Do flares ever stop?

[born2swim]

I have been like this since Nov. 06, when all my symptoms started. I would say I'm not quite as bad as before (Jan-Mar being the worst), but I also know I won't leak and so I just "deal with it" and make myself wait it out before hitting the toilet. Instead of every few minutes, I can wait an hour or so (sometimes more if I haven't had much to drink).

I elminated everything from my diet (eating essentially bland oatmeal, couscous, milk, and maybe a couple of other things). I'm taking my meds, doing rescue instillations, trying to add foods back to see how I feel with them. I just can't believe that I'm not getting better yet. On a cystoscope, my bladder looked normal. So what gives? Why is this just going on and on when my bladder appears fine?

Some of you guys talk about having flares for a certain amount of time then they go away or dull. Why won't mine go away? My urogyno wants to surgically explore next month, but wants the Elmiron to work for another 3 weeks before doing that. I've been taking Prelief and that doesn't seem to help.

I guess I'm having a bad couple of days right now and feel like this IC is going to never get better for me.

Ok... done with my vent. I know you guys can physically relate to me. I do have a wonderful family though. My dad is so understanding and just wishes that I get better. He showed me how to cook a couple of IC friendly meals and is even researching IC so he can better understand. This is hard on him too because he worries about me all the time. I had other health problems, that were resolved and then now this...

[LeeAnn]

i hope you feel better soon

Hi Alyssa,

I know how you feel. I've been struggling w/ IC for so many years and it's so rare that I have a good bladder day. My normal is peeing 25-30 times a day---and normal SUCKS. A "flare" for me is about 40-50. I hardly ever go less than 20. I try to "hold it" as long as I can. I seem to always feel my bladder. When I don't feel it, EVERYONE KNOWS IT---I practically sing about how wonderful I feel. That's when I don't shut up about it---when it feels good! I will go ON and ON about how GREAT I feel. Unfortunately that's about one day out of 15. If that. I don't understand. I eat bland food almost all day every day too. I gave up chocolate, coffee, tea, and everything else that I love. The good days seem random and the bad days too. I wish I had more control of it.

Some people talk about remission. There has been no remission for me.

But that doesn't mean my life is ruined either. I have much love, much joy, & I have still gone on to accomplish my dreams---all while peeing 30 times a day! ha ha ha ha.

But what do you mean your urogyn wants to SURGICALLY EXPLORE???

Do you mean a cysto/hydro???

I'm glad your dad is there for you and is trying to learn all that he can about IC. He sounds like a real blessing.

[born2swim]

I'm sorry to hear you have been struggling for years! I've been miserible for months and I have slipped into depression. I was put on Lexapro for it about 2 weeks ago. I do feel like I will not accomplish the thing I want most in life - to become a doctor. It takes a lot of time, energy, devotion... and my pelvis is not cooperating. I barely got through my last semester of undergrad, how can I do med school? That is my greatest fear. I am starting a masters program before med school, so I do have some time to "heal".

Remission sounds like hoax to me... which I know it isn't... but I can't imagine feeling better again. I feel my bladder every moment of every day, even my "good days", which are not good. I don't go as often as you lately, but I feel like I need to. My doctor said that my symptoms sound like IC, but how they came up, how pain isn't really a factor, and that my bladder looks normal... he is wondering if I have endometriosis instead of or in addition to IC. It just feels like something is irritating my bladder, making me have to go all the time, but I don't hurt. When my period hits, that's a different story. I went to the ER 2 times since Jan 2007 due to the pain. I also only feel pain with running. These things make him wonder about endo. He said that it is likely I do have endometriosis and since meds don't seem to help me much (atarax helps me sleep through the night now), that I could have it INSTEAD of IC, but I'm not typical for IC or endo. He said my bladder is not overactive. Something is causing irritation to it. The fact that my first symptom came up with running perplexed him. It sounded like a structural thing in that scenario. He said my bladder is in the right location on exam and ultrasound. It started with some left side pelvic pain. Stopped running, pain stopped. I took a 2 week break (I was training for a half-marathon) and when I resumed, the pain came back. I stopped for a few days and pain came up with running again. So, I said screw it and "ran through it". After a few days of that the urgency came up, once again, only when running. It did that for 2 months... then January came along and I have not had a second where I cannot feel my bladder.

Sorry that this got so long! I'm just frustrated! I have my good mental days and my bad. Today started out alright, but progressed to this post!

