It’s interesting looking back on my life with Colitis. For the past few months I’ve been obsessed with remembering moments and symptoms and comparing notes. I’m not really sure why. Maybe I’m trying to get a handle on a why and how. Why it happened? And how did it get so bad?
Although I don’t remember the very first time I had a single symptom and warning light, I do remember having my first major flare up. It was the day I moved up to San Francisco. It was my first night in my first apartment. I chalked it up to stress and nerves and didn’t tell my mother, who was still with me. I was an adult, I was moving out on my own. I could handle it. I was no longer a teenager and assumed I knew every freakin’ thing. After that, because it didn’t happen all the time, I just assumed it was what I was eating or the stress of being in school.
I still didn’t tell my mother. I didn’t tell my mother until about three years later when I damn near passed out in her arms in her hallway coming out of the bathroom. That night I told her that everyday for almost 9 months I had been feeling faint coming out of the bathroom, blood in my stool, stomach aches, fatigue and migraines. Before that it was quite often that I had been feeling this way. And when she asked me exactly how long I had been feeling like this, I said since college. She asked me San Francisco College or LA College. The look of horror on her face when I explained it started a little before I moved to San Francisco, was unnerving. Why had I waited so long to tell her? Why hadn’t I seen a doctor about this? These were all good questions. Why hadn’t I seen a doctor? Why did I not tell my mother?! How did it get this bad.
What were my symptoms:
1. Bloody stool
2. Chronic Fatigue: as in sleeping hard enough to not hear alarms
3. Insomnia: when I wasn’t nodding off, I was up at random hours during the night in the bathroom or just up!
4. Stomach pains: hard sharp pains that can stop you in your tracks
5. Nausea: When you wake up. After you use the bathroom. Randomly throughout the day. After you eat.
6. Diarrhea: Bloody diarrhea, loose stool and frequent bathroom visits.
7. Massive Weight Loss
8. Dizzy Spells
So we go in and get a diagnosis. And I’m told that any drastic surgeries like colon removal are a long way off and shouldn’t be done until I am done having children. I’m told I won’t have to worry about that for a very long time. My colitis just isn’t that bad. This was over 4 years ago. In that time I’ve worked, had a baby and had my colon removed. My post partum colitis was NOTHING like my pre-pregnancy colitis. I didn’t even know that things like arthritis, red/itchy eyes, knots on my joints, hair falling out, and chronic back pain would come in on top of nausea, bloody stool, frequent bathroom visits, fatigue, dizzy spells, weight loss and loss of appetite. There was no one to tell me how to maintain during pregnancy or post pregnancy because with my Colitis I could not get proper health insurance for myself. So even though I loved my gynecologist she wasn’t very knowledgable about Colitis. She didn’t even know that I had to have a C-Section when giving birth. When my breast milk started to disappear, she suggested a new diet and teas, the thought of a coming flare up didn’t cross her mind. Even my mom thought that my hair loss was post partum loss of hormones, etc. All the normal random things that come up after you pop out another human being. And I scoured the internet again, and no one was talking about it. So there I was lost and killing myself by not treating myself properly. Completely unaware of what was happening to me.
Post Partum Symptoms:
1. Arthritis: Swollen and stiff joints.
2. Knots on my joints: small cysts on all joints
3. Red/Itchy Eyes: One eye will turn red and it feels like you have sand in it. Can be mistaken for pink eye.
4. Hair Falling Out
5. Breast Milk dissipating: Slowly your milk will dry up.
6. Chronic Back Pain
Here I am a stay at home mom with a newborn who I can hardly pick up now and I don’t know what is wrong with me. I don’t have my old symptoms. And one day at my mother’s house I just felt like I couldn’t make another day without being seen. Thank God I did. I was beyond dehydrated and had lost a lot of blood. My Asacol prescription was changed to Colozal, got an Iron fusion and I felt great. Then we get to Texas and I flare up something crazy AGAIN. But this time, I’ve got hot flashes, red skin blotches, and these puss filled cysts on my scalp, butt & armpits. My insomnia was relentless and I suddenly became overwhelmed with depression. Like close myself in my walk in closet, turn off the light and cry until I fell asleep or heard the baby wake up, type of depression. My hair fell out so much that my mother had to cut it extremely short. And I dropped four pants sizes in a matter of four months. I had also started vomiting, almost every time I went to the bathroom, which wasn’t normal. So because I am STILL uninsured because of my deadly disease, I am receiving emergency room care which isn’t maintenance or the same doctor. They were pumping me with steroids, antibiotics, pain killers and saline, then sending me home. It was scary and frustrating! I was sick and tired of being sick and tired! I was sick and tired of feeling guilty for being sick and tired! I felt alone and trapped. I felt guilty. I felt scared. I felt sad. I felt angry. Angry that at a time when I should have been enjoying my life the most I was spending most of my time in my bed or on my toilet. I was young, a new mom and was madly in love…but I wouldn’t even enjoy that because I was too busy trying to over do, for all the things I couldn’t do. It was a crazy cycle!
When my partner and I broke up, I brought Jax here. I suddenly got better. Then I got worse. And worse and worse. I went to the doctor and he immediately sent me to emergency…and well, we know the rest. Now I sit on my bed in my Hello Kitty PJ’s with a full head of curly hair and the only pain I feel is the soreness in my tummy from having had my recent Ileostomy take down. For the past five days I have been able to use the restroom without crying, cursing, almost passing out or throwing up. For the first time in about 7 or 8 years I feel like a normal person. There is no fear or anger or frustration. This whole chapter was literally sewn shut on Saturday Sept. 29th. My life started over on September 29th. So from now on September 29th will be my second birthday. A day of celebration and reflection on having a new life! I got a second chance!
My advice for all you folks out there. Celebrate your life. Don’t give up hope and faith. Work from love and understanding. Don’t sweat the small stuff. And tell someone when you’re sick…with anything. Even if you don’t think it’s a big deal, talk to your parents, partner and/or doctor immediately! Bless you! Now I’m gonna go find an In and Out Burger! LOL!