Jeffrey's IBD Story..

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I went and saw our family P.A. who dismissed it as probably a innocent Roid and recomended I see a Colorectal Doctor to confirm this..Well after about another month of the symptoms now combined with some kind of mucus I finally did make that appt with a colorectal doc..Were up to April 97 now and still bleeding and also starting to take a toll on my health!!  The Colon Rectal doc told me it was roids and performed three small banding procedures that hurt like hell to remove these supposed hemmies!!  To this day I doubt he ever did do anything significant because guess what?? The bleeding and mucus got worse and now more symptoms began such as Severe cramping and Bloody Diareha.  I started going 10,15,20 times a day and it was all blood..I got so weak that I could barely lift my head some days let alone get out of bed!!

Enter the month of June 97..Still bleeding and feeling so lathargic and dead I am starting to actually get scared myself now..I mean I am still under the impression that nothing bad can happen to me..I've always been healthy and I am invincible!! It was really starting to effect my work schedule now and I was late frequently because I would have to stop 2,3,4 times on the way to use the local restauraunts bathroom!! Well one dreaded night in June it all came to a head..I mean I hit the wall and that as my wife put it was it!!  I was up all night on the Toilet and after about 30 trips she had my clothes ready and said its time to go to ER!! I still hate that word I told her but agreed and off we went!!  Well after finally getting into a room I was looked at by the attending and Xrays and test were taken and it was determined I should be admitted to try and calm down my bowels at the least!!

I checked into my room and still felt like death warmed over going time after time.. It was then I got united with my present doc who in my opinion was a god send!! She was a GI who had an idea what was going on and immediatley scheduled me for what was called a Colonoscopy..Well what the hell was that?? That procedure name scared the hell out of me and I said to myself..why is he doing this..My Colon is fine..Its my butt thats bleeding!! I put two and two together and figured the bleeding could be coming from there and reluctantly consented with the urging from my wife!!  We agreed and she said she'd see me bright and early the next morn for the procedure!!  At that very moment I just realized I was Best Man in a friends wedding in four days and they had better hurry up and get me out of here..Great now that was up in the air!!  Anyways the prep for this colonoscopy was hell!! I had to drink a whole gallon of this crap called Go-Lytley (should of been called Go-Frequently!!).  It was this mixture of phoso fluids designed to clean out your intestines completley and boy did it do that with authority!! I must of went 75 times in the next 8 hrs and was so raw after I just wanted to die!!

Well D day was upon us as the colonoscopy time was here and I had all kinds of thoughts running through my head!!  I mean on one hand it would all be over here soon and they would know what it is and could correct me..on the other side of my mind I was thinking that maybe I do not want to know..I mean what if its Cancer or something...God please let this 4 month nightmare be over soon!!  They wheeled me into the out patient procedure room and gave me some demerol or something and next thing I know i was in la la land and woke up an hr later in a dark room..It was over and I hadn't even remembered it starting!!  Sometime in between they had done the colonoscopy and found out what they needed to!!  Getting back to my dark room..I woke up and no one was around so I figured I'd get up..well my legs were not ready to and on my ass I went..LOL
The nurses rushed in and said NO NO stay laying down and they would take me back to my room now that I was awake..Well before they did that they(the nurses) told me I was singing during the whole procedure and was quite entertaining!!  She also mentioned I was barking about some wedding I was in and I had to get out of here soon!!  I got embarassed about it but didn't doubt it because I have been known as a ham!!

