Coping | IBD | Ostomy
Hi everyone! Let me introduce myself, my name is Bella, and I am 24 years old. I was diagnosed with UC in 2007 right on my 19th birthday. I went from being a healthy, happy, bubbly, energetic, athlete college student, to being suddenly very ill basically over night.
At first the medications helped, and I thought ok great, I just have to take some medication and I will be fine. But 6 months later after a trip to Russia I was sick again and the medications weren’t helping. I went through a lot of trials and tribulations. I would try something, it would help briefly, and then it wouldn’t. It felt crazy to me, and I could not, and would not believe this was my life! It felt as if I was on a continuous physical and emotional rollercoaster. I was very thin, weak, ill, and scared. I was depressed, and just wasn’t myself. I hid from the world, I didn’t want anyone to see me, I didn’t even want to see myself! So I pushed everyone I could away. I felt like my life, dreams, goals, and aspirations were slipping way, and my life was pulled out from under me. I didn’t want to be in my own reality, so I would do anything to get out of it. All I really wanted was to be healthy again but since I couldn’t have that, I wanted to sleep, watch TV, and read in peace, anything but to face the fact the my body turned on me and was deteriorating quickly.
Eight months later I took a turn for the worse and I was out of options. The doctors offered me J-pouch surgery, but the way that they explained it to me, it sounded awful and not any better. There were so many possible complications, and chances that I would still be running to the bathroom 10 plus times. Then they would say something like yes we are cutting out a vital organ, but 98% of people are happy with the surgery. That sounded ludicrous to me, how would sitting in the bathroom all day be any different then what I was going through already? After wallowing in self pity for awhile I decided I would refuse to give up! There had to be a way I would be well again! Then I started looking into alternative medicine. I read hundreds of natural health books, and I tried numerous therapies. Finally a few months in, things were looking up. I even moved to Florida, because I felt better in the warm weather climate. Alternative medicine became a passion, and healing myself became a mission. I was up and down again, and off all medications. Over the next 2 years there were times I was doing very well, and times when I was sick again, but never as bad as I was before. Unfortunately it didn’t help me as much as I hoped, and no matter how hard I tried I couldn’t heal a dead colon. So after 4 plus years fighting, I realized no matter what I tried my colon was too far gone to begin with and nothing I did, not even my stubborn determination would rejuvenate it. I finally gave in and decided that since I tried everything else, this had to be my way and that my surgery had to be a success. There was no alternative, I was determined to be a healthy person and this just had to be the answer. I found the best surgeon in NY and set a date for my surgery. My first surgery was set November 29, 2011 and my second was January 31st <
Four months latter, I am so happy and feel extremely lucky! I am not one of those people that can say they are grateful that they went through all this pain, but I can admit that it was one hell of a character building experience! It has made me so much more compassionate, understanding, caring, and an incredibly strong individual. I have been humbled by my experiences and just feel very grateful that I live in a time with modern medicine/surgery and I was given the opportunity to live my life to the fullest! I feel like I am back to my old self again, but even better! I have been playing tennis, skiing, dancing, singing again, and doing everything that I love. Now that I can concentrate on something besides trying to be healthy, I have been putting the pieces of my life back together. I am currently working as a health coach, studying nutrition, and opening up my own business. I hope to help others with IBD and give back in any way I can.
I was dx with UC in 2007 too! I have been up and down as well, currently I’m on no meds and my UC is behaving somewhat. I’m waiting to see a new GI in Sept to see what options I have. I was hospitalized in Oct last year for four days and luckily got back into remission but it’s a struggle for sure to maintain with no meds. Prednisone so far only works for me and I have yet to try remicade. I’m glad you did the surgery and that it helped you. I always worry that’s also in my future!
I a glad you are doing so well Bella. Your story sounds similar to mine. I was diagnosed with CD in 2002 and at first I was fine just popping pills. Then in 2006 I started getting sicker, ended up in the hospital twice in 2008 and developed a fistula in 2009. I have been on different pills and biologics but nothing has helped. I turned to alternative therapy in 2009 to avoid surgery by modifying my diet and using magnets. I just started Tysabri a few months ago and have also added acupuncture and chiropractic adjustments. I don’t know what is helping me but I just got my blood work back yesterday and my inflammation is decreasing, thank God. A few years ago after seeing the effects of nutrition I also decided to study nutrition. I hope to become a Certified Dietician and help people realize how important it is to be healthy. Good luck and God bless.
I’m having pouch surgery in June and I really need to positives and negatives to having a reconstructed large intestine so to speak. And how many times do the majority of people go ? And is it really a better way of life ?