IC Depression

[allisun13]

Hey everyone. I was diagnosed w/ IC in December of last year. I've been in a constant flare ever since. My main symptoms are urgency and frequency but I also experience burning that at times is hard to cope with. Since that time I have googled, googled and googled for months trying to figure this thing out. I've been seeing a Urologist who is willing to prescribe me anything I want for the treatment of IC but knows nothing about food allergies or candida possibly playing a role in IC. His often does not have a dietician that can help guide me through this process. I have tried by googling to find anyone in my area that specializes in IC but can't seem to find anyone.

I tried a few prescription meds but couldn't handle the way they made me feel. I am all of a sudden hyper sensitive to most medications now. The only one I have yet to try is Elmiron. I hope to get pregnant again this year but want to be better first so I've been holding off on trying that one. It seems as though many find Elmiron helpful but they have to stay on it to keep getting the relief. It's not recommended during pregnancy.

With that being said I also just discovered by seeing an environmental specialists in the area here that I have food allergies. I am 34 and never have had any allergies other than pollen. This came as a complete surprise to me. I also questioned whether I may have had a candida over growth. Undercystoscopy my bladder looked good - no bleeding no ulcers ect however I have all of the other classic IC symptoms - including acidic urine ect.

I am sticking to the IC diet and my symptoms have improved some what - basically the edge was taken off as far as the pain and urgency goes but I seemed to be in this platue of symptoms that just won't get better or go away. I am currently taking allergy shots but I think I may have become allergic to some of the foods I initially wasn't real allergic to. I also was using alloe capsules and marshmellow root tea and feel I have become allergic to them. It seems like I am in this hyper sensitive, hyper allergic state and I have no idea what the best and quickest way is to get out of it.

Has anyone done allergy shots, blood allergy tests or a candida diet and had improvement of symptoms?

I am normally a very happy person. Since this I have become so down. I would like to avoid all prescription meds if possible. I really wish there was a Urologist or some time of doctor in my area that specialized in holistic treatment for IC. From what I've read on line it seems as though if food allergies are found then those foods are avoided symptoms could get better and possibly go away. I just can't seem to find the right professional that can help me with this.

I feel alone and down. To be only 34 and think that I may have to deal with this the rest of my life is very sad. Thanks so much for letting me vent. My heart goes out to everyone with this disease.

[vm]

I also struggled with depression and anxiety when my IC started. You are not alone. I think most of us here can relate. It's so difficult to have symptoms and not be able to just got to the doctor, get a prescription, and cure this thing immediately. I remember feeling absolutely stunned when I learned that this was not curable. Treatable - absolutely, but no cure yet.

I'm glad the diet seems to be helping a little. I hope you can find some answers in terms of allergies - and also using some of the alternative treatments you are in favor of.

Hang in there. It really is true that most people with IC do go on to find treatments that help.

[allisun13]

Kim,

Thank you so much for your kind words below. I have been holding off on Elmiron because I hope to be able to have another baby soon. Seeing that it has helped you does give me hope that if I can't beat this another way then I can at least then go ahead and give Elmiron a shot. Thank you so much for posting even though you are doing better. Your post means so mcu to me. I hope Elmiron continues to work for you.

[vm]

I hope you find your answer soon.

[Jinny Jean]

When I first started having symptoms I immediatley went on the anti candida diet, because all of this started to happen after I took a whole wack of anti biotics. It helped alot at first, so much that I was able to start working again. I also took anti fungals from a naturopath. I ate no sugar for 2 months. NOTHING, no bread, sugar, fruit, milk products, no caffiene nothing. I would reccomend doing that in conjunction with the IC diet for a litle while, maby it will help improve some of your symptoms!

I was SO depressed when I first went through this all, and sometimes do get depressed still too.... People like VM help so much in raising my spirits and letting me know that there is a way to live with IC, you just have to find the right way that works, and sometimes that process can take a long time. I have never been officially diagnosed, and probably wont either ( I dont need someone else poking around down there when I am already uncomfortable!) I have started to find some of my triggers for sure namely cranberry and birth control pills.

For the most part I am able to eat whatever I like within reason, exluding everything acidic (cept blueberries and pears for fruit, and some apples) no coffee, tea ,pop, tomatoes, chocolate or anything spicey, even pepper I stay away from.I was originally taking all these suppliments from the naturopath, but after awhile I was just like, you know what. I dont need this extra crap in my body. So I now only take Elmiron.

