Monday, December 19, 2011

Irony for the IC patient

On Friday I had a Cystoscopy and Hydro-Distention of the bladder. This is a pretty common procedure for IC patients. I think it was my 3rd Cystoscopy and my 2nd HD. Anyways, I got knocked out for the procedure (and got my new IUD inserted too) and when I woke up and finally was lucid I discovered something horrible. I couldn't pee. That's right, here I am with a disease that makes me pee all the time and I couldn't get my bladder to work. Turns out this is potential side effect of the this procedure about which nobody had warned me.
So now we cut to what happens when a woman with IC can't pee. Also known as the ironic twist to this story. I went to urgent care that night and they inserted a catheter to drain my bladder and then they let me rest to see if my bladder would finally work properly. After a good solid hour it became clear that my bladder had, at least temporarily, gone on strike. I couldn't pee. Let me just say that as woman with IC, who often has to pee every hour or more, not being able to pee was even worse than peeing every 10 minutes. The pain was horrible.
The doctors at Urgent Care decided the best thing to do was to insert a foley catheter with a bag so that my bladder could just relax and drain easily. So they inserted this torture device into me and sent me home with instructions to return the following day.
Let me be clear. They sent me home with a bag that would collect my urine. I think now would be the best time to say that I had asked my new boyfriend (of only 2 months) to accompany me to the earlier procedure and to urgent care. We then went home, watched some TV, and went to bed. All while I was "wearing" a bag of my own urine.
This was quite possibly the most embarrassing moment of my entire life.
I barely slept.
The next morning, urgent care removed the catheter and I was able to pee normally. I have never been so happy to pee in all my life.
However, now I have a yeast infection (I believe) because of the antibiotics I had to take after the procedure and which are even more important since I just spent an entire night with a catheter inserted into my urethra.
And that is a summary of the worst night of my IC.

Monday, December 5, 2011

IC and the common cold

So I have IC. It's annoying and painful and it limits the way I live. But I have gotten used to it. No use crying over uneaten chocolate. There is one thing that is really getting to me though. I miss cold medicine. More specifically I miss Psuedophed, Nyquil, and that nasty tasting thera-flu. Now that I have IC all those drugs are on the "no-no" list. They would cause a flare just as soon as they made me feel slightly relieved of my cold symptoms. Then where would I be? I'd be sick, congested, coughing, sneezing, and in the ladies room every ten minutes with constant bladder pain. No thank you. I will take my illnesses one at a time please.

But this leaves me, and everyone else with IC, in a bit of a bind over what to do when we get a cold. Its like I am living in the dark ages. I have been sick now for four days and I think I have found some good coping mechanisms. I am going to share them with you dear readers and if you happen to know any other cold coping strategies please feel free to post them to comments.

1. Hot Tea (Peppermint or Chamomile) I don't know why but hot tea seems to at least make me feel a bit better when I am sick. Plus if I add honey to my tea it coats my sore throat. Since I can't have OTC broth and I am too lazy and currently too sick to make broth for myself, hot tea has become the substitute.

2. Afrin nasal spay. However, one must be aware that this stuff is highly addictive. It can only be used for three days tops if you use it every 12 hours as the dosage instructs. Maybe you can stretch it to 5 days if you only use it at night.  Afrin (and its competing brands) nasal spray is a great drug. I went from severely congested and feeling like I was drowning to breathing freely for about 8 to 10 hours. This is perfect for when I need to sleep. Its also the only decongestant that doesn't make my bladder cry out in pain.

3. Advil. This stuff is great. It brings down fever and it also brings down the inflammation in my nasal passages that restrict my breathing.

4. Dye-free Benadryl. It helps me breathe a bit more easily and makes me sleepy enough that I can rest my way into better health.

5. Go to the Doctor or urgent care and get a prescription for better drugs. I can't take OTC cough medicine but I can take Tessalon Pearls (http://www.medicinenet.com/benzonatate/article.htm).

6. (I can't do this but I know from others that it works) Neti Pots and Nasal Rinse. Flushing out the sinuses really helps alleviate cold symptoms. Its safe for IC patients as its drug free. Its a bit uncomfortable but not painful. Why don't I do it? I am one of the very few people who have ears nose and throat issues that prevent me from using a Neti pot or a nasal rinse. I get water behind my ears when I do it. But I am the exception. Try it for yourself and see if it helps you.

