What we Hate Too Hear from the Twitter Gang

Hi Everybody, today I was sitting at work and thought... hmm I would love to hear what Crohnies on twitter Hate Too Hear then write a blog about it.  If you are a Crohnie (person with Crohn's Disease) then you will relate to almost everything if not everything that you are about to read.  If you don't have Crohn's Disease and you know somebody that does or one day meet somebody. I beg of you please do not ask or say anything on this list.

This list is in the order that they were sent to me. I  want to say thanks to all my Twitter Family/Support Group for being there for almost a year now, and to everybody that contributed to this list.  If you are a Crohnie and want too add something to this list then please don't hesitat to get a hold of my on twitter @slip180 or leave me a comment and I will add it the first chance that I get. Btw I am going to do a plug here, if you are a Crohnie I suggest you pick up John Bradleys Foul Bowl, it is a must read for a new/newish diagnoses and a great read for those living with Crohn's Disease.

Together We Stand, Alone We Fall. Thank you again for all the contributions


What not to say to somebody that has Crohn's Disease from the tweeters on twitter

From:

• @trardmc: Oh yeah I have a bad tummy too oooh I wonder if something is going round!! arghhhhh
• @GYGIG: Can't you hold it?, Are you sure you don't have an eating disorder?
• @JennisGuts My stomach hurts too, must have been dinner, It's all the stress, take better care of    yourself,  Just be happy, you let things get to you too much. , Even if you didn't have Crohns you'd be a mess
• @jamietlear: congrats on eating food, oh @jamietlear well done you've eaten it all! me: I'm 28 for crying out loud!
• @aristor_cat665: you look fine, you don't look sick, why do you need to sleep so much your young & healthy
• @sandrahibbard why don't you eat curry? Why don't you drink? I know how you feel I had the runs once, You are lucky you don't put weight on
• @Pob584: Is it because of something you eat?" Yeah.....everything! You going the toilet AGAIN?" Erm, yeah!!
• @patrick_leger Can't you take a pill?" & "just use Imodium
• @deepan88 "if your ill, why arent you at home." just because im ill, doesnt mean im an invalid, let me work to earn a living, B*tch!
• @Laurie_1984: u lost weight?!lucky u!dont even have to do anything bout it!me i have to follow diets,by u come naturally 
• @pueblokc changing my diet will cure me
• @yukondiva Oh ya I had crohns one time. Ya one time is a freakin lifetime
• @JVR621: Im on SSI because my work ethic was goin to kill me. Many people say they'd love to get paid to do nothing like i do. Well you dont look sick.' 'What did you do to you this time? Just try it, its not that serious.'
• @SemiColonGirl:  my college roommates bf had it so I know what ur going thru, isn't that a Jewish disease; wish I could borrow it to lose a few lbs
• @gutgremlins I should eat better. Not eating vegetables isn't healthy. I should drink a lot of green tea. Take a lot of Vitamin D. Go to the Dr., what can you eat?
• @ rftgyhujikolp: I hate it when people say , are you going to the toilet again ? but you only just went 10 min ago
• @emmaelismom:  how lucky I was to lose my pregnancy fat so quickly. Try breast feeding a baby on the toilet bc you can't get off.
• @slip180 Oh I think I have that, I think I was born with that.  Are you sure you can eat that,  just go to bed earlier. 

As you read through the list you can really see one defining point!  Lack of knowledge of Crohn's Disease. I have noticed that people don't want to hear & talk about the disease!! I ask why? It would take any of us on this list and those that have Crohn's Disease tops 10 minutes to describe the basics of the disease. Picking up a book or searching up on the Internet would give basic knowledge of the disease. As well if you know somebody with Crohn's Disease or are a family member I would advise to pickup a book or read on-line. I might stand alone saying this, though I appreciate that you are trying to help and be there for me, but if you don't know what you are talking about then there is no point saying anything. The trying to help part is well in the best way to say it, ticking us off.  75% of the responses either started with or ended with "I hate this" and most lists could have kept going for weeks. With basic knowledge of this disease this list would not be here or would say differnet stuff. And the day we get to partialtiy that then we have reached a breaking point. One day my friends one day.
Thanks for your time to read this. Thank you for all the people that have contributed to this without you this list would not have been possible. Please keep checking for more updates as I get more I will update.