Hi Alyssa,

I know how you feel. I've been struggling w/ IC for so many years and it's so rare that I have a good bladder day. My normal is peeing 25-30 times a day---and normal SUCKS. A "flare" for me is about 40-50. I hardly ever go less than 20. I try to "hold it" as long as I can. I seem to always feel my bladder. When I don't feel it, EVERYONE KNOWS IT---I practically sing about how wonderful I feel. That's when I don't shut up about it---when it feels good! I will go ON and ON about how GREAT I feel. Unfortunately that's about one day out of 15. If that. I don't understand. I eat bland food almost all day every day too. I gave up chocolate, coffee, tea, and everything else that I love. The good days seem random and the bad days too. I wish I had more control of it.

Some people talk about remission. There has been no remission for me.

But that doesn't mean my life is ruined either. I have much love, much joy, & I have still gone on to accomplish my dreams---all while peeing 30 times a day! ha ha ha ha.

But what do you mean your urogyn wants to SURGICALLY EXPLORE???

Do you mean a cysto/hydro???

I'm glad your dad is there for you and is trying to learn all that he can about IC. He sounds like a real blessing.

[LeeAnn]

neurological???

Alyssa,

Hmmm it sounds like maybe it could be what my doctor calls "neurological pain." That is why I take the Neurontin and Topamax. I used to do a lot of running and cycling but I can't anymore. My bladder has gotten so sensitive that even car rides have gotten difficult. My doctors think that activities that are "jarring" such as jogging like you described are causing nerve inflammation. I tried Elavil b/c it's supposed to help w/ that but it didn't help me. But the Neurontin has definitely helped. I'm thinking of calling my doctor and asking to go up on the dose of it.

As far as working out, I can't do what I used to do. Now I stick to walking, the elliptical machine, weights. Lame things that don't rattle my bladder, ha ha ha.

I have also wondered if I have endometriosis (and so have doctors) but I haven't been willing to do a laparotomy (sp?). After that cysto/hydro I decided no one is touching me!!!

I just went off birth control about two months ago and have never really tried to get pregnant so we'll see how fertile I am. If I have fertility issues my doctor says it may be endo. If I don't have issues then I probably don't have endo. I just don't want to do anything invasive after that hydrodistention HELL.

Maybe think about drugs like Neurontin to help w/ the nerve issue w/ IC or talk to your doctor about it. It might help.

What are you getting your master's in?? And where?

I just got mine in occupational therapy. I love it.

[born2swim]

I wondered about nerve pain personally. I have had some back injuries (nothing serious, but episodes that could hurt me). I had an MRI done a year ago showing disk degeneration in my lumbar and partial slippage of a couple of disks. Now, it showed no nerve damage, but that was about 6 months before I had any bladder/pelvic symptoms. I tried Elavil but it gave me wicked gastroparesis. I couldn't swallow. Water would get stuck in my esophagus and I'd throw it up. It was terrible and it lasted about 16 hours. I tried it again and with the gastroparesis came horrendous abdominal pain (the food I just ate was sitting in my stomach not going anywhere). I tried it one more time, to make sure it was the med and not some other factor, and the same pain/gastroparesis. Elavil, even the 5mg they gave me, wouldn't work. So, I'm on Lexapro now.

I do wonder if my back injuries did something, but I didn't have a back injury in years... but I had been working on training for a half-marathon (running 10 miles at a time) and lifting weights. My first injury was on bleachers. My back was cracked on one as I tried to lower myself down (instead of going down steps, went down through the crack). Stupid elementary school idea. Then I tried to get on a horse, but it moved suddenly and I fell flat on my back. Then I was on a trampoline and someone "pop-corned me" and my heel got caught on the edge and I fell to the grass below, hurting my back yet again. The last one was in high school (about 7 years ago) and I tore a muscle in my back while lifting weights. So... My back has had some damage. I want to try some glucosamine, but I can't swallow pills and liquid form comes with vitamin C or some type of preservative.

I'd love to know more about the meds you are taking. Someone I know uses Topomax (for other reasons) and she says she feels nerve tingling in her hands and feet (like that pins-and-needles feeling after your foot falls asleep). Do you experience that? Her mom also had the same side effect. What are your experiences with Neurontin? Do you feel drugged up on all your meds? I don't want that feeling, but it's better than feeling my bladder 24/7!

A friend of mine just got her occ. therapy certification and is really enjoying her job. I can't remember what she does, but she loves it! My masters is in medical sciences here in Florida. It's a one year program through their med school. There is no guarantee I'll be accepted to their med school, but my chances are better (about 90% of the masters students get into this med school). It's my first choice school, I wanted to take a year between undergrad and med school, and this program is perfect for me! I'm very excited, but also nervous because of how I'm feeling these days. I just got a gym membership here (I moved here 6 days ago) and I will start with weights and if I can tolerate that, maybe I will try their ellipse machine. They have something that is a cross between the treadmill and the ellipse machine. They said it is like running on air, or like a ski feeling. Maybe that will be better? The ellipse machine tends to hurt my knees and back (don't ask why running was better, I was surprised too).

