I was told it was a disease of the intestines where the intestines become very inflamed and the patient suffers all kinds of intestinal distress and discomfort especially after eating. The symptoms included frequent bathroom use, diarrhea, bleeding, poor absorption of nutrients, weight loss and many other things. I was also told that there was no cure and that I would be on medication for the rest of my life. I remember being a little frightened by what i had just been told but at that time i really didnt think i had something that was a serious illness. I was put on azulfidine (a 5-ASA drug used to control intestinal inflammation) and it worked pretty well for me other than giving me severe headaches on a regular basis. In those days being young and stubborn and not thinking to myself i had a serious illness i would take the medication and then once i began to feel better i would stop because i hated taking pills. Of course soon after stopping the medication the disease symptoms would come back quickly and i would immediately begin feeling very sick.

I did a good job "hiding" my illness from people always trying to take my medication out of the view of people so they wouldnt think anything was wrong with me and they wouldnt ask me why i had to take pills everytime i ate.I kept all my feelings to myself about how the illness was affecting me and i tried to not think about it, kind of like i pretended i didnt have it. I went on to college and did all the normal things, study, play sports, go out, date etc and i met a girl that was 4 years older than me at a part time job i was working and we fell in love.

This was the first time i had to tell someone other than very close friends and family about my disease and it was extremely difficult for me. when i told her it was very emotional and we both cried but she told me she loved me anyway. We dated for 3 years and she wanted to marry me but i was always pushing her away because inside i felt like less of a man because i had an illness and i didnt want her to be a part of the suffering this illness brings. In 1988 while we were dating i got very sick and was hospitalized for the first time due to this disease. My intestines were very inflammed and i was put on IV steroids (prednisone) for my 3 day hospital stay.I was also working a part time night and weekened job and because of my hospitalization the people i worked with found out something was wrong with me but i never told them what it was i just said i had some intestinal trouble and made it sound like it was no big deal. I remember thinking to myself even though my girlfriend was very supportive of me i have to push her away cause i cant stand to have her see me like this....lying in a hospital bed with tubes in me, it was just very very depressing. I was then sent home on a high oral dose of prednisone that had to be tapered over the next 8 weeks. As many of you with IBD know this is a very serious drug and it has serious side effects including weight gain, mood and personaltity changes, bone problems just to name a few. I remember while on it for the first time i had thoughts of suicide and my moods became very irratic. I didnt tell anyone how the drugs were making me feel i just kept it all to myself. My girl and i broke up soon after this and inside i became very angry and sad that i had such a miserable disease.

I went on to finish college being sick on and off and in 1990 i graduated with a BA degree. I was tired of school and just tired of alot of things and i took about 5 months rest and i was feeling well from the prednisone so i ate like a pig and i gained about 50 lbs that year. Then i got a job working in a youth council as a youth activities coordinator which was a really fun job. It was a small office with my boss, a counselor, a job coach and 2 secretarys. This was my first full time salaried job and i like anyone else had to fill out paper work for health benefits so of course i had to include my detailed health problems. Ill never forget the boss yelling out to me that "there was a problem" in front of the other employees which embarrased the hell out of me and they all soon learned of my illness although they didnt "understand" what it was and i didnt volunteer any information. My job was funded through the state and a year later i was laid off due to budget cuts. Around this time some new drugs had come out and my gi told me they had less side efects than the azulfidine i was taking so i was put on asacol. I was on that drug for about 2 years and I never felt well on it. During this time i decided i wanted to work with my hands so i worked in the electricalconstruction field.

About the end of 1993 i was then put on pentassa a new 5 ASA drug which i did very well on for about 2 years but i hated taking the 16 pills a day. I was the only UCCrohn's patient i knew of walking around at 250lbs. The doctors used to be shocked i had UC(which was called crohn's for me back then) when they would see me because usually people with these illnesses are very under weight but everytime i felt well i would eat and workout and just try to get as strong as i could to try and beat this god awful disease.

In 1994 i began working in a major home improvement retail chain because i needed to have benefits to pay for my frequent doctor visits. i felt fairly well with only minor sicknesses until about the middle of 1996. At this time i began fairly suddenly to experience severe health decline. I began getting side effects from the pentasa i had never experienced prior to this. I began experiencing extreme nervousness and anxiety, panick attacks, bad colitis symptoms, weakness, malaise etc and i spent the next 3 years being bounced around on different medications. They tried remicade, 6mp, all the 5 ASA drugs, prednisone but everything was making me sick so i went from doctor to doctor and test after test with no real answers. During this time my quality of life became awfull. I could barely make it to work, i would feel sick all day at work, come home and have no energy to do anything, i was unable to go anywhere, it was just a horrible existence i would not wish on anyone.

In 2000 i went for another of my bazillion colonoscopies and was told right after the test that my colon was in very bad shape, that one spot in the hepatic flexure had displasia(pre-cancerous cells) and that i should have my large intestine removed. Needless to say i was devastated by this and i decided i would try every supplement or possible cure out there to avoid getting this surgery. But after spending a ton of money and trying all different things my health just kept getting worse and i knew i had to get surgery. This was in the fall of 2000 and i asked my GI doc to give me the number of some guy who was similar in age and who had the surgery and this guy told me about a surgeon in NYC who was the "best". I did some research on my own and all things pointed to him as far as success rate and the amount of these surgeries he had done so i made an appointment with him. I was very sick at the time but i still had my wits about me i did not like his personality..he was arrogant and didnt let me speak much, kept interupting me and leaving to take phone calls or do this or that and i said to myself there is no way im going to this guy. i then made another appointment with someone on long island closer to where i live but i had gotten some bad infection and was too sick to go so i missed the appoitment. I was so miserable and i just didnt care about anything so i said screw it and made an appointment with the surgeon i didnt like for dec 5 2000 and on that day i had a one step j-pouch operation.

I wish i could say all went well from this point on but thats not the case things have been very difficult for me. About 3 weeks after my surgery which left me 30lbs lighter and feeling awful i was told i had to go for chemotherapy because cancer cells were found in a mass that was in my colon and in 5 of 219 lymph nodes that were removed. This news completely devasted me especially the way in which my surgeon delivered this news to me. Anyway i went for 4 treatments and then stopped because it was making me violently ill. i later went for 3 follow up tests to make sure i was cancer free and thank God i am. Since my operation my quality of life has not been so good at least compared to the way the surgeon told me how "great" things would be. I was told i would not be on any medication once i healed and I would feel good. I have not been able to be med free and when i go off meds i feel like i still have disease symptoms so i have spent the last year going for test after test and doc after doc to try and get some answers to explain why i feel the way i do and im still working on this as i write this. I have also missed alot of work since my surgery due to how i feel. i am determined to get to the bottom of this one way or the other and i will update this site as i find things out.

what ive been told to this point is that i have inflammation in the pouch but they dont know why. i dont have crohns(haha yeah like they really know lol), that i need iron which im getting as an infusion casue my iron stores have been very low since my surgery, i dont have cancer, diabetes, tumors so thank god for that. well thats my story to this point and if you would like to write me or tell me about your story feel free to write me at jon9920@hotmail.com. Thanks to all who took the time to read this long story and best of luck and health to all of you.

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