A big thank you to Zoey for sharing my Ulcerative Colitis story on her blog.
My name is Dina and I was diagnosed November, 2009 with severe ulcerative pancolitis. I was sick for many months before a doctor could tell me what exactly was wrong with me. I was passed off from doctor to doctor with just a general diagnosis of chronic Entamoeba histolytica and that it would pass. By the time I saw my new family doctor, I was suffering from severe weakness, abdominal pain, severe diarrhea, frequent bloody BM’s, cramping, anxiety etc etc etc. He immediately sent me for 10 vials of blood work testing me for everything and I was finally told to get a colonoscopy and was diagnosed with severe chronic ulcerative pancolitis. I knew I would never be the same again.
I was put on 20 mg Prednisone and weaning off 5 mg a week along with a medication called Penatasa (mesalamine), which helps reduces inflammation in the bowl, to try and achieve remission.
After a few weeks, I went into full remission (I no longer had any symptoms).
But a little while later the symptoms came back as the mesalamine became less effective in controlling them. My Doctor tried me on a short course of Prednisone tablets to suppress the inflammation but prednisone didn’t do its job this time.
I tried to change my diet and lifestyle. Nothing helped though and finally I gave up trying to be normal.
This illness is really hard to live with but my doctor told me I would have to live with this the rest of life.
I suffered from mild symptoms for two years. My condition was at its worst, when I had another colonoscopy to see if there were any changes in the bowel lining.
My doctor put me on Imuran (azathioprine), a drug used to inhibit the immune response. I went into full remission again but this time for a WHOLE 6 months (THE BEST 6 MONTHS IN MY LIFE).
In April 2012, the colitis flared up massively. I lost a lot of weight, had to stay in bed and I was constantly bleeding. My doctor sent me for blood work and the next day I got a call from my doctor saying to drop everything I was doing and to get to the hospital right away because my hemoglobin came back a 4 out of 15 which meant I had 1/4 of the blood in my body. I was being sent immediately for 4 blood transfusions and an emergency colonoscopy. It was very scary. He explained it to me in very plain terms that I should’ve been dead. Had it been a traumatic injury such as a gunshot wound and I bled out that fast, I would’ve died at a 7 hemoglobin. The only reason I got away with it for so long is because I was bleeding out at a slower pace over a 2 month period of time and my body was trying to compensate for it as much as it could.
I was put on 30 mg of prednisone for a month then weaning off 2.5 mg a week along with penatsa “tablets + suppositories ” , Imuran, very high doses of B12 , vitamin D and Calcium due to my very nasty flare. I can’t honestly say I’ve achieved remission on Prednisone because I’ve always had symptoms.
I ended up on prednisone for almost 9 months while trying to find a treatment that worked for me
In June 2013, my colitis flare was out of control. I got a really bad skin reaction from the prednisone My Doctor suggested Remicade (infliximab) and I was very hopeful. I took four infusions but unfortunately Remicade didn’t help me at all.
I ended up staying in hospital for a whole month, recovering from the attack. I was given high-dose steroids through an intravenous drip, but after two weeks I had to stop because they weren’t working. My doctor came and talked me through the next step – having a surgery.
I was so scared of the idea of having surgery and I decided to seek another medical opinion.
My new doctor told me that my case was very complicated and suggested a therapy with Methotrexate along with 40 mg prednisone.
In November 2013, after two weeks on being on Methotrexate, My left leg was very swollen and I couldn’t move.
I went to the ER and I got diagnosed with chronic deep vein thrombosis (one of the most serious complication of the ulcerative colitis)
I was given heparin injections, prescribed compression stocking and was put on blood thinners which caused me severe internal and rectal bleeding more than once.
My recovery was hard, slow and painful (I remember how hard it was for me to go to the toilet.)
Been on blood thinners for over a year and tried another new therapy for my ulcerative colitis but it just kept getting worse.
My acute episode of ulcerative Colitis severely suppressed my health status with considerable weight loss (35 kg) and impaired physical performance.
My Physical examination and lab works showed reduced health state, poor physical condition, poor nutritional state, dyspnea, sour on tongue, abdominal pain, iron deficiency, Helicobacter positive gastritis, latent hyperthyreosis, tear in the lining of the lower rectum etc etc…
My doctors and surgeon are doing everything they can to get me back on track so I can remove my colon and hopefully get back to being sort of normal.
I am currently taking prednisone and weaning off 5 mg a week. Along with the prednisone, I take Prograf, Imuran, Iron infusion weekly, fluids, steroid enemas and the list goes on…
I don’t know what it feels like to have a good day these days. I am constantly cramping whether having a bowel movement or not and using steroids enemas 4 times daily, rectally due to my extreme inflammation.
This disease is literally a pain in my ass, ruining and attacking every part of my body and every aspect of my life. I’m working hard to beat it and I’ll never give up.
Every struggle in my life has shaped me into the person I am today. I am thankful for the hard times, they make me stronger. I’m so thankful for the people in my life who hasn’t given up on me and puts up with me day in and day out.
It’s true you don’t know what you’ve until it’s gone. SO here’s a message to you all. Please never ever take your health for granted. It can be taken away from you in the blink of an eye.