Oh, about laparotomy. They do it via laparoscopic instruments. They make an incision or two. A camera goes in this tiny hold (long rod camera), and they look around. Another, smaller incision is made for graspers to move organs and look around. If endometriosis, is found, they can make another incision and use 2 graspers, electrocautery, or some other instrument to remove the endo (abalation). If the endo is everywhere, sometimes they have to make a large incision. I've had 2 laparoscopic surgeries and they were a breeze (recovery that is). I had a lap-band and had 5 small incisions (you can't see them anymore, 2 years post-op). Then almost a year ago I had my gallbladder taken out laparoscopically and those incisions are practically gone. The largest one is about 1 inch long. It is not that invasive (but is called invasive because they go near your organs). I bet a foley would be used. They did for my band, but I requested no foley for my gallbladder. After both surgeries, I needed pain meds for a day or so and then I went about my business. I went to a movie and dinner after my gallbladder, then the zoo the next day! I'm not hesitant about lap. exploratory surgery, but hydrodistention scares me to death!

I hope you are fertile, but if not, then it may show what is going on with you and abalation may help your pain issues. I hope you don't have endo too, but getting a diagnosis is a relief. When my doctor said that could be my problem instead, that crushed me. I thought, why do Elmiron for another 6 weeks, look now?!?!?! 2 previous surgeries, they are hesitant to go in on me. Oh well, by the rate I'm going, July or August will bring exploratory surgery.

I hope you get a good day soon!

[LeeAnn]

neurological

Yeah it does sound like it's possible that you could have neurological pain. Not just b/c of your back injuries though. From what I understand, bladder inflammation and pain causes the bladder nerves to become hypersensitive and inflammed as well. Basically, neuroinflammation is a part of (possibly RESULT OF) more severe IC. As in, IC causes the nerve damage and not the other way around. When I engage in activities that are jarring to my bladder, it hurts while I'm doing it and also for hours and days afterwards and I really think it's b/c of this stupid nerve issue.

I've had a great experience w/ Neurontin. I started w/ 100mg three times a day for the first week and each week I increase the dose by 100mg. Right now I take 400mg three times a day. At first I was very tired and "foggy" from it. The fatigue would last a day or two each time I increased the dose. But then it leveled out and now I feel totally fine.

I just started taking the Topamax a week ago. Right now I'm on 50mg and will be for another week before I bump it up to 100mg. So far I'm only getting a little bit of tingling in my lips, bit it doesn't bother me. And I don't have much of an appetite or interest in food which is a good thing right now.

Another drug I'm on is Ditropan which is usually for OAB (which I don't have), but it helps w/ bladder spasms as well as this nerve inflammation issue from what I understand.

I sure hope you don't have anything else wrong in addition to IC.

Well I'm so happy for you that you are getting to go to your dream school!!

What kind of doctor do you want to be??

[vm]

Yes, remission or disappearance of symptoms with medication is possible. I remember being scared to ever believe it could happen b/c then what if it didn't? I felt like the bottom would drop out on me had I believed it and then it never did materialize.

It doesn't happen for everyone, but it truly does happen for some of us. I haven't had real symptoms in a few years now. I don't call it a true remission b/c I am on medication to keep the symptoms at bay. But I eat and drink whatever I want and exercise and so on.

I see you just started Elmiron in April of this year? Hang in there on it. That was the big one that helped me, but it takes time. It does not help everyone who takes it, but for those of us that it does help? Lifesaver. It's so hard to wait to see if it does help, but it honestly can take months to see results.

[ICNDonna]

You might think about changing your exercise regime to something less "jarring" than running. I know I can't run at all.

I don't usually think about remission, but more about controlling symptoms, which works pretty well for me with diet.

Sending healing thoughts,
Donna

[ellienor]

I can tell you that there is hope.

I can tell you that there is hope.
My ic started may 05, and lasted about one year. During that year I had pain every day.

My bladder in the doc office looked fine during this time period. No blood in the urine.

I explored the natural ways, like cysta Q ( helped alot ) cysta protek, ( also good ) . I think the gota kola and cornsilk worked too, but it takes a while.
I drank only Evian water. This helps alot.

After 9 - 12 months i started to have some good hours in the day, then on to good days.
I have a diary for that year, and in june 06 I stopped the bladder diary cause it was pretty good most of the time and I knew what not to eat.

I would get a flair about once a month , lasting for 2-3 days as I recall.
Then they got less and less.

The last flair I had was on March 17th 2007. We were driving 6 hours in the car, which seemed to play a part. But I had also eaten a large bowl of Tofutti Ice cream, which was a major no no no food for me. But now, I can eat that every day with no flair. I have had a stip of bacon with no flair at all.


