I REALLY WANT to KNOW!!!!! Soy? Really?

[KathrynPInk]

It is my understanding AND my own history after having IC for 15 years, (I have been diagnosed that long!) that soy and its by products can cause bad flares. I have had terrible flares and pain, frequency, actually the worst when I consumed soy. So why oh why, would soy be an ingredient in some of the products advertised with the ICN?? I had even written to this board about 3 yrs ago and asked if if the soy could be the problem for some of us, and I received a resounding
"yes", it can bother bladders of ICers. I stopped the soy food and got better in a few days. There are several products listed today on the newsletter with soy as part of them.
I would love for someone to tell me why this is in the products when IC sufferers can have bad flares due to the ingestion of soy?
maybe it is an individual thing? It could be.
I have not had soy since then. Was this a mistake and is it fine to eat and drink soy, in the opinion of most of you all?

Thanks for anyone who can share their feelings about this with me!
Kath

[maryla]

Kath,

Soy kills my bladder. My D.O said soy is one of the worst things to put in the body. It has a lot of estrogen is what I read.

hugs and blessings

[KathrynPInk]

OK, I appreciate your answering me.
When:):):loco: I was looking at ingredients of a few of the bottles, it really stuck a nerve in me. I would not take anything that had soy listed because that is how bad it was for me!.

I thank you for your answer Mary; I truly do.
Katheryn

[Arike]

As one of the very few adults with a severe soy allergy I can assure you that the removal of all soy-containing products from the ICN's food and product database would probably wipe out their inventory.

To help you understand what I mean: Soy is in most processed items---and it goes by around 30 names. Gatorade...birth control pills...the oil they spray on fresh produce...the binding agent in supplements...etc. Despite allergen labeling efforts, it's not even always listed on packaging. Ascertaining the presence soy in products for me often requires calls to the company (and I am often disappointed).

Basically, what I'm saying is, don't let yourself get too stressed over the fact that they haven't removed all products containing some soy... It's not likely that you need to worry about every instance of soy. Even many with true soy allergies don't react to all forms of it (excluding myself) and can tolerate foods with soy lecithin and soy oil.

In fact, for some with IC, soy isn't a problem (for example: the author the IC cookbook "A Taste of the Good Life: A Cookbook for an Interstitial Cystitis Diet") You'll have to figure out what works/doesn't work for you.

[Arike]

Soy is in most processed items---and it goes by around 30 names. Gatorade...birth control pills...the oil they spray on fresh produce...the binding agent in supplements...etc.

To clarify--those aren't meant to listed as names for soy--but rather, examples of products that contain soy! Sorry for any confusion!

[KathrynPInk]

I appreciate your note explaining soy to me and the names which it "goes by". I am well aware of these soy ingredients and just pay attention to where they are listed, how far down the list, and the form in which they are given! I was a bit over the top in my letter the other evening partially due to my worst flares having had something to do with soy or soy products. I think it is important, (and I have let some ICers know my personal experience.(.NOTE: emphasis on "personal") that soy can be bad for those who are sensitive to it. Many perimenpausal and /or menopausal women try soy for relief of symptoms occurring during this unstable hormone time, and then become shocked at the slow and increased rise of IC flares.
I thought this forum might be a good place to let those know that soy products are not to be taken without caution by some IC sufferers, and it might be a great idea to sample some for a few days to see how the bladder reacts. My reaction took several days, and that too, can be confusing. As a clinical therapist and as a therapist who has taken a strong interest in helping confused patients in various life situations, I sort of put myslef in "those shoes" as i wrote my letter. It literally got to me, becasue of my my own history with soy. I must say; i am far from the first to share the soy story...and that is worriesome. It is true that soy byproducts and soy in various forms are contained in our food, but my alarm was take it slow; one never knows. As a 15-16 yr survivor of IC and kidney malformation, I am careful and am not as afraid as I was during that first grocery store visit after my diagnosis! My soy problems were not recognized for about 5 yrs after Dx, so it does make sense to take it slow. I have that wonderful cookbook and use it extensively! I think each one of us has to find the proper diet within the reccomendations so thoughtfully given in the cookbook! I have found (and early on) that tomato products do not hurt me at all! (yes!!!, wonderful!) So, we each have to take our time; don't we? As the mother of six, it was a difficult issue cooking what my family loved and not being able to even taste some of my trigger foods!
I am happy for those who may ingest soy to their heart's content! We each have our own food stories that are sad, in a way....and I wanted to give a hint: Be careful Dear friends.
Sincerely,
Katheryn

[Arike]

Trust me... I think soy is evil too ;)

The note wasn't intended to sound snarky or anything... I guess I wanted to explain that attempting to get rid of all soy may add more frustration than it's worth (if it isn't necessary).

Now that I know your background, maybe I should be asking you for advice. I admire your veteran status with IC-- it's always good to meet another person who can provide some perspective to a disorder that seems so unmanageable.

