I was in high school when I was diagnosed with Ulcerative Colitis. It was right before my 18th birthday in January of 2006. I was sick- real sick. I was a stubborn teenager and probably waited longer than I should have to admit there was a problem. To admit that the abnormal amount of bathroom visits, loss of appetite, and pain in my stomach was something more than just “some bad taco bell.” The hospital visit wasn’t a long one. It took about a week of IV fluids and prednisone to get me feeling pretty good again. After a routine colonoscopy it was clear Colitis was the cause. I was young. To hear I had a chronic disease, although upsetting, didn’t really sink in as it would in years to come. The only difference to me now would be I’d have to take a few pills in the morning. So what? I was lucky, well, as lucky as anyone who is told they have a disease that will never go away can be. I got healthy fast and was in remission all the way up until sophomore year of college.
This was flare number two. I remember racing back to my dorm room just barely making it to the bathroom in time. I remember skipping house parties and beer pong games to lay curled up in bed with a cool blue Gatorade and some bad comedy to distract me from the pain digging at my abdomen. It just never got better. I was in a full flare and I am a fighter. Both a blessing and a curse. I’m always so confident I can get myself back to normal on my own. Let me save you the suspense. I was always wrong. I never could. So, I called my brother who conveniently lived 20 minutes from where I went to school – Hofstra University on Long Island, if anyone cares (Go Football). He took me to the hospital. I won’t bore you with the details but it was the same old stuff. Unnecessary hospital tests, IV fluids, terrible food, and a poor state of mind. Eventually, I got healthy enough to continue my life. We added another drug to the mix, 6-MP. Again, the risks were presented, but as a college kid it didn’t really seem important. My most pressing thoughts had more to do with whether or not the Patriots would cover the spread or if I should drink rum or Keystone Light that night. At this point, to me, it was just a few more pills I had to take in the morning. The only last thing I’d like to mention about this flare is that I believe from here on out Prednisone was a drug that became something I had to rely on to keep myself healthy.
I am going to forego talking about the time between that flare and today. I was sick on and off frequently for the next couple of years. Not only was I dealing with small flares of colitis, but the prednisone got to me. There were months where my cheeks blew up like Alvin and the Chipmunks. People would say they noticed but that it didn’t bother them. I looked healthy. Boy, if they only knew. I was hungry all the time. The steroids destroyed my bones (I have osteoporosis in my lower back). Just last year I found a cataract in my right eye. When I would taper off the prednisone, if I did it too fast, I would suffer from withdrawal including awful flu like symptoms. My knees would ache and the pain would be so bad I remember waking up one night and running a hot bath just to sit and ease the pain. Oh, and I had shingles. I am an athletic guy. I had to take off from running and lifting because I could sometimes barely climb the stairs without seeing stars. I think you get it. The medicine was killing me. I couldn’t live like this. Still, surgery never crossed my mind. It was just never an option to me.
In the years leading up to today, here are a list of the drugs we tried, all which failed. This isn’t to say they won’t work for you, remember, everyone’s body is different.
Remicade: This was the most successful of the drugs. I was in remission for almost a year with no Prednisone during this period. The worst part was I was waking up at 5 AM to get to the doctor at 7 to be infused for 2 hours before work every 6 weeks. Who has time for that?
Humira and Entyvio: Both were tried after the Remicade failed but neither ever did the trick.
Let’s summarize. I have exhausted all options. I am off Prednisone now, hesitant to ever start again with the fear of what it might do to me long term that it hasn’t already. It is 2015 – 9 years after my initial diagnosis. I am now living in Myrtle Beach, SC. I am in a bad flare. A really bad flare. The word surgery is mentioned, but not whole-heartedly. I am sad. Depressed really. I can’t keep down food. I am weak and losing weight I can’t afford to lose. I am spending only a few hours at work. Something needs to be done but if you’ve learned anything about me since you began reading, it’s that I am stubborn and strong remember? I can fix this myself. So, let’s substitute the Rum and Coke for some electrolytes and start up House of Cards on Netflix…a little rest can go a long way right? Wrong.
Flared 
I am the mother of a 20year old who has battled UC since the age of 17. He already has had a large amount of colon and intestine removed! He had the J pouch with an ileostomy for two months, they did the reversal and guess what? Still has UC and now they are saying possibly crohns? So this blog is wonderful but I can not read it or type this without balling my eyes out like a big baby!!! So here is what I would like. . a little direction for moms on how to cope with seeing their beautiful, smart, once energetic and happy son, living a life with a chronic and possibly a terminal illness such as this. In the meantime I have to be strong on the inside and in no way, shape, or form let my son see my weakness! Any advice is greatly appreciated!
Mom
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First off, I’m very sorry to hear your son is dealing with this. How frustrating to take on such a major surgery to hear It wasn’t the solution. I’m not a mom… and probably will never be one…;) so I can’t speak to how to tell you how to cope. Hopefully other moms will comment with much better advice, but all I’ll say is hang in there. It’s hard to sit by his side and know there’s nothing you can do to take the pain away- but being a good mom who supports him and is there for him goes a long way. The fact that you made your way to this blog and probably spend several hours searching the web regarding the issue already shows how much you care and love him. He must be a strong kid to be going through such a tough situation. If he ever needs someone to talk to tell him he can reach out. As for you…just be his mother! And we’ll all cross our fingers that they’ll find a cure for this crappy disease.
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