Just found out..

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

Hi,

My name is Nina. I am 37 years old and a mother of three boys ages 14,16,18. I just found out I had IC. They did a hydro on me and confirmed what they thought. I guess I should be glad they finally figured it out. Last year I went though alot. I had my gallbladder taken out, my ovaries removed, and a mass taken out that grew where my ovaries were. I keep hope that after each operation I would feel better, but that never happened. Finally after my doctor got tired of trying to figure out what was wrong with me, he sent me to a specialist. I have to go back on the 12th of March and find out how we are going to handle this. I am trying to quit smoking because I know that is really bad for it. I am not a heavy smoker but I do like to smoke. It is going to be hard to quit. I like to jog & walk but I seem to get worse afterwards. Does anyone have problems with exercise? The diet seems to be overwheming also. I love spicy foods. Any information I would to hear.
Thanks

[sandyz IC Friend Find all posts View Profile Close sandyz]

Nina,

I`m sorry things are so tough for you right now. I just had my gallbladder out 3 weeks ago. At least the gallbladder symptoms are gone. The stabbing pain between my shoulder blades was the worst. Have you seen any improvement. How long ago did you have surgery? Maybe things will get better with a little more time.

Yes, exercise does seem to make the IC worse. I think we have to do something really mild like walking. Then I am ok. THere`s no way I could do an ything strenuous. Its such a balancing act with this disease, it gets very difficult.

Sending up thoughts and prayers for you today. I hope you get some relief soon.

Sandy

[patricia1 ICN Member Find all posts View Profile Close patricia1]

HI and ..This site offers a ton of support and info on IC.

IC can seem overwhelming I know. And its hard finding out you have some type of disease that as of right now has no cure....But if you find the right combo of meds or treatments you can live a somewhat normal life. Remember with this web site there are many IC'ers that have find the right treatment plan for them and they dont post on here as often anymore. Like you I several different types of surg. that I thought would help me, before I got my diagnose. In fact I had a hystrectomy thinking that this is what was wrong with me. But it was not. And in the beg when I found out I had IC I was mad, I felt like the disease caused me to lose a body part that I did not have to lose. Also stopping smoking is a step in the right direction. Which I know is hard to. In fact it took me a while to quit. Even with doctors telling me if I did not stop I would end up with emphsy. by the time I was 40, I am now 35. Even them telling me this I did not stop. What I did was get down to where I would only smoke a few a day, then down to 1 a day and I was finally able to put them down and I have not had one in 5 yrs. Not only is good for the bladder but also good for other parts of your body.

As far as the diet goes I know it seems like alot. But it is only somethting to use as a guide. IC varies from person to person, this is why there are so many different treatment option and not one that will work for everyone. The diet is the same way. Sometimes I can eat something that is on the diet and it does not bother me, but it bothers other IC'ers. What I would do is elim. all on the list the try one banned food at a time and see if it bothers you or not. ALso there is a over the counter med you can get and take with food that you are not suppose to eat, it is called Prelief. You can use this when you eat something you should not have.

Exercise does bother some people and it can interfer with their IC. But maybe once you find the right treatment plan you might be able to exercise again.

Good luck on your return doctors appt.

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

So glad you found us.

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

Thank you for your welcome. I go to the doctor monday to see how he is going to treat me. Still have not felt great from the Hydro almost two weeks ago. Still trying to quit smoking. I have cut down to about 4 to 5 a day.. Thanks again for the welcome.

sandyz,

I felt better after I had my gallbladder out because it did stop those pains in my chest. I did end up with another problem though. They call it the dumping syndrome. I had to go to the bathroom every time I ate. I had my gallbladder out in july 06, and it is finally starting to get better.

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

to the IC Network. You'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find the diet there, as well as other information on IC.

I think it's great that you are quitting smoking. I know it's not easy (I quit a 2-pack-a-day habit 22 years ago), but it's so worth it.

