The Removal and the Beginning of Tish.

I know it has been awhile since I have written anything, but here I go.

In my last blog I stopped my story with me being in the hospital in May of last year. So on May 16, 2017, I was admitted into hospital because my medication was not working and my body was done. The doctors did another colonoscopy on me and basically said there was no improvement from the one in November of 2016. I could continue to try controlling it with medications but I would have to eventually have my colon and rectum removed, in about two years or I could go ahead now with it. I didn’t even hesitate for a minute, told them let’s do this take it out. There was no thinking about it nothing like that, but I was at peace with the decision. I knew I was making the right choice for me. Now don’t get me wrong, during this process after the surgery and the other ones to come, there were doubts and days that I thought I couldn’t and didn’t want to go on.

So on May 25, 2017, I was taken into surgery and Tish was born. This was the 1st step of three surgeries to create a pouch. After this first surgery I felt great ready to go but Tish was not ready. They had to take me back in on the 26th and redo Tish a portion of her was not getting a good blood supply. Wow, the 2nd surgery did a number on me. I would spend from May 16 to July 6, 2017 in the hospital/rehab center. Most of this time was due to the fact that Tish and I didn’t like each other. We were having trouble finding a bagging system that would work. For most the system or bag should be changed every three to four days. Well, I was luck if a got a few hours. We did eventually find a system that if I was I lucky I would get maybe two days. Most of the time I was not that lucky.

I hated Tish! Most days I wanted to die! It didn’t matter that I had this truly amazing support system, I wanted to quit, be done. Although, I say the support system didn’t matter it truly did. I focused on my son, even though he is in his 20’s, I focused on him. I couldn’t be a quitter because of him! My family their love, support and encouragement was awesome! There was one friend that their positive nature and support helped me more than that person knows.

The emotional side of this disease is something that you can’t prepare for. You don’t live what people would consider a normal life. There are stages in which your emotions are all over the place. Changing from I can’t do this to fuck you UC you will not take me down!

I’m not strong! I’m scared!

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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..

My Experience with UC Since 2006.

I was diagnosed with UC in the fall of 2006, at the age of 37.  Looking back I probably started having symptoms during the summer of 2005 but I ignored it because I was scared. My symptoms at that time were bloody stools and a constant feeling of needing to go to the bathroom.

In the fall of 2006, I had a “flare-up” that could not be ignored, the bloody stools, diarrhea, loss of appetite to the point that I could not drink water. I got so bad I was dehydrated and had to go to the hospital, where I was diagnosed with Ulcerative Colitis (UC is an autoimmune disease that affects your large colon and rectum). I was thankful to know what was wrong but I was also so very scared. When the Doctor mention the increased risk of colon cancer and having an ostomy bag my mind just shut down. I didn’t want to hear it. During my time in the hospital, they put me on a high dose of steroids to get the disease under control. My stay in the hospital was approximately 4 weeks.  Finally being released from the hospital but unsure of what to do and scared to find out more. I remember asking my Doctor at the time about the changes that I needed to make – diet and lifestyle. His advice to me was that my body would tell what I could and could not eat and I was to manage my stress. Even today, Doctors are still unsure of what causes UC although they are getting closer. The medicine that was prescribed me gave me severe headaches so we tried a different one and after a month it caused my hair to fall out. So I decided to go back to the first one, the other options were too expensive.  See I had no insurance at the time and the medicine was expensive.  So, I didn’t keep up with my medicine. Please know that I know what a COLOSSAL mistake that was even then. To me, if I wasn’t in a flare-up I wasn’t sick and didn’t have the disease. Talk about DENIAL!!!