Well when I got back to the room the mood was quite somber as the doc was waiting for me and had already talked to my Wife, Mother, and Mother in law who were all so lovingly there for my support and I could tell it was not good news! They had been told something serious because I saw dried tears in my wifes eyes!! A sudden rush of terror ran through me as I braced myself for the news..The doctor cleared her throat and told me I had Ulcerative Colitis!! I said what the hell is that?? Am I gonna die? Theres got to be some mistake..I don't even know what the hell that is!!  She assured me there was no mistake and that I was not going to die..I instantly felt better but was still scared!! I was told it was a chronic disease of the Colon that causes it to Ulcer out and bleed and fiercly with mucus and many horrible symptoms I had already experienced!! It was a disorder that caused your immune system to recognize your colon as a foreign virus and for no reason what so ever decided to attack a healthy colon..Thats what was causing all my bleeding and symptoms.. The food I had been eating and stress of the situation had only added to worsen the condition..  I was told I would have it for life and that medications would help control the disease!!  I was told I would lead a alternative version of a normal life and that my Colitis would interfere every now and then with symptoms but otherwise I would experience weeks, months, and years of normal remission filled life..it was just hard to tell how much would be normal and how much would be hell!! I was also informed that I would need to see her every six months to see how things were going and that after 6-8 yrs with the disease they had regular annual colonoscopies for me scheduled to track the progress of the disease because after that long with it Colon Cancer was a very high risk for UC patients..like 32 times greater...Well that scared the hell out of me but I accepted it and moved on..

After much urging I convinced her (My New GI) to let me try and participate in my friends wedding and she agreed and released me from the hospital but did say I was in no condition really for it but saw no danger in me trying..Well after 48 hrs of the hospital I was out and still not feeling great but was determined to do this wedding and had only 1 day really to recover for it!! I was sent home with a slew of meds which included a steriod called Prednisone to bring down the inflamation of the uclering in my colon!! I was also put on Asacol, Zantac, and something in enema form called Rowasa!!  I had never before in my life been on meds before..I mean this was like being old already!!  Well the wedding day was upon us and I still felt pretty sick but I took something to try and control my Bathroom trips for the day and it worked good until later in the evening!! I managed to make it through the most important part..The Wedding and I was very happy with that..Being the Best Man meant a lot to me and I really wanted to do it!!  The reception was a different story!!  I got so sick there that I had reluctlantly had to leave and felt bad but there was nothing I could do to stand it anymore!! The only bright spot of the whole thing is that I had all next week to recover because I had my vacation planned at our cabin!!

We ventured to the cabin with a few pitstops on the way to use the john but managed to make it!! Needless to say I wasn't very much fun that week as i was so drugged up and just plain tired from everything I'd went through that I slept about 18 hrs a day just trying to recover!! I felt real bad for my wife but it was good for me because I did recover a lot up at that cabin that week and was getting pretty close to full strength by the time work beckoned its call again!!

The meds were working wonders and the bleeding was slowing down however the movents were still frequent! In time however that did slow down too and I was pretty much back to normal except for the stigma of always knowing I will have Colitis and cramps etc..But that was bearable compared to what had just subsided!! There would always be foods I could never eat again and no more Carbonated beverages the rest of my life because they could agravate my colon too!! That was hard because I was a Mt Dew Freak!! I mean basically I had to learn my whole body again and it was difficult but I was starting to finally deal with what I had and come to terms with my disease!!  I mean I was making peace with everything finally!!

1999 - Well round about early January the bleeding started again with some mild discomfort but nothing big.  I decided to go see my GI quick to try and nip this in the butt early.  She put me on the usual meds to try and knock down the flare such as prednisone (YUK), rowasa enemas and supposorties, cortifoam and such..For a short while it seemed to work as symptoms had diminished somewhat but then all of a sudden they got worse again and this time there was no end in sight!!

It was now March and I was starting to get real sick again and work was becoming hard to go to everyday!! I had stopped eating slowly and was losing weight fast!! I finally got to the point where I took medical leave from work and decided to do what I feared most...HAVE SURGERY!!  I researched the Cleveland Clinic and after a couple weeks of calling I finally got in and approved for surgery April 29th!!

I ventured down there very sick and very light considering I had now lost over 60lbs!! Dr. Strong at the Cleveland Clinic decided I was too sick to do the normal 2 step procedure where they surgically remove the colon and construct your new J-Pouch (to learn more click here) and give you a temp ileostomy (bag) while pouch heals in the 1st surgery then in the 2nd step they connect your new pouch and take down your bag!! I had what was called a three step procedure which meant 3 seperate surgerys!!  That meant in the first surgery just removing the colon for now and giving me a bag.  I now wait 6 months to get my weight back up and my health back to feeling better then go back for the 2nd surgery where they will construct my Pouch, finally the 3rd surgery which will take down my bag and connect my new J-Pouch.  I presently am in the stage between steps 1 and 2.  I feel alot better but that 1st surgery was the hardest thing I have ever done in my life!!

