Here's a copy of an email that I sent to another patient on IC and IBS and, looking back at it, I think it's worth resharing with you.
Hi (name removed)
I got your long message about the IC and IBS... and the first thing I want to say is that YOU ARE NOT ALONE! Knowing what I know today, if I could go back in time to your age.. this is what I would want to know
1. This is NOT your fault. You have done nothing wrong nor do you deserve this. Please don't blame yourself. In many cases, this occurs after an accident, injury or illness.
2. Look at doctors as allies not as enemies. You will need to talk with doctors and their nurses on occasion.. and, honestly, they are there to help you. That's why they studied medicine. The challenge is that you are still fairly young and I can see some talking down to you. You need to remember that you are an equal partner in your medical care. Walk in prepared with questions and be willing to say "I don't understand what you mean" if you don't.
3. Your knowledge level is important especially BECAUSE of your age. It's important that you take the time to educate yourself about your anatomy, your medical conditions and potential treatments. This means that reading books is vital!!! Not just the web or blogs, but real, credible books written by experts like the IC Survival Guide by Robert Moldwin MD. I found the book First Year IBS by Heather Van Vorous very helpful. It taught me how to eat correctly without triggering an IBS attack (i.e like when going out on a date) and how to manage those symptoms. You can find both of those on our website at:
http://www.icnsales.com
4. I'm going to bet that "sensitive" is your middle name. Sensitivity is a common thread among IC and IBS patients. Both conditions involve nerves that have become sensitive. In IC, it's the nerves that control frequency/urgency and pain. In IBS, it's the nerves that control how food moves through your gut. And, yes, even anxiety is a sensitivity... it's a sensitivity to adrenaline. You might also have a very sensitive sense of smell, sensitive skin and so on.
So... part of the work that you've got to do is to try to figure out what things "trigger" your sensitivities. For example, my IBS got really bad in my 20's and, as I said in my blog, it was the chocolate and the oatmeal that was causing most of my problems. For my bladder, it was a lot of the junk food I was eating. For my vulvodynia, it was often the soaps or laundry detergents that I was using. I even broke out in rashes from using body lotions. So.. I think it's important that rather than fighting the sensitivity, that you study it and learn what your body likes or doesn't like.
5. Anxiety is a strongly related condition to IC and, as such, it's important that you not ignore it. Look for a class at a local hospital or medical center on anxiety and stress management and take it. Of anything I can offer to you, this is what I would have done differently. I waited until I was in my 30's to take a class and suffered unnceessarily for years. In just six hours, I learned how to control an anxiety attack, put it into perspective and take control of it. This totally changed my life for the better!!!!! Please do this as soon as you can if you feel that anxiety is controlling or limiting your life in any way. It's amazing how good it feels once you've learned the skills. Instead of feeling overwhelming, anxiety becomes completely managable!
6. Ask for help if you feel overwhelmed. I think meeting with your social worker or a counselor is a great idea. You don't have to do this alone. There are people who can and want to help you. Just have to open the door and let them in. You could ask your social worker to make a recommendation on a family or youth counselor.. or even someone who might specialize in anxiety management. Sometimes it's just great to lean on someone else and share the burden for a while.
You can do this!!!! The best part is that, unlike when I was your age, there is ALOT of good information and support out there for you.
And, remember the golden rule, always talk with your doctor if there is anything worrying you about your IC. I don't and can't give medical advice. It's your doctor, the person who sees you in person, talks with you and knows your history, that is best qualified to give you any medical advice regarding your IC treatments, etc.
Hugs,
Jill O.
