Just Diagnosed

[Little Sunshine]

Hi, I was just diagnosed with IC this past Friday. I've been pretty sick for two months and my primary care doctor had been treating me for a UTI that wasn't going away. I was finally sent to a urologist and diagnosed with IC. I'm feeling lost and confused with all of the information that's out there. I have my follow up with my urologist next Monday....which feels like a lifetime away. I guess he wants to wait to see me until he gets the results of my biopsy back. Up until getting sick in January....food and exercise were my life. I enjoyed Indian and Thai food, washed down with a tasty beer from time to time. I spent at least an hour a day in the gym doing fairly intense cardio and weight training to prepare myself for the summer hiking season. I guess I am looking for support and perspective. I fear that I am going to have to give up all of the things that I love and I wonder what will come of my life. I haven't been able to take part in any of the activities that define me and fuel my soul. I have been spending a lot of time in bed in excruciating pain, feeling like I'm going to wet my pants at any time. I feel like my life is slowly falling apart and I'm too brave to sit back and watch that happen. Does anyone have any suggestions to offer me as to how they were able to cope with this diagnoses at first? Any ideas are welcome! Thanks for reading.

[earthlady]

just diagnosed

I wish I had some good suggestions but I am in the same place you are right now and am not sure how I will be coping with all these changes either. It looks like an overwhelming adjustment in lifestyle but I keep telling myself that eventually most people seem to find a way to work with all of this. I wanted to reply to let you know you are not alone with how you are feeling right now. I haven't been officially diagnosed with IC/PBS yet but I have all the symptoms, and according to the new AUA guidelines I most probably will get a diagnosis very soon.

[Linda May]

Ic is a life adjustment disease, every Icer is different though you may have to give up on some things but not all. Maybe your uro will find the right treatment plan for you. In the meantime you should stick to the IC diet with a passion don't cheat, believe me I know. The one of many things I miss is my coffee. The main thing right now is to get your pain under control, we all know what you are going through. I wish you the best, let us know how things turn out.

[Little Sunshine]

Earth Lady and Linda May, Thank you for your thoughts. I never was a coffee drinker...but have missed my daily cup of chai tea. I have always been a person that has appreciated the simple things in life...right now, I just feel as if those things are being taken away from me too. I haven't yet been able to figure out if there is a way to respond to each person individually! I am still working on my computing skills! Earth Lady..I hope you get the answers you are looking for. I wouldn't wish the feeling I have upon anyone. But please, keep your head up! Linda May, I have already started with the IC diet and promise to do my best to not cheat. I have such a weakness for food. Thank you for your support. I offer you the same in return. I think it's hard for the outsider, looking in...to understand this. I wish that no one had to be here, but if we do, I guess it's better to be in good company.

[earthlady]

Little Sunshine - I have found that I can have a small amount of Chai tea if I use a lot of almond milk with it. I don't mean to get you to stray from the diet but we are all so different in what we can tolerate - although finding out what I can tolerate has brought me to some pretty painful nights unfortunately. Not sure I would recommend that to anyone but I thought-well how else will I know what I can drink? I also was used to being very active and eating a variety of foods including spicy Thai and Indian, so I don't know how I will be able to get through eating such a limited diet. Exotic food and cooking was one of my most enjoyable pleasures. sigh-------

[Little Sunshine]

Earth Lady, Thanks for your response. I did go to the store and stock up on almond milk. I too am having a really hard time with this diet thing. I have been a vegetarian for nearly 16 years....and the no soy/tofu thing is killing me, as that was the basis of my diet. I am also having a very hard time determining what is irritating me and what isn't, as I am just in constant pain. My urologist had't officially diagnosed me until today...after my surgery he had my husband tell me I had IC when I came out of it...then couldn't see me for a week. Today he handed me a packet on IC and was ready to push me out the door without so much as a flinch. He wants to start me on that medication...the one for IC...I can't even think of the name of it. Needless to say, I'm terrified of it. I am sorry to hear that you miss cooking so much. I was never a cook, so that part is easy for me! But I have always loved food and that is changing for me. Now, meal time is sacry time, especially when people around me are eating things that I can't. Without coffe dates, pizza dates and beer dates with my friends...my social life sucks. Anyhow, enough venting for now. I hope you are hanging in there and having a good day. I will be dreaming of the day there's a cure. May we both enjoy a good Indian meal then!

[earthlady]

I also used a lot of soy- including soy yogurt. I don't think soy bothers me but I haven't gotten around to really testing this yet. Your lucky though that your dr. has actually diagnosed you now. Mine is still looking at other things even though I have all the classic symptoms- and come on what else could it be? No infection, pelvic floor spasms have been eliminated, haven't had any pelvic surgeries and no prolapsed anything! Not much left to be causing these symptoms except the dang bladder! I keep reminding myself that it may not be as bad as I am anticipating or dreading. A lot of people on here are able to eat some things on the diet list and still be ok. Especially after the bladder has calmed down a lot. A non or low acid decaf coffee might be ok later on. I know what you mean though about the socializing. A friend of mine was here this afternoon and had to make him regular tea, while I sat here with my mint tea. Whoo Hoo!

[earthlady]

Forgot to mention- I have been asking every restaurant I go to if they have low acid decaf coffee and no one has this available! How rude, and why don't they????

[carlaincalif]

Little Sunshine - Hang in there....It wasn't that long ago that I was walking in your shoes. My life was full of physical activities that came to a skreeching halt when IC hit me. The doctor told me to have patience....not want you want to hear when you are in pain and so uncomfortable. That being said, I started an aggressive plan to get my life back. That plan included finding the right doctor, trying different meds and following the diet. This was just a very short four months ago and now, I am back to doing most of the things that I was unable to do prior to my diagnosis. There are days every now and then that the discomfort rears it's ugly head, but for the most part, I am back and you will be too!