Again Thanks for reading

Shane

I have fu%ken Crohn's Disease

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

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

Date with Doc

Thanks for sticking by all,  I know it has been a bit since I have blogged but I really haven’t been feeling up to it

So where were we,  Oh yes Cdiff and what a bitch it was.  So during the time of having C-diff my mom said that I should call my G.I. and get a apt and make sure that there was no damage done to my G.I. tract.  My thoughts were hell no and I don’t want to see another doctor, hospital or clinic for a while, even the lab gave me the chills.  But you know moms and they can be pretty convincing and have ways to make sure that you keep care of yourself.  So I called my G.I. and asked for a appointment but he said that he needed a referral letter from my doctor and thought I while I was on the phone with his secretary I could setup a appointment for 2 weeks to that day. Now at the time I was talking to his secretary I am thinking yes this is great I have to go to my other doctor to give me a referral letter and then have to wait for a bit even tho I have already set up the appointment with my G.I.. Yah I was wrong about that one.  I called Dr G. and got a hold of her assistant K. I am going to pause here and go back way in time,  since I was a kid this person has known me from my original family Doctor to the Doctor that I have now, she new my Grandmother, Grandfather, my Mom,  and my Sister till she went and got another Doctor. So K knows all about the good stuff and the bad stuff and is one of the nicest persons that I know.  So let's get back to it.  When I called K I told her over the phone that I needed a referral for my G.I.  as well as why I needed it, she then asked me the name and when I needed it for and while she was asking this stuff I am thinking yes perfect maybe my doctor would want to see me before hand to make sure the G.I. visit was warranted,  but again I was sorely wrong on that one, I got the ok and I think it took all of 3 hrs to get the referral to my G.I..  That's what you get with a good doctor patient client relationship.  

So not much really happens within the next couple weeks except for work, but one troubling symptom is starting to come up.  That pain that would come and go is becoming permanent and getting worse at a slow but steady pace, the pain is exactly near my appendix and hip bone which with research showed to be my Ileum but now there are a couple other places that the pain is popping up one place is near my belly button and on the left side about the distance of my hand from belly button and just a bit lower than my belly button. As most people would be I am now starting to get worried, I could actually feel the food passing through some places in my gut.  The pain caught me off guard and if that wasn’t the only thing that was new.  Some foods that was never a issue would cause pain and would go through me as fast as a super bike accelerates and some foods were no longer safe. Thankfully at this time work was pretty slow and I was able to hide the pain. 

The day finally arrives 2 weeks from the call. I made to my G.I. and I am sitting in the waiting room with my mom sitting beside me. I am on time for my Apt. my G.I. not so much 20 minutes ticks by and still have not called in and I am now thinking ah uh oh shit did I mess up the time? Ah shit should I have gone to the bathroom before I came and just in case I have to go while I am in the office, thankfully I never did have to go the whole time, yes I was on time my phone agreed as I checked it twice and with the secretary once. So I hear my name called, Shane come on it, Now I am officially as nervous as the first time I went on a roller coaster without my family.  I walk into the office and grab a seat. The office was your typical office with a nice big wood desk diplomas on the wall behind the doctor with a file cabinet and with a computer monitor on the left corner of the desk with a information monitor in the middle of the desk and a cool picture of the G.I. Tract in a glass housing.  We start to talk and he asks me what's going on, I explain the C Diff and pain and want to make sure that theer was no damage done.  At that point things started to speed up quickly and things just started to fly around my head like the road runner escaping the Coyote. He got worried when I told him about the Cdiff, no healthy person should be able to get Cdiff in a week and have the diarrhea and pain afterwards. So he said let's have a look but before that lets talk about computers, smartphones and anything technical.  I am thinking oh sweet this guy is as much as a teckie as I am and so are most of his patients.  The shame was at the time I really didn’t show much enthusiasm as I wanted to but the way I was feeling said it all. So he said let's get you a Colonoscopy and see what is going on. As he was explaining the Colonoscopy I am thinking a Colon what? You're going to do what with that and were with that? Oh hell no that is exit only! Yah that didn’t stick. I was checked out really quick and we shook hands.  

I was able to get a cancellation appointment for 2 weeks and it should have taken 3 months to get the Colonoscopy.  He gave me a sheet for prep and the date and time to be there, as well as setting a follow up a for 3 months down the road and I was on my way. 

Thanks for reading and keep checking for the Colonoscopy and finding the pain in gut next installment

Shane

Some Pain with cdiff on the side

Hi thanks for reading, I hope you enjoy.

I am now 32 and stress is at it's maximum but this time no smoke's or weed to get me through it, I finally did it.  I have now been quit smoking for  a year three quarters of a year and weed for about a year and a half, I am starting to second guess everything that I am and what I do, which is good because I was a mess before.  I am now working a steady job and everything seems to be falling into place.

At this time I am going to change the name of the place that everything happened at and names of people.

