confused about certain foods. Feed back appreciated

[chhhb]

Hi

I've had IC for a while but am in the longest flare I've ever had. Because of that I'm having to be super careful with my diet. My bladder doesn't handle many foods very well at all right now and I've lost a lot of weight due to not wanting to eat much and having pain afterward.

So, my question has to do with some of the foods on the IC friendly list. I don't want to eat anything that might make this flare worse and keep it going. I've tried potatos, pears and avocados, all of which are on the friendly list but I've learned that all of these foods are really high in potassium which is supposed to be really bad for the IC bladder. Why are these foods tolerated well by most IC'ers with such high potassium content. I've tried all of these food just to get in enough calories but I get into a lot of pain withing a few hours or by the next morning depending on when I ate them. It's so hard to know what to try when the supposedly friendly foods bother me. Also, aren't people with IC supposed to keep their potassium content down???

Would really appreciate feedback from anyone who's up on this. Thanks so much!

Cherie in HB

[kadi]

Are you putting anything else in them or on them? Spices?
That said, I'm fine with pears and potatoes, but avocado did give me a flare and a rash when I ate it - seems I'm allergic to it. So foods that may be on the "ok" list may not be ok if we're allergic to them. Maybe that's an answer?

[chhhb]

Hi Kadi

Thanks for responding. No, I ate the potatos just baked and plain and the pear and avocado I ate plain, also, along with plain baked chicken. I'm so tired of bland food but don't want the pain so I keep trying. I've lost 12 pounds in the last six weeks with this flare and this has never happened before where I can't eat much of anything. I have always loved to eat but am a fairly small person 5'2" and a normal weight of 120 or so. I'm down to 108 now and getting getting so weak and need to eat but it's very hard when almost everything causes pain. Or if it doesn't cause the pain, I continue to have pain even with the bland diet.

Thanks for your response!

[sailawaygrl]

Might be time to see your Dr for some more help. I am assuming you have made sure you don't have an infection? If you are suffering this much for this long you really need to see about some pain management, in my opinion. I don't think any of us should have to "deal" with it this long. Have you talked to your Dr about this? You didn't list what meds you are taking, so I was wondering if you had any emergency meds for pain? I hope you find some relief from this flare soon. It can be exhausting.

Sandra

[chhhb]

Thanks for responding, Sandra. Believe it or not, I've been going to my urologist for weekly bladder instills for over a month now. He also did a cystoscopy a month or so ago to make sure there had been no change in my bladder since diagnosis in 1999 such as tumors or ulcers. There had been no change. I've been on Elmiron and Elavil since 1999 and the oxytrol patch, as well. These meds have kept me feeling mostly normal for the majority of the 12 years with only five or six significant flares that lasted from 1 to 4 weeks. I could even eat mosts foods with no problem and was a very active person. The meds have been that helpful until this flare that started in late January. The doctor has also prescribed Uribel capsules to help with the pain between weekly instills. It's not a narcotic because I'm not a good candidate for that but it has an anelgesic or numbing effect which should help lower the pain. I do take it but it really doesn't help much. So, at this point I'm just at a loss as to what to do. I'm eating so bland and have been for weeks that I can't imagine anything in the diet would be causing this flare to continue on like this. But, really, it's all I can control that I know of right now. I'm hoping I can start eating better without more pain but it's difficult to eat when I'm worried that it's making the bladder worse. I just don't know.

Thanks again for your reply and suggestions and if you have any diet tips please let me know. I'm down to plain chicken or turkey, cooked carrots, zuchini, plain oatmeal with honey, rice and plain pasta noodles. I was eating eggs but they started giving me an upset stomach so I had to stop with the eggs. Maybe I should look for a nutritionist or dietician to help me. I can't afford to lose anymore weight because I need the strength get well!

Am sure hoping better days are ahead and soon!!

[chhhb]

Sandra, Forgot to mention regarding making sure I don't have a UTI. Every week they check my urine to make sure of that and it's always clear/negative....

[ICNDonna]

Potassium is an essential to maintain health. A deficiency can be very serious. I have a friend whose mother was hospitalized with stroke symptoms; they discovered that the problem was a potassium deficiency. And I had to be given potassium by IV before I could safely be given an anesthetic for surgery. I took a supplement for several years before I was able to find enough potassium-rich foods so I no longer need it.

I think potassium has a bad reputation because when it's instilled directly into the bladder it causes pain. I think of it the same way I think of salt --- if I have a raw sore and put salt on it, it's going to HURT --- but if I put that same salt on food and eat it, it's not going to cause pain. Potassium ingested and digested is not the same as when it's put directly into the bladder.