Sending healing thoughts,
Donna

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

HI Nina;
Well Welcome to the forum, glad you found us. Its been a great place for me since i found out last year i have IC along with a long list of other conditions like you. When your feeling down or need any advice please remeber this site, everyopne here is so helpful. And wyhen you have good news also let us know it give us hope also.
I am like you I have a lotof problems exercising. If i over walk it can set me in a major flare up. My regular doctor just doesnt undersztand that and tends to be a little rude to me when i try to tell her i want to loose weight,and she asks me if i exericse and i say no cos i t causes me alot of pain. She doesnt understant it. But hopefuly you get a great uroligist who will. My Uroligist she understand what can set you into a "flare up".
Hopefuly things will become better for you. And since you now know it is IC it may explain some of the pains, and you can better treat it. I had gone 10 years with out knowing i had it. And Once i finnaly recived the right medication, and stoped taking the wrong medicant, of course it made a big differance, I really hope it will be the same for you. I am sure the rest have mentioned the types of medication you will be placed on it all seems to be a comon set of meds that work, but dont worry if some do not. ANd also some do take a while 4-6 to take hold, That one will be the Elmiron, this helps to regrow the bladder lining. For me it took more then 8 month is will say before it really took hold.
And another medication which is over the counter, Is called Prelive, I found it only in 2 stores where i live, at Walgreens, and Riteaid. Its cost about 10$ for a small bottle. But since you love spicy foods, this will help to nutralize the acid in the urine.My doctore told me to take it, seems to work well.I eat a lot of Indian food. And it helps.
Ohh another thing i learned from trial and error, when it comes to exercising,dont strain your lower abdomial muscels!!!! I learn it the hard way. Some days itsok, I try to get into a rutine. but after a few days it kicks it into a major flare up leavingme in pain for weeks.
By any chance did you find how much of your bladder is effected? I know mine is only 5-10%. Which I cant even imagin haveing more, I feel for the people who suffer with it. IF your is lower also, ask your uroligist, not family doctor, about an exercise which she would approve for you. Hopefuly you can find somthing.
My doctor wanted me to go to physical tharapy for IC. But the only place which have it will not except my insurance. But she tells me it helps relax the muscels. This also plays a big effect on your life. She told me do the opposiut of the kegel exercises, instead of squeezing in your muscles, push our words , like when you go to the bathroom, you kind of squeeze these muscel groops these muscels you needs to relax. The more relaxed, the better. Sometimes we just dont notice we are tightening these muscels and we needs to really practice relaxing,
I am taking some muscle relaxers Flerxerel and Eliviavil-150mg. Which i started at 25mg. some women need even higher my docter said just to relax the pelvic muscels, it plays a major role. But i am sure since you been threw so much yourself you know all this.
Also i wasnted to say that if at time when you have some flare up, and your doctor try some things and they do not work, just dont worry and dont give up. I been in that situation, well i am in that situation. The traditional treatments for IC dont work for me. I have the initial surgery to get the diagnosis, then a few months latter i was in a major flare up. They did the office treatments distaltions with a cathider they incerted medican in and left in for 35-45 mins then you pee it out, well they wanted for 6 weeks in row. But after 4 weeks there was no improvement acculy made it worse. Then i came back a week latter to see how it was doing and the pain was gone once they stoped. Which still now i dont respond to typical medicans and ditalations.
Just from what you mentioned seems you may feel the same thing. Typical things not working as you feel they should be. So i can compleatly relate to you. I also have Endometriosis, and was told for 10 years i had it, Then i had switiched doctors, had a laporoscopy done, she said no you do not have it. So then she sent me to the uroligist. Then found the IC. Then this past Nov, again the doc say to be i think you do have Endo, and i just missed it. Then on top of it, I found i have last summer, I have B12 dificency, Iron Dificiancy, IBS, hypoThyroidism, funcional abdominal pain.And today I found I have Low Blood Sugar.lol I was great another thing to add to teh list.
I bet your feeling the same, You been threw so so much worse then I have my heart really feels for you. I am glad you have the diagnosis at least you have it asnwered to where the pains are coming from. IF you ever need to let it out feel free to write. You can get a lot of info from all of us here,
take good care and try not to worry to much.
stacy

[77amy ICN Member Find all posts View Profile Close 77amy]

physical therapy exercises

Hi, I'm glad I just caught stacy's note. I just started to go to p.t. for IC and I was looking to see if anyone was talking about if it helped them or no.
So far it hasn't helped much, but the breathing exercises have helped to relax which helps with the 'bearing down' kind of pain.
Basically what I've learned is to do MILD pelvic strenthening exercises (kegel and the reverse kegel you were talking about) while doing slow breaths using your diagphram. Another: Lifting one bent leg to 45 degree angle while tightening ab muscles then switch legs.

Hope this helps.

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

Stacy,

Thank you for your reply. The information is very helpful. I am sorry to hear you have had so much trouble yourself. I beem walking each day and I hurt at night, so I take a percet. I think the walking at least making me mentally feel better. I go to the doctor monday and see what meds he is going to put me on. I will also find out more information about my IC. I was out when the doctor confirmed to my husband that I had IC, so I did not get the details. I hope you find something that works for you. It nice to know that there are people that understand. Thanks everyone..

Nina