How do you cope?

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

For those of you diet sensitive, how do you cope with making the changes?

For those of you that have pain, how do you be intimate?

How do you exercise when you have frequency issues through the roof?

I am having a hard time coping and adjusting with this IC diagnosis. I am taking prelief before every meal now. I am waiting on Aloe from Desert Harvest. I can't exercise because the high impact things I love (running) and I get so bored on the bike or ellipse machine. I can do some weight lifting as long as I don't do too much with my core. I can't swim either. That floating feeling isn't good on my bladder urge. I have to keep getting out so often that I can't do it. Yoga/pilates is boring too. I guess I shouldn't whine about it. I know I'm not alone in this. I just miss exercise (running specifically). I feel tired, soft, and moody without it. I don't sleep well with IC and now I sleep worse (when I actually fall asleep) due to the lack of activity. I should just suck it up and do something boring, but I love exercise so much I don't want it to become a chore...

I am starting the treatments (bladder instillations, Atarax, Elmiron and Ultram 3x/day). The Ultram works the best at this point, but I don't want to build up tolerance. As soon as I start to notice an improvement, I won't take it morning/afternoon. Like I said, I'm waiting on the aloe vera gelcaps. I am taking baths (as long as I'm not having hot flashes, from the Elmiron).

How do you guys cope? What can I do to adjust to the diet? (eliminating the triggers... if I can ID them eventually). 80% of my favorite foods are on the avoid list.

Please, guide me! I really feel lost and need some help!

I did buy the IC handbook (beginner's kit actually). It should be here in a week or so!

[Berkshire Road ICN Member Find all posts View Profile Close Berkshire Road]

How do you cope? You cry, you mourn, you rage at the fates -- and then you get on with it. Because that's your only option. And you try to hold hope in your heart that your treatments will be effective and you will be able to return to the activities that you love.

On a more practical level, you do the diet (it's hard!) by looking at the cup of coffee, or chocolate ice cream, or spicy salsa, or whatever it is -- and then think about the level of pain it can cause you, and you make your choice. You find things to do that are more sedentary, at least for this time while you are just starting your treatments. If you're very lucky, you have family and friends around who can support you, who are willing to join you in more restricted activities for the time being. You learn every single thing you can learn about IC, so you will be aware of other treatment possibilities, new options, realistic expectations. You join in the hope for a cure by making a donation, however small, to the ICN or ICA to help fund ongoing research. You count your blessings: You don't have a fatal condition, you have other things in your life that are good, whatever -- only you know in what ways you are particularly blessed.

And then, sometimes, when the load just seems to heavy and the future too uncertain, you just howl at the moon. Then you boot up your computer and come here, where you will find an unlimited pool of understanding and sympathy. And here you discover that Amy is a rock of genuine compassion and a fount of practical suggestions; that Trishann is the wisest woman you'll ever have the privelege to encounter; that Erika has a sparkling sense of humor, and that there are 15,000 other members, each with something to offer. And, eventually, although you still mourn for what IC has taken away, you begin to marvel at what it has brought you.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Carolyn,

Thank you so much for your heartfelt reply. It meant so much to me (I'm having a rough night and my best friend is now obsessed with her new boyfriend that she could care less about my suffering and need for help. I have a 2 hour drive tomorrow (each way) and she said "I'll be up all night tonight because ____ will be back tonight [after being away for 3 days]. I won't get any sleep [will have sex all night] so I can't drive you even though I want to help you". I live in a state with no family and I'm in college so all my friends went home for the summer. I'm alone right now and don't have anyone to help me. I guess it is preparing me for a move to a new city next month where I know nobody. Sorry to get off topic. I guess I'm feeling so alone with this IC and don't have anyone to lean on for support (my dad is great over the phone, but sometimes I wish he was close by to help me out).

The dreaded IC diet. I do have a hard time with the diet. I need to begin thinking "is it worth the pain and incessant need to urinate" when I see possible trigger foods. I am hoping that I start changing my thinking. In part it is also due to the stage where I have to find triggers. I think, "Is chocolate REALLY going to give me trouble? Well... it did last week, maybe that was a fluke and not chocolate... maybe it was something else". Now I know after my chocolate today that it was the culprit. I know tea is torturous and a multi-vitamin like Centrum is off-limits. I know that tylenol is bad news.