7. Nasal Saline Spray- Like Afrin but not as effective or addictive as its drug free. It keeps your nasal mucus membrane moist and that will help make you feel much better.

8. Rest and push fluids. Really. Don't think you can just "push through". If you have IC then you get sick with a cold its going to make you more likely to flare. Let's face it. Stress makes this disease worse. So when sick, rest and push fluids.

9. Eat simply. Now is not the time to try new foods. In fact the best way I have found to prevent a flare up that can follow a cold is to keep my diet as simple as possible.

10. (because I really wanted list of 10 things) Stay on all my regular IC meds and supplements. Though I when I am sick I add Colostrum to my supplements as it helps booster the immune system and doesn't anger the bladder.

For more information from a trusted source follow this link..http://www.ichelp.org/page.aspx?pid=964

And remember wash your hands frequently, get your flu shot, avoid people who are sick (send them a card or an email telling them you still love them but not their germs), and get lots of rest during the cold and flu season.

I hope you all stay healthy and flare free.

The Goose Girl

Monday, November 7, 2011

The IC safe salad

So one of the ironies of IC is that the diet is heavy on green veggies but low on condiments and sauces. I mean what are we supposed to put on these veggies? Think about it, before IC when did you ever just sit down and eat brussels sprouts, spinach, broccoli, etc plain or perhaps with just butter? Before IC my salads had spicy chipotle dressing, ranch, blue cheese, or caesar dressing but after IC eating salads became a challenge. After all a bowl of greens without dressing is kind of like a day without sunshine. However, I love salad and I crave greens so I have designed an IC friendly salad. It consists of baby greens, cucumber, carrot, avocado, parmesan cheese and olive oil.  I can add other veggies as I feel like it, for example this weekend I added broccoli and cauliflower. The olive oil and parmesan cheese make a nice replacement for dressing, especially when I add avocado. If you have an IC friendly salad, please post about it as I am always looking for ideas.

Wednesday, July 27, 2011

More supplements

So I am blessed to have a best friend that works at Henry's grocery store. They have a great natural living section filled with vitamins and supplements, and while my friend works in a different department she is incredibly knowledgeable about supplements.

Today I have started taking Biosil http://www.amazon.com/Natrol-Biosil-60-veggie-caps/dp/B0018LRBUW
to help with my hair, skin, and nails. I suspect it may help with the bladder as well because its supposed to help regrow connective tissue and that's the problem with the IC bladder, the GAG layer is defective. So my hope is that this will also help.

This is not my most well written post, I just wanted to jot a quick note about taking a new supplement so I would have a record of when I began. I figure this will help me see if there is any noticeable improvement in either my skins, nails, hair, or bladder.

I should note that I started taking Biosil because I have very brittle nails and I am hoping this will help.


I am also taking a gentle iron supplement because I have mild anemia.
http://www.amazon.com/Solgar-Gentle-Iron-veggie-caps/dp/B00013Z0QA/ref=sr_1_1?s=hpc&ie=UTF8&qid=1311785491&sr=1-1

For those with IC getting an iron supplement can be difficult many come with vitamin C or in soy capsules, this particular brand is safe for IC patients as far as I can tell. I just started it today as well and I will update with any news.

Monday, July 11, 2011

Supplements

So I am blessed to have a very close friend who knows a lot about alternative supplements, also my doctor is open to them and so I feel very supported in choosing to add supplements to my diet. I also find that when I take my supplements it really helps me stay healthier and makes my bladder happy.

I take the following everyday:

                                    Glucosamine & Chondroitin W/Quercetin & Bromelain - I take this instead of Cystoprotek because I like it better, its cheaper, and it works for me. The hope is that is rebuilds the bladder lining and the quercetin reduces inflammation.

Uri care - http://www.himalayausa.com/herbalformulas/uricare.htm

From the website:


UriCare® is a proprietary herbal formula which naturally promotes a healthy urinary tract and helps maintain normal urine composition and mucosal integrity. It is a natural aid in maintaining healthy water management and helps with temporary water - weight gain.
As a dietary supplement UriCare® assists kidneys and urinary tract in normal functions. It provides normal absorption and utilization for overall healthy urinary tract.
  • Provides overall support of the kidneys and bladder for normal urinary tract function*
  • Supports the mucosal integrity of the urinary tract and normal composition of urine*
  • Supports the kidney's crystalloid-colloid balance*


Stress Care http://www.himalayausa.com/herbalformulas/stresscare.htm
From the website:

Healthy living under certain conditions can be undermined by stress and other environmental factors. Coping with the consequences of stress is fast becoming a cornerstone of health and well-being.

