IC Disease

Here’s another recipe to add to your IC friendly cookbook!  Try these burgers and remember to leave a comment on how they taste and how much you and your family liked them.

Spinach, Onion and Herb Burgers with Mozzarella

• 1 cup of fresh spinach leaves (not tougher stem parts), washed (cleaned) and finally chopped
• 1 lb of lean ground beef, chicken or turkey
• ½ cup white onion, finely sliced (use green onion if your bladder can’t tolerate white onion)
• Approximately ½ cup of dried bread crumbs (add a little at a time so that your mixture doesn’t get too dry)
• 3 tablespoons of cream cheese
• 3-4 tablespoons of  freshly chopped basil or 1 ½ tablespoons dried basil leaves
• lack pepper and salt to taste
• 4 hamburger buns or other buns of your choice
• Optional - mozzarella (or Monetary Jack, if you’re bladder can tolerate it) cheese to top

Any lettuce, vegetables and condiments that won’t affect your bladder

In a large mixing bowl, combine the spinach, onion and ground meat, stir well until combined. Add in the bread crumbs (leave out some if you think the mix is too dry, or add more if needed) followed by the cream cheese, basil leaves, salt and pepper; stir until the onion and spinach are well dispersed through the meat. 

Using your hands, on a dry clean surface or large plate for the meat mixture into 4 (or more, if you prefer smaller burgers) burger patties.

Cook the burgers over a medium flame on the grill (turning after 3 or so minutes) for a few minutes until browned and cooked through. Or lightly grease a large frying pan or indoor grill (I like to use Pam spray for this, but olive oil works nicely too) and cook the burgers over medium high heat for about 4-5 minutes per side (if you’re using beef the time may be less and for poultry you may need a couple more minutes).

Serve warm on your hamburger buns, topped with cheese if using. Garnish as desired. Any leftovers will keep, well covered, in the fridge for two days and are delicious eaten cold or crumbled over cooked pasta.

Makes 4 burgers (serves 2-4 people)

If you have ever wondered what an IC Disease bladder looks like, click on THIS LINK HERE to go to the Urology Channel website.  The bladder on the left is the IC Disease bladder.  Doesn’t that look painful?  What you see on this picture is what the urologist looks for when he examines the bladder during the cystocopy.  The urologist fills the bladder full of water, drains it, then fills it again and that is when the ulcers will be noticable. 

I have had a total of two of these outpatient operations done and the filling of the bladder to capacity is extremely painful when you wake up from the surgery.  Please make sure you take a look at the pictures on the Urology Channel.  If you didn’t have sympathy for IC patients before, this picture ought to do it!

Prelief is a popular method of treatment for IC Disease.  Prelief is a dietary supplement made of calcium glycerophosphate that is used to help neutralize acidic foods and drinks.  Basically, Prelief works by taking acid out of food.  One Prelief tablet will reduce the acid in a 6 oz. cup of coffee by approximately 95%.

Naturally, for IC Disease patients, acidic foods and drinks can cause IC symptoms to become worse.  In order for Prelief to be effective, it must be taken right before acidic foods or drinks are consumed. 

Prelief can be purchased in either tablets or in powder form.  If you use the tablets, you will need to take 2 tablets three times daily.  If you choose to use the powder form of Prelief, you will add two packets to each serving of acidic food or drink. 

Prelief can be purchased through a company called AkPharma, Inc.  To check out the prices and to order, click this link HERE. 

Shrimp is one of my favorite foods but the seasonings often used on shrimp are a big no no for Interstitial Cystitis patients.  Here is an IC friendly recipe for Shrimp & Broccoli Alfredo.

• 1 pound shrimp
• 1 package fettucine
• 3 garlic cloves
• 1/2 cup butter
• 8 oz. package of cream cheese
• 1 cup milk
• 1/2 cup shredded Parmesan cheese
• 1-10 oz. package frozen broccoli florets
• 1/2 teaspoon salt
• dash of black pepper

Saute shrimp and garlic in butter in skillet. Remove and keep warm. In the same skillet, combine the cream cheese, milk and Parmesan cheese. Cook until cheeses are melted. Place broccoli in saucepan with 1 inch of water. Bring to a boil. Cover and simmer for 6-8 minutes.
Stir broccoli, shrimp, salt, and pepper into cheese.

I am finding that the more active I am the more my IC symptoms act up.  When I am at work and I have to do a job where I am sent walking all over the store several times throughout my shift, I find that my urinary frequency increases tremendously.  Yesterday at work I was supposed to be a cashier, which I was, but I was also sent hourly around the store to make sure there weren’t any messes.  Each time I would make it about half way around and I would feel the need to urinate hit me suddenly and that familiar pain in my bladder returned. 

As long as I am standing and not moving too much at work, I’m fine and I can usually make it to my break without needing the bathroom.  It’s when I have to more around a lot that the problems begin.  I don’t discuss my disabilities, however, at work because I don’t want to be labeled as I have been in the past.  There is a stereotype that disabled or chronically ill people can’t ever do anything or don’t ever try to do anything and if they know all of my problems, they might be harder on me.  I’ve been down that route and I won’t let that happen ever again.  As long as I can keep a handle on the situation, I’ll continue.  If things start to get too rough physically I’ll just have to quit.

While this clinical trial is not currently open for enrollment, keep your eyes open for future news on researchers looking for study participants.  This clinical trial (ClinicalTrials.gov Identifier: NCT00823030) is to determine the amount of improvement in bladder function and pain relief with the administration of 2% alkalinized lidocaine in IC Disease patients.

Once researchers start actively recruiting IC Disease patients, they would like to have approximately 40 patients to properly complete their clincial trial.  This trial is sponsored by the North Shore Long Island Jewish Health System.