I just got the IC newbie kit from this site and got some mild teas (blueberry and peppermint) to see if I can tolerate that at least. I am trying to learn what works and doesn't work for my body... but that trial and error part is so hard.

Thank you so much for letting me use this board to get advice, information and meet others that can relate and guide me with their experiences (with their painful stories and flares and how they control them). Thank you! I do mourn at how IC has taken joy from my life right now. I struggled with obesity and lost over 145 pounds and within a few months of losing that weight, I developed IC symptoms and have been living in this circle of hell since then (since Nov. 06). I lost all this weight, was feeling great, training for my first half-marathon, and then IC hits me down from cloud 9. I am so upset I could cry sometimes, other times I am frustrated beyond belief. I spend so much time online reading about IC, posts, diet recommendations, etc. It helps to learn about it, but I feel like I'm consumed by this disease. I know I'm in the "newly diagnosed" stage, but it is so overwhelming!

Again, thank you so much for you support and advice!

[RobinD ICN Member Find all posts View Profile Close RobinD]

Berkshire, you said it all. I am going to print off what you wrote so beautifully and put it on my fridge as a reminder.

Thank you
Robin

[leelee88 Support Volunteer Find all posts View Profile Close leelee88]

Yes I agree very good Carolyn you nailed it..

Another the big thing is take one day at a time.. If you dwell on things in the future it just makes things worse...

[littlemyrn ICN Member Find all posts View Profile Close littlemyrn]

I think all the replies made are excellent!!I wish you were in my town, I would love to adopt a college kid and we could sit on the couch with our heating pads and watch movies. It is hard to limit your activity sometimes, but just do what feels right, your body will let you know if you are doing too much. Somedays, I can work out in my yard and feel great and then others, no way and like Carolyn said Amy (ihurtoo) is great support. I got a chance to meet her in person and she is so sweet and caring and has been through so much and still smiles. Please pm if you are feeling down she will lift your spirts. Marilyn

[Berkshire Road ICN Member Find all posts View Profile Close Berkshire Road]

Born2Swim, PM me any time. I'll give you my phone number, if it would help you to have someone you can call when you get overwhelmed.

Everything I said in my first response was true, but it takes time, honey. Right now you're still in the mourning stage, and I just wanted to let you know that it doesn't last forever.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Briza, I know you guys say it takes time... but in the beginning, while finding the triggers, limiting my activities, playing with the best med treatment all takes time and patience. I am fortunate they diagnosed me so quickly (almost 6 months doesn't seem fast to my friends and family... but compared to what some of you guys have been through, I'm lucky with that respect).

I hear what you mean about everything being irritating. I can tell a slight worsening with chocolate and tylenol right now, but you are right. Every day is irritating right now. I will try my best to stick to the diet, to give my bladder the greatest chance for a quick recovery. It is so hard, but I know that I'm preaching to the choir!

You are so lucky that you can hit the beach! I am moving to a city closer to the beach, but I doubt I will go often (I'm starting a one year masters program then med school and won't have the time because campus is pretty far from the beach). I just hope my symptoms improve enough that I can do the pool soon, at least to start me back into exercise.

I know there are worse things to deal with (cancer - my mom died from ovarian cancer) and endometriosis (I know many people with that, some infertile now, others with several major surgeries to remove colon and female organs). I know this is a terrible disease but it could certainly be worse. I am hoping that they got to my disease early (I only had these symptoms for a few months) and that long term success is good, if we can get the right treatment combo. I try to remind myself of that, but when I am in a flare, turning down invitations to go out with friends or can't even go to the grocery store or hit the gym, let alone classes, it really depresses me. I am so glad I have you guys on this site! My doctor recommended I check this group out (and the books/diet help) and boy it has made a huge difference in my coping/acceptance!

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Marilyn,
It would be nice to have a heating pad buddy on these terrible nights! I don't really know anyone with IC, so it would be so nice to sit and chat about it. I would also love to have someone teach me how to cook! My dad showed me some of his signature things, but I need some IC friendly things besides eggs! I need to bring out my crockpot and try some things in there.

My body tells me to sit down pretty much all the time. I have a rare ok day where I can get things done (like packing... I move in a couple of weeks for my masters program).