[Little Sunshine]

Earth Lady, I hope you don't have IC...but in the event that you do, I hope you get diagnosed soon. I have been pushed around a lot by the doctors in my town over the years. I have chronic back pain as well. The most important thing to remember is that YOU know how your body is feeling....not them. Most of the doctors we see can only imagine the amount of pain we are in. I regret not having someone come to my appointments with me, because it is A LOT of information to take in at an already scary and confusing time. I have always been the type to put on a brave face and do things for myself. I have to admit that this IC thing has taken away that brave look and reduced me to tears at least once a day! When you go to your doctor remember that you have a voice. The most important thing is to let that voice be heard. Don't leave the office with unanswered questions. I thought my appointment yesterday would bring me more comfort with the situation. I think it actually upset me more. I hope your doctor is better than mine! Anyhow, best of luck. Keep me posted. I know....mint tea....does life get anymore exciting than that? LOL.

[Little Sunshine]

carlaincalif, Thanks for your reassuring words. Can I ask you what treatment plan it is that finally began to work for you? My doctor prescribed Elmiron and then some anti depressant to help with the pain and frequency. Honestly, I am terriefied to take either. The Elmiron has some pretty crazy side effects (don't all medications). But the last thing I want after all of this is to take Elmiron and risk losing my hair. I feel like I am stuck between a rock and a hard palce, but your story gives me hope. Thanks so much for sharing. I hope it's only a few more months before I get my life back too! Good luck and stay healthy!

[earthlady]

I'm getting the feeling that there are quite a few drs. out there who are still going by the outdated guidelines for diagnosing. Maybe I should fax them all the current AUA guidelines?? This is my 3rd doctor and have just seen him once so far, and will see him again next week. I guess I will give him some slack until I see what he comes up with- The Better Bladder Book has a list of some very good teas that are good for the bladder you might want to look at. Only trouble is I made some chamomile tea for me and friends one evening and we all fell asleep watching a movie!!! Don't ever serve chamomile tea for a social evening! Unless of course you are prepared for overnight guests. lol

[cmclien]

Elmiron

My doctor prescribed Elmiron and then some anti depressant to help with the pain and frequency. Honestly, I am terriefied to take either. The Elmiron has some pretty crazy side effects (don't all medications). But the last thing I want after all of this is to take Elmiron and risk losing my hair. I feel like I am stuck between a rock and a hard palce, but your story gives me hope.

Hi little sunshine!

Just wanted to let you know I started the elmiron March 1st and have had almost no side effects. The biggest one is stomach upset. You can empty the capsule into a glass of water or I just take mine with pepcid or omeprazole and then I have no stomach upset. Some people get diarrhea with it but i haven't. If you do get diarrhea then increase your calcium intake. I hear you on the hair loss but its only about 4% of people that experience it which is very low. Odds are good you wouldn't be one of them. I have long hair myself and would be horrified. If you are going to lose hair it will happen within the first month and would not be all over your head but in a patch and will grow back if you lesson the dose or discontinue alltogether. Its not permanant.
I decided it was worth the risk and after only 3 weeks of being on it I can tell its working. I had pizza with goat cheese on it today and a salad with balsamic though I didn't eat the tomatoes. It didn't bother me at all! I was thrilled. My IC is mild so maybe thats why its working so fast. The manufacturer says it usually works within 4 weeks to 3 months. I put off taking it for awhile too but am so glad I finally started.

I tried taking the antidepressants for awhile. Found amitriptyline too sedating so started taking noritriptyline which was much better but then I developed hives so now I can't take that class of drugs at all. Just remember everyone experiences meds differently and until you try you won't know and they just might help you!

Good luck!

[Little Sunshine]

Earth Lady, I hear ya about the Chamomile tea! Probably not best served when you are trying to entertain people. My urologist was pretty on top of my condition...after ruling out other things such as kidney stones and stuff like that. My primary care doctor, I'm convinced would have fed me antibiotics for the rest of my life if I hadn't spoke up and insisted that I thought something else was wrong. I think a lot of the problem is that people just aren't educated enough of the topic....which is sad. Anyhow, keep me posted on any new developements in your story. Yesterday marked a week since I had my bladder distention. I have to say that I have been following the IC diet and believe that the irritation from the distention has finally started calming down a bit. Yesterday, I was finally able to work for the first time in two months. I never thought I'd be so excited to be back at work. Though I did have to drop some of my classess....and being a full time student was more or less my job. Guess it wasn't meant to be for the time being. I hope you are feeling well today and that the sun is shining in your corner of the world.

[Little Sunshine]

Cindy, Thanks for your words of wisdom. I think I decided I need to bite the bullet and at least try the Elmiron. And hope I don't become one of those 4% that lose my hair! If you take your medication with Pepcid...is that safe for the bladder? I guess I am confused as to what vitamins and OTC meds are safe for us ICers to take. There is just so much to take in. I am like you with the anti depressants in that I don't respond well to them. In most people they are too sedating, but in me, it's the opposite...I become hyperactive. That's the worse feeling for a girl that already has chronic insomnia! Does the Elmiron help with your urgency and frequency at all, or is that a different drug? I think my biggest problems are urgency, frequency and pressure. I wondered if the Elmiron helped with any of that. I am so happy to hear that you are able to eat some of the things you enjoy. That definitely gives me hope. I feel better than I did a week ago and well, for right now, I have to be grateful for that. I am also wondering if there are any OTC meds that you find helpful in treating this...I have heard of Prelief. I tried 2 drug stores and couldn't find it. Any info you have to share would be great! Thanks.