It sounds like you have an informed doctor with whom you communicate well. That's GREAT!!! It is tremendously important to work with a physician who is up-to-date in their knowledge of IC and all the treatment options now available. Unfortunately, there are still a lot of uninformed doctors out there who know nothing about IC (including some urologists). There are even some doctors out there who don't believe IC is real and that it is a psychosomatic syndrome. IC has been recognized for over 200 years, but not much research was done until the last 15 years or so. Why? One reason is 90% of those suffering from IC are women (though many now believe chronic non-bacterial prostatitis in men is actually IC). It was considered an "hysterical" condition of women and not worth researching. Recent research has given us lots of scientific proof of IC and people who have suffered because they were told "it's all in your head" are now winning malpractice lawsuits. Still, there are many doctors out there who were not educated about IC and it is going to take time for those doctors to get up to speed.
Researchers are beginning to make progress. We still do not understand the cause of IC, but we are beginning to discover some clues. There is a great deal of reason for hope that the elusive cause will be found and will lead to a cure or better treatment options.
I'm glad you found the Interstitial Cystitis Network on the web. The information and support there will be of tremendous value to you. Another source of information is the Interstitial Cystitis Association.
It often takes a combination of meds and or treatments to bring a measure of relief for IC patients. Some doctors, apparently like yours, like to begin IC patients on one med at a time to see how that med works for that individual. Other doctors use a "shotgun" approach.....throw all the big meds known to help at once to try and bring relief as quickly as possible and then go back and evaluate what is helping and what isn't later. It's a matter of each doctor's preference. One thing you might want to ask your doctor about is Elmiron and whether it might be right for you. It's the only FDA-approved med specifically for IC. It works wonders for some and not for others and only by trying it will you know if it works for you. Especially considering you are also dealing with Crohn's, only a medical professional can tell you whether or not it is right for you to try. You might want to ask about it at your next appointment, however. The reason to ask about this now is it takes anywhere from 3-12 months before patients see the full benefits of it (it helps me a great deal, but took 9 mos before it really kicked in for me).
Since you have found the ICN, you surely have seen the detailed IC diet. It is far more than just cutting out a few fruits (all fruits are no-nos in the beginning except pears, blueberries and some can tolerate a little honeydew melon, banana or mild Gala apples) and acidic foods. No tomato also means no tomato products at all---no sauces, no juice, no salsa...not even ketchup. No acidic drinks means no coffee, no tea (including green tea and most herbal teas), no fruit juices except citric acid-free pure pear juice or blueberry juice, no soda & absolutely no alcohol. Especially when first diagnosed and trying to figure out your personal dietary triggers, the only thing you should be drinking (other than the 2 juices mentioned above) is bottled spring water (city tap water contains chlorine which can really irritate an IC bladder) and milk (IF you can tolerate dairy with IBD). Also, Dasani and a couple of other brands of bottled water add mineral paks to improve the taste. Those added minerals have the potential to irritate a wounded bladder and it is best to avoid these and stick with natural (nothing added) spring water. Following the diet also means no strong spices, no artificial sweeteners, no aged cheeses, no preservatives, no artificial colors, no artificial flavors, no nitrites/nitrates, no chocolate, no MSG, no caffeine, no soy or soy products like soy sauce, soy flour or tofu (very acidic), no fermented or smoked foods, no marinated foods, no mayonnaise (has vinegar), no salad dressings with vinegar or tomato, no mustard and nothing containing, ascorbic acid, sulfites, autolyzed yeast, meat tenderizer, vinegar, worcestershire sauce.........etc, etc, etc. You really have to read food labels carefully and cook most things from scratch to be sure no problem ingredients are included. It's difficult to give up so many favorites foods and drinks, but I assure you it is worth it to reduce your pain! You start out eating only foods from the usually ok column of the diet list. That gives your bladder a very soothing environment which will help the inflammation decrease. After a couple of months and once you start to feel better, you can add in new foods from the "may be ok" column. You need to do it one thing at a time so you can tell if your bladder tolerates the new food or not. If you don't see an increase in symptoms with a new food, you can add that food back into your diet. It takes awhile to go through the whole process, but only by doing so can you determine what foods your bladder will tolerate and what foods trigger bladder symptoms. Everyone is a little different in their reactions to foods, so everyone has to go through this process. It sounds hard, but I assure you it does get easier. Your diet is limited in the beginning, but will expand as you learn what is safe for you and what you must avoid. For the vast majority of ICers, what we eat has a huge impact on our symptoms and following the diet (and learning our own personal triggers) is well worth the effort. I understand how difficult it is to accept these diet limitations. I,too, was into fine dining and fine wines. It took me quite awhile to come to terms with it and accept the fact I had to follow this if I wanted to reduce my pain and other symptoms and reduce the risk of doing further damage to my bladder lining. It is an entire change of lifestyle, a pretty bitter pill to swallow. Try to think of it as temporary, not permanent. As you go through the discovery process you will surely find there are more foods you can tolerate than in the beginning and it gets quite a bit easier to handle.
In other tips, have you tried using heat? My heating pad is my best friend when I am flaring. Other people find cold helps them and use ice packs when the pain is bad. You might want to try both and see if either one helps you. If heat helps, you can use stick-on heating pads while working, riding in a car or traveling. Is sitting painful for you? Try sitting on a pillow. Special seat cushions designed for the needs of people with IC are also available. Does riding in a car with all that vibration from the road and the engine bother you? If so, try sitting on a memory foam pillow. It can help to absorb some of those irritating vibrations.
Hope I have given you a few helpful hints. I understand what you are going through right now. Please do remember that, though it may take some time, the vast majority of people with IC do find meds and treatments that help them and they can go on to live fairly normal and happy lives. And also remember.......remission CAN happen. I haven't reached it yet, but I am still working on it and maintain hope I will get there. Even though I am not in remission, I have found a combination of meds that helps me and, other than having to follow the diet and rest when flaring, I lead a pretty normal life. I travel and enjoy life. I've learned what foods I can tolerate and can now usually find something on a menu my bladder will tolerate so eating out is not impossible.
I sincerely hope you will quickly find relief........and then a very LONG (forever would be good) remission!!!
Second, I am sorry I don't have any experience with the actual diagnosis, I do have the sypmtoms of this disease. Last, I would like to be with you during this, so I am in for the long haul....
!!
I have had interstitial cystitis for 6 years now. Additionally, I have ulcerative colitis and pelvic floor dysfunction. I hope the amitriptyline (elavil) helps you. There are MANY other meds and treatments available for IC patients. Has your doctor started you on Elmiron (the only FDA approved oral medication specifically for IC)??? Atarax? Prosed, pyridium, urelle or any bladder analgesic?...........the list of possible helpful meds goes on and on.