Inclusion Criteria:

• Male & female patients ages 18 - 80
• Must have a clinical diagnosis of IC Disease based on the National Institute of Diabetes, Digestive and Kidney Diseases (NIDKK) criteria.
• Written informed consent
• Able to understand and complete a VAS/GRA/modified IPSS assessment

Exclusion Criteria:

• Having a severely disabling concurrent medical condition
• A history of pelvic radiation therapy, tuberculous cystitis, neurologic disease affecting bladder function, bladder cancer, or carcinoma in situ, or urethral cancer
• Evidence of urethritis
• An allergy to lidocaine

Contact Information:

For further information on this clinical trial and to find out when researchers will be recruiting patients, contact:

• Amin S Herati, BA
  516-734-8570
  aherati@gmail.com

Yes, even IC Disease patients can eat Mexican because contrary to popular belief, not all Mexican food is hot.  Check out this recipe!  Sounds yummy!

Puree for Thickening:

1 1/4 cup water
1/4 cup Vidalia or Maui onions, diced
3/4 cup baking potatoes, diced
1/3 cup carrots, peeled and diced
1/4 cup celery, diced or 1/4 cup frozen peas
1 garlic clove, sliced

Puree Directions:

Add the water for puree to a medium saucepan and bring to a boil. Rinse diced onions in a sieve under cold running water (to help remove sulfur acids). Add onions and remaining vegetables for the puree. When mixture returns to a boil, reduce heat to a simmer, cover and cook 20 minutes. Let cool slightly then puree in a blender or food processor until smooth. (Can be frozen for later use at this point.) You can make the soup while you let the puree cool a bit.

Soup:

2 1/2 cups beef broth, additive-free (Health Valley makes a good brand)
1/2 cup water
2 tablespoons sherry
1 bay leaf
1/4 tsp. dried parsley
1 lb. lean ground beef
1 egg
1/4 tsp. black pepper (optional)
2 tablespoons fresh mint leaves, chopped fine
1/2 cup green onion, chopped
all-purpose flour
vegetable oil
1/3 cup uncooked white rice
salt to taste

Soup Directions:

In a large saucepan combine the beef broth for the soup, water, sherry, bay leaf, and parsley. Place soup over medium heat and simmer. Add the puree. In a bowl combine the ground beef, egg, pepper, mint, and green onion for the meatballs. Mix meatball ingredients well. Pour a bit of oil into a skillet and heat. Form meatballs about 1-1/4 inches across. Roll meatballs in flour to lightly coat, and fry in oil until browned. As batches of meatballs are done, drop into hot simmering soup.

In the hot skillet you used to fry the meatballs, fry rice in a little oil until rice becomes white and opaque and some grains turn golden. Stir while cooking, scraping up browned bits. Drop rice into hot soup. Cover and simmer soup until rice is tender, about 25 minutes. Add salt to taste. Add water or beef broth as needed if too much has boiled off. Remove bay leaf and serve.

It is estimated that approximately 10% of all Interstitial Cystitis patients do not respond to conservative medical treatments.  For these patients, supratrigonal cystectomy and bladder enlargement enterocystoplasty has been used.  To evaulate the results of using this form of treatment, researchers evaluated the results from the patients that had this surgical procedure to treat their IC Disease.

Included in this study, 15 patients underwent the supratrigonal cystectomy and bladder enlargement enterocystoplasty between 1999 and 2006. All patients’ symptoms were reported along with other medical treatments they had tried. All of the patients’ bladder capacities were also measured.

Out of the 15 patients surveyed, 13 had found their urinary frequency due to IC Disease had improved and 11 said they had improvement in pain. 

Source

Here are some more clinical trials currently recruiting IC Disease patients.  Please make sure you read all of the inclusion and exclusion information and don’t get involved in one without first consulting your physician.

Catheter Analgesia Trial

The purpose of this clinical trial is to compare the utility of phenazopyridine HCl vs. placebo in reducing catheter-associated discomfort during the post-operative period in the gynecologic patient using mean VAS measurments.

Genetic Studies In IC Disease

The purpose of this clinical trial is to determine whether or not IC Disease is an inherited disease. The study will include IC Disease patients and their family members.

Linkage Analysis In IC Disease

The purpose of this clinical trial is to understand the basis of IC Disease and like conditions and to study symptoms and the disease as a whole.

Diagnostic Challenges for Male IC & CPPS Patients

The purpose of this study is to determine whether there is a link between IC Disease in men and CPPS (chronic prostatitis/chronic pelvic pain syndrome).

It has recently been reported on the Doctor’s Channel that intravesical chondroitin may relieve symptoms of IC Disease.   These results were gathered through a small study that found that intravesical chondroitin sulfate is an effective and safe treatment method for SOME IC patients. 

Chondroitin sulphate is what makes up the mucus layer of the bladder.  It is believed that through prior research, that changes in the chondroitin in the bladder may play a role in the workings of IC Disease. 

The study of intravesical chondroitin took place in Canada and there were approximately 53 study participants who received intravesical infusions of chondroitin, weekly for 6 weeks and then monthly for 16 weeks. All of these participants had severe IC Disease and had been sick an average of 9 years.

The outcome of the study:

The main outcome measure — treatment response — was defined as a moderate or marked improvement on the 7-point Global Response Assessment at week 10. The Patient Symptom/Problem Index was also used to assess the response to chondroitin.

At week 10, 47.2% of subjects were treatment responders. By 24 weeks, the latest follow-up point, the response rate had climbed to 60.4%. Significant improvements in symptom scores were also noted at 10 and 24 weeks.

No significant adverse effects were noted during the study and the treatment was generally tolerable, the report indicates.