The time of year was around December and the place was starting to get really stressful.  The people that were in charge were Tiffany & Cesar, and they were starting to put mounds of pressure on me to learn a requirement of the place and had to have parts ready for people that were interested in the parts, due to the pressure I was slow and it was the busiest thing you can do at the place at the busiest time of year. Tiffany was the worst part of the pressure she pushed me too do something faster and when I was not able to keep to her standard she would then push me even harder.  If I was still slow or messed up a process then Tiffany would verbally bash my skills in front of people attending the event and my co-workers. The bashing would cause massive anxiety and stress. I thought I was going to have to resign from the place. With the pressure that was put on me at the time I started having a mild pain in my gut that wasn't constant and was in a different place than my original pain, this pain was more in the middle of my small intestine so I didn't really think about it twice.

About month later into the place my body started to show signs of the constant stress and I started to have big pains in the middle of my small intestine and near my appendix were the pain first surfaced when I was younger.  I thought I had a ulcer from stress and I still had those little bumps on my gut so again I chalked pain up to those little things . I also heard that stress can cause pain and that the pain might have been a way that my body was handling the stress.
So here we are the busiest time of year right around Christmas and my pain started getting a lot worse and very unpredictable. I knew I had a issue when I had my co-workers asking me, are you ok? But I kept pushing harder and harder and my body finally said enough is enough and I dropped to the floor in so much pain I could barely move, picture a slinky dropping that one stair and the laughing at you when it stops, that's what I looked like going down. Thankfully only Cesar saw me hit the floor and sent me home to rest. At this point I knew it was no ulcer or those bumps on my side. And if you have been reading the other blogs this will come as no surprise to you, that I still didn't listen to my body and never went to the doctors. I went back after the weekend ready for a hard day in the place and thankfully Christmas had passed which meant I had passed the busiest time of the year. With some of the pressure gone and Tiffany taking a 2 weeks vacation, it felt like a new place.
      About a 3 days after Christmas I was helping Britney clean up the area of the place and there was a bit of something on the floor, with the speed I walk I slipped and took flight, at the time you can call it Divine intervention and what happened that day proves to me everything happens for a reason. So when I took flight you probably could hear Boarding Air Shane Please Have Your Tickets Ready.  I my feet slipped from under me and I went about 4 feet high landing on my back and on my elbow thankfully the only part of me that was hurt was my elbow.  I cleaned my elbow and taped it up, but did I leave the place?  Nooo of course not I still had a hour left and I was going to finish.  So I went home thinking it was just a fall and a good tissue bruise I had cleaned it and taped it nothing to worry about right? I was wrong so I never went to the clinic or doctors.

I woke up the next day and did a full day at the place and went home. Two days after the fall I woke up my elbow was killing me and I knew something was wrong.  I decided to head to the clinic that day but the issues was it was the day before New Years and I also went in the morning because of those it was busy thankfully a coffee and my phone passed the time. The clinic office was filled with people in every seat from Elders to Babies as well with plenty of sick people that I avoided like the 401 on a Sunday evening during cottage season. The room was about big enough to hold about 50 people with 3 rows of chars and some on the back wall with the Nurses station in the middle of the clinic area and the actual doctors.  Thankfully the actual doctors office side was closed but the chairs were available and open for use. The waiting rooms looked like your average waiting rooms, white wall's purple trim with purple chairs but with nice painting and magazines that got old in about 20 minutes. As I was waiting for the doctor I was trying to piece the pain in my gut together but still couldn't find a link. I got called into the room so the doctor could  see me and looked around, same paint as out in the waiting room with purple cupboards. When saw the doctor he looked at my elbow touched it and said does that hurt, I said yeah in a tone of well duh you just poked my sore elbow. Thinking does a punch in the face hurt.  He explained I had an infection and that I was going to be given antibiotics for it and a cream for it. Fucken damn antibiotics did more harm than good 2 days after taking the antibiotics I started to get diarrhea after the 2'nd day and I thought it would go after the week of antibiotics, well it didn't and it turned into very bad diarrhea and stomach pains.
Because of that I was off for about 3 months and after 3 weeks off of work my doctor found out what it was. Dr.G was nice enough to call me on her day off which was pretty cool and told me I have c-diff and to pick a prescription for Flagyl at her office. I had tried the brat diet in that time as well as only rice and nothing, it kind of worked for about a day but then the diarrhea would come back. I started to drink Gatorade for the electrolytes and salts in it, but if you don't know as I didn't at the time it just aggravated my diarrhea which was the last thing I wanted. I was basically living off of water and soup broth, which because of that time I will never eat again. I would feel pain and nausea now and then and was so weak at points, getting out of bed was futile. If you have ever have had cdiff you know what I am talking about, if you don't then please stop reading and skip down a couple lines if you are squeamish. By week one I could almost feel the bacteria multiplying you could feel it inside of you I was a factory for the cdiff and my gas told you that, about 2 weeks in I would go to the bathroom and see some of my insides dropping in the toilets just white little parts sometime as small as a grain of sand and sometime was as big as a tictac candy,  if you leave cdiff long enough it destroys your colon and guts if I remember that properly.  
OK fine to read again  I lost about 20-30 pounds. C-diff or better known as Clostridium difficile is a super bug/bacteria that is known to kill some people in hospital, and people with compromised immune systems.  And it was nasty I always felt sick and anything I ate just went through me,  I basically stopped eating, I couldn't take running to the bathroom every 15 minutes anymore. There really isn't much I can say about cdiff you have to have it to know what I am talking about but if you research it then what you read it dead on. By now about 3 month have passed, the place has gone into new ownership and my placement at the place is still safe yeah!  I was staying in communication with the place the whole time and they didn't know what cdiff was. And they wanted me back.  I was told by my doctor that with how weak I was that it was going to be a while before I got back to work and regular life.  I tried going back a bit early but couldn't do it and it took another 2 weeks after that thankfully the new owners and mangers were really cool about it all.  I started back at the place for a month of half time and then back to full. During while I was sick I looked up on the Internet about cdiff and that it was probably caused by my antibiotics and I had come in contact with cdiff at sometime before. And that is about everything I can remember, if  I can remember anything I will make a note and toss it in here

