My Colitis Story:
Two weeks go by & I’m getting no relief. I’m waking up every 2 hours at night by this point to run to the bathroom. The over-the-counter medicines seem to hold off the diarrhea for an hour at most, which made working miserable. Then I started losing control of my bowels & was ruining underwear at an alarming rate. My hair was falling out in huge clumps. I was becoming weaker & my mom (a nurse) moved in to help take care of me. She urged me to see a doctor, but I’m stubborn & kept refusing.
Finally on Father’s Day I had enough. I went to see a doctor at an urgent care clinic & he said that I needed to go to the ER. I did. Imagine my shock when I was told that I was 108 lbs!! I’m 5’10” & that’s not healthy for me. I had dropped about 40 lbs in a month! I was very dehydrated & was told that I was anemic. The nurses started fluids on me. Then my blood pressure dropped to something like 78 over 62 & I started setting off alarm bells. About 5 nurses ran in & my mom started screaming, “You’re losing her!” When they got me stabilized, I got a CT scan. That showed that my colon was inflamed. I was admitted to the hospital.
That first not was horrible. My temperature was dangerously close to 104 degrees & I had to sleep with a TON of ice packs. Not that I got much sleep, what with the nurses constantly coming in. I was put in isolation until it could be determined whether or not I had a bacteria that was causing all the diarrhea. I didn’t. I met my new GI doctor & had a sigmoidoscopy. He told me that I had severe, severe Ulcerative Colitis. I was put on Prednisone & I wasn’t noticing any changes, other than ballooning from 108 lbs to 140 lbs in a week. I was in the hospital a week that time.
I went home, still feeling really weak. I basically stayed on the sofa or ran to the bathroom. Those were my days. Then, literally a week later I bolted out of bed one morning. I was losing a LOT of blood. So much that it was all over the bathroom. I screamed for my mom & she came running in. Then I passed out. She caught me so I didn’t hit my head on anything & she called my GI doctor. He said for me to get to the ER & be ready to be admitted.
I got to the ER & they rushed me in. My blood pressure was 68 over 52. My dad came in to visit me & he told me he wanted me to be the first one in our family to make it out alive from this hospital. I told him that I’d do my best. And I was admitted to the hospital again. I had a total of 6 blood transfusions. My mom kept joking with me by saying that I no longer had my own blood in me. I was put on a liquid diet & spent my Fourth of July preparing for my first colonoscopy. If anyone has ever taken Go-Lightly for that, I feel your pain. I couldn’t stomach it & kept throwing it up. I became hysterical & screamed that I’d rather another enema than drink that God-awful stuff. Fortunately my doctor called in some kind of Magnesium drink, which I tolerated.
My colonoscopy didn’t go well. I was so inflamed & had so many ulcers that my doctor couldn’t go all the way. He thought from this test that I had Crohn’s Disease. I had so much bleeding that he said it would take 20 hours to stop it all. I asked if I needed surgery & he said no. I would be starting Remicade though. I was like, “Alright! Let’s do it!” After a week of being in the hospital, I was discharged on a Thursday.
That Monday, I had my first Remicade treatment. I was pretty run-down for a week, but wow! What a difference! Within a few days I no longer had loose stools. I was still going to the bathroom a lot, but at least now it was hard. I then went to see my primary doctor & she was pleased with my results. She then compared my colon to a raw chicken. When you cut it, it just oozes blood. That’s what was going on with my body. I struggled hard not to laugh. A couple days later, I had my follow-up with my GI doctor. After really reviewing my case, he determined that I really had Ulcerative Colitis. Both diseases are so similar, so I’m not surprised that it took a while to diagnose.
I had my second dose of Remicade & within a few days I was going to the bathroom on average 4 times per day — all hard! Still saw some blood, but we’re assuming it’s not just from the hemorrhoids.
Right now I’m on a low-residue, sugar free, lactose-intolerant diet. It sucks. My doctor told me that my digestive system wouldn’t be able to tolerate dairy products, so for a while I’d be lactose-intolerant. So sad, since I had dairy with every meal. I was told that the reason I lost half my hair was because I’m not absorbing vitamins well. So now I’m on Vitamin B-12 to try to stop the hair loss. It’s helping a little.
What’s remission like? I miss normal food & I hope I’m not on this diet for too much longer. I miss having my food taste like something. I lost all the water weight from the Prednisone & am now on Boost to try to gain some weight.
Iron……………….I call it ferocious iron because it makes me constipated
Prednisone (I got weaned off of this)