I will definately save this thread (print it off too) for inspiration and support for the rough times like tonight!

Thank you so much!

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Briza,
Well, you know, my IC started when I was studying for the MCAT (medical college entrance exam). I had been studying for a few months, then it came on pretty hard when my period came up in November. I thought it was period issues because it pretty much went away (minor frequency problem, but I thought it was going away). Same flare in December with my period. Oh man! The plane ride to visit my family was terrible! I had to sit in my seat for 45 minutes before they took off the seat belt light. I was crying, thought I'd throw up to do the pelvic pain/pressure and urge to urinate. It was terrible. BTW, I got a restroom card from the ICN shop. The frequency didn't really go away after my December period and January was the worst. I actually went to the ER after taking some Tylenol 3 due to the pain. That was 3 days before the med school entrance exam. Needless to say, I was not in good shape for it, but I did alright. I think my doctors were hoping it was stress due to the exam (hence the OAB meds and little testing)... but after the test (a month after) they thought, well, lets do some more things. Anyways... I also did my application for the masters program at that time. I just got notice a couple of weeks ago that I was accepted! Previous students compare it to the first year of med school. I am thrilled, but I am also worried. I barely made it through this semester (which a lot of help from professors... letting me miss class, make up exams, etc). I don't know how cooperative this masters program will be. I sure hope I improve quickly. Classes start June 18th!

I don't know how I could deal with this for a year! The IC specialist said my constant need to urinate every moment of every day is not necessarily urge... they think it is my bladder "jumping or twitching" in pain. It is saying "ouch" all day/night. Out of all the meds, the Ultram helps the most. I take it every night and I sleep better when I do (instead of getting up every 30-90 minutes, I can sleep 6 hours with only waking up once). The other thing about it... if I don't take it in the morning, I have more frequency/urgency issues in the morning. Same for the afternoon. So, most days I take it 3 times/day. With my period, I might have to take it 4 times (which is the maximum dosage). I think Tylenol is bad for me, so no more Tylenol 3. I just don't want to build a tolerance to Ultram and have it be less effective or ineffective. If I don't have to go anywhere or do anything, I skip the afternoon dose.

I can't imagine what life will be like without symptoms. It has only been close to 6 months and it is horrible. My mentor feels so bad for me. I stand in the OR watching a 3 hour case and I'm in and out the whole time (standing makes it worse). I used to observe 6-8 hour cases and not have to leave or sit down. This just kills me! I can't ever imagine being a surgeon if I have to urinate all day long! I really need to get this under control. Who knows, maybe I will go into urology and help others with this disease! I have a few other passions though (obesity surgery, general surgery, plastic surgery), so we'll see what med school and rotations bring! I'm able to be in the clinic (because I can sit with each patient) and the only time it is hard is when we do rotations. I just try to deal with it and use the bathroom once or twice. My mentor says he doesn't notice the frequency on clinic days, but sometimes he does. I'll say before going into a room, "I just need to use the restroom," and he says, "Naturally" and waits for me. He is so sweet (he did 2 of my surgeries and took a liking to me and let me shadow him). It is the highlight of my week to be in the hospital (not as the patient of course)... so it makes me excited for med school! I am just so worried that IC will mess things up for me... but I am determined not to let that happen. I have overcome so many struggles and health issues that this is just another bump, another test, another way to relate to my future patients.

Well, now that I got off track... I will try to foucs on the positives and work on getting the right diet/treatment plan for me... so hopefully I will improve quickly!

Thank you so much!!!

[soccermom32 ICN Member Find all posts View Profile Close soccermom32]

Hi!
I am sorry you are having a difficult time. Are you taking anything for nerve pain such as Gabapentin? That drug helped me considerably. Also, since you can't take Elavil, can you take Nortriptyline? Different class but good results and not as many side effects.

You just started your instillation treatments. I went twice a week for 2 months before I started getting better. Now I am down to once a week. I swear they helped to heal my bladder!! I didn't have frequency issues, I had terrible pain issues. I am also a runner. I was unable to exercise from Nov 06 when this all started until just 2 weeks ago. I am now walking 4 miles a day, everyday and have lost the 5 pounds I gained on the meds.