April 29,1999 - They scheduled my surgery for 7:20 am so I needed to be there by 6am to get my pre surgery regimine done..I arrived there in a zone..I mean no one could talk to me because I was just terrified and was in my own little world!  After checking in they immediatley shiped me off to start my IVs and get my epidural in for pain during and after the surgery..  There I lay after all that waiting for them to come and get me for surgery...THEY CAME..ugh.  The surgeons interns came in and got me and rolled me into the surgery room where all the vultures waited for me to cut me open.  They layed me down and strapped me down and administered some meds before the anesthesia started.  I remember talking to the doc slowly then I was out!! Well I know what they did and 3 hrs later I woke up in the recovery room in a total druken state!! I didn't know where I was or what had just taken place!! The nurse came over and assured me I was doing fine and explained to me what had just transpired!  Well I was thirsty as hell and no one would give me any water to drink becasue after a surgery like mine your whole digestive system shuts down for 2-3 days so water would have been dangerous. They had a tube stuck down my nose and down my throat to my stomach to suck out everything so I wouldn't get nauseated without the ability to digest. All they would do is wet my mouth with a sponge..It sucked..Well after 3 hrs with no luck getting me a bed in the genal population of the hospital they let my wife and mother in to see me briefly.

They fianally got me a room and off I went to start my hospital recovery..I was in the hospital 5 days before they sent me home with some pain meds, my new bag, and a nice 10 inch scar from surgery on my belly!!  I was home for the next month adjusting and getting stronger and stuff..My appetite came back with avengence which was good but most of all I just felt better without that diseased colon in there!!

I finally went back to work and recovered slowly.  My next surgery is scheduled sometime in the Sep-Oct area so I need to gain some weight back and get 100% strong by then.  I will keep this page updated as things develop

Nov 8th 1999 - Pouch construction went very well and they had to re cut into the same incission from surgery #1..I was very sore after and still had the baggy while my new internal J pouch heals up...The pouch did secrete a lot of mucus in turn which made you have the sensation to go from behind once or twice a day..I kind of felt like having 2 butts for a while with the baggy and all..but its all gonna be worth it in the end...This hospital surgery and stay was not as eventful as the 1st however i did have one minor scare..I had some old blood at the stoma sight which burst during my first post op bag change and caused me to almost pass out and lose a lot of blood but that was quickly put under control...Other than that it was cake...

Feb 7th 2000 - TAKEDOWN!!! yipee...I finally got rid of the pouch and with it got my life back in full and my tummy as well..I now have complete control of when I need to go and love life again!!! Giddyup

I still think about things alot concerning my former Colitis and what will be in store for me but I always figure that more than ever I need to live for today!! There are people out there much worse off and I need to be thankful for the good things in life such as my loving wife and family!! My wife and I are now trying to have our first child so thats a bonus!! There are many beautiful things in life still to me don't get me wrong but please DON'T EVER take your health for granted..You'll only be crushed if you do!!

I still enjoy all the normal fruits of life such as weekends with friends at Cedar Point, and even going to many games and cheering with the best of them! I mean I do lead a semi-normal life right now and then normal after this bag is gone..I just may have to excuse myself more than you to use the the little boys room..LOL (not really).!!Ulcerative Colitis is not the end of the world!!  I Live for today now and try not to think to far ahead!!

Please feel free to email about my Disease..I have no timidness when talking about anything concering it and love to educate the public about it when needed!!
 
 

Also I am a member of the IBD Sucks Forum at this link!! These people have been whats gotten my sanity back in life when dealing with my UC being they all have it too!! Lots of Info here so please check it out!! We are over 4000 strong!!