StressCare® is a natural proprietary herbal formula which assists in preserving the existing anti-oxidative system within the body's cells. It supports a healthy and normal adrenal gland function and helps keep cortisol levels normal. It also relieves occasional stress, fatigue, frustration, mood swings and sleeplessness.
  • Relieves occasional stress, fatigue, frustration, mood swings and sleeplessness*
  • Has natural antioxidant properties*
  • Supports healthy and normally functioning adrenal gland cells*
  • Helps keep stress-induced cortisol levels within their normal range

http://www.amazon.com/Jarrow-Formulas-Hyaluronic-Complex-capsules/dp/B000IZXZMW

A little bit about it from the web
BioCell Collagen II is a low molecular weight, water-soluble glycosaminoglycan complex completely derived from chicken sternum cartilage and is standardized to naturally contain at least 20% chondroitin sulfate and 10% hyaluronic acid (50 mg per capsule). Hyaluronic acid provides the fluid matrix for joint lubrication, skin hydration, and skin repair. Unlike ordinary collagen products, patented BioCell Collagen II is a rich source of bioavailable hyaluronic acid and is clinically proven to support joint health.

Why I take it: I take it to help build up my bladder lining. 

I also take Spirulina whenever I do a DMSO treatment because it acts as a natural deodorant and helps neutralize the sulfur smell from the DMSO.
My friend gets mine from Henry's market but I can't find a link to it. 

All of the supplements that I take are free from soy.


All the best,
The Goose Girl

Sunday, July 10, 2011

DMSO - A Love Hate Relationship

On Monday if all goes according to plan  I will pick up my DMSO from the pharmacy and go to the doctor's office for an instillation. I both love and hate DMSO. Here's why. I love that it makes me feel almost "normal" for several weeks. That is, after a DMSO treatment I don't feel my bladder every waking minute of the day. Most people are only aware of their bladder when they feel the need to void,  lucky bastards. While I do get occasional instills of Heparin andSolu-Medrol, they aren't as effective for me as the DMSO. So that is why I love it, simply because nothing I have done as worked as well.

But DMSO also has a dark side. First off, it hurts and burns like hell to have it inside the bladder. God forbid the doctor accidentally drip any of the medication on to my labia, which has happened, because it burns like fire. A treatment of DMSO usually involves at least one does of Tramadol about one hour before the instill, this helps reduce some of the pain. Then I get to hold this searing liquid in my bladder for an hour. I swear when I void that stuff, I can feel the pain release as far as my finger tips. So I think I have established that the pain is pretty freaking nasty. If that were DMSO's only negative side effect, well that would be bad enough. Sadly however, its not, DMSO leaves me smelling like rotting broccoli and sulfur. No amount of perfume or mints can cover this odor. The smell is like a gift with purchase, except that gift sucks and the only thing I am purchasing with all this pain and aggravation is a few weeks during which my IC symptoms are relatively mild. Its worth noting that I still have to strictly adhere to the IC diet  just one chocolate and all my hard work would be for naught.

Lately I have started taking a "super greens" supplement for a day or two before, the day of, and the days after the DMSO treatment. I have noticed that this helps reduce the amount of time that I smell like a old fart. I am forever thankful to Pigeon for bringing me the super greens and convincing me to give them a try. This time, I started taking them yesterday and my hope is that I will only smell bad for a day or two at most. Whereas, I usually smell bad for at least three days. Since when I smell bad I tend to sequester myself in my home until the coast is clear, DMSO takes me out of my life more than IC does. When I am in  flare I will usually still try and go out, but when I smell bad I feel awful subjecting others to the smell. Its really annoying,

So that dear reader is my love hate relationship with DMSO, if your doctor recommends it I would say try it. For me nothing has worked better. If you are on DMSO I would be curious to know how it affects you and how you deal with the side effects.

Thursday, July 7, 2011

a brief update/vices

I hope everyone had a wonderful 4th of July. I spent mine in the urgent care for 3 hours followed by about 6 hours in the ER, where I was finally given an instill of Heprin +Solu-Medrol. Hooray for good meds and the pain relief they bring.