[KathrynPInk]

Girl,
I am in a flair right now and need help!!!!! Why is it that one can have this horrid disease for years ans STILL be freaked and truly torn apart by the symptoms? I feel like I ought to understand it by now..(flares) but being a somewhat anxious individual, I always get scared it will be a long one. I think my latest issue is enteric coated aspirin...I thought with the coating, it might be safer...OH NO!!! Anyway, bed is where I am and this busy season!
I can not seem to give myself good counseling and that is pretty bad.:loco: I was using AZO last night...but I think I need something stronger.

I appreciate your writing.
I really do.
Katheryn

[ICNDonna]

Foods with a tiny bit of soy seem to be okay for me, but I don't even attempt large amounts.

Donna

[Arizonian]

When I have a food flare,I do the bladder wash: 1 tsp of baking soda in 8 oz of spring water, followed by 8 oz of water. Some people can tolerate another glass of baking soda water but it upsets my stomach. This solution relieves the frequency and pain. Try it! Dr. Moldwin and Gillespie prescribe it.
Good luck.

[KathrynPInk]

Thank you!
I have not tried that and I so appreciate your letting me know about this. I will try it this morning. You know; it makes sense!

Warmly to All~
Katheryn

[Arike]

I'm so sorry for your flare!!! If you're that sensitive to the coating, I'd be wondering if you don't have an additional flare-triggering mechanism. This may sound like a dumb question but, have you been tested for allergies recently (specifically to soy)? When I have a reaction to one of my more problematic allergens, I have the most painful bladder, uterine, and intestinal spasms along with other allergic symptoms.

The last time I took something that was enteric coated...it nearly killed me. It was supposed to be "soy free" (that is, until I called the company and found out there were 'safe amounts' in the soft gel capsules). Now, I am very careful to avoid all of the soft gelatin capules entirely because they are often made using soybean oil.

Have you tried taking an antihistamine to see if it brings the ferocity down a little? My allergies and my IC flares are inextricably bound together--unless I am totally free of contact with any allergens, I can't seem to really "get better." As one doctor said, 'allergic reactions set the bladder progress of his patients back months'

Either way, I really hope you feel better soon.

[nottoc4]

Baking soda in water is my go to for food flare ups or vagial burning.

[maryla]

Kath,

Are you saying you took aspirin?? That's also a HUGE no no for the IC bladder!! I was told no NSAID from Dr Rackley at the Cleveland Clinic. Makes sence that NSAID's damage the stomach lining that they will do the same to the bladder.

hugs and blessings

[KathrynPInk]

Yes, I and know I should have known better. I have stayed away from those forever, but got a bit too sure of myself! I thought; what would it hurt for a headache and neck strain.
I tell you guys; we have to be so careful and be sure of what is hurtful for us individually. I so regret taking it.

Anyway, I do not get enough of the pain meds to keep me comfortable so I do the best I can. Instillation is no help with my pelvic pain.

And...forgive me for sounding like Dr. Seuss and Yoda mixed together...my writing style is a bit off...heck if I know why!

What is best for pain; I wonder.
Katheryn

[icnmgrjill]

Just to reiterate what others have said. Soy tolerance is very individual. It doesn't bother my bladder at all and I've eaten a lot of tofu and soymilk over the years.
But I had to stop it earlier this year when I discovered that it was bothering my stomach and giving me lots of stomach gas. There are just so many problems with eating a lot of soy... but small amounts seem to be okay for many patients.

Jill

[baaaby11]

Like Jill said, everyone is different. Personally, despite the fact that many others have problems with soy, I don't have any problems tolerating it.

[KathrynPInk]

It seems to be the case, everyone.
We all react to different foods in our own unique way....slow is the way to go in finding out which foods are our problem foods! It still takes me trial and error to find out after this many years. (I thought I had this figured out!)

Thanks to all for responding. I, myself, do believe our diets are very important and it looks as though you all believe this as well!

Katheryn

[ICNDonna]

Off the subject, but your doggie friend is totally adorable!

Donna

[bunglewaltz]

I agree with Donna, that's a cutie pie ya got there Kathryn! hehe

So I was reading this thread and although it was very informal I noticed a question had gone unanswered. It's one I've asked before and received no feedback.
Is there something over the counter to take for pain? Ibuprofen? Tylenol? Motrin?

[ICNDonna]

Motrin and ibuprofen (the same active medication) is not good for many ICers. I take tylenol, but not full time --- your doctor can advise you on safe amounts of tylenol.

