Thanks for reading I hope you enjoy
Wow so this is it! I might have a disease! Wow I might have a disease! I can't believe this, not me, this can't be! This is all a joke somebody can wake me up from this dream any time. Those thoughts and many more went through my head over and over, even having dreams about it.
The next couple weeks were hell waiting for a result from my GI. I would call my answering machine about every 30 minutes checking for messages, and check my phone every 10 minutes to see if anybody called. But to no avail I wasn't able to will that call and until I got that call I was going too have to deal with it. I tried to keep going but the thoughts consumed my life for the next couple weeks.
I researched Crohn's Disease over and over again online as well as books. I thought over and over in my mind about the severity and did I have any of those symptoms. The symptoms I had at the time were not all that bad but were still symptoms. But as they say you never want to research diseases online because you somehow you can express those symptoms. Then finally Monday the phone rang while I was at work, my GI's office called to setup a apt. March 17 2010, my friends birthday. The next couple days were like being hung out on a clothes line being pelted by rain and not being reeled back in.
Finally March 17 at 3:55pm. I walked into my GI's waiting room shaking like a leaf inside but on the outside cool as a cucumber. I checked in with the secretary then grabbed a seat. As soon as I grabbed a seat I went onto my phone and was txting with my sister so I would stay calm and relaxed. I looked at the time and it is now 4:15 it felt like a hour had gone by. I look around and I am now the last person in the waiting room. As I looked I watched a patient of my GI's walk out of his office followed by a nurse from one of the other doctors. It's now 4:20pm and I am sitting in a doctors office alone, I swear a tumble weed came through. I am now really getting worried that I am about to be told something horrible. My thoughts were I am the last person in the office just in case I freak out and something happens. As I said goodbye to my sister my name was called, Shane come on in I heard. Well That might be a issue, part of me didn't want to go into the office and the other part did. It would have looked like part of me was clinging to the chair with white knuckles and the other part of me was pulling me off the chair. As get up and turn my phone on vibrate take a deep breath and walk into his office.
The wait must have been the loneliest and longest 20 minutes of my life. I had people offer too join me but I wanted too do this alone.
As I walked into my GI's office my first thought was Oly shit this is it. I grabbed a seat and he asked me how I was doing. I answered in pain and not feeling very good. As I said this I'm thinking ok lets get this over with. Then he said Shane I think were dealing with Crohn's Disease and I want to confer it with another doctor, but it looks and is acting like it. Your results turned up no infection which means the inflammation is cause by Crohn's Disease as we thought during the scope. As I was listening everything went silent and the room started spinning, my mind couldn't absorb what I was being told, thinking oly shit I have Crohn's Disease.... nooooo, how can this be. I did finally kind of absorb what I have been told, the whole moment felt like 10 minutes but it was probably more like 10 seconds. Note: People this disease is on the legal marijuana list, to be on that list in Canada it has too be fatal or one of the worst disease in the world from what I understand.
He told me what Crohn's Disease is and what it does and his plan of action. He stated that my Crohn's Disease is mild. That I would be starting a pill called Salofalk which is the same as Pentassa but Pentassa releases at a different spot. I could have asked more questions but I wanted out of there. I grabbed my prescription and got a quick check, he said to call anytime that I have pain. As I leave I am thinking ok I know what it is and a action plan. And I have Crohn's Disease. The eyes watered up and as tears feel down my cheek I was thankful to have a empty waiting room. Needless to say it was a long drive home and I had some calls to make. Once I got home I researched everything about five or six times within about a week. You would have thought I was studying for a test. For the next couple months I waited for a result from the other doctor. Finally about 2 months later the waiting was over and during my appointment my GI told me that the other doctor also believed that it was Crohn's Disease and right then and there it was confirmed what my GI suspected.
My Treatments up too now:
Salofalk Treatment: Salofalk about a month into the treatment and the pain is getting worse except for periods about two day spurts of no pain. It was almost like the pill was winning but Crohn's was taking back the area, I called him and got a apt.. He said that I should keep trying it and see him in a month. A month later and my pain still was getting worse. At the time we both decided that I didn't respond to the Salofalk and that Pentassa was to be the next course of action. At the time of the decision it made scene but after reading that Salofalk and Pentasa are the same drug just a different release point and time I lost hope in Pentassa working a little if at all, by now 2 months had gone by. By the end of the treatment with Salofalk I was on 4000mg a day
Pentassa Treatment: Pentassa was almost like salofalk but released at a different point in the body and due too it was the same as Salofalk it worked about the same... Nota. By the end of the Pentassa treatment I was up at 2000mg a day of Pentassa.