So between 2006 and the spring of 2012 if I had a flare-up I would go to my PCP and get put on steroids and take Xanax to come out of the flare. This worked for me or so I thought. One thing that I have learned is just because you may not have any active symptoms it doesn’t mean you are in remission. Towards the end of April of 2012, I ended up in the hospital again with a flare-up, 5 weeks this time. I remember going to the ER before being admitted and the ER Doctor basically telling me I probably had an STD and not UC. The Doctor based this on the fact that I hadn’t had a pelvic exam in a couple of years. I was so insulted at the time, for a Doctor to assume that and not listen to what I was saying. A person with UC or Crohn’s generally knows their body well and knows what is going on with their body. I had a hard time with Doctors this time around because I was uninsured and hadn’t been taking my medicine. Upon being admitted to the hospital I asked for a PICC line instead of an IV line.  Having learned from my first stay that the large amounts of steroids that they would pump through me would end up blowing my IV line.  They refused to put one in and what I said would happen did, so I got my PICC line. Unfortunately, I developed a blood clot in my arm and they had to move the line to a mid-line in my other arm.  Well, it started to look like I was developing a blood clot in that arm also, so they ended up putting a central line in my neck. (I looked like Frankenstein with these tubes coming out of my neck.)  Feeling better, the pain had stopped with no visible signs of blood in my stool. The Doctors were concerned with the blood clot gave me a low dose of blood thinners. Unfortunately, my colon was still full of ulcers. The next time I went to the bathroom it was just pure blood, it scared the hell out of me (this may be TMI but it looked like a bowl full of grape juice).  I know what I did next was EXTREMELY stupid,  I didn’t tell my nurse right away, but I wanted out so bad.  Well, the second time I went it happened again so I told my nurse (sanity and the will to live kicked in).  The nurse put a portable potty next to my bed and I was told to call when I needed to go.  There is no waiting for ten to twenty minutes for help when you have UC.  So the next time I need use the bathroom I called. Help did not come fast enough for me so, my happy butt tried it on my own.  I passed out and ended up on the floor and then in the ICU having to have blood transfusions. This happened twice during this lovely stay.

To this day I still can feel the frustration that I felt because they would not listen to me. I had one Doctor tell me to move into Dallas County so I could go to Parkland for help (because I had no insurance).  I will freely admit that it opened my eyes but still not all the way.  The UC under control, I got out of the hospital just in time to see my son graduate.

I realize how lucky I am to have family and friends that have been there and understand. Everyone does not have this kind of support.  This love and support have truly helped this past year.   Even with this my true driving force is my Son.  Enough for now, until next time.

What is Uclerative Colitis?

Ulcerative Colitis (UC) is a chronic Inflammatory Bowel Disease (IBD) that affects the large intestine (rectum and colon).   UC affects the colon and rectum causing it to become inflamed and may form ulcers. The inflamed tissue is injured causing redness, swelling and pain. UC is limited to the colon and rectum, it can occur in part of rectum and colon or the entire colon. It appears in a continuous pattern and the inflammation occurs in innermost lining of the intestine. Stats show that about 30% of the people in remission will experience a relapse in the next year.

UC also affects other areas of the body and is not just limited to the intestine; it affects the eyes, skin and joints.

Symptoms of UC can range from mild to severe. They may vary over time and from person to person, depending on what part of the large intestine is inflamed and the severity of the inflammation. Due to symptoms being different for people, the best way to assess what a person would be consider a flare-up would be relative to what is “normal” for that person.

Symptoms can include:

  • Abdominal pain/discomfort
  • Blood or pus in stool
  • Fever
  • Weight loss
  • Frequent, recurring diarrhea
  • Fatigue
  • Reduced appetite
  • Tenesmus: A sudden and constant feeling that you have to move your bowels

Mild symptoms could be: Up to 4 loose stools per day, stools may be bloody and mild abdominal pain. Moderate symptoms could be: 4-6 loose stools per day, stools may be bloody, moderate abdominal pain and anemia. Severe symptoms could be: more than 6 bloody loose stools per day and fever, anemia, and rapid heart rate. Very Severe Symptom coming on suddenly with great severity (Fulminant) could be: more than 10 loose stools per day, constant blood in stools, abdominal tenderness/distention, blood transfusion may be a requirement, potentially fatal complications.

There are four different types of UC and demanding on which type you have could determine what type of symptoms you have.

Ulcerative Proctitis – Affects the rectum. Symptoms include rectal bleeding/pain and a feeling of urgency.

Proctosigmoiditis – Affects the rectum and sigmoid colon (lower segment of the colon right about the rectum). Symptoms include bloody diarrhea, pain in lower left side of abdomen and tenesmus.

Left-Sided Colitis – Affects the rectum and extends as far as a bend in the colon near the spleen. Symptoms include bloody diarrhea, pain in the left side of abdomen, loss of appetite and weight loss.

Pan-Ulcerative Colitis – Affects the entire colon. Symptoms include bloody diarrhea, severe abdominal pain, loss of appetite and weight loss.

UC is progressive disease and can be unpredictable. The extent or severity of the disease increasing and over time the symptoms may change in severity or altogether. A person can go through periods of remission or symptoms can return suddenly and without warning. These painful symptoms of UC can lead to complications: Profuse bleeding, Rupture of the bowel, Severe symptoms that do not respond to medication. Along with an increased risk of colon cancer, vitamin and mineral deficiencies.

This is just the type of the iceberg for someone with UC and or Crohn’s. For More information on the Ulcerative Colitis and IBD visit https://www.crohnsandcolitis.com.

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