There is still more to come I meet up with my G.I. after 2 years and find out.... well you will just have to see

Thanks for reading
Shane

My first MRI.

If you are just starting with this there is a back story which is my second blog,  I suggest that you go back and read that or after reading this blog.

Hi I hope you enjoy the read.

My First MRI. M.R.I stand for Magnetic resonance imaging and if you have Crohn's then you will know this machine all too well,

A Nice Winter day,  it was damn cold tho and I was excited about using the same machine that some of my favorite athletes use to diagnose problems.  I walk into the hospital wreaking of cigarette smoke and the attitude of a  25 year old stoner, I went into the Diagnostic Imaging of the local hospital and check in.  I am sitting in a waiting room that was square with green walls with a TV in the left corner of the room and seats on all the walls with some in the middle and a pair of them not far from the nurses window,  with semi comfy chair with orange cushions most without armrests.  I walk up to the nurses desk and hand in my requisition,  I was greeted by a very nice nurse that took all my info down and because I was born at this hospital I didn't have to worry about all my info being heard.  They had a cool holder for the folders,  I was almost like book shelves that could be opened by twisting a handle.  I was told by the nurse to wait and somebody would come get me.  I grabbed a seat and looked at the t.v. yes no news, nooo daytime TV and again the magazines were torn and missing pages, thankfully I didn't have to wait long.  With my name being called I am thinking yes time to get this done,  then I was led down a hall way about 15 feet from the waiting room and was told to wait here,  ah fuck you have to go be kidding me,  I am playing the musicale chair waiting game.  So I look around the hall, around me is green brick,  not fake brick but real brick,  1 seat beside me and 1 across from me,  I look down the hallway about 20 feet and see another set of chairs one of them being occupied by a lady getting prepped for a ct scan I have great hearing didn't mean to listen in, about 10 feet from there is another hallway that is going towards who knows where. Being there is no clock and me on my phone I thankfully I lost track of time and before I knew it somebody walked up to me in a nurses outfit and asked my if I was Shane, I answered yes and she said follow me.  I got up from that seat and wished that hallway a kick in the pants, not knowing that I would be back again in the very near future.

I am now following this nurse into the MRI ready room and as I look around there is a glass entrance to the room and lockers to my left painted rusty yellow and across from those dressing rooms.  The nurse asked me to sit down and we went through a checklist,  everything was passed and I was giving a waver, This is when my mind went wow hey wait a second a hospital is giving you a waver,  what are my legs going to get ripped off me and dance the hoochie coochie in front of me?  The nurse kindly sat down with me explaining what it said and that it was just standard procedure,  fuck you standard procedure I am thinking,  I want the fuck out of here, but I never left and signed the paper. 

The nurse handed me 2 gown and said change in there and select a locker,  so as changed into nothing but 2 gown and my underwear I had to take off all my jewelry, chain, and ring.  I walk up to the locker and it states we are not responsible for lost and stolen items, ok no worries but if my locker is broken into I am going to have somebody's head.  I walk into the waiting room for the MRI patents not much bigger than a city bus width and it holds maybe tops 10 people.  White walls and a nice white floor,  there wasn't a heck of a lot of light in the room but oh well, didn't have anything to read.