So we are now 4 months into the treatment and still nothing, I am now starting to get worried about the lack of remission and then the word Predisione came out in a appointment and from reading the Foul Bowel I am thinking yes this might work.
Predisone Treatment: After all the reading about all the side affects I was scared to take it. But it was time, I was given 40mg and to taper once pill a week till it was done and at this time I was introduced to the Devil drug. About a week into the treatment with Predsione 40mg & Pentassa 2000mg and I was starting to feel better than I have in a long time. I had more energy and less pain, in fact it would go away for a coupe days on end like the Salofalk but when the pain returned it returned a little less. But once again it felt like my Crohn's was taking back the area lost during battle. And at the time I was really starting to loose hope. The S word (Surgery) would keep going around in my mind over and over again. About 5 weeks later and the due to the taper my dosage was not enough to fight the incoming forces of Crohn's and would just come back. Once my taper was done it turned into hell my pain had gotten worse and was moving from the left of my Ileum to the right and causing allot of D and BM's. I set a appt. And my GI. didn't like what was happening my and my GI said ok were going back in and need to see what was going on in there.
Now here we are 6 months after diagnoses and nothing is working and the pain is telling me that it is more than mild. With the researche I had done I knew that Predisone was only for moderate Crohn's and higher so I was really starting to get scared and worried that it barley worked for me. Thankfully my doctor saw that was time to take a another look and scheduled another colonoscopy.
But that is all for now
Thanks for reading
Shane
Wednesday, 23 November 2011
Sunday, 6 November 2011
My First Colonoscopy
I hope you enjoy the read
My First Colonoscopy
Well the big day has come and I am kind of excited, kind of not, a little bit of anxious, the prep is done my colon is hanging cleared out sign, and I am starving. I have my phone charged up and my old 3g with games on it too play. The weather was a cold snowy February and Mother Nature didn't get the note that I was going to the hospital today, it's freakin -15c and the winds were just a bitch, snow was on the ground and the trees were bare, and with my first step down the steps of the front porch I went for a little ride, as I went for this ride I was thinking ah crap I forgot to salt the stairs and I am about to bite it, thankfully I didn't bite it but it was close. I got into a semi warmed up car with a bit of heat, tossed the seat belt on and we were off, thankfully the road had been plowed the night before which made it nice and easy to get out. While being driven there my nerves started to get to me and I am thinking ok what is this going to be like, what is going to happen, am I just going to go in and get it done, can I watch? will something happen and I will be in Hospital for a while? Shit when I get a some food I want to eat. So the drive goes without a issue thankfully and I can see the hospital in the distance, as we drive along side of the hospital you can see the loading door and garbage drop boxes, the side of the building is covered in a red brick with a green roof and siding hanging over the edge creating shade over the delivery doors. We turn into the hospital and you see a big sign on the left that says hospital and under the English, hospital spelled in French with a parking lot to the right of the entrance and straight ahead is a multi level parking garage. As I got dropped off at the Hospital drop off area I looked around and all you can see is windows around the front of the hospital.
I walk through the doors of the Hospital and see a sign, please turn your cell phone off. Yah good luck with that, tests have proven that you don't need to turn them off and how would doctors be able to carry their cell phone around with it on and working if you needed to turn it off. So good luck with that, now mind you this hospital has thought of people like me and it is a total dead zone except for certain parts near the windows. I can just see me walking into a person's room saying; sorry person I don't know you and not here to visit but need to stand by your window to make a phone call and jump on twitter to update my status, but I hope all is good with you are you are out of here soon. So walking into the hospital I look around and phones to my right and a ceiling of gold keys to my left with seats for people to talk and there it is Tim Hortons and as the smell of the coffee filled my nose and progressed into my lungs and then hit my blood all within about 30 seconds and I wanted a coffee so bad, it was almost like when I was smoking. As I passed Tim Hortons I am thinking yep I'll see you later and you will have a fresh pot ready for me. I keep walking down the hall almost hitting my head on the ceiling disadvantage to being tall, about 30 feet down the hall you can see the out patient room. I walk into the out patient room as I turn my head straight my eyes focus and there is it again, please take number, so we meet again machine, this time I have come prepared a with a little screw driver to undo you and with not that many people in the room I should be able to get away with it. I search through my pockets and nothing, I am thinking noooo, you have won round 2 machine, next time I will get you, this time I will bow down and take one of your numbers but not without a hitch and I elbowed the machine as I passed it, only injuring my elbow and making all of 5 people and about 3 nurses focus all there attention on me, take a number machine 3 me 0. I barley have enough time to sit down, and my number was called. This time it was different and I had a nurse that was a bitch and gave me a hard time. She took my info and took her sweet time to enter everything, name, number, address, doctor, she proceeded to give me my nifty bracelet and paperwork for the next room but instead of saying nicely were to go she told me firmly were to go with pointing her index finger on her right hand forward and her voice.