I don't have to much else to say about this most recent flare up. I am not 100% sure as to what brought it own though I think it was a combination of stress, a small lapse in diet (I had the tiny bit of chocolate at the end of skinny cow cone + the vanilla skinny cow cone), and perhaps cigarettes. Yes, dear reader I started smoking I am also quitting smoking. Making me she shortest smoker in history, I smoked for a few short months and now I am done. Its expensive, smelly, gives me headaches, and now aggravates my bladder. So no point in doing it, is there? Nope, I think not. Well, its also pleasurable and since I have so few vices I like to keep those I can. But sadly this is one I have to let go.

I no longer eat chocolate, or drink alcohol, or eat anything too interesting, for personal reasons I am currently abstinent, I no longer smoke...cigarettes, thank god I dance or I would feel like I had become a nun or something.

What vices do you have dear reader?

Sunday, July 3, 2011

Flare up or IC...

So on Thursday night I went dancing as is my usual habit. Around 11 or 12 I noticed that my urethra was becoming irritated and I felt like I had to pee. Almost immediately I felt that all to familiar pressure and pain in my bladder. I took some pyridium (AZO) and drank some water and went on with my evening. The next morning I called my doctors office only to learn that my doc won't be back until fall and the office they referred me to can't take me till August. I did manage to score an appointment with a doctor for the 11th and I went to urgent care in the hopes that they might do a instillation if I brought the meds.
They tested me for UTI and put me on Bactrim because I tested positive for nitrates. The culture should be back on Monday or Tuesday and that will  tell me for sure if I have a flare up or UTI.
In the mean time my life has become about pain management. Despite the pain I went out dancing on both Friday and Saturday night and tonight I am visiting friends who live about 40 minutes away. All of this is made more difficult by the fact that my bladder hurts and I feel like I need to pee all the time. However, when I am in the restroom I have a difficult time actually peeing. Its damn annoying. I just don't want IC to run my life.

Here is how I am coping. I keep dancing. I am taking all my medications and supplements, I have smoked until I feel better. Though I realized I can't mix tramadol and smoking, because it makes me really anxious and paranoid. That was not fun. I have also used valium suppositories to try and get my pelvic floor muscles to relax. My bladder still hurts too, though not as much as if I hadn't been medicated. Right now I have horrible headache, which oddly enough keeps my mind off my bladder.

I hoping to feel better before the 11th, but I will still go see the doctor and do a DMSO treatment (providded I have the script still) just to make sure that my bladder stays happy. There is nothing that I can do sometimes to predict a flare up, after all I hadn't eaten anything new or been under new stress. Well, except that Monday would have been my 14th wedding/relationship anniversary and this year it will just be independence day. My ex-husband and I agreed not to talk on that day even though we remain friends.

This disease really does just suck sometimes. Okay, I am done bitching off to go live  my life.

Saturday, July 2, 2011

Random flares

So on Thursday night I was out dancing and I began to feel that all to familiar twinge in my urethra followed by a sore and weighty feeling in my bladder. By morning my bladder was in full "internal migraine" flare up. So I call my doctors office, the people I have relying on the past 18 months to keep me sane and healthy, and discover that my doctor is out of town till september. Now, I already knew that the owner of the practice was retiring and that there would be changes. But I still expected a better continuity of care. They referred me to another uro/gyno office but that doctor's office couldn't take me until August. So I called back to "my" office and tried to figure out what could be done. The one remaining doctor for the office is not scheduled to come in until July 11th, so I managed to score an appointment for that day. I then packed myself off to urgent care so that I rule out a UTI, which didn't exactly happen. I tested positive for nitrates but negative for leukocytes, so they put me on Bactrim and told me to call back for my culture in three days. I also got some tramadol and azo for the discomfort.


The pain comes and goes at present. I don't have too much urgency, just that pain and pressure in the bladder that only ends when I void. I am taking tramadol and inhaling ancient herbal remedies for pain. I made sure to get religion on my supplements as I had been a bit lax the last few weeks.  My hope is that this is a minor UTI and that they Bactrim knocks it out quick. I know I didn't stray from my IC diet or have any other reason to bring on a flare up (except for the not being good about supplements). But I also know that IC is a bitch of a disease that sometimes rears its ugly head for no reason.

