I’m an actor from the midwest who finally decided to move west to pursue his dream. That, and I was so tired of being cold. However, the ulcerative colitis just had to tag along. Which is great.
When the Clostridium was finally found, I was put on Vancomyacin which killed off the bacterial infection. It also damn near killed my digestive system. I remember strange pains, cramping, bloating. I actually became lactose intolerant and had to chew Dairy-Ease and drink Lactaid milk. (Note: the lactose intolerance seemed to just fade after a year. I’ve never had a problem with it since. That’s just one more tidbit the medical profession can ponder.)
After that, I was fine. Sort of. It sounds overly dramatic but I didn’t feel the same. I had this incredible appetite that seemed unstoppable. If I didn’t eat the second I got hungry, I felt like I was hypoglycemic. That was new. Which was great. But I managed.
Then at 27, the fun started. I went on 2 antibiotics at once. (Health issues.) When they were done running their course, I started noticing blood in my stool. Lots of blood, diarrhea, running to the bathroom, confusion, fear, anxiety, panic, and tears. I didn’t have any insurance but the local hospital did a sigmoidoscopy (I’ve had better times.). I was told by the doctor I had an infection from the double dosage of antibiotics. I was prescribed Sulfasalizine and sent on my way. I took it for 2 weeks (which was how it was prescribed) and was off and running again.
Then at 32, a flare hit. I had health insurance this time. A colonoscopy was done. Ulcerative colitis was diagnosed. I was put on prednisone for the first time. As crazy as it sounds, I slept like a bear while I was on it. I also ate 5 times a day. I also never followed up with the doctor. Why? I don’t know. Once I felt fine after the flare-ups were in remission, I thought I was in the clear. I didn’t get it then. I looked online under symptoms for uc only to discover the same bits of information: diarrhea, blood, mucus, cramping/take these meds/don’t eat these foods/blah. I thought I had it under control.
Finally at 35, it took me down. A flare hit. Prednisone did nothing. I suffered horribly for a month. Lots of blood, running to the bathroom, no sleep, complete exhaustion, mucus, etc. I wound up in the hospital on a TPN pack for a week. I dealt with three different doctors. One really pissed me off. While I was waiting on a gurney during my initial urgent care visit, a specialist came up to me to ask questions.
“What person in your family did you get this from?”
“No one” I said.
“No, no. You got this from someone” she replied.
“No. I didn’t. Divorce, alcoholism, and adultery
run in my family. Ulcerative colitis does not.” I said.
She had no idea who I was, had never even laid eyes on me before and yet she KNEW it was hereditary. (And I did make phone calls…no one on either side of my family has any history of colitis or IBS at all.) It was shortly thereafter I was told if they couldn’t get the flare under control they were g oing to remove my colon. GOING TO REMOVE MY COLON????!!!!! With all the medical knowledge they have the only thing that cures this is some medieval practice of removing your colon???
But I dodged a bullet: I responded to treatment. Didn’t need the surgery. But what really pissed me off? All three of the doctors told me I could eat whatever I wanted. It didn’t matter what I ate because if the uc was going to flare up, it would flare up. So I did.
And I ended up in the hospital again for a week less than a year later. In between hospital stays, they had me on Imuran which my liver hated. Sulfasalizine didn’t seem to really do much either. I was back on pred and gradually tapered off. Before I went in for the second time, another intense flare hit and wouldn’t calm down. I remember a point where I was so low, I thought if I would have started screaming I never would have stopped. It just all started to be too much. I also remember paying $100 for Asacol only to watch it consistanly be flushed down the toilet. My system just didn’t respond. The hospital it was for me. This time I started Remicade infusions.
And I got my life back. Seriously, it was like a miracle. Shortly before I went in though, I discovered the SCD site. I had just started to experiment with it when I got knocked down again. Once I got out, I totally embraced the SCD. Between that and the infusions, I felt better than ever. One major thing: once I removed all gluten and processed items from my diet, those intense appetite cravings I mentioned earlier finally went away. I also started doing Bikram yoga (another miracle).
I’ve never had a lot of intense pain or joint issues or anything like that. The only thing I noticed was after being on the infusions for 5 years was rosacea. I would get an infusion, my skin would look great for 2 weeks then I would break out massively.
After 5 years of Remicade, something happened. A flare hit just two weeks after an infusion. (I was getting them once every 8 weeks.) A blood test was done. It showed my body was creating antibodies against the Remicade. The decision? Increase the dosage and frequency of the Remicade. Which scared the living hell out of me.
Isn’t that like pouring gasoline over a fire?
And what would happen to my immune system?
(I have to say here when I went into the hospital the first time, they did another colonoscopy. “I’ve seen better, I’ve seen worse” the doctor said. After 2 years of Remicade and the diet, when I had my next colonoscopy, I was told on a scale of 1 to 10 (10 being the most severe) my disease was at a 2. I had improved.) But now the infusions were wearing off. I agreed to increase the dosage. I didn’t know what else to do. Also I should note: I stayed working at a job I hated just because of the health insurance. I didn’t move. I looked around, talked to other people about the benefits they had and realized I was lucky. I never paid a dime for either hospital stay or an infusion. Nothing. BUT…I hated everything else about my life.
So while waiting out this flare I had to go back on prednisone. This time my body responded to it. I also discovered L-Glutamine, Vitamin D & fish oil supplements as well as probiotics. All of this…seemed to work. I watched what I ate, exercised, and took these pills as well as the prednisone. I almost didn’t even want to do another infusion that’s how fine felt. And I also knew that was my ticket out. That’s when I decided to risk everything and move out of Wisconsin. I’ve already gone on longer than I wanted to (and thank you so much for reading if you stayed with me) but it would be even longer to tell about everything I was also going through.
So roughly for the last year I have one bowel movement in the morning when I get up, sometimes after breakfast. Once in a while I have two but it’s not consistent. There hasn’t been any blood. So, I got a full checkup, stocked up on prednisone, had another colonoscopy (January 2012) -again, he said there was mild inflammation and I was still at about a 2-, I sold off all my things, quit my jobs, threw my cat in the back of my car, and moved west. I got to California February 3rd. It’s been tough finding employment. Luckily I’m living with my best friend who’s been there with me through everything. And I think I might be getting a flare. It’s only natural since I’ve blown through all my money and have no idea where my next check will be coming from. I’m in the service industry so you can always pick up a gig here and there but my stress level is off the charts at the moment. I have no idea what’s going to happen. Part of me wants to turn around and go back. I fight that feeling a lot right now.
If anyone has any advice or words to throw my way, please do. I’m living in San Diego now. If you’re nearby, I’d love to meet anyone else who’s been suffering or who’s even doing great. And thanks for reading. Peace.