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
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