beef, safe pork (pork that hasn't been treated with some kind of solution etc). As for veggies, I bought frozen as it was more cost-effective and convenient, I loved broccoli, cauliflower, carrots, peas... As for fresh, potatoes became a big diet staple for me, lol, especially sweet potatoes! Lots of pasta with olive oil, herbs, sometimes cooked veggies thrown in, lots of breakfast foods, eggs, pancakes (I made mine from scratch til I discovered that I was ok with after awhile), french toast... I also loved bagels with cream cheese - in the brick, the tubbed stuff has additives etc., mozzarella string cheese was a good snack too. But these are just some ideas for you, go with your own tastes etc. Oh and Bryers French Vanilla ice cream became a staple for me!!! ;)

[traceann]

Here's an idea list I posted awhile ago in another thread:

This is my own list of things I did and what was ok for me. If the item is on the "May Be Ok" list, I tried to designate it with an "(M)" next to it. And these are my tastes, of course you'd choose what you like and what your bladder can tolerate etc, but most of these items/ideas were made using the list of the "Usually Ok" items. Hope it helps and just gives you a few ideas!! Remember, what may be good for one bladder, might be another's nightmare, lol


IC Food Ideas

(M) = May be ok, if you can tolerate them

Cooking Methods – pan frying in butter or olive oil or veg oil, grilling on an indoor grill pan, grilling on an outdoor grill.

Frying/sauteing vehicles – butter, vegetable oil, olive oil, canola oil etc

Seasonings: salt, pepper (M), herbs – fresh or dried such as thyme, dill, oregano, sage, marjoram, basil, mint, chives; olive oil (regular and flavored like with garlic or herbs – not spicy!), lemon zest, lime zest, orange zest – just the zests, not the juice! preservative-free garlic powder (if you can do garlic).

Pasta, noodles, rice: Great staples to have around. Very versatile. I have many kinds of rice around, arborio, brown rice, basmati, brown basmati, plain white. I also have a huge supply of noodles and pasta. And when I would cook them for one thing, I also made sure to cook quite a bit extra for it to be morphed in to another meal sometime during the week…really helpful when you aren’t feeling all the great. Lots of times I would combine with the veggies I cooked in the garlic etc and dressed with olive oil, was pretty tasty! Lots of Fettuccine Alfredo made at home too, lol. Hubby loves that also. For extras, I sometimes added some cooked chicken or shrimp to it and some veggies -- or sometimes just veggies! Yummy! I love my pasta, that's for sure - so I tried to get as creative as I could!

Vegetables (fresh/frozen): broccoli, cauliflower, carrots, peas, potatoes, sweet potatoes, asparagus (M), onions (M) In the beginning I was only ok with cooked onions, as time went on I could tolerate raw, corn (M)

Fresh and frozen veggies: The frozen more than the fresh was my main version, lol But, broccoli, cauliflower, green beans, corn (M), peas, carrots - were my favorites. I would sometimes cook them as directed with amt of water called for (mostly with the broccoli and cauliflower) and add chopped fresh garlic and salt to the cooking water. Then I would drain it, toss it back in the pan and heat it slightly with some olive oil and herb of choice or just toss with butter, tossing the veggies to coat. My hubby loved them that way! I would make myself glazed carrots from the frozen ones, cook them a bit, then add brown sugar and butter to taste, to get the glaze the way I wanted. You can add any of the other veg and make a medley. Can be tossed with pasta of choice for a great veg/pasta toss - season with extra olive oil and herbs to flavor the pasta. I have also made a large batch of veg medley to have with my chicken breast, steak, or burger patty and then the next night toss it with pasta for a new meal. Many vegetables are great roasted in the oven. Toss them with olive oil, garlic and/or herbs of choice. Roasted carrots are great with dill, roasted asparagus is great tossed with just salt, pepper (if it’s ok for you, it's a M item) and olive oil, roasted cauliflower or broccoli, Brussels sprouts, corn on the cob, use your imagination or your favorite veg.

Sub for tomato: Home-roasted Red Peppers. Just thrown in the broiler, roasted til skins are blackened. Put in a bowl and cover with plastic wrap, let sit 15-20 minutes. The skin will "steam" itself off, and make it really easy to peel. I always had them around. Sometimes would store in olive oil, salt and some fresh chopped garlic. Can use anyway you like. I pureed sometimes in a blender with seasonings to use as a "red sauce" for my homemade pizzas! Yummy!