Thursday, June 30, 2011

smoothies

I am so excited about my brunch this afternoon. I have decided to make myself a smoothie of vanilla almond milk, blackberries, and blueberries. I was drinking these a few months ago and then I suddenly stopped. Well, okay I ran out of fruit and kept forgetting to pick it up at the store. But today the smoothie makes a comeback! Hooray for something cool to drink on a hot day!

Dear reader, are there any smoothies that you make that don't irritate your IC? I am always looking for diet friendly foods.

Wednesday, June 29, 2011

staying active

Hello IC readers,

I have read on many of the IC boards that IC can make it difficult to stay active and get exercise. My own experience with this has been quite mixed. I lead a very active life. I swing dance ( aka Lindy Hop, a dance from the 1930's + 1940's) about five days a week. I have danced through flare ups but I find when I do that its difficult for me to focus on dancing. This could be because of the pain of the flare up is very distracting or because the pain medication doesn't exactly help me think clearly. Still, I persist because dancing lowers my stress level and keeps me happy. Having a lower stress level ultimately helps my IC.

However, I have found that dancing sometimes aggravates my IC. After some trial and error I have realized that if I don't have enough water while exercising, that my bladder starts to become unhappy. The solution seems simple, drink more water. But this is not without its challenges, the tap water at one of my favorite dance venues seems to irritate my bladder, other venues don't have easy access to water. I am now trying to make sure that I bring  a large bottle of water whenever I go dancing and that at the end of my evening I either a drink a large glass of water or a big cup of chamomile or peppermint tea. I have found this keeps me well hydrated and keeps my bladder happy.

Or course if a flare is bad enough, I usually don't go anywhere. This can be very frustrating and not just because of the flare but also because I hate the way IC interferes with my attempts to have a normal life.

I am wondering dear readers (if you are out there) how you cope with exercise and IC? Thoughts and feedback would be appreciated.

The Goose Girl

Monday, June 27, 2011

Eating in restuarants

I went out to dinner with a friend tonight. I love going out to eat with friends, as I am sure everyone else does. However, restaurant dining with IC can be a serious pain in the ass. Here is how I deal. I eat at diners. Almost exclusively. American food may not be fascinating, but its safe. I miss Chinese, Mexican, and Japanese food, but its not worth the risk and the possible pain. If anyone out there has ideas on how to eat at "ethnic" restaurants safely with IC, then please post a comment and share.

So tonight I went to dinner with my best friend of 20 years, "K". She ordered the chili topped with onions. It looked good  and smelled amazing. I ordered the salmon, cooked in butter, with plain baked potato and steamed veggies. When I order in restaurants I make sure to tell my server that I am on a medical diet. I ask about how everything is cooked, are the vegetables steamed in chicken broth (an IC no-no, because of the onion in broth). I usually remember to tell the server that I can't have any citrus, acids, or peppers. However, tonight I forgot about that last part and my salmon turned up with a big lemon wedge next to it. I was lucky though the lemon was just garnish and it had not actually touched my buttery little fish. But it was a reminder to be more careful when I order.

I am wondering my sisters (and brothers?) how do you make the IC diet work for you in restaurants?

Yours,
 The Goose Girl 

Saturday, June 25, 2011

Welcome to the IC sisterhood

Hello fellow IC fighters...I hope you are well and that your symptoms are manageable today. I have decided to start a blog about my IC to help other people like myself. I am doing this in part because my beloved Dr. Gina S. has, with my permission, been giving my phone number to other patients so that they can seek my perspective on dealing with IC. I guess I am a bit of a success story in that I am able to deal with and manage my symptoms.

When I first got sick with IC I was in the bathroom every 15 to 20 minutes or more. My urethra was irritated and felt like I constantly had to pee, all the time. It was agony. I hated it. I wanted to die. 18 months later and I am 80% symptom free. I am so thankful for Dr. Gina S. because without her I would have lost my damn mind.

I am keeping this first post short because I need to go paint the....wait for it..bathroom. That's right on my first post about IC, I am talking about painting the most used room in my home. The bathroom.

I look forward to using this blog to communicate with my fellow IC fighters (I don't suffer this disease, I fight it).  In the mean time I leave you all with a link to my favorite supplement, its helped me keep my bladder happy.

                                    Glucosamine & Chondroitin W/Quercetin & Bromelain

All the best,
The Goose Girl