About 5 minutes later the nurse walks in and sets me up with a I.V.  and a list of music that I can listen to, I chose the Barenaked Ladies that day, the nurse then states here is a warm blanket it gets cold in here and you wait is about 30 minutes unless a emergency comes in and then it will be longer,  I am thinking ah shit the damn waiting game again and my phone is almost out of battery. then I hear the most beautiful sound in the world,  a t.v and I look around the room and a remote, yes this is great. The TV was small about 18 inches the picture was a bit fuzzy but I didn't care,  i could change the channel and I was happy with that.

So about 30 minutes pass and the nurse comes to get me.  I am looking at a door that says warning radiation do not enter without protection, do we enter, of course we do,  I later learned that it was only when the machine was active did you have to worry. 

I walk into the MRI room,  this place was huge and the machine was massive,  the machine colour was white and the room was a dark blue shaped perfectly square with a counter at the end of the wall just as you enter right across from you, as you walk in you look to your right and you can see the control room with tinted windows my guess it about 15 feet long by 5 feet high window.  The machine was awesome,  my childhood come true I was in Star Trek and that machine was about to be used on me. I was led to the MRI machine by the nurse and another nurse I hadn't met till now and they explained that I at one point was going to be inject with a dye right near the end of the MRI, I was laid down and hooked up,  at this point I stated to get a bit nervous,  but I was able to chill out and relax, the nurse put some headphones on me that looked to be from the 60's  gave me a clicker just in case any issues press it following those instructions I was being slid in very slowly ,  I was told to be very still and as I look around all I see is a white round wall with a red line going down the center,  if I was claustrophobic I would have been fucked,  thinking now I see why my doctor asked me I was even a bit claustrophobic.

The start of the exam,  as the voice of the nurse came over the headphones she said to breathe properly unless told not to breath and don't hesitate to say it there is a problem. With less than 30 seconds of silence the Barenaked Ladies get pumped into the headphone and we were off.  I was told to let all the air out of my lungs then the machine started buzzing, then I hear breath, breath. This goes on for about 20 minutes and then I was told time to take a break,  thinking perfect I could use a smoke, ha! I still don't know why I thought that, the break was just to give my lungs a chance and then the real fun began after that.  So about 10 minutes after she said ok breath normally then the machine started going nuts, hearing noises then vibrations,  crap I thought it was going to come down onto of me.  Then I hear ok 30 minutes to go and the dye was going in,  I might feel some coldness, my thought was ok no worries, then I get the instructions to stop breathing, by now I am thinking you know I am a smoker right?  My lungs are about to go on strike,  then I hear breath,  ok I start breathing again then she said ok here is the big one,  I had to let all the air out of my lungs and not breath which felt like 10 minutes and to boot the machine started to get really warm,  I thought that's it I am going to die in the machine,  it was probably about 20 seconds but still it sucked,  and then it went a couple more times,  with the heat of the machine I was ready to take a nap, then the next thing I knew I was being slid out and it was over.  I was then unhooked and told to go change and I was done.  I tried to get the results but they wouldn't let me know.  I walked back to the locker and got changed.  Thankfully all my stuff was there and then proceeded into the hallway which led to the other hallway that led me out of the area, but I had to see were that one went so I walked down the hallway and ended up on the other side of emergency,  thankfully I could find my way back and then followed the signs out of the hospital for a nice smoke, well at the time it was a nice smoke, but more on that another time.

Note:  Taken from and so it continues,  if you have read that then you don't need to keep reading

I was sitting in the doctors office and this time I was told I might have the b C... so need lees to say my smoking went up. So my Doctor said it is time to get a specialist involved.
At this time my doctor refers me to a G.I. it is a 3 month waiting list to see this guy but I got in quicker. The day of my appointment I was very nervous, scared and worried, but also very inquisitive.
So I am going in thinking I am about to be told I have cancer (I had prepped myself for this, before I was told I didn't sleep all that well and crying was becoming a constant) my G.I told me that I have a Open Bile Duct (2'nd sign of big issue) and Fatty liver (3'rd sign of a big issue) So I am thinking a fatty liver your liver can get fat blew my mind. Ya no Cancer, then he gave me bad news my Liver enzymes are off the chart and we need to get them down.
So I described my life medical history, history of food, yes I heard it from my G.I. also. The G.I said he wants to do a Scope.I am thinking yes something is being done lets find out what this is. A quick checkup was done.


Thanks for reading still lots more to come

Shane

The meeting of the scope and me

Thanks for stopping by, I hope you enjoy.