Donna

[KathrynPInk]

Thank you girls for the help!
I love dogs and I appreciate your thinking my boy is cute; that expression is fairly consistent with his temperament. he is part Dobie and part Lab but has the calmness of a relaxed Dobie. (He is 5)
Donna, your dog is beautiful; they really are such a comfort.
Leslie, thank you for the follow up on the pain meds. We are in a bind at times to find what works. So many people take eating out or sharing a glass of wine at a wedding so normal...my gosh, the wine would do me i! But, on the other hand, we all have our burdens and like ours...many burdens are hidden. To look at someone with IC, who would know what we have to take into account just on an everyday situation. Going to Wholefoods.... and at least your best friend knows why you are reading the ingredients of every dish! At times I end up with honey dew and watermelon..and a cheese dish with pasta....Well, we really are more foods than that, but at times I just play it way safe until recently..
I think the comfort here is so nice, and no one knows a trouble unless they truly walk in the shoes...we can relate to some strong similarities. Comfort to know.
I recently lost my position due to cuts in funding so I am a bit strung out emotionally. Anybody know that feeling? I will continue to volunteer until something else opens that I can do with my training.....

[maryla]

Leslie,

Yes, watch taking OTC pain meds. I was told not to take any NSAIDS. Why not try a mild prescription pain med?

I take Demerol daily and I don't know what I would do without it!!


Kath, Yes he is a real cutie. I'm a dog lover myself. I have 2 pugs, Daisy Grace and Ada May.

Daisy is a constant, never leaving my side and sleeps with us. She has brought me so much more than I could ever give back to her.

My problem now is what do I do with her, while I'm going through my surgery and healing process? I know it's going to be hard for both of us being away from each other that long.

Sure could use some feedback on that one!!

Hugs and blessings

[KathrynPInk]

Hi Mary,
Thanks for the good words. i truly appreciate them.
I am sorry but i am not sure what surery you are having...? I know that you have to be concerned about your "babies" when you are facing surgery.
I hope you are OK. It is a tough time of year for some, and to be concerned with surgery and then getting better is a tough one to think about. I am so glad you have your little ones to be with you and they are great company.

Thank you for your words of advice and comfort. I wish you comfort as well.

Take care,
Katheryn

[maryla]

Kathryn,

I am having my bladder removed. Dr says it's time, it's real bad.. So, I am quite concerned about Daisy. I'll be in the hospitial a minimum of 7 days. Then I will come home with lots of drainage tubes and such.

So, what happens to her?? I've never left her for that long.

hugs and blessings

[KathrynPInk]

Hey Mary,
I am so sorry you have to go through that, and I know you are concerned about Daisy! Dogs do live in the moment, and I know she feels love so she will be fine but miss you. I had to have kidney surgery last year and left a tee I had worn to bed a few nights with my dog...it was a bit of comfort. :angel:

So tell me about yourself or do you have your story down here in the forum?
I hug you from NC!
Katheryn

[runningshoe]

Isn't part of the problem with soy the fermenting process makes it acidic and irrtating. This is different than having a soy allergy or an estrogen related sensitivity. So some of us could eat plain soybeans but soy sauce or tofu would hurt us. I think I have this right...........??

[tarynduf]

I was just wondering about soy lechitin. It's on my margarine container. Is it the same thing as soy, or related to it? Is it something I should be avoiding?

[Julie B]

Generally soy lecithin and soybean oil are fine with most IC patients. I can't tolerate any other soy product and it is weird, because I can tolerate a lot of other foods right now like chocolate milk, more fruits, and a small serving of tomato sauce now and then. But still no soy, tea, or strawberries. Oh yeah, no MSG.

[Mothergoose]

soy lecithin and soybean oil, these are both still soy products it just depends on how sensative you are to soy, whether they will bother you or not. If you have a soy allergy and are given a list of names that represent soy they are on it.

MG

[Lizzy L]

Dear Kath:

I am allergic to both ibuprofen and aspirin; I take Tylenol, and it does not seem to cause a bladder problem. Of course, we are all VERY individual in what bothers us and what doesn't.

I wish you the best.

Lizzy L

[etherealred]

I flare from consuming soy. Since I also flare from most dairy products (mild cheeses being the only exception), I was rather peeved when I discovered that soy was a problem for me too! I miss a lot of the vegetarian dishes I used to love to eat. I miss high quality soy ice cream and the many flavors of soy milk, too. I have accepted, though, that I just can't have soy anymore. To get my calcium (I don't eat a lot of cheese) I drink Silk almond milk. They just came out with it and it's really quite good, much better than blue diamond almond milk and cheaper too! I hate the taste and texture of rice milk and rice milk-based desserts, so I don't even bother consuming them. Almond milk (original flavor, not vanilla) works great for me and since it has a pretty neutral taste, I can use it in cooking too.

[etherealred]

I flare when I take ibuprofen, and I am not comfortable taking Tylenol long term (plus it doesn't help my pain). Since narcotics aren't really an option for me right now (pain clinic gives them mostly in short term pain cases, not long term pain cases, and since I tend to build up a tolerance to meds and eventually require high doses of stuff, it's not a good idea for me)... I am on Neurontin, Elavil (both on for four days so far, haven't noticed a difference in pain but four days isn't much time to tell) and I can tolerate one naproxen (Aleve) every 12 hours. The Aleve just takes the edge off but it's better than nothing. The pain is still really bad (a 7-1/2 or 8 with Aleve instead of a 9 w/o Aleve), but slightly more tolerable.