Moving Forward from 2012

The spring of 2012 had been my last major stay in the hospital.  The Doctor that I hated, I was seeing for help for a while.  (I know still not over that denial of having the disease.)  I was being more careful about my stress, eating and taking my medicine.  I had stopped drinking coke’s and was drinking water or unsweet tea (Yes, I know UNSWEET tea).  Then I stated to slack off my medicine again, I was fairly good having no active symptoms (or what I thought was no symptoms).  I had some problems with medicines that they were giving me, so I went back to my old Xanax, steroids.  My next bout was in September of 2015, I was only in for a week, got out and again was off and on with meds.  Although I was taking what they would consider a low-level drug to help manage it.

August, 2016 I noticed that the medicine was not working for me really. I spoke to a Doctor that I was seeing at the time about getting something different.  He was unsure what to give so he said for to go back to a GI doctor.   I made an appointment with my current GI that I use now  (He is amazing and has helped me understand the disease better.)   During my first appointment with him, he decided to move me up to biologics instead of what he would describe as med-level medicine for the disease.   This Doctor also ordered a bunch testing to be done.  MRI’s , colonscopy, bone density, biopsy of the tumor,  etc.  The MRI was because the year before in 2015 they found a tumor on my liver.  I really don’t remember that being told to me at the time but my sister remembers it.  (Again, that lovely denial working in my head.)  The tumor is benign but what the Doctor was checking for was another disease that sometimes develops with UC called PSC (primary sclerosing cholangitis -a chronic, or long-term, disease that slowly damages the bile ducts).  MRI did show thankful that was not the case but he did not rule it out completely yet.  The bone density was to check to see what if any damage of long term steroid use had done (thankfully none).   The dreaded colonscopy,  it is not so the procedure you dread but the prep for the procedure.  The prep is vile, one product, the taste is something that I can not say in polite company.   Well, the colonscopy showed that I had Pan-Ulcerative Colitis, which affects the whole colon and rectum.  The Doctor wanted to make the it was Ulcerative Colitis and not Crohn’s.   He decided to start me on Humira,  but we had also talked about the fact that I would be really to participate in clinical researches also.  It so happens that his office has a research side of the business.  I do believe that it is important to volunteer and help out if you can.  (I really wish that I had been more in tune with this earlier in my disease and not in a denial process. I do feel guilt in that fact that I could have been in a research study maybe have helped.)  So in December of last year I started getting approved to be in the research, which involved Humira.   Unfortunately, I was eventually denied to be in study due another possible autoimmune disease which still has not been fully ruled out yet.

A few of the things that I have learned from talking with this Doctor was that, some of the other things that I was feeling was related to UC.   Now I will say not all of it was UC, I’m overweight (basically always been overweight) but I was fighting constant fatigue, joint pain and brain fog.  (Working 40-70 hours a week didn’t help but I’m not that old I can still do this.) I felt old and was frustrated that I was tried all the time, but I kept going.  Part of the problem with this disease is that everyone has a different experience with it.  Yes, we have the same symptoms, some more severe than others, some have yet to experience a certain symptom or may never.  It is so frustrating for us, trying to understand the information that is out there at times is hard.  An example is I have never had the experience of  having C-diff (Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon) or fistulas (is an abnormal channel or passageway connecting one internal organ to another, or to the outside surface of the body).

So in January of 2017, I started Humira, the first upstart injections I felted wonderful.  Of course that was four injections.  For just about,  two weeks, I felt better than I had in years.  I had energy, my joints did not hurt, no abdominal pain.  Then towards the end of the two weeks it started to go away but it was time for next injection of just two shots.  Well, again I felt great again for about one week.  Then the injections went to one injection every two weeks.  I would maybe a day or two if I was lucky of feeling good.   Well, in April, I ended up in the hospital for a week, the Humira was not working.  So the next plan was to start on Entyvio infusions.  So, I did, (the Doctor did check to see if there were any research studies being conducted,) I did the initial infusion and the second one before ending back in the hospital in May of this year.   I was so hoping that it would work and I tried pushing myself trying to give the medicine time to start working.   By the time I went into the hospital in May, the only way I can describe how I felt is that my body was shutting down at the end of the day.  I could not eat or drink – I would try and it would not stay in my body, at the end of the day heart felt tried and I was so dehydrated  that the palms of my hands and the bottom of feet were rough and chapped.

Due to my own denial and stupidity,  I have put myself in a position that I was scared of in the first place.   This journey that I’m on could have been so different if only I had been more proactive in my health and not in such denial.  So, if you are reading this and you are struggling with any type of health issue, please learn from my stupidity.  Take the so called bull by the horns and learn about it, follow up with your Doctors.  If you are not getting what you need from your current Doctor research, ask and find one that will.  There are support groups out there contact one.   Who better to reach out to then those who are going through it also or who have gone through it.  Yes, there are times that I’m still extremely scared and want to crawl back into the denial, but I can’t and I won’t.  Again, I can’t say this enough, the support that I have from family and my friends is amazing.  I couldn’t do this without them.

Until next time..

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