So I entered the room and with some of the laxative still in me I needed to find a bathroom quickly or my clothes were going to have to substitute as a toilet, yuck that would really make my day... uh nurse do you have any change of clothes I just shat myself. I opened up the bathroom door and thankfully it was empty. I got my pants off faster than Clint East Wood pulls out his gun at a duel. Flush ah much better I washed the hands then kept walking into the G.I. sweet. Same place as before with white walls and very abysmal, no cheer and allot of nothing going on. I went to the desk and gave over my paper work, it was the same nurse and thankfully she didn't remember me from what I could tell but I sure remembered her. She asked me my name, number, address, and do I have somebody to pick me up, I said yes and gave the number this time avoiding that is was my mom, I swear this time she was a little bit interested, now mind you I was starving, tired and in not the best mood so I was definitely reading more into the situation than I should have been. This time there was no bed ready for me so I was told to go grab a seat. Grab a seat? Sure not a problem, I stroll into there so called waiting room which was a walk way with seats on one side and a wall on the other, with a double set of doors at the end of the hallway that leads to a hallway in the hospital, the walls were painted a form of lime-sh green I look around and no tv nooooooo, no maganiezes nooooooooooo, no tv and no magazines make me go something something... ? Then I remember my phone and thinking yes this sweet. For some reason sitting here is like a magnet for people too stare at you, I swear every person that walked through that area looked at me. So as I am playing some crosswords and time is ticking by I would say about 30 minutes have passed and my name gets called, I am thinking yep ok time to go in, but yah, no, you think I would have learned this by now, they called me because they have a bed for me except this time it was the end room and I got the window seat, Yes! As I walked to the bed I asked the nurse how long the wait time is but she didn't know exactly and didn't want to give me a number just in case she was wrong. As I walked into the area with the bed I was very pleased that I got the window view as last time I saw it and really wanted that view. The nurse followed me in and told me to put on the hospital gowns and take everything off expect for my undershirt. As the nurse pulled the drapes across my now new home for the next hour or so. I get dressed into the very fashionable hospital gown and laid down in the bed, got my position right and pillow right and about 10 minutes later a nurse came up to me and hooked up a i.v. prep then checked all my paper work and got me to sign it, ah man I have to get up to do that and I just got comfy that sucks. So I am lying in the bed my stomach has gone on strike and my brain is begging me for something to do. Then a huge amount of pain hits and I almost call over the nurse but was able to avoid it. Between my games of crossword, Tetris and looking out the window I lost track of time. As I looked at the clock I was shocked a hour had already gone by. I started to think hmm I wonder if I am next, then think hey wait a minute the nurse hasn't been by in a while to check up on me. Then out of the corner of the drapes I see a person being wheeled out and then see the nurse get some new paper work and hear the guy in the corner there, There are two different corners in the waiting room so seeing her walking towards me was a relief and I started to get excited.
I get wheeled through the corridor and get put into the same room that I had my scope in and trust me that is still fresh on my mind even tho it is about 2 years later, and as I get turned around I see the back of a nurse that is setting up everything for the procedure, as she turns around I am thinking no fucken way you have to be kidding me, it's the same nurse I had for my scope, and my little buddy remembers that all too well. This time I told my little buddy nothing is going to happen and I will chop you off if you even move, I know idle threat but it worked at the time. So she started to ask me my name and procedure and then she said wait have you been here before, oh no does she remember what happened will I always been remembered as that guy? Wait no I can't be I was able to stop it from happening. Then she asks did you have a scope here before? Phew! I answers yes I did have a scope here before and then we get to chatting, this time I took a better look at the equipment that was going to be inserted inside of me. Then looked around at the machine and caught her eye, I tried to keep my heart rate down but I am pretty sure that she must have seen it increase and then started talking with me. But this time I swear she was flirting with me, thankfully my little buddy didn't take notice right away and within a couple minutes my G.I. walked in. I didn't remind him of what happened last time. I was told to lie on my side and listened to the doctor say that I she needed to use a lot of stuff to make me sleep. I watched her put something into a needle, as she was putting the needle into the i.v. hole I felt something that I never thought I would ever feel and boom I was out. I awoke to my doctor saying my name and showing my inflammation which was pretty cool too see. the G.I. was explaining that it was either damage from the c-diff or Crohn's disease and he said it looks like Crohn's disease my heart sank I just wanted to break into tears. And that was it for my procedure and as I was wheeled back I was a defeated person and in a really bad place for the next couple days. I talked to a nurse about it and told her and she said it's one of two things, but with the pain I was having I knew it was Crohn's disease. I was lying in the bed and couldn't believe what I had just seen or what I was told, then the tears started to flow, I guess I passed back out and was woken by the original nurse that gave me my bed, about half hour later I was out of there, I never did stop for that coffee I really wasn't in the mood for anything after that. It took me about a hour or so to be able to eat anything after the news.