Do you have Pelvic Floor Dysfunction? Since I've had therapy for this issue my bladder symptoms are minimal to none. This also took 2 months....

You WILL get better. You just haven't found what is going to work for you yet. What about Vitamin E, Glucosomine or MSM? I take 3000mg of MSM a day - 800mg of Vitamin E and 2000mg Glucosomine. I think this has helped with pain issues too. I've heard the Aloe Vera is great but never tried it myself.

As for diet - I did the diet for weeks and I wasn't getting better. I hired a holistic nutrionalist and once I started eating what SHE suggested I started healing. I won't get too much into this here b/c I don't want it to get thrown to "Alternative Treatments". My doctor supports this as well.

Email me if you want to. I've been exactly where you are and I'm here to tell you it does get much better. You will be running again. Your entire life will not be like it is today. You have to believe that!

[zanne ICN Member Find all posts View Profile Close zanne]

Newly diagnosed

I am just newly diagnosed with IC and I feel very overwhelmed with the changes that I have been having to make, I feel I have been doing the best that I can. I do get very frustrated at times and I just want to sit down and cry, but then I think how fortunate I am to have IC and not a life threatening illness that there is no cure for. But I still feel sorry for myself and others with this condition but I guess we just have to learn to deal with it, it is not fair at all but that is what you have to do, go on and trudge forward to a new day.

I have not yet sat down and just cried my eyes out but sometimes I think that if I do I will feel much better.

Just take each day one day at a time. Get through one day and try to get through the next.
Take care and read as much as you can to try to understand IC.
Sue

[Berkshire Road ICN Member Find all posts View Profile Close Berkshire Road]

Sue -- Cry your eyes out. Trust me, it's an important step in the coping process.

There is a wonderful poem about coping with an IC diagnosis ("Scream..." that was the beginning). It was printed in the last IC optimist. Does anyone have the text? I thought I saw it posted here, but now I can't find the thread. If anyone can duplicate the poem or find the link to the thread, please do! I think it's very helpful for our newbies. And for all of us.

[zanne ICN Member Find all posts View Profile Close zanne]

Carolyn and Jilly

Thanks for your replies, I know that crying is a part of the coping process and It is coming really close to the day when I just sit and cry, unfortunately I work 6 days a week and it doesn't leave me much time to be "with" myself and my thoughts and feelings.

Right now I have to put IC on the back burner, so to speak, during my cystoscopy with hydrodistention my uro did a vaginal/rectal exam since I kept telling him I had pain/pressure in my rectum area, he found a hard area the size of a baseball, so he had me go back to my gyne, I saw her yesterday and she wants to do a biopsy, to see whether it is cancerous or not, or if it is just infection or scar tissue. I am really scared but it did get my mind off of my new diagnosis with IC. The part that is so strange is I saw her about 6 weeks ago in fact she was the one who suggested I might have IC and to go see my uro. She did an exam and ultrasound then and found nothing. So in a way IC might of saved my life, if I hadn't gotten the Cysto/hydro it might not of been found until my next pap smear.

Thank you for your replies and positive reinforcements, this message board is a blessing.

Sue

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Briza,

I was given Valium because my periods were so painful last time that I couldn't stand up straight. I didn't want to take pain meds so I said, "it feels like I have a constant charlie horse in my pelvis... would a muscle relaxant help?" So they gave me some, baby dose (2.5mg) and it helped my period pain tremendously. I was able to sleep on my back for the first time in a while. I guess I could ask my IC specialist if they find it helps IC symptoms and maybe I'll take that here and there. If she says "go for it" I'll try it!

Why did you stop the Valium?

One med that might work well for you that generally has no side effects is a low dose of valium...2mg...it can relax your bladder so that you don't feel that constant urge and frequency, like Elavil is supposed to do. It might help with what you are describing as twitching and jumping feelings in your bladder, that sounds like spasms to me, and low dose valium can help a lot with that, since you can't tolerate elavil for the frequency. And there are some other antispasmodic meds specifically for the bladder, but I can't remember the names of them right now. I took 2 mg valium for a while for vaginal spasms, it worked great and I got results very fast, and there were no side effects nor drowsiness, and at that low a dose, dependence and addiction are not a problem for most people. Now I have to take a muscle relaxer, it works some, but makes me really sleepy. I much preferred valium.