BELIEVE me when I say I did not want to try anything prescription either, (and I tried doing JUST the diet, I tried everything natural before elmiron) especially that I would have to take for life.... or that might make my hair fall out (small chance) BUT I had to try something else. I have been on it one month and it does seem to be helping. I notice that I have more normal days in a row now. When I say normal, I mean NORMAL too. I pee 4 times a day (unless I am drinking copius amounts) and when I do pee there is alot, and it doesnt burn, twitch, no pain .. nothing. I am hoping the longer I stay on it the better I will be, and the more normal I will feel. I found that once I started to have more control over my body through diet etc. that my depression went away. I still have my teary mad days, but no where near what I was like 6 months ago. I think my next step will be to try cystoprotek, this is natural (although I dont think you can take it while pregnant)... Your not alone! Ill hang in there with you!

[allisun13]

Hey Jinny!

I feel like I POSSIBLY have had a serious break through since Friday. I am reading the book The Yeast Connection by William Crook.

To give you a quick history this (urgency, frequency, burning and bladders sensitivity) started in the form of what I think was possibly a bladder infection in September of last year - I was out of town so took an OTC test and it showed positive for Leukocytes. I had my GP call me in an antibiotic. The symptoms cleared up with in a couple of days.

November of 2010 the exact same thing happened - again I took an OTC test I had on hand and couldn't get to my doctor - had her call me in an antibiotic (regret this now). The symptoms cleared up within a couple days.

December 23, 2010 I thought I had another UTI. This time I went to a Doctor's Care - the in house test came back positive. The culture came back negative. They referred me to my OBGYN - their in house test showed negative and they sent me to a Urologist. I never had another negative in office test from then on yet had all of the symptoms. He tried several over active bladder meds on me and a couple of things that are used to treat IC - neurotin, an antihistamine (can't remember the name) and Urelle. He suggested Elmiron but I held off on that b/c I had planned on getting pregnant again (by now) until this so I didn't want to go on something that wasn't a cure - and could not be taken during pregnancy.

None of the prescription drugs helped and I was very sensitive to the medications - more so than I normally am - which I tought was odd.

Meanwhile - pollen season started here and I continued to take my usually allegra for this.

(Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The book mentioned in this posting represents one patients opinion and is not, that we are aware of, supported by any IC research studies.)

I started googling the heck out of IC and anything potentially related. I found a website that promoted Catherine ****** and her book "Along The Healing Path". I bought the book and read it and began researching more based on her suggestions. I was skeptical of the book since everyone says there is no cure. (which I still believe there may not be)

In all of my research from then to now my belief in my case is that I have for some reason had an overgrowth of candida yeast in my intestines. Which I believe triggered food allergies and food sensitivities as well as cystitus in my bladder. I started going to Dr. Allan Leiberman here in Charleston, SC. He is an environmental specialist who treats as naturally as possible only prescribing meds if absolutely necessary. I found that I was allergic to numerous foods (all of a sudden at the age of 34 - I had no food allergies prior to now and did not know I was experiencing food allergies) including wheat, corn, potatoes, peanuts and many many more but those first few were bad enough allergies that I can't treat those w/ allergy neutralizing shots - I have to actually avoid those foods.

Fast forward to today. Friday I was very very frustrating - I was experiencing significant burning again and felt like there was no hope. With the allergy shots you have to take 1 a day for 10 days in a row then you can go to twice a week. I finished the 10th shot on Saturday. I still was having burning but found if I ate rice, milk products or drank my low acid coffee I would sneeze and my throat would start hurting. I believe that b/c I had a space in time where I tested for the first set of foods and then went back and tested for the next set that (during that time I continued to eat everything daily) I became more allergic to the things I had tested positive to. They have a scale of 2-9 I believe. If you are a 5 or above you have to avoid that food. If you are a 4 then you should not eat that food more than 4 days in a row. Me being a coffee fanatic still drank the coffee every day and being that I couldn't have potato, corn or wheat for at least 30 days left me with rice - which I tested at a 3. I ate rice daily - I think if I eliminate rice and coffee and milk then I may be able to get rid of this burning. My guess is my allergic response is causing histamines to be released in the bladder causing it to be inflamed and burn. When I backed off of these things this weekends I actually had several hours through out the day that I felt better than I have felt in months.