There is more to come, the day of the diagnoses and drugs lots of drugs.
Thanks for reading and letting me share a big point in my life
Shane
My First Colonoscopy
Well the big day has come and I am kind of excited, kind of not, a little bit of anxious, the prep is done my colon is hanging cleared out sign, and I am starving. I have my phone charged up and my old 3g with games on it too play. The weather was a cold snowy February and Mother Nature didn't get the note that I was going to the hospital today, it's freakin -15c and the winds were just a bitch, snow was on the ground and the trees were bare, and with my first step down the steps of the front porch I went for a little ride, as I went for this ride I was thinking ah crap I forgot to salt the stairs and I am about to bite it, thankfully I didn't bite it but it was close. I got into a semi warmed up car with a bit of heat, tossed the seat belt on and we were off, thankfully the road had been plowed the night before which made it nice and easy to get out. While being driven there my nerves started to get to me and I am thinking ok what is this going to be like, what is going to happen, am I just going to go in and get it done, can I watch? will something happen and I will be in Hospital for a while? Shit when I get a some food I want to eat. So the drive goes without a issue thankfully and I can see the hospital in the distance, as we drive along side of the hospital you can see the loading door and garbage drop boxes, the side of the building is covered in a red brick with a green roof and siding hanging over the edge creating shade over the delivery doors. We turn into the hospital and you see a big sign on the left that says hospital and under the English, hospital spelled in French with a parking lot to the right of the entrance and straight ahead is a multi level parking garage. As I got dropped off at the Hospital drop off area I looked around and all you can see is windows around the front of the hospital.
I walk through the doors of the Hospital and see a sign, please turn your cell phone off. Yah good luck with that, tests have proven that you don't need to turn them off and how would doctors be able to carry their cell phone around with it on and working if you needed to turn it off. So good luck with that, now mind you this hospital has thought of people like me and it is a total dead zone except for certain parts near the windows. I can just see me walking into a person's room saying; sorry person I don't know you and not here to visit but need to stand by your window to make a phone call and jump on twitter to update my status, but I hope all is good with you are you are out of here soon. So walking into the hospital I look around and phones to my right and a ceiling of gold keys to my left with seats for people to talk and there it is Tim Hortons and as the smell of the coffee filled my nose and progressed into my lungs and then hit my blood all within about 30 seconds and I wanted a coffee so bad, it was almost like when I was smoking. As I passed Tim Hortons I am thinking yep I'll see you later and you will have a fresh pot ready for me. I keep walking down the hall almost hitting my head on the ceiling disadvantage to being tall, about 30 feet down the hall you can see the out patient room. I walk into the out patient room as I turn my head straight my eyes focus and there is it again, please take number, so we meet again machine, this time I have come prepared a with a little screw driver to undo you and with not that many people in the room I should be able to get away with it. I search through my pockets and nothing, I am thinking noooo, you have won round 2 machine, next time I will get you, this time I will bow down and take one of your numbers but not without a hitch and I elbowed the machine as I passed it, only injuring my elbow and making all of 5 people and about 3 nurses focus all there attention on me, take a number machine 3 me 0. I barley have enough time to sit down, and my number was called. This time it was different and I had a nurse that was a bitch and gave me a hard time. She took my info and took her sweet time to enter everything, name, number, address, doctor, she proceeded to give me my nifty bracelet and paperwork for the next room but instead of saying nicely were to go she told me firmly were to go with pointing her index finger on her right hand forward and her voice.
