what will my days be like?

[kk928]

I was diagnosed w/ IC on May 3rd. I now realize that this all began around August 2006, but my symptoms were mild at that time so I did not recognize a problem. I was in a crazy, busy graduate program and driving over an hour to school, and I started to have to pee really bad along the drive form my home to school. I though it must be stress and coffee. I also had this occasion feeling like something was digging into me internally, but thought it came from my uterus and was hormone related. At the end of February I had a Saline Transvaginal and the doctor said I had a uterine polyp, so I told the doctor that it was causing a strange digging feeling. Then all hell broke lose about four days after the Saline test (at the end of February). Everything started to kick in. I thought that I had a bladder inflection, a yeasty-beastie and that the polyp was really digging into me.
Tested neg. for any infection and no Monostat treatment resolved the stinging. I won’t go on-and –on, but the pain increased, and each type of doctor cleared me of any problem. The pain increased to feeling like I was being cut by glass, sever nerve-type pain on the vulva, strange intensely insane itching, and a lot of sharp stabbing pain my left side. I kept trying to get myself admitted into the hospital because I was suffering so much. I had to leave graduate school by mid-March as I withered in pain on the couch trying to be distracted by the TV and to lay still. I had some type of pain all the time and it just kept getting worse. At least 4 out 7 days the pain was so bad that I could not even concentrate on what they were saying on TV.

Finally a doctor in NYC dx w/ IC. I am on Elmiron 100mg 3x day and Desiparmine 25 mg 1x a day for a about 9 days now and feeling a lot better (also started the IC diet), but I can’t wear pants because they hurt my bladder, I feel my bladder contracting, if I stand or sit for more than an hour my pain goes up to an uncomfortable level, I have occasional pain in the vulva area that’s very bad, if I hit a bump in the car it feel like my bladder is being jarred, I wake up at least 2-4 times a night to pee, I can’t tell the difference between when I have to pee a little or a lot because it just hurts and I don’t get that normal pressure feeling, if I do more that a few hours worth of anything the pain goes way up, I still have all those jabbing, digging, stinging, itching feelings as pre-diagnoses, less the feeling of glass cutting, but in less intense forms. So here is all my questions that I would be very grateful if someone can answer:

What is a typical day and month in the life of IC? Will I be able to work and return to school or will I always feel this pain? Does anyone have constipation since this IC started and what do I do about it? Does anyone have an occasional bloated tummy and what do I do about that? Is there any non-narcotic pain killers that work for times of intense pain? Once I add foods back, how long after I eat a problematic food will I notice symptoms--almost immediately, next day…? What is better to neutralize, baking soda or Prerelief? That’s it for now. Thank you to anyone who answers my questions. Feeling alone out here.

[leelee88]

Well we are all differant, but at the beginning for about 4 months I had no relief I was hurting every day and peeing like crazy..But after I got on my meds and they started kicking in I started to feel alot better, but I still have days where I flare< pain,burning,itching and when I flare its pretty bad but it only last for 2 days to a week for me..

If you are burning the best thing for me is tums and lots of water the water keep your urine diluted so its not so acidy.

Now the tummy bloating I have not found anyone to help me on that most people call it the IC belly..
And constipation humm I use fleet supositories if I get to bad..

Hope this helps good luck

[kadi]

HI KK,
I developed IC almost 4 years ago now.

Daily life when I first got sick: When I first got sick, I felt horrible. Voiding 60+ times a day, unable to wear pants, unable to sleep more than 20 minutes at a time for weeks, too sick to drive, too sick to eat (lost 10 pounds in 2 weeks), barely was able to work (and realistically I shouldn't have been there).

Daily life now: Now that I have found a treatment combination that works for me, my days are much much better. I work fulltime easily most days. I sleep through the night most nights with only 1-2 trips to the bathroom. I wear pants & jeans. I can exercise at the gym, do yoga, hike. I can drive up to several hours if the traffic is not start/stop, then it's up to an hour I can tolerate that. In 8-1/2 months I have missed only 9 days of work (and 4 were not due to IC).

To maintain this level of symptom management, I do have to work at it.
I have to follow the diet very strictly, no cheating. I have to stay on my medicines religiously, you can see the list below my name. I have to do my pelvic floor physical therapy exercises routinely as well.

Although I get frustrated sometimes that I still have flareups & that I do usually have some level of symptoms, I am grateful my life has been mostly restored & I'm willing to keep working at this to see if I can get even better.

Constipation? Yes. Physical therapy helped me a lot. I also make sure I eat steamed vegetables daily & drink enough water. I do take Fibersure sometimes (inulin supplement dissolved in hot beverage). Some patients find relief when they take Colace with 1-2 meals daily. Milk of Magnesia or a Fleets enema can be used occasionally, but shouldn't be relied on.

Does anyone have an occasional bloated tummy and what do I do about that? Yes, I haven't found anything very helpful for this myself, except that I keep a couple of loose clothing items for those days.

Is there any non-narcotic pain killers that work for times of intense pain? I've not found any oral medicines along those lines. I have found that rescue instillations (medicine put straight into the bladder) are the best non-narcotic pain relief for me. The formula I use has Marcaine in it, a longer lasting painkiller.

Once I add foods back, how long after I eat a problematic food will I notice symptoms--almost immediately, next day…? Can be anywhere from 20 minutes to 24 hours later.

What is better to neutralize, baking soda or Prerelief? Try each. I've found for myself that baking soda is good for a flare that's started. Prelief is best to neutralize a food that's a bit questionable on the IC diet. I don't find it's a miracle, but it will allow me very small amounts of no-no's, that are a part of a larger meal. 1/2 tsp ketchup on fries, a little low acid decaf coffee already diluted with milk.

Hang in there, it does get better with time & hard work, trying new treatments & advocating for yourself, including second opinions as necessary.

[ICNDonna]

First of all, I'd like to say to the IC Network.

Elmiron can take up to six months or more to really become effective; plus there are many other medications that some ICers take to help control their symptoms. There are many who are extremely diet sensitive --- if you're feeling better after only a few days on the diet, it could very well be you are one of those. A few weeks on the diet may help you even more. I know I am very sensitive to things like fruit juices, sodas, and acid foods.

It's difficult to know how you will fare with your IC. When I was diagnosed 32+ years ago, I was extremely painful, but with treatments I felt much better and I worked full time for twenty of my 32 years with IC before I took an early retirement when my husband was able to retire.

It may take a while for you to find which treatment options work best for you, and which foods and drinks are a problem, but most of us do --- and most of us feel good most of the time.

Sending healing thoughts,
Donna

[KristiV]

I was recently diagnosed in March and feel like my symptoms have improved to this point. I still have not had a day without some sort of burning, itching, frequency or urgency, but usually God will give me a break from one or two of them on a daily basis. I have found that it is helpful to write alot of stuff down to somewhat track your progress. I have only been doing this for two weeks now, but believe that it will be beneficial. I keep two notebooks next to my toilet. One is for writing down the times I use the restroom every day and how many times I have a BM. The other, I write down all the foods I ate that day, the total number of times I used the restroom to check for frequency, the meds I took that day (e.g Prelief) and the symptoms I had that day. Sometimes it is hard to tell if your making an improvement, but if you look back and can check what you felt like two weeks previously, you might be able to see if the meds are working. Just a suggestion.