That said, I eat potatoes, avacados, and pears with no problem.

Donna

[chhhb]

Thanks for that info, Donna. I've never had an instill that contained potassium but I do hear it's painful and many doctors question doing it. My main concern was with eating it. I've had IC for over 12 years and until January have been stable on Elmiron and Amytriptilene except for a handful of flares that lasted from one to four weeks. I could eat or drink almost anything after stabilizing on the meds except for bananas, oranges, coffee, alcohol. I could even eat a little bit of strawberries and pinapple. I think I've mentioned in an email to you last week that I'm eating so bland for the last month of this flare that I've lost 12 pounds because I've eliminated almost everything out of the diet. I even have trouble with pears, potatos and just about everything. I think I may need to find a nutritionist or dietician to help me with how to do this elimination diet because my health is going. Even though I do have good parts of the days, mainly in the mornings if I don't eat, I'm weak and having a hard time doing my normal life other than going to the doctor appointments for the weekly instills. So far, they haven't helped much. I've had four so far. Most afternoons get painful and on into the evening. It seems that once I put food into my body, the later in the day it gets the pain, urgency, etc. come back. I really don't know whatelse to do other than trying to pinpoint what in the diet is causing this to go on and on since January. I don't know how to find a local dietician/nutritionist in my area who understands IC and can help me eat from the diet and get better. I'm a small person, 5'2'', and am usually around 120 pounds with a good appetite. Now, I'm 108 and almost get nauseated when I have to eat. I like pears because they have a nice taste but was afraid to keep eating them if they're causing some of the pain. I will continue to eat them, though, if the potassium in them is needed. If you know how to find a food expert in IC who works with people, please let me know. My urologist who is treating me hasn't really been good with that. He just says keep eating bland and use the IC food friendly list, which is good advice, but I'm still having bad symptoms daily. Thanks again so much for your reply.

[ICNDonna]

It's possible that your flares aren't being caused entirely by diet. If you're flaring with only a few foods, it could be that it's just the IC misbehaving. I know that I sometimes have a flare that I an certain isn't caused by a food or drink.

Do you have a copy of Julie Beyer's book, "Confident Choices - Customizing the Interstitial Cystitis Diet?" It's an excellent reference and can be a huge help in planning meals. It's available in the ICN Shop.

Warm hugs,
Donna

[VickiB]

I was thinking along the same lines as Donna, that maybe this later day flare-up cycle you're in isn't being caused by a food. It sounds like you were doing fairly well in managing your IC symptoms before, can you think of anything else that had changed about the time when your symptoms worsened? A new med/ supplement? A stressful situation? A new beauty product? Shoot, a new rug in the house?

The longest flares I've had have consistently been caused by stress. Seems every year I get one that begins over the holidays and lasts well into January. And when my MIL comes to stay, yee-haw! That one's the worst!

I sure hope you can get back to your good place soon!
Vicki

[chhhb]

Vicki,

I love your sense of humor and needed a laugh, thanks!

To answer your question, we do think we know what triggered this. The problem is how to get it stopped. In early January, two things happened close to the same time. I had my gall bladder removed a year ago and have had digestive problems since then so I see a gastro doctor periodically. In January he told me I needed to add a lot more fiber to my diet because at CT scan showed that I'm not moving my bowels well enough. Sorry I had to bring that up! Anyway, I wasn't aware of any problem there and hadn't felt constipated but he said I needed to add way more fiber. I wasn't having any problems or discomfort along those lines but I did as he suggested. He gave me a foods list and told me to get at least 20-25 grams of fiber a day and that I could get it in by picking items from the list. He suggested heavily fortified cereals that had lots of fiber content as well as dried fruits and breads and so on. So I began introducing all these new high fiber foods and a lot of which were things I hadn't been eating before. I never thought about the IC possibly getting triggered by this but I've read now that some high fiber foods or a high fiber diet can have a detremental effect on those with IC, especially if you're eating processed foods that have been heavily fortified. I didn't know that before! The other thing that happened during this same time is that I had my annual gyne exam and she suggested that it might be time to see if I could lower my HRT dosage and still do alright. I'm 56 and she said when patients are around this age they like to recommend the smallest dose possible that you can take and still be comfortable. Again, I didn't think about how it could trigger the IC. I've been on this dosage and stable for over ten years, after having a full hysterectomy. I asked her what was safe to gradually go down to and she said for me to take my usual dosage every other day instead of every day. Now, I realize that was abruptly cutting my dosage in half. Maybe that works for normal people not for me. Again, I didn't think about the IC being affected so I am just as much if not more responsible for my lack of knowledge or lack of remembering to think about how these things could trigger the IC. Both of these doctors know I have IC but they didn't take it into account either probably because they don't know that much about it or understand how closely IC is related to diet and hormones. About three weeks after starting the high fiber diet and two weeks after reducing my HRT, this flare came on. About five days later it hit me that it could be the sudden hormone reduction so I started taking my normal dose again right away. It took a little longer to think about the possible high fiber diet connection because I though it would be good for me, as the doctor had said. Finally a month or so ago as this flare continued with a vengence I started eliminating everything out of my diet that wasn't on the IC friendly column. My uro agrees that these things are probably what got me into trouble, especially the hrt reduction after being on them for so long as well as eating the highly fortifed foods. He explained that it doesn't take much to get the IC trigger but it can be really hard and take a long time to get things back under control. Just to be fair, though, we're not all alike and I know there are people with IC who have lowered or stopped their hrt and didn't have any problems. It's just to much of a coincidence to me that both of these changes were going on in January and the flare started right before the end of that month.