So I entered the room and with some of the laxative still in me I needed to find a bathroom quickly or my clothes were going to have to substitute as a toilet, yuck that would really make my day... uh nurse do you have any change of clothes I just shat myself. I opened up the bathroom door and thankfully it was empty. I got my pants off faster than Clint East Wood pulls out his gun at a duel. Flush ah much better I washed the hands then kept walking into the G.I. sweet. Same place as before with white walls and very abysmal, no cheer and allot of nothing going on. I went to the desk and gave over my paper work, it was the same nurse and thankfully she didn't remember me from what I could tell but I sure remembered her. She asked me my name, number, address, and do I have somebody to pick me up, I said yes and gave the number this time avoiding that is was my mom, I swear this time she was a little bit interested, now mind you I was starving, tired and in not the best mood so I was definitely reading more into the situation than I should have been. This time there was no bed ready for me so I was told to go grab a seat. Grab a seat? Sure not a problem, I stroll into there so called waiting room which was a walk way with seats on one side and a wall on the other, with a double set of doors at the end of the hallway that leads to a hallway in the hospital, the walls were painted a form of lime-sh green I look around and no tv nooooooo, no maganiezes nooooooooooo, no tv and no magazines make me go something something... ? Then I remember my phone and thinking yes this sweet. For some reason sitting here is like a magnet for people too stare at you, I swear every person that walked through that area looked at me. So as I am playing some crosswords and time is ticking by I would say about 30 minutes have passed and my name gets called, I am thinking yep ok time to go in, but yah, no, you think I would have learned this by now, they called me because they have a bed for me except this time it was the end room and I got the window seat, Yes! As I walked to the bed I asked the nurse how long the wait time is but she didn't know exactly and didn't want to give me a number just in case she was wrong. As I walked into the area with the bed I was very pleased that I got the window view as last time I saw it and really wanted that view. The nurse followed me in and told me to put on the hospital gowns and take everything off expect for my undershirt. As the nurse pulled the drapes across my now new home for the next hour or so. I get dressed into the very fashionable hospital gown and laid down in the bed, got my position right and pillow right and about 10 minutes later a nurse came up to me and hooked up a i.v. prep then checked all my paper work and got me to sign it, ah man I have to get up to do that and I just got comfy that sucks. So I am lying in the bed my stomach has gone on strike and my brain is begging me for something to do. Then a huge amount of pain hits and I almost call over the nurse but was able to avoid it. Between my games of crossword, Tetris and looking out the window I lost track of time. As I looked at the clock I was shocked a hour had already gone by. I started to think hmm I wonder if I am next, then think hey wait a minute the nurse hasn't been by in a while to check up on me. Then out of the corner of the drapes I see a person being wheeled out and then see the nurse get some new paper work and hear the guy in the corner there, There are two different corners in the waiting room so seeing her walking towards me was a relief and I started to get excited.
I get wheeled through the corridor and get put into the same room that I had my scope in and trust me that is still fresh on my mind even tho it is about 2 years later, and as I get turned around I see the back of a nurse that is setting up everything for the procedure, as she turns around I am thinking no fucken way you have to be kidding me, it's the same nurse I had for my scope, and my little buddy remembers that all too well. This time I told my little buddy nothing is going to happen and I will chop you off if you even move, I know idle threat but it worked at the time. So she started to ask me my name and procedure and then she said wait have you been here before, oh no does she remember what happened will I always been remembered as that guy? Wait no I can't be I was able to stop it from happening. Then she asks did you have a scope here before? Phew! I answers yes I did have a scope here before and then we get to chatting, this time I took a better look at the equipment that was going to be inserted inside of me. Then looked around at the machine and caught her eye, I tried to keep my heart rate down but I am pretty sure that she must have seen it increase and then started talking with me. But this time I swear she was flirting with me, thankfully my little buddy didn't take notice right away and within a couple minutes my G.I. walked in. I didn't remind him of what happened last time. I was told to lie on my side and listened to the doctor say that I she needed to use a lot of stuff to make me sleep. I watched her put something into a needle, as she was putting the needle into the i.v. hole I felt something that I never thought I would ever feel and boom I was out. I awoke to my doctor saying my name and showing my inflammation which was pretty cool too see. the G.I. was explaining that it was either damage from the c-diff or Crohn's disease and he said it looks like Crohn's disease my heart sank I just wanted to break into tears. And that was it for my procedure and as I was wheeled back I was a defeated person and in a really bad place for the next couple days. I talked to a nurse about it and told her and she said it's one of two things, but with the pain I was having I knew it was Crohn's disease. I was lying in the bed and couldn't believe what I had just seen or what I was told, then the tears started to flow, I guess I passed back out and was woken by the original nurse that gave me my bed, about half hour later I was out of there, I never did stop for that coffee I really wasn't in the mood for anything after that. It took me about a hour or so to be able to eat anything after the news.
There is more to come, the day of the diagnoses and drugs lots of drugs.
Thanks for reading and letting me share a big point in my life
Shane
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