My IC Story

[DebbieD]

I just wanted to share How I went through this IC Ordeal.

It started when I was in the Second Grade. I would Pee Blood and Clots Were just Pouring.My Urine was Beet Red. I was scared when I first saw this. Well When I got in the 7th and 8th Grade. I was at this State and peeing every 45 Minuites.I did fail Gym for 2 years. It Hurt to Run. I was in the 10th Grade and I came down with Mono, So at this Point I still have not Told a single Person about Me peeing Blood. At that time of Mono they also wanted a Urine Sample. Well Guess what. It was so Bloody and full of Clots. The Doc ask me did it hurt whn I went to the Bathroom. "I said No! He goes Honey your Urine Concerns Me. He Gave me antibotic. Now My Junior Year in High school I went out for Cheer Leading. At this time I was going to the Bathroom 60 times a Day and 45 at Night. I still have not told anyone what I was going through. I was thinging then I need help real Bad. The Day Before My Junior-Senior Prom I told my MOM. I was really involved in School Functions. Going into my Senior Year I had to go get a Physcial. The Doc ask me again about Hurting. Thsi time I said Yes!.He told me to go this Uro. So I went to see this Uro. He wanted to a Cysto Under General.

He did. He goes you have a very small Bladder with Plenty Of Hunners Ulcers.He trated me for a Month. I was No Better. So he sent me for a second opoinon.This time I liked the Uro. He also Wanted to do a Cysto under General. I graduated in June 0f 1977 and 2 Days Later I was in the Hospital.
Then The Uro treated for 6 Months I was getting no Better. I was preparing for College. He siad I am Sending you to Duke University Medcail Center to Confirm that you do indeed have a Severe Case of IC. I was stuned.

In 1978 I was at Duke and going through So many test, You Name it I had it.Even had Uro dynamstics. So Many cystos. DMSO tratments. Bio-Feedback

In 1981 He said Debbie you are in Bad shape. Lets Try to work on the Pain and Pressure and Bleeding. I said okay. So in May of 1981 I hada S2-Nerve Block. Where they went in the Lower Part of My Back and Cut the 2 Main Nerves that went to My Bladder.After I got out from the Hospital from this Surgery My Gradmother Died on Mothers Day. I had to ride in the Car on my stomach cause I could not sit. My Grand mother and I were real Close She Died of Breast Cancer. Her Last word to me was 'I Love you Baby"Then she went to Heaven.After the Surgery things still not help I still had the Pain and Pressure .

In 1982 and 1983 we Did the Part Bowell and Part Bladder. Did not Work.Things were getting worse and worse. In December 3rd 1984 I had My Bladder removed and the Ileo-conduit Made. At that time it was 2 Months before I got Married in February of 1985. There was a Nurse in my room one night and there Came some Christmas Carolers Came By and stop by my room. I smiled. The Nurse goes that is the first time you have smiled in 7 Days. I had all kinds of tubes. 2 Jaskson Pratts, Cath tube, NG tubes , 2 IV's going. and a Belly full of stapes.And there was no one there with me . My Mom was 3 hours away. He did leave in my Ureatha. Well in 1985 I was having Bad Pressure Like I had to sit on the Potty and strain Nothing would come out. The a Couple days Later I was sitting on the Tiolet Strainng and a very foul green stuff came out. I went to see my local uro. He used a baby infant Feeding to to cath me. When he did that a Huge Clot of Green stuff ccame out. Well for 8 months I would go to his Office every week to get this stuff drained. Then is was so painfull They were giving me 100mg of Demerol in order to do this. In 1986 I went Back to Duke and they removed my ureatha. When they did My Dr. told me I was trying to form another Bladder at the end of my Ureatha. It was Little Bigger than a Golf Ball.

In 1988 and 1990 I had a Blockage in My Ileo-conduit. So they had to go in a remake me a New loop. The Path report siad Severe IC Inflamtion in the Loop.

In 1992 and 1999 I had to have another revsions done. Using More Bowel.At this point they used all the Extra intestines they could. In 2001 remade another Loop and this time they used my Transverse Colon to make it.

I am still having Blood in the Urine all this time. I aslo tried to get Pregant at this time .We tried Everything. Even standing on my Head. Well after a year of trying and Surgeried to find out why. I could not Children.

I have a Great Husband for 23 Years. I also had my Disability Check started coming in 1987.

In 1996 I hada Hysterectomy. The God had me doing Mothers day out at the Church. I was helping out in the Office. I was Doing Junior Camp at my Church for a week in the Summers of about 100 Kids. It was Blesing to do that.We were Camping, Hiking and swimming and Going to races.

In 2001 I was going in the Hospital every other month Cause of infection. My Veins were so bad. In 2002 I hada Port-a -cath in my Chest for Blood Draws and IVs.I aslo had short Bowel Sydrome cause they used up all my Bowel. So every time I ate a Meal within 25 minuites I was running to the Bathroom with Dirrehea. To this day I have to take some Meds to stop me from going so much. In July of 2004 I was seeing my annually Dr. at Duke and he said Debbie the Kidney is Bad and we have to remove it. They were checking my Bun and Creatine and doing reanl Scans.July 31st in 2004 They told me that in September 1st 2004 They will remove my Kidney. Removing a Kidney is Nothing Like having your Bladder Removed. All this prep for all my surgeries was so Bad.I was in the Hospital for 4 days for Open Nephectemy. I also did not Know that they remove arib when they Take out your Kidney. Not all Drs. do that. But Mine did. 2004 through present 2007 I still go in the hospital for Inections about every other month. I am also anemic. I have to get Blood transfusions. Also since 2006 and 2007 I have a Stent into my Left Kidney that gets changed every 2 months. All my Local uros also kept in contact with my Main Doc at Duke hospital. I also a Stent in my Superior Vena Cava caust the port through a Blood Clot. Then the Port had to be removed.Now I get IV's in my Neck or a Pick Line in my Upper arm.

I am doing my best at things. I am not the type to sit down. I am going to the Beach in a Couple of weeks. I am so ready. Once I am Back from Vacation in July I get back on a saturday and then that Following Monday I have to go to Duke again to check this Kidney again. I have 4 x-rays to do and Blood work.


We have moved 6 times in 23 years. I am tried of Moving. I am back in North carolina Now and Close to my Family and friends.I might have Left some things out . But that Kinda sums up some of it.

Have a Nice Day
DebbieD

[dancemomof2]

WOw Debbie you have been threw it. Thanks for the story.

[mom_in_ma]

Debbie,
You have been through a lot. Glad you shared your story with us.

[tuvaralm]

Wow. You have went through so much! You poor thing. Thank you for sharing your story with us.

[SharonA]

(((Hugs))) I am so sorry that all of this has happened to you. You have had to deal with a lot and yet you are still living your life as well as you can. You are an inspiration.

[tigger_gal]

Debbie,
you really have been thru so much, and just kept on fighting. You are one true IC hero. People need to know that there can be a dark side to bladder removal and interstim for that matter. We are all different and we all react different to treatments, whether is be oral meds, instills or surgery.
Thanks for taking the time to post your much needed to read story. Some of us are luckier then others with IC, but we all share the same disease, and feelings that go with it. Sending you great big hugs from your IC sister in Michigan.