And the Journey Continues

Introduction:

Hi, my name is Laura and I live in Toronto, Ontario. I’ve had UC for 15 years. I enjoy running, cycling and yoga and love to cook.

My Colitis Story:

I was in my third year of University when I first filled the toilet bowl with blood. I was pretty shocked by it and scared as hell. My GP told me that it was most likely stress and possibly hemorrhoids. I was prescribed some suppositories for my ‘ hemorrhoids’ and told to relax a little. After losing 15 pounds and numerous attempt at trying to get a proper stool sample (at that point I kept waiting for a solid) I was finally referred to a Gastroenterologist. One Sigmoidoscopy later, I was told I had Ulcerative Colitis. I had never even heard of it.

In the beginning, I was prescribed Asacol. I remember that I had to take 8 pills a day. It gave me terrible headaches and crazy gas. I started taking Advil and some form of anit-gas pill to alleviate both. A few months later I was admitted into the hospital. Not for my UC but for pancreatitis. Too much meds. It was very painful, but different from our UC cramps and pain. Two weeks later I left the hospital and stopped taking Asacol and stopped seeing my doctor. My decision. I like to think of this as my UC repression period. Not one of my best choices.

Fast forward 5 years. I’ve pretty much bled the entire time. Not filling the bowl, but always there along with my good friend mucus. My Iron levels and hemoglobin always stayed at safe levels. I had pretty much convinced myself that this was my new normal. Then the joint pain started. Looking back, it’s amazing to me that this is what finally got me to go back to my GI. Not the blood every day. If only I had a time machine.

After a colonoscopy, it was determined that my ulcerative colitis had gotten worse and inhabited more space on the left side of my colon, several inches. I was put on Sulphasalazine, 4 pills a day, and instructed to use a Cortifoam steroid. I pretty much lived this way for the next few years, but again, the bleeding never totally stopped. I had come to think it was okay to bleed a little and I was pretty lucky with the severity of my disease.

In July of 2009, my husband had a work accident. He suffered 2nd and 3rd degree burns to his face, arms and hands. It was an extremely stressful time. He was in the burn unit for a couple weeks and then had to recover at home for 3 months. Thankfully, he fully recovered with scarring to just his arms and a bit on his ears. Watching him go through that experience was the hardest thing I have ever had to do and I guess it manifested in a severe flare. December 31 (That’s right, New Year’s Eve) I was admitted into the hospital for what was the beginning of my 5 week stay. A new nightmare to replace the one I just went through.

I had never had a severe flare, so I handled it all wrong.

 

I waited way too long to go to the hospital.

 

I was going to the bathroom anywhere from 20-30 times a day. I had lost 15 pounds at this point and I couldn’t sleep in my own bed because I needed to be closer to the toilet. I thought I could handle it. My husband tried to get me to go, but I resisted until I could resist no longer. In emergency, they told me one more day and I would have been dead. They started pumping me with fluids. Everything was dangerously low, potassium, sodium, magnesium….I was completely depleted. I was put on IV steroids. They seemed to work at first but then both my husband and I caught the Norwalk virus. It was going around the hospital. Things took a turn for the worse. I dropped down to 94 pounds, and had lost so much blood that I needed my first blood transfusion. Once we filled up the tank I was told it was surgery or Remicade. For me it was a pretty easy decision. Remicade made me well enough to get out of the hospital. The thing with Remicade though, was that after I had weaned off the Prednisone I started getting infusion reactions. You name it, I got it. Not being able to breath (super scary), freezing to the point of uncontrollable teeth chattering and body shaking, itchy rash all over my body, and back spasms where I visibly convulsed in my chair. . I became an all day infusion with infusions of Solu-cortef and benedryl before hand to avoid the reactions. This worked well, except sometimes the benedryl would make me dry heave and then they would give my IV gravol. I was pretty much in a fog all day. The night of the infusion my muscles would ache all over.

In June of 2010 I received my second blood transfusion. I depleted all of my Iron stores from the flare so any blood I continued to lose was not being replaced. I started losing my hair. In the shower as I washed it, it just kept coming out. Luckily I have pretty thick hair, but by the end, my pony tail was about half the size. Around the front, I could see spots where there were little pockets of baldness. At this point I started getting Iron Injections. These bad boys have left me with permanent staining on both of my buttocks. My everyday reminder I guess.

In Feb 2011, I was hospitalized again.

This time, I was smarter

and went to the hospital

in the early stages

and therefore only had a one week stay.

 

It was determined through blood work that I metabolised the Remicade very quickly, so we double the dose. While in hospital, I was on IV steroids, then back on Prednisone again.

By August of 2011, I was experiencing the worst joint pain to date. It was everywhere. In my jaw, shoulders, elbows, wrists, fingers, right hip, left knee and both feet. I could barely walk in the morning or evening the pain was so bad. I had to wash my hair right after work since my wrist wrists were useless early and late. After a going to the bathroom in the morning I had to go into the shower since I couldn’t wipe properly. Ridiculous. It would start 2 weeks after my Remicade infusion and last until I was infused again. I was on the 4 week infusion cycle. I went to my GI when I couldn’t take it anymore and he put me on a 10 day Prednisone cycle to get me through. I did this every month again and again until December. I knew it was supposed to be a one time thing but when the pain started I couldn’t not take the Prednisone. Suffice it to say, my GI was not happy. In hindsight, I think I was suffering from serum sickness.

In December 2011, I stopped Remicade and started Humira. It’s early, but my joint pain has stopped. It so great to have the use of my whole body and be able to exercise and sleep properly again. Unfortunately, it doesn’t seem to be doing a great job in stopping me from bleeding. I’ve just started the SCD diet and am 8 days in. I am really hopeful that this will be the difference for me . I’ve always believed that diet played a huge part and have always been super clean in my eating. Fingers crossed this is the turning point. I’ll keep you posted.

written by Laura

submitted in the Colitis Venting Area