Have you been tested for food allergies? Everyone's responses are different - mine are sneezing, soar throat ect. but it's not uncommon for the food allergies to show them selves in other less easy to identify ways.

Meanwhile I also have been suffering w/ heart palpitations from time to time (heart checked out perfectly fine), pain/tightness in my chest which seemed to be triggered by stress or the after math of a stressful day/situation. Also I have had some ear pain but no infection, fatigue yet I am not sick and at times the fatigue was siginificant. Also constipation, gas and muscle twitches or pain in my abdomen and mouth ulcers that lingered. I have now learned since started to read the book "The Yeast Connection" that this is all likely from the candida yeast over growth. When I initially went to Dr. Leiberman I had just read Catherine ******'s book and he put me on a Candida diet along with Diflucan and . He did not give me much guidance but a hand out telling basically what to eat and not to eat for how long and the hand out said to read "The Yeast Connection". I did not run out and buy the book and read it then. I should have. All of this was going on at once (testing for allergies, doing the candida diet - I had no idea it was all related). I even stopped taking the Nystatin b/c I couldn't figure out what was causing the burning. I have an apt. w/ Dr. Leiberman this Thursday. I am going to stop drinking coffee and eating rice and see if I can get these symptoms to completely go away. I also am going to get back on a candida eradication diet. It seems like the candida will always be there but can be controlled as long as my immune system isn't compromised. At this level I know it is so I may have to do some form of this diet for a while - while also building back up my immune system-which can take time. I think you are very likely right about yourself and the sugar. It seems like we will always have to be careful unless there becomes a way in the future to totally get rid of candida. Good luck to you and don't give up! Please feel free to PM me any time if you want some one to talk to. I don't know if I have this figured out but I do know that having someone that is going through this also helps to take away some of the feeling alone and frustration.

[Jinny Jean]

(Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The book mentioned in this posting represents one patients opinion and is not, that we are aware of, supported by any IC research studies.)

Right on, I am glad that you have had a break through! I have just ordered Catherine ******s book as well and I will be picking it up soon.

I thought about reading the yeast connection, I mgiht have to order in that one. Pretty sure that yeast definatley has played a huge role in my symptoms. I have also had a bit of a break through too! I Started to make smoothies! I think I am gonna try to make a smoothie every morning and make enough for lunch too, then eat a full meal to start with at dinner. I am making just green smoothies, with no sugar ( starting on the anti yeast diet again). The smoothie I made this morning had one gala apple in it, one pear, 2 stocks of celery, one can of coconut milk, a handful of blueberries, handful of lettuce, half a banana, 1 tbs of flax powder, and some vanilla almond milk.

Tonight im gonna have dinner, (avoiding bread) and also make a "dinner smoothie" haha with one cup of carrots, 2 acorn squash (you have to cook them first) half a clove of garlic and a handful of spinach. I think I am gonna do this every night, as those types of foods are SO alkalizing for your body. This allows me to cut out lots of sugar too, just eating veggies rather than say a cookie haha. I have been following a lady on U tube- Her screen name is go4dicipline. She "had" IC and healed herself (or so she claims) with eating a raw good diet like this. She was a little more hard core in the fact that she would just drink many smoothies all day instead of eating solid food, and didnt eat meat or dairy either, (because they are acidic). Anyways she makes PERFECT sense to me, and I really only think her advice can help. What does it say in the yeast connection about IC?

[allisun13]

Hey! The Yeast Connection Book talks about Cystitis and urinary disorders being linked to the yeast however it does not (anywhere that I could find) state "Interstitial Cystitis". The book is really cheap and is very informative. The one thing I did not get from it is how to get rid of the roots. The yeast burrow down into your intestinal lining causing "leaky gut". Getting rid of this when you have IC takes years. Unfortunately cleanses and evasive medical treatment is not a good answer for us as it can cause significant pain.

I spoke w/ Diana here on the ICN website today. Last week I bought a consultation with her. It was only $45 and you get 30 minutes. If you go under ICN shop and ICN Personal Coaching she is down at the bottom. After making the purchase you'll get an email from her a few days later. She'll send you a questionaire to fill out. I told her everything from start to current of all bladder related illnesses and anything else I have tried or am going through.