Here we are.  I did the prep and that was no food for 12 hours, My memory is a lot better by now,  my pot smoking has gone down.  I was getting tired of always being stoned,  even going to Christmas with the Family while I was stoned and stunk like it as well. That must have had to be one of the lowest points in my addiction. I still kick myself for doing that and I know my Uncle knew I was stoned
So back to the story.  I walk into Out Patient care and the room is filled with patients and there right in front of me in a packed out patient room was the meanest,worse, horrible thing I have seen in a while! (can you tell I didn't like it?) A sign that said please take a number, too this day I still think they do it to piss patients off, it's almost saying ha fuckers we have the control and there is nothing you can do about it. Heck I swear it was laughing at me as I took that number. I know that it is easier than a line and to make sure nobody cuts line. But still I hate that damn take a number tickets.  The people that made those must have hated the world and wanted to get back at everybody in it. Now lucky for me there was a t.v in the room,  the bitch was it was on a news station. The magazines were boring and most were missing pages. The room was a teal blue painted wall with windows in the front.  Hmm wonder why they had the windows, maybe just in case a fight broke out over the numbered tickets?  
So as I am watching news and hear Number 37 being called, I look at my ticket hmm number 40. As I brought my head up I wondered if I can pull a Beetle Juice and get somebodies number.  I never did take somebodies number but it's not like I didn't think about it,  I just wouldn't want my head shrunk. I swear that clock ticked backwards in time. Then as they called number 39 my first thought is yeah they skipped a number. My second thought after that was oh shit are they going to skip my number? Everybody in the room starts giving each other the evil eye, you would swear there was a prize for whoever has the next number. Boom number 40 was called and I jumped out of my seat. I promptly sped to the counter expecting too get rushed by the 70 year old beside me. As I walked up and handed over my health card I got checked in and got a nifty bracelet and paper work.  My thoughts at that time were: yes this is it 10 minutes and I am done and going home. Yeah that didn't happen,  the waiting had just began.

I enter the G.I, suit of the hospital and look around. A drab and uninspiring place with white walls that had blue paint half way up the walls and windows on the far side of the room.  One counter for all the staff and a phone that never stopped ringing. All the people there were almost double my age if not older and were all patients of my doctor. As I see my GI this amazingly beautiful nurse walks in front of me grabs my paper work asks me do you have a ride? I said yes my mom is picking me up how deflating a beautiful nurse and my mom is picking me up, what am I in grade school?  She asked is this the number that she can be reached at. She then asks me my name, my birthday, and age.  I am thinking wtf it is all in front of you,  I soon realized that it was to check that it was me.
So the nurse put me into a bed and said change into this and leave only your underwear on.  In retro spec I wish I had read The Foul Bowel by John Bradley, I would been at least semi prepared for the wait and what was about to happen. So 10 minutes go by and I see a nurse walking towards me I am thinking yes lets do this. Then she turns to the bed beside me and says Mr. Johnson? He replied yes, you are here for a colonoscopy? He said yes and as he was getting wheeled here I am thinking lucky bugger. More time passes and I am starting to wonder when I am going to go in and get the scope. A Nurse comes up me and puts and i.v. into me and said this is for you to go to sleep!  I am now thinking hey wait a minute last time I was under I puked on the side of my moms car when we were driving home. Research stated they used to much of the stuff that knocks you out. So now I started to get worried. By now 20 minutes have gone by and I asked the nurse so when am I going to go in to the procedure. The nurse said there is about 3 to 4 people ahead of you and that equaled about a 40 minute wait. That sucked hearing that, but thankfully I had brought my phone and it had games. I was so engrossed in a good game of Tetris I didn't notice the hour had gone and it was time to go it. The nurse asked me my name, birth date and procedure.  Following those questions I was wheeled into a corridor that went into a area that led into almost a round area almost a half stop sign. With 3 doors, one at right ahead of me and the slightly to to left one to the right which was parallel.  I was brought into the most left room.