Potatoes & Sweet Potatoes: Any potatoes really. Regular, the small new red potatoes, yukon gold, etc. I made lots of microwave baked potatoes, just skipped sour cream til I tested it out. My hubby's favorite way for the new potatoes (I like the really small ones) is to halve them and set aside. I melt some butter in a big bowl along with some chopped garlic (if you are ok with it) to taste and salt to taste, cook it for about 45seconds to a minute. Then I toss in the potatoes and cook as my microwave directions indicate. Or, I cube them up, toss with olive oil and salt (pepper if you can tolerate it) and additive-free garlic powder (I get mine from Trader Joes) and even some herbs (dill &/or thyme are especially good) then bake in about a 400-425 degree oven til roasted tender and browned, yummy! I also treat my Sweet potatoes the same way -- cubed and roasted, sometimes with some brown sugar sprinkled on if I want different. Also yummy when and cut and made into oven fries.

Potatoes/Sweet Potatoes II –baked for either (for the white – salt and pepper & butter, unless you can do sour cream; and butter and brown sugar is yummy on the sweet. I have even used pureed cottage cheese in place of sour cream.

Meats – chicken breasts, steaks, preservative-free pork (need to be careful with pork) burger, and plain ground pork from the butcher’s counter at the grocery store. Either grilled or fried. I love my cast iron grill pan, better than the outdoor grill! Meats seasoned with herbs. Sage and thyme are a great combo on a chicken breast pan fried in a little bit of butter.(great with mashed potatoes and homemade gravy – either with home made stock or IC friendly broths/stocks and homemade bread stuffing, again prepped with ingredients that are friendly to you and IC safe broths)

I also prep my meats when I get them home from the store – every chicken breast gets cleaned and trimmed and individually wrapped and frozen. As do steaks. I will also patty up burger and individually wrap them and freeze as well. It makes dinner time much simpler during the week. No matter what the family is having (many times I have cooked two meals, one for me and one for them so they can still eat what they like) I have an individual chicken breast or steak or burger patty I can take out, defrost and cook easily for me.

A great and friendly pork sausage (make sure you know it’s fresh and does not have any unfriendly additives – I eventually found out I was ok with any pork, but in the beginning, I stayed on the safe side) is one made from fresh ground pork, some real maple syrup, fennel, salt and pepper. Pattied up and pan fried.

Many times if I am making spaghetti for the rest of the family, I will heat up some olive oil in a small fry pan, toss in some minced fresh garlic along with some (fresh or dried) basil and toss my pasta with that. Homemade Fettuccine Alfredo made with Kraft Grated Parmesan Cheese (in the green can) is also very friendly – and easy to make too, just not low-cal!!

If we were having burritos – there were two batches made, one for me and one for the rest of the family. I would season my meat with lots of oregano (I mean lots :) ), onion (I am ok with onion, but some are not, so be careful if you aren’t sure!!) and fresh minced garlic. Then I would wrap my own with an IC friendly tortilla, place it/them in a smaller baking pan separate from the rest and cover them (smother really) with shredded Monterey Jack cheese. Sometimes I would mix my meat mixture with fat-free refried beans (safe ones) and then fill and roll my tortilla.

Lots of breakfast foods – for breakfast, lunch or dinner. French toast is easy and quick and friendly with pure maple syrup. Eggs and toast, another great alternative as is a “breakfast burrito” - scrambled eggs with shredded Monterey Jack cheese melted in with chives (or herb of choice) and rolled in a tortilla. Homemade pancakes (until I discovered I was ok with Bisquick). Eggs scrambled with feta cheese and herb of choice is yummy too. Friendly bagels and cream cheese (brick form, not tub) are a great lunch/breakfast option with some canned pears on the side. Plain oatmeal (not the packet kind, but the round container rolled oats or quick cooking rolled oats) with brown sugar or maple syrup on top. (cinnamon if you can handle it)

Snacks – mozzarella string cheese, cottage cheese, Lay’s plain potato chips, Breyer’s (or any other all natural ice cream) French Vanilla (or other flavors with friendly ingredients like caramel) Kraft caramels, bagels and cream cheese, canned or fresh pears, homemade treats with all safe ingredients like sugar cookies etc.

Lunches: Breakfast foods (see above), bagels with cream cheese (brick not tub), grilled cheese sandwiches made with processed American cheese, dinner leftovers.

