Coping | IBD | Ostomy
After my last semester of school, I now know my disease will never hold me back. Last December at the age of 19, I had my second small bowel resection. At this time, they also did 3 strictureplasties as well as put in a temporary ileostomy. When I first got my ostomy, I was disgusted by it and highly embarrassed. I forbade my parents to tell anyone that I had an ostomy and spent a lot of time trying to find clothes that would hide my bag. I was worried that my boyfriend would be just as disgusted as I was with the stoma protruding from my abdomen. The odd thing was, my boyfriend didn’t care that I had an ostomy. I slowly began to realize that it was kind of cool to have your intestines protruding from your abdomen, so after having the ostomy for about a month, I started showing my friends my ostomy named, “Luigi.” I was intrigued to find out that most people not only didn’t know what an ostomy was, but when I showed them, they thought it was kind of cool.
My ostomy became extremely high out-put as my Crohn’s activity began to worsen and I was going to the hospital 3 times a week to get 2 liters of IV fluids. To avoid having to get stuck again and again, we had a PICC line put in, and then I really felt like a champion.
At the end of January, I was put in the hospital and my doctor found rampant Crohn’s throughout my entire intestinal tract. He then recommended that I not go back to school, but I wasn’t giving in. If I could survive prior to the hospital, I was definitely going to be going back to school when I got out of the hospital. I spent the whole week arguing with my doctor, and at the end of the week in the hospital, I won and he let me go back to school. I was doing 2 liters of fluids a day in my dorm room and was having home health visit my room to change my PICC dressing and draw blood. I felt like a champion. Instead of feeling sorry for myself, I took the opportunity to be a survivor. I would show off my ostomy and PICC line to my friends and family with an air of pride, for managing to stay in college despite my frequent trips to the hospital and 6 liters of ostomy output.
Despite the tremendous obstacles to finishing school last semester, I stuck with it and finished with a 4.0 GPA. I realized that if I could stay at school while being that sick, I could do anything I wanted to. I could have let my disease hold me back and dropped out of school for the semester, but I am never going to let my disease hold me back no matter how sick I get, and having to deal with an ostomy gave me the confidence to back up that goal!
After this past semester I have made it my goal to share my story in order to help put a face to Crohn’s and stop the stigmatization associated with IBD. I have started blogging (https://notsonormallife.weebly.com) and will continue to share my story in order to help others understand that they too can accomplish thier goals in spite of their disease.
You go girl…some aspects sounds like my daughter strong will to not give up..she too was so sick at college…she has a temporary ileostomy right now…not sure what the future holds but she refuses not to live her life!
I just found out my crohns is active again after 2 years of remission from my first bowel resection. At the same time I got an abscess that is currently draining. The active disease is in my rectum/colon so I am concerned for when the time for surgery comes again as I know in my heart I couldn’t handle an ostomy. I am an RN but it is so different when you are the patient. I know too much and that scares me when surgery is uttered. I find when I am not working I am thinking about this darn disease and get depressed. I don’t want this to get the best of me, but feel very defeated. I feel cheated of a longer remission. I am so happy for you that your so determined, I hope to be that way too. What meds do you take?
I think you’re super brave, and you remind me of myself a few years ago (I have UC, and am in college), but I want to emphasize that if you have to take a break in order to pay more attention to yourself and your health for a little while, you’re not a quitter or a loser. I had to take some time off early in my college career in order to heal up, and I’m happier and healthier today because of it. Taking care of yourself is important and necessary, and it doesn’t make you a loser…
By the time I was to get my ileostomy last year I was begging for it. My life was constant pain. Now, after a Proctocolectomy this year I am proud of being an osomate. My surgeon saved my life and I am WELL. Go girl. Never look back, we all deserve to live without pain and embrace this new way of life. Jeep sharing xxx
I’m so sorry for everything you are going through. I felt the same way about having an ostomy, but if that is the route you have to take you will get through it. I was disgusted with my ostomy, but learned to deal with it even though it meant having to get up every hour during the night!You are stronger than you will ever know and can get through whatever comes your way. A year ago if you would have told me I would be on TPN and bowel rest while at school I would have told you that there is no way I could go that long without eating, but it is what is best for me right now so I am going to do it!
I am currently on prednisone and nightly TPN. I just recently came off Tysabri because is wash’t working and have been on all other Crohns Medication. We are going to try TPN and bowel rest for a couple months 🙂
You are an inspiration. I don’t let Crohns Disease run my life either. I have 2 daughters and a boy friend. I work and travel and spend time with friends and family. I try to live life as normally as possible. I just use the bathroom more then the average person. I think its awesome that you finished shcool and I wish you all the best in life. Regards, Dawn
You are truly an inspiration! You are a strong, brave young woman and you will not going to let anything hold you back. This year I had a resection and ostomy and reversal 6 months later but I learned this from my experience: people with an ostomy are to be supported. respected and applauded. It was one of the most difficult things I’ve ever had to do (I’m a “bit” older than you) BUT it taught me that I was/am a survivor and if I can do that…I can do anything. You have a long life ahead of you…stay strong, accept help when you need it and remember that you are very very brave and no matter what life throws at you, you will not just survive, you will thrive.
I have had CD for 26 years (diagnosed at 14). I have had 4 intestinal resections and 2 strictureplasties. I have tried all meds and the only one working for me is remicade (so far). With God’s grace, I have learned to overcome and live life to the fullest. I have a wonderful husband and daughter who have been very supportive and loving. It took me a while to finish college due to the constant interruptions but I have been practicing as a nurse practitioner in gastroenterology for three years caring for patients with IBD.
You’re impressive! You’ll have a great life and vibe made stronger for have risen to the challenge.
My journey is like yours but began in 1967. I’ve lived with “refractory Crohn’s disease” going on 50 years. If you fight you can have a great life.
We have 3 grown children, 5 grandchildren , successful careers and families etc .all before “biologics”. Hang in there!! It’s tough but you’re tougher.