Here I am in the room,  lying there looking at the ceiling and no were to go and nothing to do. The lights were white bright, and the ceiling was white. I looked around and I see white walls white cupboards and a spotted floor. My next thought was, oh shit I have died and I am in heaven. I then look to my upper left ohh a monitor, I follow the cord oooh a machine, ooooh electronics. My first thought was not what are they and what do they do. It was I wonder if I can get away with playing with those and not get thrown out of the hospital.  Then a nurse walks in so beautiful she was so hot that if water touched her she would sizzle I mean hot. Then the first and I am thinking on boy we have a problem here my little buddy noticed her as well and have been through this before, you stay down and all if good. So she starts talking to me and going through my name birth date and procedure, and then we are both waiting for the doctor to arrive. We started talking about the weather, school,  and then she asks me what are your plans tonight,  I am thinking wow are you hitting on me?  And that is all my little buddy needed, alarm bells starting ringing in my head and I am thinking nooo down boy down,  nothing is going to happen.  Thankfully I had a couple blankets on me, and my little buddy listened thankfully nothing really happened, phew I had just averted a problem that would have never been forgotten.  Finally my doctor walks in,  he describes the scope to me and what is going to happen and what isn't. I am thinking: no worries but I was wrong and as I was passing out I never imagined in my wildest dreams was about to unfold, as the nurse injects something in me and I remember the lights going out and me going for a nice nap.  The next thing I know is that I was facing the wall when I woke up and they were still in the procedure. That's right still in the procedure and you know what that means. The damn scope is still in my throat and my body kicks into a major gag reflex and proceeds to make me choke. As I started choking, all that I hear is my GI was saying Shane relax, Shane Relax, relax? Are you crazy I'm not doing this!  This is my body and I can't stop it then boom the lights go out again, I didn't get hurt thankfully. After that I don't remember much more other than that, I never want to relive that again . Next thing I knew the I woke up and the Doctor told me that I have really bad acid re-flux (a symptom of Crohn's)

I was wheeled back into the G.I. Sweet I passed out and slept for about 30 minutes and when I woke the nurse asked me if I was ok to get up and not very groggy. Then the nurse drew the blind which sported a blue polka dot with white background and I proceeded to get dressed.  I never did take the acid pills I knew that wasn't the major problem.

There is more installments coming but that is all for The Meeting of  The Scope and Me,  my blogs will get my intense as it goes with more detail,  Last time I wrote was a while ago. Thanks for reading

Shane

And so it continues

Hi Thanks for stopping by and reading, I hope you enjoy.

And the story continues:


 I am now 25 years of age and by now I am smoking a lot of pot and I mean a lot. The pain has decided to surface around my appendix but it is becoming more constant and that means I am off to the doctors again, this time I am really questioning what it could be. Thankfully at this time I have really started to reduce my fast food diet yes I said diet because it was a diet. My doctor Dr G. is trying everything that she knows find what is causing the pain but nothing firm turns up which I found out it pretty common and then the pain disappeared as fast as it came again for about 2 months.

So lets progress to about age 26-27,  by this time I am starting to realize that there is something wrong with me but I was stoned 80% of the time so I really couldn't piece it together and those little bumps on my stomach were becoming a real good cop out of the pain.  On a side note I talked to a friend not that long ago and it he said I was always having issues with my stomach.
So I am now 27, isn't that the great things about blogs you can just jump ahead in time.  I am now starting to take it a bit easier on the weed mostly because I can't afford it.  And boom the pain hits like a vicious storm,  I was starting to go to my doctors, , hospitals and clinics just to get an answer about once a week if not more .  So I am now basically off junk food except when I was out with some friends and maybe once every couple weeks or so. By reducing the diet I came the conclusion that it is not the food. The other issue is I am now smoking almost a pack a day... anybody seeing the correlation here? Less pot, more tobacco = pain.  The shame is that I still didn't see it back then.  So back to what I was saying.  I was at the doctors and were both now thinking oh shit what the fuck is going on, we do another ultrasound. With this ultrasound I am thinking one more isn't going to hurt it found nothing last time. I finished off the ultrasound and probed the guy to see if they had found something but he wouldn't say anything.  About 3 days later I get a call from Dr.G and was asked to come in. I walked into her office stared to read a magazine wondering why I was there, when she walked in I was told to sit down and was told: Shane this time we found something and we think that it might be Cancer, my heart sunk and as I was writing this I got the exact same feeling as I did when I was told that... so needless to say my smoking went up.  My doctor said that it was nothing to worry about right now and that it is time to get a specialist involved. At that time my doctor referred me to a G.I. it is a 3 month waiting list to see this guy but I got in quicker my Dr G. pulled some strings.

