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View Full Version : Diagnosed w/ IC earlier this week


Chicka
02-07-2008, 01:09 PM
My battle with mysterious stomach pain came to what I’m told is the end on Tuesday, though I am still hesitant to put any faith in the medicine until I start seeing some changes. Maybe you’ll understand better where I am coming from once you hear my story….

I am called Chicka by friends and family, I’m 27 years old and married to a man that I’ve been with since I was nineteen years old (Well, minus a few months a couple of years back but that’s another story, lol). Between the two of us we have three children. My son Christian is 10, 11 in March; his son Jamey is 9 and our daughter Ashleigh is 4, 5 in May. I live a relatively quiet life concentrated mostly on my family and friends. I work out of my home, doing customer service and my husband works for the Big Airplane company.

My life held some interesting things starting during my teenage years. I kept having these bad stomach pains, so horrible that I could barely move. Now the ones that came during my period were dismissed as cramps but the occasional ones that had me begging my mother for help were something completely different. When I was 15 she took me into the ER and after about 6 hours I was sent home and told I was constipated. The next day we were back and it was worse. Invasive testing for hours and the head of the OB-GYN department came into tell me that they were sending me home because they thought I was faking my pain and just there to get drugs. My mother took me to a different hospital and they found a massive cyst on my right ovary that had burst. I spent the night in the OR Prep room in case they had to do surgery.

A few short months after that I found myself pregnant with my son at the age of 15. It was a hard time for a variety of reasons, the biological father had no interest in either of us, I was in rehab for alcohol abuse and soon after my positive pregnancy test I started having problems. I couldn’t hold food or liquid down and was sent home from the rehab center to be closer to my doctor’s office and started having to go to the ER weekly (or more) to be rehydrated. When I was three months along they told me they found something odd on a test and that they were going to have to do more tests. If they came back positive, then I’d have to get an abortion to have a hysterectomy. Luckily the test came back negative and I continued my pregnancy. Against my luck, at four months I started having what I thought were false contractions only to be told by my doctor that they were indeed the real thing. My son was born four weeks premature but a healthy 6lbs 6ozs.

After my son’s birth the problems continued. I’d have massive amounts of stomach pains every few months and was always told that it was more ovarian cysts, even if they couldn’t find anything on the ultrasounds or the MRIs. I started having abnormal pap smears and was required to retest every three months. Each time I got two abnormal results back in a row, I’d have to have a coloscopy done, where they go in and remove a pinch of the cervix for biopsy. This happened every third test and continued from the time I was 16 to 19, each time the biopsies coming back with nothing until finally they found cancer.

Just after I turned 20 I had more than half of my cervix removed to get rid of the cancer, a few months after I started dating the man who is now my husband. I continued to have stomach pains every few weeks occasionally having to go to the ER because I couldn’t handle the pain. It was never the same thing, sometimes they’d see a real cyst somewhere and sometimes they wouldn’t. One time, a particularly bad episode that had me so dehydrated that it took them a full seven hours to get an I.V. in me, they told me it was a kidney infection. After this episode I started having weird pains in my side if I drank too much. It started as something that didn’t happen all the time and it was rather annoying at first but as the months passed it got worse. The one good thing from this was that when I got the pain and started drinking water to make it go away, I never had hangovers!

Life settled down for a while after that and the stomach pain turned into something that I’d experience only three or four times a year. Things seemed to be looking up. Until I found out I was pregnant again. This time, the pregnancy was much worse than my first and I was sicker than I ever had been in my life. I was in the ER again, this time an average of three times a week and they got to know me really, really well. At 10 ½ weeks left to go my water broke and my contractions couldn’t be stopped. When my daughter’s heart beat disappeared from the monitors, they rushed me into emergency surgery and she was born by c-section weighting 3lbs 3ozs.

Ash spent 6 ½ weeks in the N.I.C.U. before she was able to come home and it was nearly a year before I had another episode. Again, no idea what was wrong and things continued to get worse. For two years I was in and out of the ER more often than I ever had been before I was told I had endometriosis. They quickly got that under control and it was a blessed few months that I was free. Then I got sick, developed a 107 degree fever and again rushed to the doctor. They decided it must be my appendix and took me into surgery to have it removed before it burst only to find it half disintegrated. Apparently that ‘kidney infection’ I’d been diagnosed with was my appendix rupturing and the reason for my pain when drinking was the alcohol leaking into my body cavity. Downer from this problem being fixed, having to deal with hangovers for the first time ever. Not so much fun.