Tips/tricks: Out to dinner I would order my salad dressing on the side (ranch seemed the safest) and just dip the tine of my fork into it then stab my lettuce. Gave me flavor with minimal risk to my bladder, also took Prelief as insurance. ;)

I have come to love my Pizza with my sauce on the side or none at all. I order it with just cheese, green pepper and onions (M) (or veg of your choice that you are ok with). I do all right with black olives, as I think most do. And if I get my sauce on the side, I just dip my slice into it for a little flavor and again, minimal risk – plus my Prelief as insurance.

Breads: I have no problem with breads, only I tried to choose ones with the least preservatives etc. I still have to watch out for soy flour too. I love Lender's plain bagels, eat them often for lunch with cream cheese and a sprinkle of garlic powder and dill sometimes!

Dairy: I have no problem with milk (but some do), vanilla ice-cream (favorite is Breyer's French Vanilla -- no preservatives etc), cottage cheese, cream cheese, mozzarella and onterey Jack (that's on the maybe list, I believe, but I have been fine with it from the get-go), feta cheese & ricotta. I made/make my own dip and salad dressing with cottage cheese, any herbs I am in the mood for (usually salt, fresh garlic and dill) and a little milk. I blend it all in the blender to the consistency I want. My hubby loves this better than store-bought!) I also have no problem with American processed cheese singles, Velveeta etc. So grilled cheeses were a mainstay!

Beverages: Lots of water, lol. And some herb teas, look for decaf and watch out for rose hips. My faves are blueberry, peppermint and rooibos (Celestial Seasonings call it "Madagascar Red"). Most of my teas I get are by Celestial Seasonings, as it's readily available to me in my grocery store here in the boondocks, lol. I now have been able to do Kool-Aid, that's one of those test-it-out kinds of things, see if it bothers you personally.

[missusg]

WOW!!
thank you so very much. you make it seem more hopeful. I have modified my diet quite a bit and don't as a rule eat any preservatives since being diagnosed with Celiac.
I never cheat and have always tried to follow the rule of not eating anything with more than 5 ingredients. I try to also follow the rule of if I can't wash it I can't eat it
I will keep you posted

[traceann]

You're welcome! ;) When you're eating for a couple conditions, it sure makes you have to get creative!! :)

[Pam39+]

I would also suggest that you ask for a PST test at the very least. If you are not satisfied with those results you can have a Cystoscopy with Hydrodistention. I had the PST with positive results but still went to a specialist (urogynecologist) and had the Cysto w/Hydro done. I wanted to be absolutley positive before I did any kind of treatment. I decided against any type of SANS or similiar procedures as I was concerned about permenant nerve damage after researching it. I don't blame you for not wanting to take medicine without knowing. That is smart! The Hydro was actually theraputic for me and with that and the drug treatments I decided on as well as the diet worked for me. I am currently having some issues brought on by recent back surgery but know I can get there again. The diet was very scarry for me at first but Jill has really put a lot of effort into simplifying it for us and once you start on it it is really not so bad and quite healthy. This web page was also a huge help to me. I think you will find caring, supportive people here willing to listen and help where they can. Good Luck and please keep us posted.:angel:

[missusg]

it was a rough weekend but seems like everything is calmed down now.

I just got a call and I go for my first SANS treatment on Thursday.
I am so very excited. I hope it helps. :pray:

[traceann]

Keeping fingers crossed for you - do let us know how it goes!! :)

[missusg]

I had spanish rice last night for supper...not a good thing for me.

I will miss it. lots and lots of pain today. stupid me!!:tsk:

[missusg]

oh and i wanted to know, what about JELLO? is that on the okay list?
I am trying to think of treats for me. I love treats

[traceann]

Jello is one of those "experimental foods", lol. I am ok with it, but some aren't due to the colorants etc etc etc. so do try a little bit the first time and see how you do. I do love Kraft caramels, lol, too much I think. Most of us are ok with those, white chocolate, sugar cookies, chocolate chip cookies made with white chocolate chips, some pretzels (I like Snyders), Lay's Potato chips, Breyers ice creams like the vanilla or the caramel-types etc. Vanilla pudding I was good with (like the Jello instant), sliced pears with whipped cream (Yeah, real figure friendly there, at least the pears are, lol!!) - hopefully this will give you some jumping off points!!!

Hugs,
Tracey