When we talked today she outlined each and every issue she thinks is a part of my body's problem and can help me get back in line. She never mentioned Catherine ****** but she seemed to follow the same exact type of approach. That this is a body problem and the whole body has to be addressed. I found her to be VERY helpful and will be setting up more consults with her. I think with her knowledge and personal experience she is going to be able to help guide me to get back to being in good health. I'd highly recommend setting up a consult with her. She takes the all natural approach and has been an IC patient her self. I wish I had found her sooner! You seem to have a lot of knowledge and be on the right path - I do think she could very likely help you also. Best of luck to you! I am happy to hear you are thinking along these lines and I am not the only one realizing that this is not just a bladder thing.

[Jinny Jean]

Yeah, I for sure think that it is a whole body thing. I was completley FINE befoer I was given to many anti biotic to take for an infection that wasnt even there. I am still SO mad. Now I have to nurse my body back to health..... without the garuntee that it will get better. At least I know that what I have done ie, the anti candida diet and going off the BC pill has helped ALOT.
Now my symptoms most often are just freaking annoying rather than dibilitating, and sometimes I dont even think about "IC" at all. I will have weeks at a time where I am normal. Today is an "ify" day I call it haha. Its on the borderline of normal and plain annoying. I guess if there has been any good come out of this, I have definatley turned to the natural side of things. My boyfriend is big in to this, so really we have this in common now too!
I am also my "own best doctor" rather than running to western medicine on things like diet etc. I mean clearly they have a purpose, but when it comes down to IC and things there is no one quick fix... so basecly we have to heal our own bodies. I was in the hospital for 3 DAYS in Dec and no one could tell me ANYTHING after doing every test.. just shows I guess how much they know about the "whole body being out of balance" thing. I also have been to a naturopath too, but she could only help me so far. I should look in to consulting with Diana, maby she would have more info for me as well. Did she heal herself? or does she still deal with IC?

I can almost tell you for certain that YES yeast caused this, after the antibiotics (basecly it took over my body) .. Id do anything to get back to good health. I know things like this take time ( I have also become more patient) hahaha...but I am still young (24) so I think I have a good chance of still getting this all under control and probably coming out healthier in the long run. Now if I could only get off the elmiron! I have to say that this is helping though, I hope cystoprotek and do the same!

[allisun13]

I beleive through lots of research and trial and error she eventually got herself better. I think like most who get better - she likely still takes vitamins ect. but I know she did say she can eat what she wants now but she eats healthier. Seems like that is the general consensous for those who do get well and stay well.

I am about to get my blood allergy test done, start taking calcium citrate and monitor my oxalate intake as well as get back on the candida diet. I am also going to get some vitamin B-12 shots and get a urine test to see what other vitamins I am lacking. I am hoping in a couple of months to be having some symptom free days.

Good luck to you and which ever path you do take I hope it works!

[wagamama]

Elmiron may be okay when pregnant

Kim,

Thank you so much for your kind words below. I have been holding off on Elmiron because I hope to be able to have another baby soon. Seeing that it has helped you does give me hope that if I can't beat this another way then I can at least then go ahead and give Elmiron a shot. Thank you so much for posting even though you are doing better. Your post means so mcu to me. I hope Elmiron continues to work for you.

There was a recent issue of the ICA magazine that discussed common IC drugs and pregnancy; Elmiron was on the "generally considered safe" list. I understand if you are uncomfortable taking it, but you should talk to a few doctors again before you rule it out completely.

I've been on Elmiron for a little over a year and that, combined with the Elavil, has pretty much given me my life back. I have almost no symptoms on a daily basis, and the flares I have are usually mild and go away quickly. I think it's worth trying if you are interested.

I was very depressed at first too; I was 39 with one child and my own business, and I felt the same as you. It does usually get better, but it takes time. Being patient and forgiving of yourself will go a long way - take care!

[allisun13]

Thank you for this advice. I just had kidney stone surgery and now am having to stay on Ditrapan (spelling) because the surgery threw my bladder into full blown spasms that won't let up. I pray that it will calm down once the surgery damage has had time to heal. Of course I have this huge fear that it won't go away. IC is so scary. The surgery was last Friday. My urologist told me the recovery would be a couple of days. He did not tell me it would make my IC symptoms way worse. I had the surgery where they go up through your ureters into the kidney and grab the stones and pull them down. Apparently he had to "gently force" his way through the ureter. I was not a good stent canidate because my bladder was spasming so badly.
I feel like I took 10 steps backwards with progress since the surgery and I regret having it done.