Anyways, after this things calmed down again for a while before my stomach pain began to be a daily thing, recurring for months at a time with a short break. For the last two years, it’s been nonstop, I was told by my last PCP that it was all in my head. I switched doctors after that. Last month I was again in the ER, being told I was dealing with a cyst even though they couldn’t find anything. I decided I was done with it all and wanted a hysterectomy. But when I went into the OB-GYN he said that he thought it might be IC and referred me to a Urologist. I waited less than a week for the appointment and went in yesterday. We talked for a long time, going over my entire history and he was surprised that no one had ever mentioned it to me before. We did the potassium chloride test and he confirmed I have a moderate to severe case of IC (it all depends on how long I’ve really had it, which they can’t figure out). We did the instillation and he prescribed me Amitriptylline for the pain. So for the next 6 weeks I get the instillation done and see how the meds go from here before making more decisions on other treatments.

I’m torn between being thrilled that I know what it is and being upset that it’s not something they can fix. I’m hesitant to put much faith in the medication in case it doesn’t work. But my husband is optimistic, hoping that our sex life will get better again and I’ll have the ‘umph’ to do more with our kids again.

Anyways, now that my novel is over. >_< I’m trying to be optimistic myself but it’s only been a few days. If you suffered yourself through what I wrote, thanks for listening. I’m really glad to find a place where people understand what I am going through, even if I don’t really yet.

kuntrygurl78
02-07-2008, 07:09 PM
All I can say is holy moly! WOW! Youve been thru a lot!

First off, Im glad you found us:hi: This is a wonderful place. I would like to suggest a few things. One is the diet. The diet has helped so many people here. Most of us have at least a few diet triggers; some more than others. Im one of the lucky ones that doesnt have very many. Second, there is the patient handbook. Its a great place to learn about what you are dealing with. Third, read the patient stories. They are great for giving hope. Many people here have started off in horrible pain and went thru a lot to get to where they are now. Many of us lead normal lives. It may take a while, but it does happen.

I hope that the instillations help you! :welcome:

ICNDonna
02-08-2008, 02:42 AM
:welcome: to the IC Network. I also am glad you found us.

I think my very worst time with IC was before I was diagnosed. Once I knew what I have I was able to deal with it. I encourage you to give the diet a try. That can help substantially and it's not too difficult.

I hope you feel better very soon.

Warm hugs,
Donna

Chicka
02-08-2008, 09:45 AM
Thank you for the welcomes. I am still looking around the site and trying to read as much as I can. As far as diet goes... I'm going to try but my will power isn't the best and the childish part of me is whining that we already have to give up milk due to the lactose intolerance... lol ...

The meds I take at night make me way sleepy, almost sedated-like, and that scares me with two kids in the house and a husband who doesn't get home from work until 2 or 3 in the morning!

Ugh, I'm so not ready for reality.

Claredale
02-08-2008, 10:09 AM
Hi Chicka!

My cousins used to call me that when we were growing up. I was the only girl in the family for quite a while. Anyway, welcome to a wonderful place where people are helpful and truly care. I have gained alot of information on this site. I was diagnosed with IC before this site was around, so I didn't have much information except for the definition, etc. Not anyone to actually chat with.

You have been through so much at such a young age. Hopefully your body will adjust to the meds. It didn't take me long, but my body gets used to medicines way to quickly. The diet can be a big help. I understand that you are already frustrated with the lactose thing. My husband is just starting it and he doesn't think he can eat anything. I did the diet by elimination so I could easily tell what actually was a trigger. I added a food every few days, but I started out with a variety of foods that were on the safe list, so I wasn't bored with my diet. Luckily I am a picky eater anyway, so alot of the foods were easy for me to do away with. After all of that, I found out that citrus is my main culprit, that along with stress and pushing myself.

My advise, is to get as much rest as you can. If you have pain, make friends with a good heating pad and drink lots of water.

I hope the best for you and that you will have much better and easier days in the future!

T83

SharonA
02-08-2008, 11:08 AM
Chicka...I want to say :welcome: to the ICN. I am so glad you found us.

You certainly have been through a lot up to now. Your story took my breath away. I am so sad to think of all the suffering you gone through.

The IC Diet really is important because we need to learn if our bladders react to certain foods/drinks. The only way to do that is to eliminate those things that cause us problems and trigger our symptoms. You will read over and over again how knowing our trigger foods/drinks can help us tremendously.

Believe me, when I learned that I could no longer enjoy one of my favorite foods, oranges, I mourned over that. I have learned over time that there isn't an orange in the world that is worth having the kind of pain they cause me. I still love them, but do not eat them.

I hope your meds and instills start helping you, very soon. I have been on Elavil (amitriptyline) for several years and that, plus watching what I put in my mouth, enables me to live a pretty normal life without the kind of pain I was suffering in the beginning.

So, don't give up trying to find the right combination of meds/treatments that will help you. I know it is rather overwhelming right now, but you can find help and you have every reason to be hopeful. :) :) :)