One of the most important lessons I've learned from all of this that I'd like to pass along is that I really do have to be my own best advocate, even with doctors. I must remember to discuss the IC with any doctor who is suggesting I do anything that involves changing eating habits or medication. I must educate them if they aren't knowledgeable about the illness. And it's utimately my decision and my responsibilty whether I make a change or not because I have to live with the consequences. I had done so well for so long that I becam less vigilant about protecting myself from ignorance, even my own! Boy, if I ever get stabilized again I will take much better care of myself and honor the fact that I have an illness that doesn't define me but that I must take seriously and do everything I can to keep it under control.

Thanks for the suggestions and the support. I am determined to get well.

[chhhb]

Donna,

Thanks for the suggestion about Julie's book. No, I've not seen it and I will definitely get it. Thanks for the warm hug, too.

I also think it has to at least partly be the IC acting up and being in a cycle now. I hope it will get tired soon and disappear like it always has!

Hope everyone has a good day or at least a day that has good things in it!

Cherie

[VickiB]

The dietary and HRT change could very well be behind this. I do notice a connection between what's going on in my bowels and how my bladder reacts. I also have noticed a correlation for me between hormones and flares. Not so much anymore as I near menopause, but I do have concern over what "the change" will bring me IC-wise.

He explained that it doesn't take much to get the IC trigger but it can be really hard and take a long time to get things back under control.

Yes, that's certainly what I have found for myself. In my above post I was tempted to add that it wasn't for just the time while my MIL was visiting. It takes a good two weeks or more after she's back on the other side of the continent before my bladder calms down. (I love her but God knows she can be difficult!)

Your paragraph on the important lessons you've learned ought to be an ICN sticky somewhere! It sounds simple yet is so hard to put in practice, -at least for me! You have a great attitude though when it comes to dealing with IC and sometimes I think that's half the battle!

Vicki

[Annie2]

I definitely agree! High fiber foods can set off my IC. Suddenly stopping HRT is what trigged the development of IC for me. I now use Estrace cream and it helps immensely.

There is one other thing you might want to consider and discuss with your doctor. You say you are doing instills. Are there by any chance preservatives in the solution being used? There are those here who have recounted they cannot tolerate such additives in the solutions used for their instills. Years ago I went into a horrible flare and we tried instills. I felt slightly better after the first instill, but starting with the second one I felt worse and by the 4th instill it was so painful and it became apparent I was allergic to one of the components of the solutions. Ouch!!!!! It took quite a while for my bladder to recover from that reaction. This might not apply to you at all, but since you are very sensitive to foods and other substances, it might be a good idea to discuss this with your doctor.

[Little Sunshine]

I hope you get to feeling better soon. I am yet to figure out this diet thing myself. I was diagnosed a few weeks back and haven't felt ANY better since being on the IC diet. I understand it can take awhile and patience is a virtue....but mine is slowly wearing thin. Like you, I have lost weight due to all of this. I am afraid to eat; something that I used to LOVE to do. I am 5'6" and have lost 17 pounds. Pretty much all of the muscle I had built up for summer hiking season out West. I wish I had something to reccomend to you, alas, I do not. But please know that you are not alone. I think your attitude is wonderful and I know that plays a huge part in the way we feel. I hope you find something that works for you. I find bread and crackers with no problem ingredients easy to eat...but they lack nutrition for the most part and don't help my colon health either! Maybe my high fiber cereal set of my IC too. I was having bowel issues and switched to a heavily fortified fiber cereal. My GI problems turned into what they thought was a UTI that wouldn't go away...and now this! I have also been feeling terrible since right after my 32nd birthday about 10 weeks ago. I'm ready to have my life back now and know you are too.