   The day of my appointment with my GI, I was very nervous, scared and worried, but also very inquisitive. So I am going in thinking I am about to be told I have Cancer, I had prepared myself for this, before this appointment I didn't sleep all that well and crying was becoming a constant, I walk into a nice big waiting room that has a nice big t.v in the corner that was not on that day, with some paintings of Safari animals and what looked to be pictures of tall yellow grass. I had my phone with me and thankfully time went pretty quick. I heard my name called and my G.I. asked me to come in. My G.I asked a lot of questions about my life, medical history, history of food, yes I heard it from my G.I. also. then we talked about my results my G.I told me that I have a Enlarged Bile Duct (1'st sign of a big issue) and Fatty liver (2'rd sign of a big issue) So I am thinking a fatty liver? Your liver can get fat? That blew my mind. Then he said that I didn't have have cancer and I am thinking yeah no Cancer. Then he gave me bad news my Liver enzymes are off the chart (3'rd sign of a big issue) and we need to get them down.  He followed that up by saying that he wanted to do a MRI then said that he wanted to do a scope,  I should have listened to him when he was describing the scope, I had no clue what was coming on that day. After Dr.G trying everything in her power I am thinking yes something is being done so lets find out what this is and dispatch with it as quick as possible.  With a quick checkup at the end of the appointment I shook his hand and I was on my way.

Now I am going to pause and bring us back a bit here and say one of my other symptoms was the feeling of my throat closing,  yell at me all you want but I thought it was from allergies and yes I did go to the hospital for it and they said it looked like it was closing, they did there classic holding for 6 hours and human made adrenaline. If you have been there for it,  it is a shitty experience. The hook you up to monitors and they shove you epinephrine up you, so you get a huge shot of energy, then you have to breath some sort of mist for about 2 hours.  The mist doesn't stink but it feels weird then they keep checking you then they put you to sleep with Demerol, and the bitch was I never got a effect off it,  I heard of such a good high off of it and nothing,  it just made me pass out, what a bitch. Never got any high off T3 either or any type of those drugs.  So let's get back on topic here, we went we off topic big time.

So the day comes and.....  To be continued.

Shane

Ahhhh is I scream the world is over, well not really but my old world is over..

Ahhhh is I scream the world is over,  well not really but my old world is over..

Hi, if you're reading this you're reading my first blog post.  You might notice I will be all over the place in this blog.  I will just say random stuff that make some sense,  others no sense.  so as the title says:  The world is over well not really but my old world is over.

Lets start from about 7 months ago.
7 months ago I was diagnosed with Crohn's Disease.  If you don't know what Crohn's disease is, it's a Inflamed Bowel Disease or IBD for short.  There is no cure for it, but treatments are available. But I'm not here to talk about what Crohn's Disease is, I'm here to talk about my part, or at least this blog is here to say that. Here is the beginning of the story of my Crohn's diagnosis, I hope you enjoy.

I used to be a normal person or what a normal person is supposed to be, with nothing to worry about except for the next day and getting up for work. Around the start of my 20's this stomach pain started. The pain is hard to describe, the best way to put it is almost like a pinching and stabbing pain on the right side of my gut near my appendix.  What really sucks is that I can't pinpoint the age that the pain started. But one day I had pain in my stomach that could drop a Rhino to its knees and me being human I dropped like a leaf from a tree with a rock attached to it.  The pain was so bad it stopped me from getting up right away. Thankfully that was the only time the pain was that bad and the pain went away quickly so I thought really nothing of it at that time. Thinking about it now I really shouldn't have ignored that pain, what I should have done was gone to my doctors right away. The next time this pain surfaced I thought nothing to worry about, it was half as bad as the first time but the big difference was the pain was hanging around much longer, thankfully the pain went away for a couple months. By this time I was smoking pot on a regular basis, which to this day I still attribute to my mild Crohn's Disease. I was also a cigarette smoker at the time about half a pack a day as well as a horrible diet at the time, I almost knew the people at McDonald's by name.  I know how bad it was for me and the damage I could have been doing to myself, but I didn't really worry about it back then. Trust me I heard it every time from my Mom. The fast food diet was also one of the reasons that I thought I had pain.


Lets jump to my early to mid 20's now.  This pain is now coming back but not on regular bases but instead of being by my appendix, the pain was showing up in different areas.  Sometimes the pain was right near my appendix, and other times the pain was other places around my G.I tract. Coincidentally I  have a lot of small lumps on my body with some on my stomach that are hard and hurt.  I was attributed the bumps to what was causing the pain.  Those little spongy nodules will show up in this blog more.  So I go get the lumps checked out my doctor, Dr. G. she said let's get the pain checked out and see where the pain is coming from. The tests started by getting some ultrasounds around my gut. Many of ultrasounds later and nothing can be found, tho the ultrasounds saw the small little nodules in/on my guts and said it was nothing. Relieved at the time my thoughts were: phew dodged a bullet there.  By this time I am now smoking a lot more pot and with the increase of pot my cigarettes have increased by almost half a pack a day.  My eating habits haven't changed either,  if anything they have got worse.


And with that I will conclude this part and give you the horrible.....  To Be Continued

Thanks for reading
Shane