Right away I did cornsilk in Georges aloe juice at night, and chewed 2 mezotrace tablets each day to alkalize the system.

Now, I even can have coffee for a few days and it does not bother my bladder. I had to stop it cause it tore my stomach up.

Each day I thank God that this is over. I continue to take the cysta Q about 3 times per week and the cysta protek now and then. I can eat any fruit I want, but only do fresh oranges from my tree.

Mezo trace minerals were good too. ( chewable kind ) I do notice that if I dont take my daily calcuims, I feel some pressure.

I also got the book Headache in the Pelvis and did the stretches. I think that helped. Oh, i also did L- Arginine too.
I never did elmeron, but I did one cytotek pill per day. I do 1/2 of one pill now, cause I think it helps my stomach.
I did 2 mg of elavil for a while, and it helped. You dont need much.

There is hope, cause I was pretty bad.
God bless!!

Ellie
PS. I have lots of stomach pain from gastritis now, so if anyone has any tips on that, I would appreciate them.

[born2swim]

LeeAnn,

I want to be a surgeon. I am interested in general, bariatric, or plastics. I haven't decided. Basically, I'm looking at a general surgery residency, then after I complete that I can do a 2 year plastic surgery residency. If I chose bariatric surgery, I'd do a learning course or fellowshiop instead. I could do all 3 if I wanted!

I'll see what my PA says about the meds you are on. Topomax is sometimes used for people with overeating or emotional eating, so my friend uses it for that. She said she'd be lost without that. Since I seem to have some separation issues with my favorite foods (I long for ketchup, cheese, chinese food, etc), it might help me cope with the loss of good food. I'll look into it. If the numbness is intolerable, I won't continue, but I'm willing to try anything at this point.

[born2swim]

VM, I'm so glad that you have no symptoms! I don't mind being on meds as long as I can function again! I'm terrified that this won't be improved by med. school (a year away). My doctor wants to give my Elmiron another month and if I still don't get help from it, he'll want to explore to look for endometriosis, because that could be complicating the situation. I'm just going through the frustrations of being newly diagnosed...

Thank you for your response!

[born2swim]

Ellie, I'm glad that you found a treatment that works for you! I am just so new to all this and I want the Elmiron to work. I'm not having any side effects, so I hope it does work. I couldn't do Elavil (gave me gastroparesis which was painful and frustrating).

Gastritis... I know some people that have had that and they take meds like Prilosec, Prevacid, or Nexium. That helps stop some of the acid production or release into the stomach and reduces any irritation. I hope you get that resolved! That would be painful! They know it's gastritis and not an ulcer though? An upper endoscope would ID the problem.

[LeeAnn]

...

Bariatrics and Plastics would both be very rewarding. I've been watching that new show on TLC called Big Medicine. Have you seen it? I've had a couple of friends get gastric bypass and it's been so much fun to watch them in the months and years after their surgeries. Their confidence goes up as their size goes down. And plastics is such an art. Yeah if you do both you could do the initial surgery and then do the skin surgeries a year later!

My husband is about to start CRNA school. (Certified registered nurse anesthetist). He's been an RN for 6 years working in surgical trauma ICU. I know a lot of doctors look down on CRNA's, but he's really excited about it. He's moved up to #1 on the waitlist at Univ of Pittsburgh and I really hope he gets in---it will be so horrible to be so close and not make it. Pitt is ranked #5 for nurse anesthesia programs and is very tough to get into. He's already been accepted at a school in Texas so he'll be starting school in August regardless.

Once he's done w/ school we want to do those mission trips to South America where we fix cleft lips and palates. I'm an OT so I can work w/ teaching babies and small children how to swallow liquids and solids before or after a surgery to correct this deformity and obviously my husband would be an anesthesia provider.

My real love in OT though is orthopedics (especially hands). I'm doing a two week class in August at Northwestern University in Chicago to get an extra certification in designing and fabricating orthotics. I love it, it's like the perfect mix of art and science. I'm so excited about it!!

I've only done the Topamax for a week but about three days ago I started losing interest in food. Thank god. I was really missing certain things. Now that I'm on this drug you could probably put a table full of my favorite foods in front of me and I'd probably just be happy to have a couple of bites of a few things.

I wouldn't say I get "full" quickly but I get "satisfied" quickly on pretty bland blah boring foods that are IC friendly. It's a miracle b/c I've stopped feeling so deprived. So it might be a good option for you too---and it helps w/ pain too, ha ha ha.

But you mentioned you had the lap-band surgery? I guess if you're running marathons you've already lost all the weight. Congratulations! And wow, this would make you an extra good bariatric surgeon!!